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In honor of Epilepsy Awareness Day.What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one's story and the strength found in authenticity.Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Our guest this week is Eli Pierce of Aurora, CO who is a customer service representative at Silk Trade, a UK based software company. Eli is the father of four children, including one who is a spastic quadriplegic with cerebral palsy and epilepsy. Eli, and his wife, Cassidy, have been married for 5 years and he is the proud father of four children: Evelyn (14), Elias (11), adopted daughter Annabelle (6) and Ettison (13) who is spastic quadriplegic with Cerebral Palsy and epilepsy. For many years, Eli was a single dad with full custody of his three children from his first marriage. Eli's an overcomer dad. He's overcome a challenging upbringing, a challenging first marriage and the ongoing challenges of fathering four children, including one with profound disability. Eli's commitment to his family is second to none and he serves as a great role model to those within and outside the disability community. More recently Eli has joined the Denver SFN Mastermind Group and is thriving. Learn this and more on the current episode of the SFN Dad to Dad Podcast.Show LinksPhone – (719) 639-1782Email – elishapierce88@gmail.comLinkedIn – https://www.linkedin.com/in/elishapierce/Developmental Pathways in Denver https://www.dpcolo.orgColorado Springs Resource Exchange https://www.tre.orgChildren's of Hospital Colorado https://www.childrenscolorado.orgRegister for the 6th Annual SFN Dads Virthual Conference on May 10, 2025: https://us02web.zoom.us/meeting/register/TLkN_ViJTTqnaK-M8pHPNA After registering, you will receive a confirmation email containing information about joining the meeting.Special Fathers Network -SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/
Think your challenges are holding you back from triathlon? Meet Aditya Mehta from Mumbai, India, a 35 year old endurance athlete who was diagnosed with epilepsy at the age of 4. Despite being told that swimming was too dangerous a risk for him with seizures, he learned how to swim freestyle at 32 years old. He has since gone on to complete triathlons worldwide. His story isn't just inspiring – it's a masterclass in turning limitations into stepping stones for success. And it all started with watching a half marathon in Mumbai. From Spectator to Game-Changer In 2015, Aditya stood on the sidelines of the Standard Chartered half marathon, not knowing that moment would transform his life. With zero running experience and epilepsy as his constant companion, Aditya has since completed multiple 10Ks, marathons, and even a 50k ultra. But he wasn't done yet. Breaking Through the "Impossible" In 2019, Aditya added cycling to his repertoire and, despite being told that swimming was too dangerous a risk for him with seizures, he quite literally took the plunge and learned to swim freestyle in 2022 at 32 years old, adding the final piece to his triathlon puzzle. For Aditya, this wasn't just about completing a race – it was about seeing how far he could challenge his body and shattering preconceptions about what is possible with epilepsy. The Nutrition Game-Changer With the support of his family, swimming coach and doctors, Aditya continued to train but knew he needed a nutrition strategy as unique as his situation. Joining the Triathlon Nutrition Academy has given him the personalised approach to help him fuel his ambitious goals. No more guesswork, no more generic plans – just precise, targeted fuelling strategies that support both his epilepsy and his performance goals. The result? He's now preparing for a Half Ironman in Estonia with a sub-six-hour target in his sights. Beyond Personal Victory Aditya isn't just changing the game for himself – he's reshaping how the world views athletes with epilepsy. Through citywide events and advocacy, he's building a community that turns "you can't" into "watch me." His message is clear: with the right support and strategy, your supposed limitations can become your greatest strengths. If you have challenges that you think are too big, Aditya reminds us that limitations are only set in our minds. Once you let them go, anything is possible. LINKS: Aditya Instagram: https://www.instagram.com/rhythmic.runner/ Download the FREE 5-part audio series The 5 Biggest Nutrition Mistakes Costing You Time on Race Day https://www.dietitianapproved.com/mistakes Join the Triathlon Nutrition Academy: www.dietitianapproved.com/academy Support the TNA Podcast: https://www.dietitianapproved.com/legend Check how well you’re doing when it comes to your nutrition with our 50 step checklist to Triathlon Nutrition Mastery: dietitianapproved.com/checklist Start working on your nutrition now with my Triathlon Nutrition Kickstart course: dietitianapproved.com/kickstart It’s for you if you’re a triathlete and you feel like you’ve got your training under control and you’re ready to layer in your nutrition. It's your warmup on the path to becoming a SUPERCHARGED triathlete – woohoo! Website: www.dietitianapproved.com Instagram: @Dietitian.Approved @triathlonnutritionacademy Facebook: www.facebook.com/DietitianApproved The Triathlon Nutrition Academy is a podcast by Dietitian Approved. All rights reserved.See omnystudio.com/listener for privacy information.
Professor Tony Marson of the University of Liverpool talks to Beth and Sahir about Epilepsy, a neurological disorder characterized by recurrent seizures, which are sudden, abnormal electrical activity in the brain. We discuss the types of epilepsy, what are its causes and how it manifests across time, what the current treatments for epilepsy are and what the future of epilepsy research looks like. This episode is part of our ongoing collaboration with the British Neuroscience Association, Liverpool Neuroscience Group and The Brain Charity.https://www.liverpool.ac.uk/people/anthony-marsonPublic Events run by LNG: https://meetings.bna.org.uk/BYOBLiverpool/BNA Festival of Neuroscience: https://meetings.bna.org.uk/bna2025/ Support the showSupport us and reach out!https://smoothbrainsociety.comhttps://www.patreon.com/SmoothBrainSocietyInstagram: @thesmoothbrainsocietyTikTok: @thesmoothbrainsocietyTwitter/X: @SmoothBrainSocFacebook: @thesmoothbrainsocietyMerch and all other links: Linktreeemail: thesmoothbrainsociety@gmail.com
Torie chats with neurologist Sanja Gluscevic about SUDEP (Sudden Unexpected Death in Epilepsy) - a critical, often avoided topic! Sanja provides statistics and how to minimise risk factors. Sanja emphasises the need for effective communication between clinician and patient and/or caregiver, plus highlights holistic approaches to minimising SUDEP risk, including managing mood and sleep, and the importance of adherence to medication! ------------------------------------------
In lower- and middle-income countries, raising awareness of genetic etiologies in epilepsy and genetic testing options may ultimately shift national priorities toward making genetic testing part of the standard of care. Dr. Parthvi Ravat spoke with Dr. Jo Wilmshurst and Dr. Alina Esterhuizen about initiatives to increase awareness of genetics and genetic testing in epilepsy, including a decision tree model for epilepsy care in resource-restricted settings that has been implemented in Africa.Publication mentioned in the episode:Precision medicine for developmental and epileptic encephalopathies in Africa—strategies for a resource-limited setting Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: podcast@ilae.org.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.
Daniel Amen had found out by doing 83000 brain scans (link at the end):1.) how our psychology alters through a brain injury and aging; 2.) what specific diseases are caused by brain damages!!! 3.) And how to cure brain damages through brain rehabilitation. 1.)That even small brain damages through physical (accident)and psychic traumas in our childhood and adulthood can lead to:A.) All kind of psychology diseases and misbehavior.B.) Epilepsy.2.) That most criminals in the jail have a background of skull traumas that lead to the Crimes they have done. 3.)That dementia starts with the age of 30 years and can be cure through brain rehabilitation.What causes brain damage?1.) Sports like Boxing, American football cause brain injuries. 2.) Too much brain work. We should use equal both sides of our brain. 3.) Brain stroke and brain tumor.4.) Drugs like cigarettes, alcohol, cannabis, leads to brain damages!!!! When the people stop taking drugs for at least 5 years, the brain can heal by itself.5.) Leaky guts. (Blog: Gut-brain connection)Our brain has the ability to heal by itself. Better is to do a specific brain/mind training or brain rehabilitation to cure our brain.Instead to put the people in jail for their crimes heal their brain!!!!With meditation, we can heal our brain, and with the specific Brain Growing Qigong we can rehabilitate and grow our brain. 12 years ago, I began with the specific Brain Growing Qigong from Mantak Chia. And my mind became very creative and much better than ever before. How would it be if you also learn this Qigong?How would it be if this Qigong is easy to learn and fast to make?We charge our brain with sexual energy to grow and rehabilitate our brain.. Males and females are different, do you agree? Ladies first! Females should squeeze their vagina and their anus, but should not press the buttocks muscle.Males should pull up their testicles, ad some tension to their penis like when they urinate or ejaculate and squeeze their anus; they should not press the buttocks muscle. You got it, is this easy? We call this kegel squeeze.Imagine that you are a baby who is sucking milk from the nipple of your mother's breast… when you are sucking milk, you assume that you are sucking the energy from your sex chakra upwards to your brain while you maintain your kegel squeeze. When You breathe in:1.)You suck the energy from your sex center to your crone chakra (brain).2.) You maintain the kegel squeeze.3.) You move your palms from your sex center upwards to your head (crone chakra). Your palms directed upwards, and distance 1 to 2 hands wide from your front side of your body When you breathe out:1.) You touch the tip of your tongue to the roof of your mouth. Exactly as every baby does when suckling milk!!2.) You release your kegel squeeze.3.) You move your palms from your crone chakra downwards to your sex center. Your palms directed downwards, and distance 1 to 2 hands wide from your front side of your body. You can do this Qigong in a standing or sitting position. You should do this exercise 100/day.You can apply this exercise during meditation and everywhere else without the help of your hands.My Video: The psychological results of 83000 brain scans https://youtu.be/srrn8N2cakcMy Audio: https://divinesuccess.net/wp-content/uploads/2021/Podcast.B/The-psychological-results-of-83000-brain-scans.mp3
Neuropsychologist Prof. Gus Baker discusses clinical neuropsychology in relation to epilepsy! He highlights the significant morbidities associated with epilepsy, such as depression and anxiety, and really emphasises the importance of understanding the mental health aspects of epilepsy. Gus and Torie also chat about the role of clinicians in addressing these comorbidities and the need for PWE education and empowerment to improve quality of life! ------------------------------------------
Pediatric epilepsy is a complex condition that affects countless children, but advancements in treatment are paving the way for brighter futures. Join us as Dr. Juliet Knowles, Assistant Professor of Neurology at Stanford University, sheds light on the multifaceted nature of epilepsy in children. In this enlightening discussion, we'll explore the critical differences between seizures and epilepsy, the profound impact of early intervention on neonatal brain development, and the exciting advancements in genetics that promise to transform treatment options. Read Transcript CME Information: https://stanford.cloud-cme.com/medcastepisode102 Claim CE: https://stanford.cloud-cme.com/Form.aspx?FormID=3286
In this two-part series, we sit down with the insightful and deeply compassionate Courtney Homer - a mother, wife, and truth-seeker dedicated to fostering freedom and attunement in her family and community.In PART 1, Courtney shares her powerful personal journey of resolving epilepsy and KCT, exploring the balance between practical steps and perceptual shifts. We dive into the empowering realization that while we can't always control external circumstances, we can shift our perception - and that's where real freedom lies.In PART 2, we explore Courtney's experiences navigating her son's health from a GNM perspective. From resolution stories of food allergies, eczema, ringworm, and an aggressive constellation, Courtney shares how her understanding of GNM has shaped her parenting - especially through the complexities of raising teenagers. We also discuss the art of teaching GNM principles to kids in a way that feels natural and empowering.Both episodes offer a refreshing perspective on embracing life's inevitable challenges - including those we may never fully “resolve.” Courtney's insights remind us that conflict shocks aren't something to fear but an opportunity for growth, expansion, and self-trust.Whether you're a parent, a GNM enthusiast, or someone seeking deeper peace with your own health journey, these episodes are packed with wisdom, warmth, and practical takeaways.Find us on Instagram:Ashlee - @alchemywithashleeAbigail - @ajpuccioniOur personal websites:Ashlee - alchemywithashlee.comAbigail - abigailpuccioni.com
Mike Knox is a standup comedian and the author of "Vivien's Rain." In this unique episode that reveals the perspective of a device end-user, Mike shares his personal journey into the MedTech field through the lens of his daughter's epilepsy and the life-saving (and life-giving!) impact of a vagus nerve stimulator. He discusses the challenges faced before discovering the device, the transformation in his daughter's life post-surgery, and his advocacy work. Mike also touches on the stigma surrounding epilepsy, the importance of compassion, and his career shift from law enforcement to comedy, using humor to inform and inspire others. Guest links: www.MikeKnox.com Charity supported: Save the Children Interested in being a guest on the show or have feedback to share? Email us at theleadingdifference@velentium.com. PRODUCTION CREDITS Host: Lindsey Dinneen Editing: Marketing Wise Producer: Velentium EPISODE TRANSCRIPT Episode 052 - Mike Knox [00:00:00] Lindsey Dinneen: Hi, I'm Lindsey and I'm talking with MedTech industry leaders on how they change lives for a better world. [00:00:09] Diane Bouis: The inventions and technologies are fascinating and so are the people who work with them. [00:00:15] Frank Jaskulke: There was a period of time where I realized, fundamentally, my job was to go hang out with really smart people that are saving lives and then do work that would help them save more lives. [00:00:28] Diane Bouis: I got into the business to save lives and it is incredibly motivating to work with people who are in that same business, saving or improving lives. [00:00:38] Duane Mancini: What better industry than where I get to wake up every day and just save people's lives. [00:00:42] Lindsey Dinneen: These are extraordinary people doing extraordinary work, and this is The Leading Difference. Hello, and welcome back to another episode of The Leading Difference podcast. I'm your host, Lindsey, and I am so excited to introduce you to my guest today, Mike Knox. Mike is a standup comedian and author of the book, "Vivien's Rain," about his daughter's epilepsy and the medical device that saved her life. He is a retired parole agent, and I am so excited that he is joining us today because he has a very unique take on the medical device field from a personal encounter. All right. Well, welcome, Mike. Thank you so much for being here. I'm so excited to speak with you. [00:01:27] Mike Knox: Thank you for having me. [00:01:29] Lindsey Dinneen: Yeah, of course. Well, you come to the medtech field and to medical devices in a very kind of unique pathway, and I'm very excited to dive into that. But before we do, would you mind just sharing a little bit about yourself, your background, and what you're doing today, what led you to today? [00:01:48] Mike Knox: Sure. I'm retired law enforcement and now I'm full time stand up comedian and an actor, much better than law enforcement. And I have a daughter who has epilepsy. She's 17 now. She started having seizures at the age of two. And by the age of eight, she got a vagus nerve stimulator, which basically saved her life. So it's a small implant that's like a -- I'm not supposed to say this-- but it's basically like a pacemaker, but for your brain. So it's a small generator that attaches onto your vagus nerve and sends impulses to interrupt your seizure. So she's now been seizure free for eight years. And I go basically go and I'm an ambassador for the company that makes this product. And I go and talk about this product, which is basically, I mean, it has saved my daughter's life. And not only that, but beyond that, it's allowed her to be get her life back basically because she was pretty much just a little zombie cause she was on so much medication at the time. So really for the past 15 years, it was just my wife and I living day to day as parents just trying, you know, in and out of the hospital with my daughter. So now she's in a great place and that affords me the time to go out and talk. [00:02:54] Lindsey Dinneen: Wow. That's incredible. Okay. So can we go back a little bit and talk about what life was like before this device, before you discovered this device, before all of the changes started happening for the better, but can you just paint a picture of what did daily life look like and how did that go? [00:03:13] Mike Knox: It was waiting for the seizure to happen. And most of them were at night, so it would usually be my wife and I taking turns watching my daughter all night long. And she'd be be on medication, but she'd have break breakthrough seizures. She would have partial seizures, but they would go into grand malls and we'd have to go always to the hospital because that's where the rescue medication was. And then it would be at the hospital, always confusion because they were the hospital that was local, wasn't really trained. And we kind of found out not a lot of hospitals, emergency rooms, were trained for seizures, which seizures have been around 2000 years. So there's a lot of misinformation, a lot of not really good education. And that's where I, as a parent thought, this stuff really needs to change. So that's what my wife and I did was, you know, started small talking to our hospital and just trying to get a policy in place where we could, you know, safely get my kid from here to the hospital. Then as time went by kind of technology caught up and we were able to have a rescue medication at home. But there were times where my daughter flatlined twice. So it was very scary. And it was just like living day to day because we we're in crisis mode and waiting for that next seizure to happen. It really did for us, was that seizure was stalking us, always waiting, we never knew when it was going to happen, kind of narrowed it down to that might be at night or coming out of her sleep when waking up, like on the way to school. But it really held you hostage. You weren't able to, we weren't able to go anywhere. You always had to think of where you were gonna go and plan things out. And your friends and family kind of abandoned you be just because they don't know what's going on. They don't understand what your family's going through. And I think a lot of parents see that also as, people just don't understand what it is you're going through when you have a medical problem. And so, when she did get this device that changed everything. And the number one thing that it did was it finally allowed our family to sleep, which we hadn't been doing for years. I mean, it was really same with my daughter. She wasn't able to sleep. So then she's not able to really concentrate at school. The school didn't understand, and they thought she was just being lazy rather than she has epilepsy. And so it's always there trying to advocate for your child. It's still doing that, still dealing with school things where I'm having to advocate for her. And that's just what you're doing as a parent is trying to do the best for your child. [00:05:24] Lindsey Dinneen: Yeah, absolutely. Oof. Yeah. Thank you for sharing more about that and painting a picture for us. And then, so in your research, in thinking, there's got to be something out there. I would imagine as a parent going, "There's got to be a solution. There's got to be something out there." Did that research eventually lead you to the company that you now help speak about and whatnot? [00:05:45] Mike Knox: Yes. And that was, and I always tell people this too, is don't rely 100 percent on the medical system, meet them halfway and do your research. Cause a lot of it is, it's what I realized is, just a lot of it is failure. It's constantly failing and failing. And we went to different doctors in different hospitals and the insurance would say that it doesn't cover this, but we kind of bypassed the insurance to get to where the doctor that we wanted to. It took us about five years to get a diagnosis, to find out what was happening, to find the right doctor cause there were a lot of horrible doctors. And then you have to understand that, because I never really was in and out of hospitals, and I never really understood what, what the policy, every hospital is different. Every doctor is different and different doctors don't know. We were going to doctors thinking that they knew what epilepsy was, and they didn't. They weren't going to say anything, but they were a primary doctor or they were a specialty doctor. They didn't know what epilepsy was. And so researching and finding out, and then we had read about VNS, Vegas Nerve Simulator. And our doctor at the time had said, "No, it won't work." Well, that wasn't true because it's worked. And a lot of it is the drive is pharmaceuticals and you're kind of experimenting. That one doctor, she was doing fine on one medication and he wanted to change it and that caused her to have all these crazy other seizures. And you got to let go of this kind of grudge that you have, and the kind of anger, which we did for a lot of medical, you kind of got to look positively at the ones who are helping you. I really found out that a lot of the nurses were a lot more helpful, where I always thought the doctor's the one that's going to have the knowledge. And a lot of it was the nurses that had the knowledge, not that the doctors don't, but there were more nurses that were more helpful. And I always, my number one thing was compassion. You as a parent coming in there wanting compassion for your kid. At least that's what I was looking for. [00:07:25] Lindsey Dinneen: Yeah. Yeah, and so okay, so you found this device or you found this technology and you go, "Okay I think maybe this could help my child. The doctor is a little skeptical, but we don't really know the reasons behind that. Maybe they just don't have the experience to understand how it could help. And there's new technology coming out all the time." But so, so that happened. And then what got you to a yes, where you could actually try this and see the impact that it could have for your daughter? [00:07:52] Mike Knox: A lot of it was desperation. We had left one doctor after just years there and kind of figuring out, he has no idea what he's doing, and we can never call him on that. Went to another doctor and what you're doing with epilepsy is you're trying to find out where the seizure is coming from. So they do an EEG, and so they're attaching all these leads to your head and we were in the hospital for eight days the first time. No seizure, you know, you're off the meds. They're trying to induce a seizure, nothing happened. So the new doctor said, "We've got to do the same thing again." It's just exhausting because you're like, "I don't want to put my kid through that." But you have to, so we went through another EEG, caught a seizure, saw that they were coming from three different ways. Cause we were first looking at brain surgery and then her seizure was coming through three different areas of the brain. So now you can't do that. And then that doctor showed us the Vegas Nerve Stimulator, which at the time we had just come to my daughter having this horrible seizure in the hospital. Her recovery was really bad at the time. So I was just overwhelmed with this doctor showing me this small device that looked like a silver dollar and it just was too unbelievable for me at the time, but I knew that we had to do something for my daughter because it was the last resort. We didn't really have we'd run out of all options. It had been years of hospitals and doctors and back and forth. And so really, to me, it was our only option. And It just seemed so unbelievable because it was such a small device and, I think a lot of it was, nobody else had ever talked about it before. And so I had to go back and like look and go, oh, at the time, it'd been around 20 years. And then I also looked at-- I mean, I was a horrible student-- but I looked mathematically at, "Wow, this percentage of-- it's not a cure, but she could have a life that's 80 percent better. Well, I got through college with all C's. I'll take those numbers." And so it was pretty much at the time it was a no brainer just because everything was just so horrible that it was just, it was-- another chance was given to us. We had run out of options. We didn't have any. [00:09:46] Lindsey Dinneen: Yeah, of course. So you take this risk and you go, "Well, you know, if it has the percentage potential of maybe it'll improve her life this drastically," it was worth the risk, I would imagine, from both your perspective and your daughter's perspective. And then, so you do this surgery, you've got this implant. Now what is life like these days? Can she travel? Can she do much more than she was able to do before? [00:10:11] Mike Knox: Life is great. I just want to talk about the surgery itself, was that was another fear. I didn't want to put my daughter through the surgery, how horrible it was. It was so easy. It was, we went in and out. It's an outpatient surgery. It took maybe about an hour. It was so simple and a lot of it was just me as a parent being afraid. I was so afraid of everything watching my kid go through so much that that's what I tell everybody now. It was so simple because she's on her second battery because it needs to be replaced. So the first one lasted almost about eight years. So she's on her second one. And the second time around was even simpler because now they've got, at the time we got ours, I think she was only the eighth, in Los Angeles that got it, so the protocol wasn't in place. Now the protocol is in place. So they'll kind of get you in and out real quick and they all kind of know what it is, where at the time when my daughter first had it they didn't know what it was, so a lot of strides have taken place and now the hospitals know exactly what to do. So it's very simple. Whereas, and I run into a lot of parents that are afraid to give that the surgery and kind of all the things that go along with the surgery. And it's so simple and you never, you don't really. Nobody really knows. Now her life is absolutely wonderful. I mean, she went from not being able to keep up in school to now. Shockingly is cause I was such a horrible student. Gets straight A's and she, I mean, to me, that's the amazing part of, I really saw this device propel her and she was learning, which she couldn't do before because she was having seizures and her You know, she couldn't think, she had brain fog, she had all these kind of things that we all kind of, kind of take for granted that we don't really know, but that's what I mean by she, when she was a zombie at the age of eight was that she just couldn't think because she was having so much brain activity from her seizures, and a lot of times she's having seizures you couldn't even see them just as a parent you would instinctively know, oh, this isn't good, I've got to get her out of these, you know, I've got to take her home or I've got to give her medication. You know, that was another fear of mine too, was that, you know, when she's at school or she's with, you know, I'd come to school a couple of times where she would, I'd had them at school, but the school wasn't aware I found her on the play yard. I found her in the classroom and the school just, none of the schools are equipped because they're by law, they don't have to be. And so what I love about the Vegas nerve simulator is it's her bodyguard. It's with her 24 hours a day. It's somebody watching over her and it allows her just to do the things that we all take for granted. And. You know, like she's able to go to school and I feel comfortable now that she's a teenager, which was another thing was growing up. I want her to have her independence. You know, and now I can feel comfortable where she doesn't text me through the day because she's just a teenager forgets that she has it. And that's the best part to me about it. [00:12:47] Lindsey Dinneen: Yeah, that's incredible. Wow. That's an amazing story. Thank you so much for sharing that. And I'm curious now. So you got to a point where you saw the incredible difference it made in your daughter's life and then of course your family's life. And you're obviously very passionate about this device itself and the company. So now you are helping to spread the word. Can you share more about your advocacy and your work for that? [00:13:11] Mike Knox: I just felt nobody was there to talk to me about it, and so if there's ever any parents or kids that are looking at it, and it's, again, it's just fear of the unknown. So I go and advocate and talk about this great device. I probably get four or five calls. Most people don't want to talk about it, but I probably get four or five calls a year from parents, then they just have all sorts of curious questions. Number one, "Is it going to hurt? Am I going to be able to," one kid asked me the other day, "Am I still going to be able to ski?" And I said, "You're probably going to be able to ski a lot better because you're going to be able to focus on that." And I just tell him basically my story, which going back to, because it's not a cure, you have to wait. And so in the beginning when she first got it, it was about six months of no seizures, which was great. But then she had about five, but the vagus nerve stimulator comes with a magnet. And you can swipe that over your chest and that'll stop the seizures most of the time. And so I saw that progressing. And so I was always kind of writing down stuff and seeing that progress. And it was really at the six month mark where we all slept through the night. And I said, "Oh wow, she's sleeping." She never slept through the night before. She was always a lot of insomnia and stomach pain and I'm just getting up through the night. So she slept like a good 12 hours. And I was like, "Oh wow, that's huge." That, beyond the seizures, is huge. And then there was a morning where she got up, dressed herself, which she could never do; made her lunch, which she never did; made her breakfast, ate breakfast. So while my wife and I were sleeping, she did all this stuff on her own, which she could never do. You always had to tell her, like you literally had to tell her, "Okay, it's time to get up out of the bed," and you'd have to tell her several times. It's not just being a kid. She just wasn't processing. Just like she couldn't process sarcasm or humor, which was very hard for me as a father 'cause I wanted to joke around with my kid. And then she put together this Lego set, read the directions, which she could never do before. So you can really see like, wow, the Vagus Nerve Simulator has got her basically mind on track and she's being able to focus, which she could never do before, always distracted about everything. And then on the way to school, driving her, she was joking with me, and you could see like that spark in her eye that I had seen when she was younger, but hadn't seen in a long, probably six years. And, so beyond the seizures I was like, "Oh wow, this is working." So it really doesn't matter if it's working 100 or not. Something is happening here, and it's for the betterment of my child. And that's what I run into also is, people want that quick fix. They want 100 percent. They just want a cure. That's not what this is, but it's a heck of a lot better than where she was eight years ago, almost 10 years now. That's another thing. It really flies by because she got her first one at the age of eight and then she got her next one at 16. And, that is another positive about it, because life kind of stands still when you're in this crisis from anything medical, and now she's just able to live her life and be a kid. And that's the amazing part about it. [00:15:54] Lindsey Dinneen: Yeah, absolutely. Thank you for sharing. You mentioned early on something that stood out to me is, it's often difficult, I think, when there's a medical diagnosis or some pressing medical issue. It makes it hard for people outside of the family to understand what's going on, and therefore they might feel uncomfortable, and they're not quite sure how to offer to help or to just be there for you. And I'm curious, since you experienced some of that loneliness and distance, going through this difficult time, as a parent and now as an advocate, is there just some general advice you might share with people who might be in a situation where they have a family member or friend struggling with something, but they're not quite sure how to be there for that person? [00:16:40] Mike Knox: Yeah. I think the easiest thing is send them a card and just let them know. 'Cause I think a lot of people are thinking, "Oh, just text, but I don't know what to text them. And I don't want to say like, 'If there's anything I could do,' cause there isn't anything I could do." And that's a lot when you have like with epilepsy, there isn't anything anybody could do. And then people, they're giving you bad advice because they see it on TV. Like I would always get advice about, "Have you tried smoking weed with your kid?" And I'm like, "She's two. Yeah, I'm not going to smoke weed with my kid." So that's why I say a card, because then you can think about what you're going to say, and what I think is nice is, send some food or something or send a gift card, because for my wife and I, we were at home all the time because we couldn't leave. And I think a lot of people didn't realize that. I could not go to the store because if I leave the house, she's going to then have a seizure and I'm not going to be there for the seizure. So it was debilitating because I'm having to watch her 24 hours a day and nobody else understood that. I just say a card so that people at least know you're thinking about them or something like that. And most people just don't do that. I mean, I think people are thinking that people are going to, I think you see on TV shows, people rally behind you or whatever. They don't. I mean, most people are living their life. And for you as the person that's sick or with the family that's sick, just know that the people still love you and they care about you. They're just doing their own thing, but so you have to then understand that and not be upset with them. I'm not upset with my family that just, my family and friends that just abandoned me, you know? And I think that's life also. It's like, you have to repeat yourself over and over again when you're sick or have a sick kid too, and you'll hear the same stuff like, "Oh, I didn't know your kid was sick," even though you told him a thousand times. You know, "I never knew she had epilepsy." And I just think that's human beings. I think you have to have the compassion for other people also. And that's just, I think you go through all those phases in the beginning. You're going through all that grief and regret and all that stuff. And you just have to kind of let it go. Because people don't know how to deal with it, nor did I as a parent. I had no idea. So I had that crash course in dealing with it. But I think we as a family came out the other side of it. So I am very thankful at the outcome. And all I have is gratitude for where we are now, very thankful that she's in a great place. [00:18:40] Lindsey Dinneen: Yeah. And now I'm a little curious. So coming back to you and your story and your career trajectory, which sounds like it's had some fun twists and turns in it over the years, but so how has this experience affected both your professional life when you were in law enforcement, and then now as a comedian, are you able to use some of that platform to help even sort of process and then maybe inspire or educate other people through that? [00:19:09] Mike Knox: Yeah, and I look at it like it's all like with my comedy. I use the epilepsy. It's not making fun of epilepsy. It's informing. And I have people that come up to me and talk to me. "Hey, I have epilepsy. I'm so glad you talked about this because there's such a stigma." And I meet so many people and I'm gonna do it again next week where they didn't want to come because they're afraid, they're getting bullied. They don't know how to talk about it. They don't know how to approach it. A lot of families look down on it. There is a huge stigma for some reason. They're embarrassed that their family member has it or their child or whatever it is. And I really think that starts with state laws. So there was a law that was just passed in California where the schools have to identify seizures and everybody needs to be trained and that passed. And that took about five years and I worked on that. And that's where it starts with trying to educate people and starting with that one on one, you going and talking about it. But I do believe that only laws are going to change things and change people's mind. There's a lot of fake seizure videos that are on YouTube, a lot on TikTok, under the guise of comedy. And I don't agree with that. I don't think it's comedy at all. It's not something that I do. And that's something that I try to educate people on also is, it's not funny. There's people that are dying from epilepsy. And so just getting out there and talking to people. When I get that information, I just write that down and categorize it and see where the problems are. And it all goes back to just misinformation and people not talking about it. And that goes back to the funding and how the world works. Can people make money out of this? That's the only way that they look at it. If I had tons of money, I think you could solve it a lot quicker. I just take it day by day, and who I can talk to, and who I can show compassion to, again, because I think that's what people are looking for. And people just want a voice. They want somebody to talk to and you, and listen to other people. You know, I, that's kind of how I approach it also is listening to other people's stories because they feel unheard. And I think that's important. And through my older jobs and this job. And I think all you can kind of do is laugh at it 'cause it gets so overwhelming and so crazy. And you can't force people to see the way that you see things. So you kind of just got to laugh at it. And I think that's, I think that's healing in a way, a lot of people also, and especially with comedy. I mean, people come there, they know why they're coming there. They're coming there to laugh. A lot of it is they're coming from their horrible life, coming there for an hour or two to get away from it all. So I think it is beneficial to a lot of people. [00:21:27] Lindsey Dinneen: Yeah, absolutely. So what is your hope for the future or your excitement for the future as things continue to progress and more awareness is in place, more legislation to help with responses to this kind of situation? What are you looking forward to or potentially excited about? [00:21:46] Mike Knox: So I just look forward to a day where I don't have to do this anymore. Not going to happen, but I do see a lot of great technology and I see a lot of great strides within the last five to 10 years in the medical field with medical devices. And that's what I hope for. I hope for something, like with the vagus nerve stimulator, they're looking at having a rechargeable battery or not having to replace the battery. And that's what I hope for. And I hope for, that I never have to hear anything about seizures or epilepsy. I know that's not gonna happen, but for my daughter and everybody else I would love to find a cure for it. And anybody that has to deal with any kind of medical device, hopefully, you know, we can put more funding into it and have more cures. And I think we are at a great time for so much success in, I mean, we're living longer, we're living better. These next couple of generations are, I mean, my mom's 88. People are living a lot longer and a lot healthier, and so I guess if I have to be positive, that's what I'm positive about. [00:22:41] Lindsey Dinneen: Yeah. Well, that's good. That's taking the challenge with the opportunity and saying, "Okay, let's see what happens from it." So, you know, it's a step in the right direction for sure. All right. So, pivoting the conversation just for fun. Imagine that you were to be offered a million dollars to teach a masterclass on anything you want. It could be something that you've been working on from your career so far, so a skill set you've developed over time, but it could be completely unrelated. What would you choose to teach and why? [00:23:13] Mike Knox: It would have to be comedy because I've done so much comedy for free. I think that I can understand to teach that to other people and to tell them kind of all the traps of comedy. And it is just, comedy is consistency. It's getting your, you know, five minutes is really four minutes 'cause you're going to have about a minute of laughter if you're funny or not, but getting consistent and embracing the failure of it. And to me, those are the components of comedy because you've got to stand up there. A lot of it is you got to stand up there and embrace the darkness of being up on stage, which a lot of people don't want to do. And then you've got your material and you've got to be able to care. You've got to get new material and carry that material. So if you can, what I've seen, if you can get past that first five minutes and get 10 minutes and 15 minutes and so on, you're going to be okay. And so if I were to get a million dollars, I think that's the masterclass that I could teach. [00:24:00] Lindsey Dinneen: I love it. I love it. Okay. Awesome. And how do you wish to be remembered after you leave this world? [00:24:07] Mike Knox: To me, it's just that I did good. I think that to me, that's important. Do good and be good. ' Cause we see so much negativity all the time and we see so many people that it's like, you know, "Oh, I scammed this person out of that, but they deserved it." And there's kind of like no moral compass. So, when I was a, when I worked in law enforcement before, you know, people that you didn't even think that you touched their lives at all would say, "Hey, thank you. You made me recognize something different." And I think that's what life is all about. You've changed somebody's life or done some sort of kindness. It doesn't even matter. I think that's what a lot of it is these little things in life where you didn't even know that you did something to somebody. And it's that spider web of life where you your life intertwined with somebody. You weren't even aware of what you did but that impacted that person's life so much. And I think that's what we're here for is you're always trying to help other people. I mean, that's the whole point. [00:24:59] Lindsey Dinneen: Yeah, I agree. Yeah. Okay. And then final question. What is one thing that makes you smile every time you see or think about it? [00:25:08] Mike Knox: Definitely seeing the vagus nerve simulator working; anything with my daughter. I think being in crisis for so long, and just like yesterday, my daughter made cinnamon rolls. She likes to bake. So watching her make something from scratch and then having her happy and excited that she made something-- that, that to me is happy. Well, that always makes me smile. So it is those little things that always make me smile. [00:25:35] Lindsey Dinneen: I love that. Excellent. Well, this has been an incredible conversation. Mike, thank you so much for being here. I really appreciate your time and I really appreciate your commitment to sharing the word and being a positive helper in this situation. So if folks would want to get in contact with you, maybe because they have some questions or whatnot, or they want to follow your work, how could they do that? [00:25:59] Mike Knox: Sure. On all platforms, I'm Mike Knox, at Mike Knox comedy, or I have a website at mikeknox. com. [00:26:05] Lindsey Dinneen: Perfect. Excellent. Well, thank you so much again for your time today. We are so honored to be making a donation on your behalf as a thank you for your time today to Save the Children, which works to end the cycle of poverty by ensuring communities have the resources to provide children with a healthy, educational, and safe environment. So thank you so much for choosing that charity to support, and also thank you for continuing to work to change lives for a better world. [00:26:35] Mike Knox: Thank you so much for having me. [00:26:38] Lindsey Dinneen: Of course, absolutely. And thank you also to our listeners for tuning in. And if you're feeling as inspired as I am at the moment, I would love if you would share this episode with a colleague or two, and we will catch you next time. [00:26:53] Ben Trombold: The Leading Difference is brought to you by Velentium. Velentium is a full-service CDMO with 100% in-house capability to design, develop, and manufacture medical devices from class two wearables to class three active implantable medical devices. Velentium specializes in active implantables, leads, programmers, and accessories across a wide range of indications, such as neuromodulation, deep brain stimulation, cardiac management, and diabetes management. Velentium's core competencies include electrical, firmware, and mechanical design, mobile apps, embedded cybersecurity, human factors and usability, automated test systems, systems engineering, and contract manufacturing. Velentium works with clients worldwide, from startups seeking funding to established Fortune 100 companies. Visit velentium.com to explore your next step in medical device development. And we just wish you the most continued success as you work to change lives for a better world.
In this podcast, George Lawson and Hermione Lyall discuss their paper 'Polymicrogyria in infants with symptomatic congenital cytomegalovirus at birth is associated with epilepsy: A retrospective, descriptive cohort study'. The paper is available here: https://doi.org/10.1111/dmcn.16250 Follow DMCN on Podbean for more: https://dmcn.podbean.com/ ___ Watch DMCN Podcasts on YouTube: https://bit.ly/2ONCYiC __ DMCN Journal: Developmental Medicine & Child Neurology (DMCN) has defined the field of paediatric neurology and childhood-onset neurodisability for over 60 years. DMCN disseminates the latest clinical research results globally to enhance the care and improve the lives of disabled children and their families. DMCN Journal - https://onlinelibrary.wiley.com/journal/14698749 ___ Find us on Twitter! @mackeithpress - https://twitter.com/mackeithpress
In this episode, Lyell K. Jones Jr, MD, FAAN, speaks with Valérie Biousse, MD, who served as the guest editor of the Continuum® April 2025 Epilepsy issue. They provide a preview of the issue, which publishes on April 3, 2025. Dr. Jones is the editor-in-chief of Continuum: Lifelong Learning in Neurology® and is a professor of neurology at Mayo Clinic in Rochester, Minnesota. Dr. Biousse is a professor in the departments of neurology and ophthalmology, as well as the Reunette Harris Chair of Ophthalmic Research, at Emory University in Atlanta, Georgia. Additional Resources Read the issue: Neuro-ophthalmology Subscribe to Continuum®: shop.lww.com/Continuum More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @LyellJ Guest: @vbiouss Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about subscribing to the journal, listening to verbatim recordings of the articles, and exclusive access to interviews not featured on the podcast. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum: Lifelong Learning in Neurology. Today, I'm interviewing Dr Valerie Biousse, who recently served as Continuum's guest editor for our latest issue on neuro-ophthalmology. Dr Biousse is a professor in the departments of neurology and ophthalmology at Emory University in Atlanta, Georgia where she's also the Renette Harris Chair of Ophthalmic Research. Dr Biousse, welcome and thank you for joining us today. Why don't you introduce yourself to our listeners? Dr Biousse: In addition to what you just mentioned, I would like to highlight that I have a French accent because I was born and raised and went to medical school in France in Saint Pete Pierre, where I trained as a neurologist. And I even practiced as a stroke neurologist and a headache specialist in the big university in Paris before I decided to move to the US to pursue my passion, which was really neuro-ophthalmology. And at the time, it was impossible to get a license in the US, so I had to repeat a residency and became an ophthalmologist. And this is what led me where I am today. Dr Jones: We're fortunate that you did that. I'm glad you did all that extra work because your contributions to the field have obviously been magnificent, especially this issue, which I think is an incredibly important topic for neurologists. This is why we include it in the rotation of Continuum topics. We all know the saying that the eyes are the windows to the soul, but for neurologists they are also the windows to the brain. The only part of the CNS that's visible to us is the optic disc. I think in spite of that, I think neurologists, our readers and our listeners would acknowledge the importance of the ophthalmic exam and respect the importance of that aspect of the neurologic exam. It's an area that feels challenging to us, and many of us, even with lots of years of experience, don't always feel very comfortable with this. So, it's a really important topic and I'm glad you have edited this. And let's start off with, you know, as you've reviewed all these articles from, really, the pinnacle experts in their specific topics in neuro-ophthalmology, as you were editing this issue, Dr Biousse, what would you say is the one biggest, most important practice-changing message about neuro-ophthalmology you would want to convey to our listeners? Dr Biousse: I think its technology, advances in technology. Without any doubt. The ophthalmology world cannot evaluate a patient anymore without access to fundus photography, optical coherence tomography (OCT) of the back of the eye, not just the optic nerve, but the retina. These advantages in technology have completely changed the way we practice ophthalmology. The same applies to neuro-ophthalmology. And these techniques can really help neurologists do a basic eye exam. Dr Jones: So, let's get right into that. And I'm glad you started with that because I still feel, even though I've done it thousands of times, I still feel a little fumbly and awkward when I'm trying to examine and fundus through an undilated pupil, right? And so, this is I think where technology has helped us quantitate with, as you mentioned, OCT, but I think from an accessibility perspective, I think nonmydriatic fundus photography is a very interesting tool for neurologists and non-neurologists. Tell us how, how does that work and how could neurologists implement that in their practice? Dr Biousse: It's a very important tool that of course neurology should be able to use every day. You can take fundus photographs of the back of the eye without dilating the pupil. The quality of the photographs is usually very good. You only have access to what we call the posterior pole of the eye, so the optic nerves and the macula and the vascular arcade. You don't see the periphery of the retina, but in neuro-ophthalmology or neurology you don't need access to the periphery of the retina, so it doesn't matter. What is remarkable nowadays is that we have access to very highly performing fundus cameras which can take pictures through very, very small pupils or in patients of all ages. You can use it on a two-year-old in a pediatric clinic. You can use it on a much older person who may have a cataract or other eye problems. And what's really new and what this issue highlights is that it's not just that we can take pictures of the back of the eye, we can also perform OCT at the same time using the same camera. So, that's really a complete game changer for neurologists. Dr Jones: And that's extremely helpful. If I'm in a neurology clinic and I would like to use this technology, how would I access that? Do I need special equipment? Can I use my smartphone and an app? How would that work in terms of getting the image but also getting an interpretation of it? Dr Biousse: It all depends on what your ultimate goal is. The fundus cameras, they are like regular cameras or like any technology that would allow you to get brain imaging. The more sophisticated, the better the quality of the image, the more expensive they are. You know, that's the difference between a three-tesla MRI and a head CT. You buy a camera that's more expensive, you're going to have access to much easier cameras and to much higher resolution of images, and therefore you're going to be much happier with the results. So, I always tell people be very careful not to get a tool that is not going to give you the quality of images you need or you may make mistakes. You basically have two big sorts of cameras. You have what we call the tabletop cameras, which is a little more bulky camera, a little more expensive camera that's sitting on the table. The table can be on wheels, so you can move the table to the patient or you can move the patient to the table. That's very convenient in a neurology clinic where most patients are outpatient. It works in the emergency department. It's more difficult at bedside in the hospital. Or you can have a handheld camera, which can be sophisticated, a device that just uses a handheld camera or, as you mentioned, a small camera that you place on your smartphone, or even better, a camera that you can attach to some of the marketed direct ophthalmoscopes. In all situations, you need to be able to transfer those images to your electronic medical records so that you can use them. You can do that with all tabletop cameras, most handheld cameras; you cannot do it with your smartphone. So that gives you an idea of what you can use. So yes, you can have a direct ophthalmoscope with a little camera mounted. This is very inexpensive. It is very useful at bedside for the neurologists who do- who see patients every day, or the resident on call. But if you really want to have a reliable tool in clinic, I always recommend that people buy a tabletop camera that's connected to the electronic medical record. Dr Jones: You know, the photos always make it so much more approachable and accessible than the keyhole view that I get with my direct ophthalmoscope in clinic. And obviously the technology and the tools are part of the story, but also, it's access to the expertise. Right? There are not many neuro-ophthalmologists in the world, and getting access to the experts is a challenge, I think, everywhere, everywhere in the world really. When you think about how technology can expand that---and here I'm getting at AI, which I hesitate to bring up because it feels like we talk about AI a lot---are there tools that you think are here now or will be coming soon that will help clinicians, including neurologists, interpret fundus photography or other neuro-ophthalmologic findings, maybe eye movements, to make that interpretation piece a little more accessible? Dr Biousse: Absolutely. It's going to happen. It's not there yet. OK? I always tell people, AI is very important and it's a big part of our future without any doubt. But to use AI you need pictures. To get pictures, you need a camera. And so I tell people, first you start with the camera, you implement the camera, you incorporate the camera in your electronic medical record. Because if you do that, then the pictures become accessible to everyone, including the ophthalmologist who's maybe offsite and can review the pictures and provide an official interpretation of the pictures to help you. You can also transfer those pictures using secure mode of transfers and not your smartphone text application, which you really don't want to use to transfer medical information. And that's why I insist on the fact that those pictures should definitely appear in the patient's medical record. Otherwise you're going to break HIPAA laws, and that's an issue that comes up quite often. Once you have the pictures in the electronic medical record and once you have the pictures in the camera, you can do three things. You can look at them yourself. And many of my neurology colleagues are very competent at declaring that an optic nerve is normal or an optic nerve is swollen or an optic nerve is pale. And very often that's all we need. You can say, oh, I don't know about that one, and page the ophthalmologist on call, give the patient 's medical record number, have them look at the pictures, provide an interpretation, and that's where you have your answer. And this can be done in real time, live, when you're at bedside, no problem. Or you can use AI as what I call “Diagnostic A.” I always compare it as, imagine if you had a little robot neuro-ophthalmologist in your pocket that you could use at any time by just taking a picture, clicking submit on the AI app. The app will tell you never, it's normal or it's papilledema or it's pale. The app will tell you, the probability of this optic disk of being normal is 99% or the probability that this is papilledema. And when I say papilledema, I mean papilledema from rest intracranial pressure that's incredible as opposed to optic disc edema from an optic neuritis or from an ischemic optic neuropathy. And the app will tell you, the probability that this is papilledema is eighty six percent. The probability that it's normal is zero. The probability that it's another cause of disc edema is whatever. And so, depending on your probability and your brain and your own eyes, because you know how to interpret most fundus photographs, you really can make an immediate diagnosis. So that is not available for clinical use yet because the difficulty with the eye, as you know, is to have it have a deep learning algorithm cleared by the FDA. And that's a real challenge. But many research projects have shown that it can be done. It is very reliable, it works. And we know that such tools can either be either incorporated inside the camera that you use---in which case it's the camera that gives you the answer, which I don't think is the ideal situation because you have one algorithm per camera---or you have the algorithm on the Cloud and your camera immediately transfers in a secure fashion the images to the Cloud and you get your answer that way directly in your electronic medical record. We know it can be done because it happens every day for diabetic retinopathy. Dr Jones: Got it. And so, it'll expand, and obviously there has to be a period of developing trust in it, right? Once it's been validated and it becomes something that people use. And I get the sense that this isn't going to replace the expertise of the people that use these tools or people in neuro-ophthalmology clinics. It really will just augment. Is that a fair statement? Dr Biousse: Absolutely. Similar to what you get when you do an EKG. The EKG machine gives you a tentative interpretation, correct? And when the report is “it's normal,” you really can trust it, it's normal. But when it says it's not normal, this is when you look at it and you ask for a cardiology consultation. That's usually what happens. And so, I really envision such AI tools as, “it's normal,” in which case you don't need a consultation. You don't need to get an ophthalmology consultation to be sure that there is no papilledema in a patient with headache, in a patient with possible cerebrospinal fluid shunt malfunction. You don't need it because if the AI tool tells you it's normal, it's normal. When it's not normal, you still need the expertise of the ophthalmologist or the neuro-ophthalmology. The same applies to the diagnosis of eye movement. So that's a little more difficult to implement because, as you know, to have an AI algorithm, you need to have trained the algorithm with many examples. We have many examples of pathology of the back of the eyes, because that's what we do. We take pictures every day and there are databases of pictures, there are banks of pictures. But how many examples do we have of abnormal line movement in myasthenia, of videos or downbeat nystagmus? You know, even if we pulled all our collections together, we would come up with what, two hundred examples of downbeat nystagmus around the world? That's not enough to train an AI system, and that's why most of the research on eye movement right now is devoted to creating algorithm that mimic abnormal eye movements so that we can make them and then train algorithm which job will be to diagnose the abnormal eye movement. There's an extra difficult step, it's actually quite interesting. But it's going to happen. You would be able to have the patient look at the camera on the computer and get a report about “it's normal” or “the saccades, whatever, are not normal. It's most likely an internucleosomal neuralgia” or “it is downbeat nystagmus.” And that's not, again, science fiction. There are very good groups right now working on this. Dr Jones: That's really fascinating, and that- you anticipated my next question, which is, I think neurologists understand the importance of the ocular motor exam from a localizing perspective, but it's also complex and challenging. And I think that's certainly an area of potential growth. And you make a good point that we need some data to train the models. And until we have these tools, Dr Biousse, that will sort of democratize and provide access through technology to diagnosis and, you know, ultimately management of neuro-ophthalmology disorders, we know that there are gaps in the care of these patients right now in the modern day. In your own practice, in your own work at Emory, what do you see as the biggest gap in practice in caring for these patients? Dr Biousse: I think there is a lack of confidence amongst many neurologists regarding their ability to perform a basic eye exam and provide a reliable report of their finding. And the same applies to most ophthalmologists. And that's very interesting because we have, often, a large cohort of patients who are in between the two specialties and are getting a little bit lost. The ophthalmologist doesn't know what to do. The neurologist usually knows what to do, but he's not completely sure that it's the right thing to do. And that's where the neuro-ophthalmologist comes in. And when you have a neuro-ophthalmologist right there, it's fantastic, okay? We bridge the two specialties, and we often just translate what the ophthalmologist said to the neurologist or what the neurologist said to the ophthalmologist and suddenly everything becomes clear. But unfortunately, there are not enough neuro-ophthalmologists. There is a definite patient access issue even when there is a neuro-ophthalmologist because not only is there a coverage heterogeneity in the country and in the world, but then everybody is too busy to be able to see a patient right away. And so, this gap impairs the quality of patient care. And this is why despite all this technology, despite the future, despite AI, we teach ophthalmologists and neurologists how to do a neuro-op examination, how to use it for localization, how to use it to increase the value and the power of a good neurologic examination so that nothing is missed. And I'm taking a very simple example. Neurologists see patients with headaches all the time. The vast majority of those headaches are benign headaches. 90% of headache patients are either migraine or tension headache or analgesic abuse headaches, but they are not secondary headache that are life threatening or neurologically threatening. If the patient has papilledema, it's a huge retina that really should prompt immediate workup, immediate prevention of vision loss with the help of the ophthalmologist. And unfortunately, that's often delayed because the patients with headaches do not see eye doctors. They see their primary care providers who does not examine the back of the eye, and then they reach neurology sometimes too late. And when the neurologist is comfortable with the ophthalmoscope, then the papilledema is identified. But when the neurologist is not comfortable with the ophthalmoscope, then the patient is either misdiagnosed or sent to an eye care provider who makes the diagnosis. But there is always a delay in care. You know, most patients end up with a correct diagnosis because people know what to do. But the problem is the delay in appropriate care in those patients. And that's where technology is a complete life-changing experience. And, you know, I want to highlight that I am not blaming neurologists for not looking at the back of the eye with a direct ophthalmoscope without pharmacologic dilation of the pupil. It is not possible to do that reliably. The first thing I learned when I transitioned from a neurologist to an ophthalmologist is that no eye care provider ever attempts to look at the back of the eyes without dilating the pupils because it's too hard. Why do we ask neurologists to do it? It's really unfair, correct? And then the ophthalmoscope is such an archaic tool that gives only a very small portion of the back of the eye and is extraordinarily difficult to use. It's really not fair. And so, until we give the appropriate tools to neurologists, I don't think we should complain about neurologists not being reliable when they look at the back of the eye. It's a major issue. Dr Jones: I appreciate you giving us some absolution there. I don't think we would ask neurologists to check reflexes but then not give them a reflex hammer, right? So maybe that's the analogy to not dilating the pupil. So, for you and your practice, in our closing minutes here, Dr Biousse, what's the most rewarding thing for you in neuro-ophthalmology? What do you find most rewarding in the care of these patients? Dr Biousse: Well, I think the most rewarding is the specialty itself. I'm a neurologist at heart. This is where my heart belongs. What's great about those neuro-ophthalmology patients is that it is completely unpredictable. They are unpredictable. They can have anything. I am super specialized because I'm a neuro-ophthalmologist, but I am a general neurologist and I see everything in neurology. So my clinic days are fascinating. I never know what's going to happen. So that's, I think, the most rewarding part of my job as an neuro-ophthalmologist. I'm having fun every day because it's never the same, I never know what's going to happen. But at the same time, we are so useful to those patients. When you use the neuro-ophthalmologic examination, you really can provide exquisite localization of the disease. You're better than the best of the MRIs. And when you know the localization, your differential diagnosis is always right, always correct, and you can really help patients. And then I want to highlight one point that we made sure was covered in this issue of Continuum, which is the symptomatic treatment of patients who have visual disturbances from neurologic disorders. You know, a patient with chronic diplopia is really disabled. A patient with decreased vision cannot function. And being able to treat the diplopia and provide the low vision resources to those patients who do not see well is extremely important for the quality of life of our patients with neurologic disorders. When you don't walk well, if you don't see well, you fall. When you're cognitively impaired, if you don't see well, you are very cognitively impaired. It makes everything worse. When you see double, you cannot function. When you have a homonymous anopia, you should not drive. And so, there is a lot of work in the field of rehabilitation that can greatly enhance the quality of life of those patients. And that really covers the entire field of neurology and is very, very important. Dr Jones: Clearly important work, and very exciting. And your enthusiasm is contagious, Dr Biousse. I can see how much you enjoy this work. And it comes through, I think, in this interview, but I think it also comes through in the articles and the experts that you have. And I'd like to thank you again for joining us today for a great discussion of neuro-ophthalmology. I learned a lot, and hopefully our listeners did too. Dr Biousse: Thank you very much. I really hope you enjoyed this issue. Dr Jones: Again, we've been speaking with Dr Valerie Biousse, guest editor of Continuum's most recent issue on neuro-ophthalmology. Please check it out, and thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
Struggling with epilepsy, TBI, dementia, or depression? Understanding brain function is key to effective treatment. Explore how metabolic health, oxygen levels, and sleep quality impact neurological conditions. Discover why traditional sleep studies might not be enough and how diet especially the ketogenic approach can play a crucial role in brain recovery.Beyond medication, real healing requires the right nutrients, hormonal balance, and lifestyle changes. Learn how regeneration, diet, and active participation can transform brain health. No quick fixes—just science-backed strategies to take control of your well-being. Tune in for actionable insights and a smarter approach to brain health.Highlights of the Podcast00:04 - Brain Function & Disorders01:44 – Epilepsy & Oxygen Levels03:30 – Types of Sleep Apnea05:15 - Diet & Brain Health07:18 - Key Nutrients & Regeneration12:37 - Lifestyle & Compliance13:39 - Final Thoughts
Dr. Lily Wang and Dr. Aakanksha Sriwastwa discuss how nuclear medicine, including PET and SPECT imaging, helps diagnose and treat medically refractory focal epilepsy. Learn how these techniques guide surgical planning and improve patient care. Nuclear Medicine Imaging in Epilepsy. Sriwastwa et al. RadioGraphics 2025; 45(1):e240062.
My guest is Dr. Chris Palmer, M.D., a board-certified psychiatrist and professor at Harvard Medical School. He explains how specific nutrition, exercise, supplement-based, and other factors can improve mitochondrial health and thereby provide relief from adult and childhood ADHD, bipolar disorder, schizophrenia, and symptoms of autism. We discuss mitochondrial biology, whether vaccines can impact inflammation and mitochondrial health, and the potential ramifications. We also review creatine, methylene blue, and urolithin A, as well as the role of B vitamins and iron in treating depression. By the end of this episode, you will understand the powerful link between metabolic health and mental health, and the lifestyle, dietary, and other factors you can leverage to help overcome common mental health challenges and disorders. Read the episode show notes at hubermanlab.com. Thank you to our sponsors AG1: https://drinkag1.com/huberman Our Place: https://fromourplace.com/huberman LMNT: https://drinklmnt.com/huberman Eight Sleep: https://eightsleep.com/huberman Function: https://functionhealth.com/huberman Timestamps 00:00:00 Dr. Chris Palmer 00:02:15 Integrating Metabolic, Mental & Physical Health; Childhood Trauma & Risk 00:10:46 Sponsors: Our Place & LMNT 00:13:44 Depression Causes, Molecule Model?, Neuroplasticity?; Metabolism 00:22:20 Mitochondrial Functions, Stress Response, Mental Health 00:31:09 Sponsors: AG1 & Eight Sleep 00:33:59 Mitochondrial Health & 6 Pillars of Lifestyle Medicine 00:39:38 Stimulants, Mitochondria, Dopamine; Alcohol 00:45:47 Nicotine; Substance Use, Metabolic Health & Disease 00:52:23 Children, Energy & Metabolic Function; Diseases of Aging & Mental Disorders 00:59:18 Sponsor: Function 01:01:06 Diet & Metabolism; Ultra-Processed Foods, Additives, GRAS 01:09:30 Rebellious Spirit, Ultra-Processed Foods & Food Industry Funding 01:19:14 Ketogenic Diet, Epilepsy, Schizophrenia, Bipolar 01:22:52 Ketogenic Diet, Fasting & Mitochondria; Gut Microbiome, Brain Metabolism 01:30:06 Low-Fat Diets; Tool: Occasional Fasts; Ketogenic Diet; Intermittent Fasting 01:38:40 Nutrition Research, Food Industry Lobbyists; Ultra-Processed Foods, Addiction 01:46:55 Creatine & Mitochondrial Health 01:52:34 Methylene Blue & Mitochondria; Serotonin Syndrome 02:02:58 Urolithin A, Mitochondria Function; Supplements & Appropriate Use 02:11:14 Vitamin Deficiencies, Iron Deficiency 02:16:06 Vitamin B12 & Folate Deficiency, Autoimmune Disorders 02:24:48 Mental Illness & Root Causes 02:29:02 Vaccines, Inflammation, Mitochondria, Autism 02:39:17 Neurodevelopmental Disorder Onset & Follow-Up 02:45:31 Vaccines, Autism, Future Research; Mother Obesity & Diabetes 02:51:23 Father Obesity & Autism; Poor Metabolic Health, Blood Biomarkers 02:56:44 Assessing Metabolic Health & Biomarkers; National Institutes of Health (NIH) 03:02:59 Future Directions, Bridging Mental & Physical Health 03:09:27 Zero-Cost Support, YouTube, Spotify & Apple Follow & Reviews, YouTube Feedback, Protocols Book, Social Media, Neural Network Newsletter Disclaimer & Disclosures
Eight answers to help you do better for these patients. Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/1002029?ecd=bdc_podcast_libsyn_mscpedu
After more than two years of work, construction on improvements to the street and sidewalks in City Heights is now completed. Seven vote centers are now open in the South Bay for people to cast their ballot in the District 1 special primary election. Soon, the county's first specialty hospital dedicated to patients with Epilepsy and other conditions will open at Sharp Grossmont in La Mesa. What You Need To Know To Start Your Sunday.
This major social media influencer is talking about it in a HUGE WAY! Jamie Simpson is not afraid of showing it all when it comes to her epilepsy -- and she is encouraging all of us to be bold when sharing our story. From dating, to having seizures in public places and showing us, to her incredible service dog Echo, Jamie lays it all on the line to help others understand the world of epilepsy, from the point of view of someone who has the condition. All in this episode of TALK ABOUT IT with Greg Grunberg. The Talk About It podcast is excited to be sponsored in part by Neurelis. The Talk About It podcast is excited to also be sponsored in part by Seizures Are Signs — dedicated to educating families on the importance of early and specific diagnosis by providing an assessment to help get the conversation started, educational information, stories from families who have found a diagnosis, links to advocacy groups, and more. For more information, go to SeizuresAreSigns.com. Seizures are Signs is made available by Jazz Pharmaceuticals.
Motivation and Inspiration Interviews with Professor of Perseverances
Diana Fannon will share her story about her epilepsy journey and how that shaped who she is and what she is doing today. At the age of 17, she was diagnosed with epilepsy—a life-changing moment that shaped her journey in profound ways. She went on to attend Yale University, navigating challenges and embracing resilience. Over the years, she has transformed these experiences into a mission to inspire and empower others. Website: https://www.disabilityedpros.com/ Facebook: https://www.facebook.com/disability.ed/ Instagram: https://www.instagram.com/disabilityedpros/ Linkedin: https://www.linkedin.com/in/diana-fannon-ed-d/ Youtube: https://www.youtube.com/@disabilityedpros You may also contact him through email, Jamesperduespeaks@comcast.net
Despite advances in epilepsy management, disparities and lack of inclusion of many people with epilepsy are associated with increased morbidity and mortality. Improving awareness and promoting diversity in research participation can advance treatment for underserved populations and improve trust. In this episode, Teshamae Monteith, MD, PhD, FAAN speaks Dave F. Clarke, MBBS, FAES, author of the article “Diversity and Underserved Patient Populations in Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Monteith is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Clarke is the Kozmetsky Family Foundation Endowed Chair of Pediatric Epilepsy and Chief or Comprehensive Pediatric Epilepsy Center, Dell Medical School at the University of Texas at Austin in Austin, Texas. Additional Resources Read the article: Diversity and Underserved Patient Populations in Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @HeadacheMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today I'm interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the February 2025 Continuum issue on epilepsy. So why don't you introduce yourself to our audience? Dr Clarke: Sure. My name is Dr Dave Clarke, as alluded to. I'm presently at the University of Texas in Austin, originating from much farther south. I'm from Antigua, but have been here for quite a while working within the field in epilepsy surgery, but more and more getting involved in outreach, access to care, and equity of healthcare in epilepsy. Dr Monteith: And how did you get involved in this kind of work? Dr Clarke: That's an amazing question. You know, I did it in a bit of a inside out fashion. I initially started working in the field and trying to get access to persons in the Caribbean that didn't have any neurological care or investigative studies, but very quickly realized that persons around the corner here in Texas and wherever I've worked have had the exact same problems, getting access via fiscal or otherwise epilepsy care, or geographically getting access, with so few having neurologists close at hand. Therefore, I started working both on a regional, national, and it transcended to a global scale. Dr Monteith: Wow, so you're just everywhere. Dr Clarke: Well, building bridges. I've found building bridges and helping with knowledge and garnering knowledge, you can expand your reach without actually moving, which is quite helpful. Dr Monteith: Yeah. So why don't you tell us why you think this work is so important in issues of diversity, underserved populations, and of course, access to epilepsy care? Dr Clarke: Sure, not a problem. And I think every vested person in this can give you a different spiel as to why they think it's important. So, I'll add in a few facts pertaining to access, but also tell you about why I think personally that it's not only important, but it will improve care for all and improve what you believe you could do for a patient. Because the sad thing is to have a good outcome in the United States presently, we have over three hundred epilepsy centers, but they have about eight or nine states that don't have any epilepsy centers at all. And even within states themselves, people have to travel up to eight hours, i.e., in Texas, to get adequate epilepsy care. So that's one layer. Even if you have a epilepsy center around the corner, independent of just long wait times, if you have a particular race or ethnicity, we've found out that wait may be even longer or you may be referred to a general practitioner moreso than being referred to an epilepsy center. Then you add in layers of insurance or lack thereof, which is a big concern regardless of who you are; poverty, which is a big concern; and the layers just keep adding more. Culture, etcetera, etcetera. If you could just break down some of those barriers, it has been shown quite a few years ago that once you get to an epilepsy center, you can negate some of those factors. You can actually reduce time to access and you can improve care. So, that's why I'm so passionate about this, because something could potentially be done about it. Dr Monteith: That's cool. So, it sounds like you have some strategies, some strategies for us. Dr Clarke: Indeed. And you know, this is a growth and this is a learning curve for me and will be for others. But I think on a very local, one-to-one scale, the initial strategy I would suggest is you have to be a good listener. Because we don't know how, when, where or why people are coming to us for their concerns. And in order to judge someone, if they may not have had a follow-up visit or they may not have gotten to us after five medications, the onus may not have been on that person. In other words, as we learned when we were in medical school, history is extremely important, but social history, cultural history, that's also just as important when we're trying to create bridges. The second major thing that we have to learn is we can't do this alone. So, without others collaborating with us outside of even our fields, the social worker who will engage, the community worker who will discuss the translator for language; unless you treat those persons with respect and engage with those persons to help you to mitigate problems, you'll not get very far. And then we'll talk about more, but the last thing I'll say now is they have so many organizations out there, the Institute of Medicine or the International League Against Epilepsy or members of the American Epilepsy Society, that have ways, ideas, papers, and articles that can help guide you as to how better mitigate many of these problems. Dr Monteith: Great. So, you already mentioned a lot of things. What are some things that you feel absolutely the reader should take away in reading your article? You mentioned already listening skills, the importance of interdisciplinary work, including social work, and that there are strategies that we can use to help reduce some of this access issues. But give me some of the essential points and then we'll dive in. Dr Clarke: OK. I think first and foremost we have to lay the foundation in my mind and realize what exactly is happening. If you are Native American, of African descent, Hispanic, Latinx, geographically not in a region where care can be delivered, choosing one time to epilepsy surgery may be delayed twice, three, four times that of someone of white descent. If you are within certain regions in the US where they may have eight, nine, ten, fourteen epilepsy centers, you may get to that center within two to three years. But if you're in an area where they have no centers at all, or you live in the Dakotas, it may be very difficult to get to an individual that could provide that care for you. That's very, very basic. But a few things have happened a few years ago and even more recently that can help. COVID created this groundswell of ambulatory engagement and ambulatory care. I think that can help to mitigate time to get into that person and improving access. In saying that, there are many obstacles to that, but that's what we have to work towards: that virtual engagement and virtual care. That would suggest in some instances to some persons that it will take away the one-to-one care that you may get with persons coming to you. But I guarantee that you will not lose patients because of this, because there's too big a vacuum. Only 22% of persons that should actually get to epilepsy centers actually get to epilepsy centers. So, I think we can start with that foundation, and you can go to the article and learn a lot more about what the problems are. Because if you don't know what the problems are, you can't come up with solutions. Dr Monteith: Just give us a few of the most persistent inequities and epilepsy care? Dr Clarke: Time to seeing a patient, very persistent. And that's both a disparity, a deficiency, and an inequity. And if you allow me, I'll just explain the slight but subtle difference. So, we know that time to surgery in epilepsy in persons that need epilepsy surgery can be as long as seventeen years. That's for everyone, so that's a deficiency in care. I just mentioned that some sociodemographic populations may not get the same care as someone else, and that's a disparity between one versus the other. Health equity, whether it be from NIH or any other definition, suggests that you should get equitable care between one person and the other. And that brings in not only medical, medicolegal or potential bias, that we may have one person versus the other. So, there's a breakdown as to those different layers that may occur. And in that I'm telling you what some of the potential differences are. Dr Monteith: And so, you mentioned, it comes up, race and ethnicity being a major issue as well as some of the geographic factors. How does that impact diagnosis and really trying to care for our patients? Dr Clarke: So again, I'm going to this article or going to, even. prior articles. It has been shown by many, and most recently in New Jersey, that if you're black, Hispanic, Latin- Latinx, it takes you greater than two times the time to surgery. Reduced time to surgery significantly increases morbidity. It potentially increases mortality, as has been shown by a colleague of mine presently in Calgary. And independent of that, we don't look at the other things, the other socially related things. Driving, inability to work, inability to be adequately educated, the stigma related to that in various cultures, various countries. So, that deficit not only increased the probability of having seizures, but we have to look at the umbrella as to what it does. It significantly impacts quality of life of that individual and, actually, the individuals around them. Dr Monteith: So, what are some of these drivers, and how can we address them, or at least identify them, in our clinic? Dr Clarke: That's a question that's rather difficult to answer. And not because there aren't ideas about it, but there's actually mitigating those ideas or changing those ideas we're just presently trying to do. Although outlines have been given. So, in about 2013, the federal government suggested outlines to improve access and to reduce these inequities. And I'll just give you a few of them. One of those suggestions was related to language and having more improved and readily available translators. Something simple, and that could actually foster discussions and time to better management. Another suggestion was try to train more persons from underserved populations, persons of color. Reason being, it has been shown in the social sciences and it is known in the medical sciences that, if you speak to a person of similar culture, you tend to have a better rapport, you tend to be more compliant, and that track would move forward, and it reduces bias. Now we don't have that presently, and I'm not sure if we'll have that in the near future, although we're trying. So then, within your centers, if you have trainings on cultural sensitivity, or if you have engagements and lectures about how you can engage persons from different populations, those are just some very simple pearls that can improve care. This has been updated several times with the then-Institute of Medicine in 2012, 2013, they came out with, in my mind, a pretty amazing article---but I'm very biased---in which they outline a number of strategic initiatives that could be taken to improve research, improve clinical care, improve health equity through health services research, to move the field forward, and to improve overall care. They updated this in 2020, and it's a part of the 2030 federal initiative not only for epilepsy, but to improve overarching care. All of this is written in bits and pieces and referenced in the article. To add icing on top, the World Health Organization, through advocacy of neurological groups as well as the International League Against Epilepsy and the AES, came out with the Intersectoral Action Plan on Epilepsy and Other Neurological Diseases, which advocates for parallel improvement in overall global care. And the United States have signed on to it, and that have lit a fire to our member organizations like the American Epilepsy Society, American Academy of Neurology, and others, trying to create initiatives to address this here. I started off by saying this was difficult because, you know, we have debated epilepsy care through 1909 when the International League against Epilepsy was founded, and we have continually come up with ways to try and advance care. But this have been the most difficult and critical because there's social dynamics and social history and societal concerns that have negated us moving forward in this direction. But fortunately, I think we're moving in that direction presently. That's my hope. And the main thing we have to do is try to sustain that. Dr Monteith: So, you talked about the importance of these global initiatives, which is huge, and other sectors outside of neurology. Like for example, technology, you spoke about telemedicine. I think you were referring to telemedicine with COVID. What other technologies that are more specific to the field of epilepsy, some of these monitorings that maybe can be done? Dr Clarke: I was just going to just going to jump on that. Thank you so much for asking. Dr Monteith: I have no disclosures in this field. I think it's important and exciting to think how can we increase access and even access to monitoring some of these technologies. That might be expensive, which is another issue, but…. Dr Clarke: So, the main things in epilepsy diagnosis and management: you want to hear from the patient history, you want to see what the seizures look like, and then you want to find ways in which to monitor those seizures. Hearing from the patient, they have these questionnaires that have been out there, and this is local, regional, global, many of them standardized in English and Spanish. Our colleagues in Boston actually created quite a neat one in English and Spanish that some people are using. Ecuador has one. We have created someone- something analogous. And those questionnaires can be sent out virtually and you can retrieve them. But sometimes seeing is believing. So, video uploads of seizures, especially the cell phone, I think has been management-changing for the field of epilepsy. The thing you have to do however, is do that in a HIPAA-compliant way. And several studies are ongoing. In my mind, one of the better studies here was done on the East Coast, but another similar study, to be unnamed, but again, written out in the articles. When you go into these apps, you can actually type in a history and upload a video, but the feed is not only going to you, it may be going to the primary care physician. So, it not only helps in one way in you educating the patient, but you educate that primary care physician and they become extenders and providers. I must add here my colleagues, because we can't do without them. Arguably in some instances, some of the most important persons to refer patients, that's the APPs, the PAs and the nurse practitioners out there, that help to refer patients and share patients with us. So, that's the video uploads they're seeing. But then the other really cool part that we're doing now is the ambulatory world of EEGs. Ceribell, Zeto, to name of few, in which you could potentially put the EEG leads on persons with or without the EEG technologist wirelessly and utilize the clouds to review the EEGs. It's not perfect just yet, but that person that has to travel eight hours away from me, if I could do that and negate that travel when they don't have money to pay for travel or they have some potential legal issues or insurance-related issues and I could read the EEG, discuss with them via telemedicine their care, it actually improves access significantly. I'm going to throw in one small twist that, again, it's not perfect. We're now trying to monitor via autonomic features, heart rate movement and others, for seizures and alert family members, parents, because although about 100,000 people may be affected with epilepsy, we're talking about 500,000 people who are also affected that are caregivers, affiliates, husbands, wives, etcetera. Just picture it: you have a child, let's say three, four years old and every time they have a seizure- or not every time, but 80% of times when they have a seizure, it alerts you via your watch or it alerts you in your room. It actually gives that child a sense of a bit more freedom. It empowers you to do something about it because you can understand here. It potentially negates significant morbidity. I won't stretch it to say SUDEP, but hopefully the time will come when actually it can prevent not only morbidity, but may prevent death. And I think that's the direction we are going in, to use technology to our benefit, but in a HIPAA-compliant way and in a judicious way in order to make sure that we not only don't overtreat, but at the end of the day, we have the patient as number one, meaning everything is vested towards that patient and do no harm. Dr Monteith: Great. One thing you had mentioned earlier was that there are even some simple approaches, efficiency approaches that we can use to try and optimize care for all in our clinics. Give me what I need to know, or do. Give me what I need to do. Dr Clarke: Yeah, I'll get personal as to what we're trying to do here, if you don't mind. The initial thing we did, we actually audited care and time to care delivery. And then we tried to figure out what we could do to improve that access and time to care, triaging, etcetera. A very, very simple thing that can be done, but you have to look at costs, is to have somebody that actually coordinates getting persons in and out of your center. If you are a neurologist that works in private practice, that could potentially be a nurse being associated directly one-and-one with one of the major centers, a third- or fourth-level center. That coordination is key. Educate your nurses about epilepsy care and what the urgent situations are because it will take away a lot of your headache and your midnight calls because they'll be able to know what to do during the day. Video uploads, as I suggested, regardless of the EMR that you have, figure out a way that a family could potentially send a video to you, because that has significantly helped in reducing investigative studies. Triaging appropriately for us to know what patients we can and cannot see. Extenders has helped me significantly, and that's where I'll end. So, as stated, they had many neurologists and epileptologists, and utilizing appropriately trained nurse practitioners or residents, engaging with them equally, and/or social workers and coordinators, are very helpful. So hopefully that's just some low-hanging fruit that can be done to improve that care. Dr Monteith: So why don't you give us some of your major takeaways to how we can improve epilepsy care for all people? Dr Clarke: I've alluded to some already, but I like counts of threes and fives. So, I think one major thing, which in my mind is a major takeaway, is cultural sensitivity. I don't think that can go too far in improving care of persons with epilepsy. The second thing is, if you see a patient that have tried to adequately use medications and they're still having seizures, please triage them. Please send them to a third- or fourth-level epilepsy center and demand that that third- or fourth-level epilepsy center communicate with you, because that patient will eventually come back and see you. The third thing---I said three---: listen to your patients. Because those patients will actually help and tell you what is needed. And I'm not only talking about listening to them medication-wise. I know we have time constraints, but if you can somehow address some of those social needs of the patients, that will also not only improve care, but negate the multiple calls that you may get from a patient. Dr Monteith: You mentioned a lot already. This is really wonderful. But what I really want to know is what you're most hopeful about. Dr Clarke: I have grandiose hopes, I'll tell you. I'll tell you that from the beginning. My hope is when we look at this in ten years and studies are done to look at equitable care, at least when it comes to race, ethnicity, insurance, we'll be able to minimize, if not end, inequitable care. Very similar to the intersectoral action plan in epilepsy by 2030. I'll tell you something that suggests, and I think it's global and definitely regional, the plan suggests that 90% of persons with epilepsy should know about their epilepsy, 80% of persons with epilepsy should be able to receive appropriate care, and 70% of persons with epilepsy should have adequately controlled epilepsy. 90, 80, 70. If we can get close to that, that would be a significant achievement in my mind. So, when I'm chilling out in my home country on a fishing boat, reading EEGs in ten years, if I can read that, that would have been an achievement that not necessarily I would have achieved, but at least hopefully I would have played a very small part in helping to achieve. That's what I think. Dr Monteith: Awesome. Dr Clarke: I appreciate you asking me that, because I've never said it like that before. In my own mind, it actually helped with clarity. Dr Monteith: I ask great questions. Dr Clarke: There you go. Dr Monteith: Thank you so much. I really- I really appreciate your passion for this area. And the work that you do it's really important, as you mentioned, on a regional, national, and certainly on a global level, important to our patients and even some very simple concepts that we may not always think about on a day-to-day basis. Dr Clarke: Oh, I appreciate it. And you know, I'm always open to ideas. So, if others, including listeners, have ideas, please don't hesitate in reaching out. Dr Monteith: I'm sure you're going to get some messages now. Dr Clarke: Awesome. Thank you so much. Dr Monteith: Thank you. I've been interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
In this episode of The Mind Change Podcast emotional drivers series, Heather McKean unpacks the subconscious patterns that may be driving epilepsy, offering a new perspective on healing. From childhood trauma to internalized pressure, discover the hidden emotional connections behind seizures and how understanding them could be the key to transformation. Don't miss this eye-opening discussion on mind-body healing!
What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.https://linktr.ee/byemmadearlingSend us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice
“Unqualified” to Unstoppable: Cath's Journey Through Skateboarding, Mental Health & Purpose This episode is for anyone who's ever thought, “I'm not ready” or “That space isn't for me.”Cath didn't just break into the world of skateboarding—she smashed down the doors with two months on a board, a load of guts, and just the right amount of delusional confidence (her words, not ours).From applying for a job she didn't feel qualified for, to building a career empowering young girls through skateboarding, Cath's story is a bold reminder that passion and purpose beat perfection every time.We talk mental health, ADHD, epilepsy, self-belief, and how skateboarding has become a tool for healing, growth, and community. There's grit, there's humour, and there's a whole lot of heart.Trust me—whether you've never stepped on a board in your life or you're just looking for a reminder to back yourself—you'll feel this one.
A Thanet teenager has revealed how her life was turned upside down after she was secretly filmed in the shower by her bother-in-law.Andrew Veck, 33, set up his phone to record her in the bathroom - he was later found to also be in possession of indecent images of children.Also in today's podcast, changes to the government's childcare funding due to come into force next month have been slammed by providers in Kent.Eligibility for 15 funded hours extends to children as young as nine months old - and that will rise to 30 hours come September. We've been speaking to Charlotte Roles who's the deputy manager at Dimples Day Nursery near Dartford.A Gravesend mum whose son died from epilepsy has vowed to develop tech in his memory to improve care for other patients.Leo was diagnosed when he was three, but his seizures became more regular and violent during Covid. His mum Emma O'Brien is hoping to raise £750,000 to help others.A new banking hub has opened on Sheppey with more planned for other parts of Kent.There's been a campaign on the island after it lost several high street banks in recent years. Hear from Nick Quin from LINK which decides where hubs should go.Football, and it was a point for Gillingham in league two at the weekend.They held leaders Walsall to a goalless draw at Priestfield - hear from man of the match Glenn Morris and manager John Coleman.
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Nonepileptic events are prevalent and highly disabling, and multiple pathophysiologic mechanisms for these events have been proposed. Multidisciplinary care teams enable the efficient use of individual expertise at different treatment stages to address presentation, risk factors, and comorbidities. In this episode, Kait Nevel, MD, speaks with Adriana C. Bermeo-Ovalle, MD, an author of the article “A Multidisciplinary Approach to Nonepileptic Events,” in the Continuum® February 2025 Epilepsy issue. Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana. Dr. Bermeo-Ovalle is a professor and vice-chair for Faculty Affairs in the Department of Neurological Sciences at Rush University Medical Center in Chicago, Illinois. Additional Resources Read the article: A Multidisciplinary Approach to Nonepileptic Events Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @IUneurodocmom Full episode transcript available here Dr. Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Nevel: Hello, this is Dr Kait Nevel. Today I'm interviewing Dr Adriana Bermeo about her article on a multidisciplinary approach to nonepileptic events, which she wrote with Dr Victor Petron. This article appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast, and please introduce yourself to our audience. Dr Bermeo-Ovalle: Hello Dr Neville, it's a pleasure to be here. Thank you very much for inviting me. My name is Adriana Bermeo and I'm an adult epileptologist at Rush University Medical Center in Chicago, and I am also the codirector of the NEST clinic, which is a treatment clinic for patients with nonepileptic seizures within our level four epilepsy center. Dr Nevel: Wonderful. Well, thank you so much for being here, and I can't wait to talk to you about your article and learn a little bit about NEST, maybe, during our conversation, and how you approach things. To start us off talking about your article today, could you share with us what you think is the most important takeaway from your article for the practicing neurologist? Dr Bermeo-Ovalle: Wonderful. There's some messages that I would like people to get from working with patients with functional neurologic disorders in general. The first one is that functional neurologic disorders are very common in presentation in the neurologic clinic, almost no matter what your practice of self-specialty care is. The second is that for people who treat patients primarily with seizures or epilepsy, they account for between 5 to 10% of our patients in the clinic, but about 30% of our patients in our epilepsy monitoring unit because the seizures typically do not respond to anti-seizure medication management. Also, that in order to diagnose them, you don't need to have a neuropsychological stress already be available for the patient or the clinician. And the most important thing is that there are available treatments for these patients and that there are options that we can offer them for them to have less seizures and to be more integrated to whatever activities they want to get integrated. Dr Nevel: Wonderful. What do you think a practicing neurologist might find surprising after reading your article? Dr Bermeo-Ovalle: I think still many neurologists feel very hopeless when they see patients with these conditions. They do not have very good answers right away for the patients, which is frustrating for the neurologist. And they don't think there's too much they can do to help them other than send them somewhere else, which is very difficult for the neurologist and is crushing to the patients to see these doctors that they're hoping to find answers to and then just find that there's not much to do. But what I want neurologists to know is that we are making strides in our understanding of the condition and that there are effective treatments available. And I hope that after reading this and engaging with this conversation, they will feel curious, even hopeful when they see the next patient in the clinic. Dr Nevel: Yeah, absolutely. I find the history of nonepileptic seizures really interesting and I enjoyed that part of your article. How has our understanding of nonepileptic seizures evolved over the centuries, and how does our current understanding of nonepileptic seizures inform the terminology that we use? Dr Bermeo-Ovalle: Yeah. The way we name things and the way we offer treatment goes along to how we understand things. So, the functional seizures and epileptic seizures were understood in ancient times as possession from the spirits or the demons or the gods, and then treatments were offered to those kind of influences and that continues to happen with functional seizures. So, we go through the era when this was thought to be a women-only condition that was stemming from their reproductive organs and then treatments accordingly were presented. And later on with Charcot and then Freud, they evolved to even conversion disorders, which is one understanding the most conversion disorders, which is one of the frameworks where this condition has been treated with psychotherapy, psychoanalytic psychotherapy. And in our current understanding, we understand functional neurologic disorders in general as a more like a connection, communication network disorder, between areas of the brain that modulate emotional processing and movement control. And therefore, our approach these days is much more geared towards rehabilitation. You know, I think that's the evolution of thinking in many different areas. And as we learn more, we will be acquiring more tools to help our patients. Dr Nevel: Yeah, great. Thanks so much for that answer. Just reading the historical information that you have in your article, you can imagine a lot of stigma with this diagnosis too over time, and that- I think that that's lessening. But I was wondering if you could talk about that a little bit. How do we approach that with our patients and loved ones, any stigma that they might feel or perceive from being diagnosed with nonepileptic seizures? Dr Bermeo-Ovalle: Thank you for asking that question. Stigma is actually an important problem even for people living with epilepsy. There's still a lot of misunderstanding of what epilepsy is and how it affects people, and that people living with epilepsy can live normal, healthy lives and do everything they want to do with appropriate treatment. And if a stigma is still a problem with epilepsy, it is a huge problem for patients living with functional neurologic symptoms in general, but particularly with functional seizures or nonepileptic seizures. Because the stigma in this population is even perpetuated by the very people who are supposed to help them: physicians, primary care doctors, emergency room doctors. Unfortunately, the new understanding of this condition has not gotten to everybody. And these patients are often even blamed for their symptoms and for the consequences of their symptoms and of their seizures in their family members, in their job environment, in their community. Living with that is really, really crushing, right? Even people talk about, a lot about malingering. They come back about secondary gain. I can tell you the patients I see with functional seizures gain nothing from having this condition. They lose, often, a lot. They lose employment, they lose ability to drive. They lose their agency and their ability to function normally in society. I do think that the fight- the fighting of stigma is one that we should do starting from within, starting from the healthcare community into our understanding of what these patients go through and what is causing their symptoms and what can we do to help them. So there's a lot of good work to be done. Dr Nevel: Absolutely. And it starts, like you said, with educating everybody more about nonepileptic seizures and why this happens. The neurobiology, neurophysiology of it that you outlined so nicely in your article, I'm going to encourage the listeners to look at Figure 1 and 4 for some really nice visualization of these really complex things that we're learning a lot about now. And so, if you don't mind for our listeners, kind of going over some of the neurobiology and neurophysiology of nonepileptic seizures and what we're learning about it. Dr Bermeo-Ovalle: Our understanding of the pathophysiology of functional neurologic seizure disorder is in its infancy at this point. The neurobiological processes that integrate emotional regulation and our responses to it, both to internal stimuli and to external stimuli and how they affect our ability to have control over our movement---it's actually amazing that we as neurologists know so little about these very complex processes that the brain do, right? And for many of us this is the reason why we're in neurology, right, to be at the forefront of this understanding of our brain. So, this is in that realm. It is interesting what we have learned, but it's amazing all that we have to learn. There is the clear relationship between risk factors. So, we know patients with functional neurologic symptom disorder and with functional seizures, particularly in many different places in the world with many different beliefs, relationship to their body, to their expression of their body, have this condition no matter how different they are. And also, we know that they have commonalities. For example, traumatic experiences that are usually either very strong traumatic experiences or very pervasive traumatic experiences or recurrent over time of different quality. So, we are in the process of understanding how these traumatic experiences actually inform brain connectivity and brain development that result in this lack of connections between brain areas and the expression of them, and that result in this kind of disorder. I wish I can tell you more about it or that I would understand more about it, but I am just grateful for the work that has been done so that we can understand more and therefore have more to offer to these patients and their families and their communities that are support. Dr Nevel: Yeah, absolutely. That's always the key, and just really exciting that we're starting to understand this better so that we can hopefully treat it better and inform our patients better---and ourselves. Can you talk to us a little bit about the multidisciplinary team approach and taking care of patients with nonepileptic seizures? Who's involved, what does best practice model look like? You have a clinic there, obviously; if you could share with us how your clinic runs in the multidisciplinary approach for care of these patients? Dr Bermeo-Ovalle: The usual experience of patients dealing with functional seizures, because this is a condition that has neurological symptoms and psychiatric symptoms, is that they go to the neurologist and the neurologist does not feel sufficiently able to manage all the psychiatric comorbidities of the condition. So, the patient is sent to psychiatry. The psychiatry really finds themselves very hopeless into handling seizures, which is definitely not their area of expertise, and these patients then being- “ping-ponging” from one to the other, or they are eventually sent to psychotherapy and the psychotherapist doesn't know what they're dealing with. So, we have found with- and we didn't come up with this. We had wonderful support from other institutions who have done- been doing this for a longer time. That bringing all of this specialty together and kind of situating ourselves around the patient so that we can communicate our questions and our discrepancies and our decision between who takes care of what without putting that burden on the patient is the best treatment not only for the patient, who finally feels welcome and not burden, but actually for the team. So that the psychiatrist and the neurologist support the psychotherapist who does the psychotherapy, rehabilitation, mind the program. And we also have the support and the involvement of neuropsychology. So, we have a psychiatrist, a neurologist, social worker, psychotherapist and neuropsychology colleagues. And together we look at the patient from everywhere and we support each other in the treatment of the patient, keeping the patient in the middle and the interest of the patient in the middle. And we have found that that approach has helped our patients the best, but more importantly, makes our job sustainable so that none of us is overburdened with one aspect of the care of the patient and we feel supported from the instances that is not our most comfortable area. So that is one model to do it. There's other models how to do it, but definitely the interdisciplinary care is the way to go so far for the care of patients with functional neurologic symptom disorders and with functional seizures or nonepileptic seizures in particular. Dr Nevel: Yeah, I can see that, that everybody brings their unique expertise and then doesn't feel like they're practicing outside their, like you said, comfort zone or scope of practice. In these clinics---or maybe this happens before the patient gets to this multidisciplinary team---when you've established a diagnosis of nonepileptic seizures, what's your personal approach or style in terms of how you communicate that with the patient and their loved ones? Dr Bermeo-Ovalle: It is important to bring this diagnosis in a positive term. You know, unfortunately the terminology question is still out and there's a lot of teams very invested into how to better characterize this condition and how to- being told that you don't have something is maybe not that satisfying for patients. So, we are still working on that, but we do deliver the diagnosis in positive terms. Like, this is what you have. It's a common condition. It's shared by this many other people in the world. It's a neuropsychiatric disorder and that's why we need the joint or collaborative care from neurology and psychiatry. We know the risk factors and these are the risk factors. You don't have to have all of them in order to have this condition. These are the reasons why we think this is the condition you have. There is coexisting epilepsy and functional seizures as well. We will explore that possibility and if we get to that conclusion, we will treat these two conditions independently and we- our team is able to treat both of them. And we give them the numbers of our own clinic and other similar clinics. And with that we hope that they will be able to get the seizures under better control and back to whatever is important to them. I tell my trainees and my patients that my goals of care for patients with functional seizures are the same as my patients with epileptic seizures, meaning less seizures, less disability, less medications, less side effects, less burden of the disease. And when we communicate it in that way, patients are very, very open and receptive. Dr Nevel: Right. What do you think is a mistake to avoid? I don't know if “mistake” is necessarily the right word, but what's something that we should avoid when evaluating or managing patients with nonepileptic seizures? What's something that you see sometimes, maybe, that you think, we should do that differently? Dr Bermeo-Ovalle: I think the opportunity of engaging with these patients is probably the hardest one. Because neurologists have the credibility, they have the relationship, they have- even if they don't have a multi-disciplinary team all sitting in one room, they probably have some of the pieces of this puzzle that they can bring together by collaborating. So, I think that missing the opportunity, telling the patient, this is not what I do or this is not something that belongs to me, you need to go to a mental health provider only, I think is the hardest one and the most disheartening for patients because our patients come to us just like all patients, with hopes and with some information to share with us so that we can help them make sense of it and have a better way forward. We as neurologists know very well that we don't have an answer to all our patients, and we don't offer zero seizures to any of our patients, right? We offer our collaborative work to understand what is going on and a commitment to walk in the right direction so that we are better every day. And I do think wholeheartedly that that is something that we can offer to patients with functional seizures almost in any environment. Dr Nevel: Yeah, absolutely. And using that multidisciplinary approach and being there with your patient, moving forward in a longitudinal fashion, I can see how that's so important. What do you find most challenging and what do you find most rewarding about caring for patients with nonepileptic seizures? Dr Bermeo-Ovalle: The thing that I find more challenging are the systemic barriers that the system still places. We discuss with the patients, what is the right time to go to the emergency room or not? Because the emergency room may be a triggering environment for patients with functional seizures and it may be a place where not everybody is necessarily attuned to have this conversation. Having said that, I never tell any of my patients not to go to the emergency room because I don't know what's happening with them. As a matter of fact, we're getting a lot of information on high mortality rates in patients with functional seizures, and it's not because of suicide and is probably not related to the seizure. Maybe this is---you know, this is speculation on my part---that is because they get to more severe conditions in other things that are not the functional seizures because they just experienced the healthcare system as very hostile because we are very in many instances. So, navigating that is a little bit difficult, and I try to tell them to have the doctors call me so that I can frame it in a different way and still be there for them. But I can tell you this clinic is the most rewarding clinic of all my clinical activities. And I love with all my heart being an epileptologist and seeing my patients with epilepsy. But the number of times my patients with functional seizures say, nobody had ever explained this to me, nobody had ever validated my experience in front of my family so that I'm not- like, feel guilty myself for having this episode, I can't tell you how many times. And obviously patients who come to the nonepileptic seizure clinic already know that they come to the nonepileptic seizure clinic, so that- you can say it's a selection of patients that are already educated in this condition to come to the clinic. But I would love everybody to know managing this population can be enormously, enormously satisfying and rewarding. Dr Nevel: Especially for, I imagine, patients who have been in and out of the ER, in and out of the hospital, or seen multiple providers and make their way to you. And you're able to explain it in a way that makes sense and hopefully reduces some of that stigma maybe that they have been feeling. Dr Bermeo-Ovalle: And along with that, iatrogenic interventions, unnecessary intubations, unnecessary ICUs; like, so much. And I think, I have no superpower to do that other than understanding this condition in a different way. And by I, I mean all the providers, because I'm not alone in this. There's many, many people doing excellent work in this state. And we just need to be more. Dr Nevel: Yeah, sure. Absolutely. So, on that note, what's next in research, or what do you think will be the next big thing? What's on the horizon in this area? Dr Bermeo-Ovalle: I think the community in the functional neurologic disorder community is really hopeful that more understanding into the neurobiology of this condition will bring more people over and more neurologists willing to take it on. There was an invitation from the NIH, I think, about four or five years ago to submit proposals for research in this area in particular. So, all of those studies must be ongoing. I'm much more a clinician than a researcher myself, but I am looking forward to what all of that is going to mean for our patients. And for- I think there's other opportunities in that further understanding of the clinical manifestations of many other conditions, and for our understanding of our relationship with our patients. I feel we are more attuned to align with a disease that, when the experience of the patient- and with a disease like this, a condition like this one, we have to engage with the personal experience of the patient. What I mean by that is that we are more likely to say, I'm an epileptologist, I'm an MS doctor, you know, and we engage with that condition. This condition, like, just makes us engaging with the symptom and with the experience of the person. And I think that's a different frame that is real and rounded into the relationship with our patients. So, I think there's so much that we can learn that can change practice in the future. Dr Nevel: Yeah. And as your article, you know, outlines, and you've outlined today during our discussion, that- how important this is for the future, that we treat these patients and help them as much as we can, that comes with understanding the condition better, because wow, I was really surprised reading your article. The mortality associated with this, the healthcare costs, how many people it affects, was just very shocking to me. So, I mean, this is a really important topic, obviously, and something that we can continue to do better in. Wonderful. Well, thank you so much. It's been really great talking to you today. Dr Bermeo-Ovalle: Thank you, Katie, I appreciate it too. Dr Nevel: So again, today I've been interviewing Dr Adriana Bermeo about her article on a multidisciplinary approach to nonepileptic events, which she wrote with Dr Victor Petron. This article appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
Pediatric Insights: Advances and Innovations with Children’s Health
Magnetoencephalography (MEG) is advance neuroimaging that maps brain activity for targeted epilepsy care. Children's Health's Comprehensive Epilepsy Center is one of the few centers in North Texas offering MEG. Learn how this tool is transforming outcomes for children with complex, drug-resistant epilepsy.
Sleep takes up nearly a third of a patient's life, yet its importance to mental health outcomes has been drastically understated in therapeutic conversations. Dr. Myrtle Jeroudi, a neurologist at The Menninger Clinic, weighs in on how deeply intertwined sleep disruption is to mental health disorders and why asking the right questions regarding sleep is a crucial step in clinical assessments. A patient's disrupted sleep habits often signal deeper disturbances and, if left untreated, can lead to worsening symptoms. Early sleep intervention in treatment can lead to better sleep hygiene and habits, potentially eliminating the need for medication-based intervention. As more and more individuals seeking mental health care report sleep issues nationwide, Dr. Jeroudi stresses the need for clinicians to perform robust sleep assessments for better therapeutic outcomes and improved long-term health. “When you don't sleep well, your mood is going to be impacted, but the way we've understood this relationship has changed to be bi-directional, where one affects the other,” notes Dr. Jeroudi. “So, if you have depression or anxiety, you're not getting good sleep. And when you have those bad nights of sleep or poor quality of sleep, it's going to impact how severe your mood disorder is too.” Dr. Myrtle Jeroudi, MD, is a staff neurologist with the Menninger Clinic's Sleep Medicine Service and is an assistant professor in the Menninger Department of Psychiatry & Behavioral Sciences at Baylor College of Medicine. She is board certified in neurology, clinical neurophysiology and sleep medicine. Her research has been published in peer-reviewed journals that include the Journal of Neurotrauma and Epilepsia and Seizure: European Journal of Epilepsy. Dr. Jeroudi earned her bachelor's degrees in biology and medicine and society from Washington University in St. Louis and her medical degree from UT Southwestern Medical School. Follow The Menninger Clinic on Twitter, Facebook, Instagram and LinkedIn to stay up to date on new Mind Dive episodes. To submit a topic for discussion, email podcast@menninger.edu. If you are a new or regular listener, please leave us a review on your favorite listening platform! Visit The Menninger Clinic website to learn more about The Menninger Clinic's research and leadership role in mental health.
Folic acid supplementation is recommended for all women with epilepsy who may become pregnant. However, there is no agreed-upon dose for women with epilepsy taking antiseizure medication, and there may be risks of high-dose (>1 mg/day) folic acid supplementation. Dr. Bruna Nucera spoke with Dr. Marte Helene Bjørk about the risks and benefits of folic acid supplementation and what this means for pregnant women with epilepsy. Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: podcast@ilae.org.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.
Despite epilepsy being the fourth most common neurological condition, affecting one in twenty-six people globally, there's a widespread lack of awareness surrounding this disability. This is in large part due to its low visibility in daily life. Many individuals living with epilepsy exhibit little to no visible symptoms that would signal their epilepsy to the people around them. Such is the case with the two guests on this week's program, Hanna Wight and Mary Cadd. When most people think of a seizure, they typically associate it with what is called a “Grand Mal Seizure,” which involves a complete loss of consciousness and motor control. However, as we explore in this program, seizures and other epileptic events affect individuals in a myriad of ways. In this conversation, we explore how Hanna and Mary navigate their personal and professional lives while living with Epilepsy. This condition affects relationships, work, driving, and many other aspects of our guests' daily lives. Mary and Hanna both advocate for increased empathy and awareness of this disability. It is important for the public to know how to respond effectively while being non-intrusive when someone has a seizure. This program was hosted and produced by Jacob Stanton with audio editing by Denny Daughters and Dominick Trevethan. Mary Cadd Hanna Wight The post Epilepsy Enlightenment – Pushing Limits – March 14, 2025 appeared first on KPFA.
On this episode of Today's Your Day Podcast, Tedi welcomes special guest Cathy Blatnik, who serves on the Mid-Michigan Autism Association's Board of Directors as its Treasurer and co-owns a business with her son Dominic called Baked Goods by Dominic. Cathy shares with us how she and her husband Larry persevered when learning their 20-year-old son, Dominic, was diagnosed with Autism, ADHD, Anxiety Disorder, Epilepsy along with an Intellectual Disability. Cathy tells Tedi it was a lot of trial and error, as 20-years ago there was not much information available about Autism and ADHD. Cathy shares with us why her role as a board member and community activist are so important to her and how it can help make a difference for so many. This is a great conversation, one you def do not want to miss. Contact Information for Cathy Blatnik:Website: Mid-Michigan Autism Association Baked Goods by Dominic (Facebook Page)Email: BakedGoodsByDominic@mail.comEpisode Sponsor: Graze Craze, Okemos, MIhttps://www.grazecraze.com/okemos-miThe opinions and statements made on the Today's Your Day Podcast are/or do not necessarily reflect those of the Today's Your Podcast Podcast or Tedi Parsons. To learn more, please visit: https://owningtheday.comThe music used for this podcast was provided by: total-happy-up-and-sunny by sascha-ende-from-filmmusic-io. https://filmmusic.io/standard-license. License (CC BY 4.0):
Ahhh, it's that time of the year! Pitchers and catchers report, spring training is underway, we buy hotdogs and beer from a guy yelling up the stairs, it's just perfection! Nobody loves the feeling of the start of baseball season more than Greg, maybe with the exception of this episode's guest. Greg sits down in studio with Joey Hanley, a former college player who has now devoted his life to coaching and training young-and-promising baseball players to achieve their dreams of playing in college and beyond. This success didn't come without struggle, however, but luckily Joey had the right mindset to take it head on. Joey was diagnosed with epilepsy after he hit his head in the bathroom following a seizure when he was younger, and he battled through this diagnosis to achieve success on and off the diamond. He isn't going to let epilepsy slow him down from anything that he wants to do, and neither should you. Don't miss this episode! The Talk About It podcast is excited to be sponsored in part by Neurelis. The Talk About It podcast is excited to sponsored in part by Seizures Are Signs — dedicated to educating families on the importance of early and specific diagnosis by providing an assessment to help get the conversation started, educational information, stories from families who have found a diagnosis, links to advocacy groups, and more. For more information, go to SeizuresAreSigns.com. Seizures are Signs is made available by Jazz Pharmaceuticals.
Many patients with epilepsy are unable to acheive optimal seizure control with medical therapy. Palliative surgical procedures, neurostimulation devices, and other nonpharmalogical treatments can lead to a meaningful reduction in seizures and improved outcomes. In this episode, Teshamae Monteith, MD FAAN, speaks with Daniel Friedman, MD, MSc, author of the article “Surgical Treatments, Devices, and Nonmedical Management of Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Montieth is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Friedman is a professor (clinical) of neurology at NYU Grossman School of Medicine and Director of NYU Langone Comprehensive Epilepsy Center at NYU Langone Health in New York, New York. Additional Resources Read the article: Surgical Treatments, Devices, and Nonmedical Management of Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Guest: @dfriedman36 Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today, I'm interviewing Dr Daniel Friedman about his article on surgical treatments, devices, tools, and non-medication management of epilepsy, which appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast. How are you? Dr Friedman: I'm well, how are you? Dr Monteith: Thank you for your article. Dr Friedman: Thank you for the opportunity to talk today. Dr Monteith: Why don't you introduce yourself? Dr Friedman: So yeah, so I'm Dan Friedman. I am a professor of neurology here at NYU Grossman School of Medicine and I am the director of the NYU Comprehensive Epilepsy Center. I'm primarily an adult neurologist and I treat teens and adults with hard- difficult-to-treat epilepsy, including surgical treatments for epilepsy. Dr Monteith: And I know you see a lot of patients because I did my residency there. And so, when you graduate, you get a lot of it, like I think many, many residents. What inspired you to choose epilepsy as a profession? Dr Friedman: I came to neurology through my interest in neuroscience. I was a neuroscience undergraduate. I was very interested in the brain and brain function. Particularly, I was interested in how neurons communicate and organize to entrain and rhythms and that encode information. And through that interest and through my experiences in the laboratory, I actually became interested in how they do that in pathological circumstances like seizures. And so, I started reading about epilepsy, and then when I started seeing patients with epilepsy, you know, I decided this is the specialty for me for a lot of reasons. One is it combines inpatient and outpatient care. You get to establish long-term relationships with patients. For many of my patients, I'm probably the doctor that they see most often. You see people across the lifespan. And what I'm going to talk about today is for some people, you actually get to cure their disease, which at the time I was coming into neurology was something pretty rare. Dr Monteith: Yeah, that's great. Why don't you tell us, what were you thinking when you started writing the article? What did you set out to do? Dr Friedman: What I really wanted to do is to educate neurologists out there about the options that they have for their patients with epilepsy, especially those with difficult-to-treat or drug-resistant epilepsy, and give them the tools to communicate those options. Especially for them to understand the rationale, why we choose the interventions that we do as epileptologists, how to appropriately refer patients and have them be partners in that discussion with patients and families. One of the things that we have known for a long time is that the time to referral for things like epilepsy surgery is too long. You know, the average patient with drug resistant epilepsy who undergoes epilepsy surgery waits about twenty years. And for patients who could have curative therapy, you know, become seizure free, that's a lot of life years lost. If we can get patients to that potentially life-altering therapy earlier, that'd be great. Dr Monteith: Yeah, that is really impactful as you think about it. So why don't you tell us what the essential points of your article? Dr Friedman: The central point of my article is really that when patients have drug-resistant epilepsy, which means that our available anti-seizure medicines are not controlling their seizures to the degree that they need, there are other treatment options. Some of those are what we call curative, which means that they could stop their seizures entirely; and some of them are palliative, they could reduce the frequency or severity of seizures and improve quality of life and other outcomes. The other thing that I wanted to highlight was, in addition to these types of therapies, there are other tools we have at our disposal that can improve the quality of life and safety of our patients with epilepsy, including devices for seizure monitoring. Dr Monteith: And how do you define drug-resistant epilepsy? I feel like that could be a moving target. Dr Friedman: The International League Against Epilepsy actually set out to define it about a decade ago, and they defined it as patients who fail at least two appropriately selected anti-seizure medicines due to lack of efficacy. Then they're still having ongoing seizures. What does that mean? So, that means that the medicine that was chosen was appropriate for the type of seizures that they have, whether it's focal or generalized, and that it didn't work because of a lack of efficacy and not because of side effects. And we know from multiple studies that once patients fail two medications, the likelihood that the third, fourth, fifth, etcetera, medicine will control their seizures becomes smaller and smaller. It's not impossible, but the rates fall below five percent. And so we call those patients drug-resistant. Dr Monteith: So, it sounds like despite newer therapies, really things haven't changed in ten years. Dr Friedman: Yeah, unfortunately, at least when the concept was first investigated back in 2000 by Quan and Brody, they found that a third of patients were drug-resistant. When they went back in the mid-2010s to relook at these patients, despite the introduction of many new medications, the rate of patients who were drug-resistant was essentially unchanged. There may be therapies that are emerging or in development that may have better odds, but right now we don't really understand what makes people drug resistant and how we can target that. Dr Monteith: But you do raise a good point that this is about efficacy and not tolerability. And at least for some of the newer medications, they're better tolerated. If you stop the medicine because you had some side effect, that might change how that person has classified better-tolerated treatments. Dr Friedman: It's true. And better-tolerated treatments, you can potentially use higher doses. One of the things that is not in the definition of drug-resistant epilepsy, but as a practicing neurologist, we all know, is that the patients have to take the medicine for it to be effective. And unfortunately, they have to take it every day. And if the medicine makes them feel bad, they may choose not to take it, present to you as drug-resistant, when in reality they may be drug-sensitive if you got them on medicine that doesn't make them feel bad. Dr Monteith: So why don't we talk about patients that are ideal candidates for epilepsy surgery? Dr Friedman: The ideal candidates for epilepsy surgery… and I'll start by talking about curative epilepsy surgery, where the goal of the surgery is to make patients seizure-free. The best candidates are patients who have lesional epilepsy, meaning that there is a visible MRI abnormality like a focal cortical dysplasia, hippocampus sclerosis, cavernoma in a part of the brain that is safe to resect, non-eloquent, and where you can safely perform a wide margin of resection around that lesion. It helps if they have few or no generalized tonic-clonic seizures and a shorter duration of epilepsy. So the ideal patient, the patient that if they came to my office, I would say you should get surgery right now, are patients with non-dominant temporal lobe epilepsy of a few years' duration. So as soon as they've shown that they're not responding to two medicines, those are the ideal patients to say, you would have the most benefit and the least risk from epilepsy surgery. We know from studies that patients with temporal lobe epilepsy do a little better with surgery. We know patients who have a visible lesion on MRI do better with epilepsy surgery. We know that patients who have infrequent secondarily generalized seizures do better. But all patients with drug-resistant epilepsy should be considered for some form of surgery because even if they're not candidates for a curative surgery, there may be some palliative options, whether it's surgical resections that lessen the severity of their seizures or neurostimulation devices that reduce the frequency and severity of seizures. Ideal candidates, the ones that you would push through sooner rather than later, are those who have the likelihood of the best outcomes and the least risk of neurocognitive decline. Dr Monteith: So, you mentioned that there may be other candidates that still benefit, although maybe not ideal. You mentioned neuromodulation. What other interventions are available? Dr Friedman: For patients who are not candidates for resective surgery, there are several neurostimulation options. There's vagus nerve stimulation, which has been around the longest. It is a device that is implanted in- under the skin near the clavicle and has a lead that goes to the left vagus nerve and delivers stimulation, electrical stimulation to the nerve. For reasons we don't fully understand, it can reduce the both the frequency and severity of seizures. Seldom does it make people seizure free, but the reduction in seizure frequency for many patients is associated with improved quality of life, reduced risk of injury, and even reduced rates of SUDEP. We also have two intracranial neurostimulation devices we use for epilepsy. One is the responsive neurostimulator. So, this is a device that- it has leads that are implanted directly into the seizure focus and sense electrocortical brain activity and deliver electrical stimulation to attempt to abort abnormal brain activity. So functioning kind of like a cardiac defibrillator for the heart, but for seizures in the brain. And because these devices have two leads, they can be used to treat people with more than one seizure focus---so up to two---or be used in patients who are not candidates for resection because their seizure focus is in language cortex, motor cortex, things that would be unable to resect. And the RNS has somewhat better efficacy in terms of percent reduction in seizures compared to the VNS, but obviously because it's an intracranial device, it's also a little riskier. It has more potential for neurosurgical adverse effects. There's also a deep brain stimulator for epilepsies, the same exact device that we use to treat movement disorders. We can implant in the thalamus, in either the anterior nucleus of the thalamus or now, for some patients, into the central median nucleus of the thalamus, and deliver open loop stimulation to treat epilepsy and reduce the frequency and severity of seizures as well. Unlike the RNS, you don't have to localize the seizure focus, so you don't need to know exactly where the seizures are coming from. And you could treat patients with multifocal epilepsy with seizures coming from more than two locations or even generalized seizures. Dr Monteith: So, it sounds like there are a lot of options available to patients. I think one of the things I find challenging is when we have patients that may have some cognitive dysfunction, especially in the hospital, and they've had some seizures that are very obvious, but then there are these, maybe, events that you wonder are seizures. So, what is the utility of some of these seizure detection devices? Dr Friedman: The development of seizure detection devices started out primarily with the observation that a majority of cases of sudden unexpected death and epilepsy, or SUDEP, occurred following tonic-clonic seizures. And there was a need to be able to monitor for convulsive seizures, especially that occur at night when people were otherwise unattended. And so, the first generation of devices that were developed came on the market, essentially detected convulsive seizures, and they alerted caregivers nearby who are able to come to the bedside, provide basic seizure first aid, turn people on the side. And theoretically all this---this hasn't been shown in studies---prevents SUDEP. And so, the ones that are currently available on the market are focused on the detection of convulsive seizures, mostly generalized tonic-clonic seizures, but some devices can also detect other seizures with very prominent motor components. What we don't have yet available to us, and what people are working on, are devices that detect nonconvulsive seizures. We know that patients who have focal impaired aware seizures are often amnestic for their seizures. They don't know they had a seizure if family members aren't there to observe them. They may never report them, which makes treating these patients very difficult. How do you quantify disease burden in your headache patients, for instance? You say, how many headache days did you have since we last met in the clinic? Your patients will be able to report on their calendar, this many days. Well, imagine if the patients had no awareness of whether or not they had a headache day. You wouldn't know if your therapy is working or not. In epilepsy, we need those types of devices which can tell us whether patients are having seizures they're unaware of, and that may be more subtle than convulsions. Dr Monteith: Oh, that'd be great for headache, too. You just gave me an idea, but that's the next podcast. So, you mentioned SUDEP, really important. How good are surgical interventions at reducing what we would think the prevalence of SUDEP? Dr Friedman: For me that is one of the primary motivations for epilepsy surgery in patients who are drug-resistant, because we know that if patients who are candidates for epilepsy surgery have high SUDEP rates. Estimates range from six to nine per thousand patients per year. If surgery is successful, their mortality rates go down to the general population level. It literally can be lifesaving for some patients, especially when you're talking about curative epilepsy surgery. But we also know that the biggest driver for SUDEP risk is tonic-clonic seizures and the frequency of those tonic-clonic seizures. So even our palliative interventions, which can reduce the frequency and severity of seizures, may also reduce the risk of SUDEP. So, we know in study- observational studies of patients with VNS and with RNS, for instance, the rates of SUDEP in patients treated with those devices are lower than expected for the drug-resistant epilepsy population. Dr Monteith: Let's talk a little bit about some of these prediction models. And you have a lot of great work in your article, so I don't want to get into all the details, but how do you use that in the real world? Do you communicate that with patients? How do you approach these prediction factors? Dr Friedman: There are two places where, I think, clinical prediction tools for epilepsy surgery have a role. One is, for me, in my clinic where I'm talking to patients about the risks and benefits for surgery, right? You want to be able to accurately communicate the likelihood that the surgery is going to give you the desired outcome. So patients and their families can make educated decisions, be weighing the risks and benefits. I think it's important to be realistic with patients because surgery, like- you know, any surgery is not without risk, both acute risks and long-term risks. You're removing part of the brain, and, you know, every part of the brain is important. That's where I use prediction tools. But I think it's also important for the general neurologist, especially trying to triage which patients you are going to be aggressive with referring to a comprehensive epilepsy center for evaluation. Where you may use your limited time and capital with patients to counsel them on surgical treatments. Where a healthcare system with limited resources prioritizes patients. So, there's a significant need for having prediction tools that only take the input that a general neurologist seeing a patient in the clinic would have at hand. You know, the history, an MRI, an interictal EEG. Dr Monteith: I guess part of that prediction model includes adverse outcomes that you're communicating as well. Dr Friedman: Certainly, for me, when I'm discussing surgery for the patient in front of me, I will use prediction models for adverse outcomes as well that are informed by the kind of surgery we're proposing to do, especially when talking about things like language dysfunction and memory dysfunction after surgery. Dr Monteith: So, you mentioned a lot of great advances, and certainly since I was a resident, which wasn't that long ago. Why don't you tell me how some of these interventions have changed your clinical practice? Dr Friedman: Thinking about epilepsy surgery, like other surgical specialties, there's been a move to more minimally invasive approaches. For instance, when I started as an epilepsy fellow fifteen years ago, sixteen years ago, most of our surgeries involve removing a large portion of the skull, putting electrodes on the brain, doing resections through big craniotomies which were uncomfortable and risky, things like that. We now do our phase two or intracranial EEG monitoring through small burr holes in the brain using robotically placed electrodes. For many of our patients, we can actually treat their epileptic focus with a laser that is targeted through a small catheter and MRI guidance. And patients are usually home in two days with, you know, a lot less discomfort. Dr Monteith: Well, that's great. I didn't expect that one, but I do think that translates to many areas of neurology. Really just this idea of meeting their goals and personalizing their care. My last question is, what out of these advances and what you know about the future of epilepsy, what makes you the most excited and what gives you the most hope? Dr Friedman: I think there are a lot of exciting things in epilepsy. Last count I heard, there's something like over a hundred biotech companies developing epilepsy therapies. So that gives me hope that people are still interested in meeting the unmet needs of patients with epilepsy. And some of these therapies are really novel. For instance, there's a trial of stem cell treatments for drug-resistant temporal lobe epilepsy that's ongoing now, where inhibitory interneuron progenitor cells are implanted in the brain and kind of restore the brain circuit disruptions that we see in some of these epilepsies. There are combinations of drug and device therapies or gene therapy and device therapies that are in development, which have a lot of promise, and I think we'll have much more precise and targeted therapies within the next decade. Dr Monteith: Awesome. I really appreciate our conversation, and thank you so much for your wonderful article. I learned a lot reading it. Dr Friedman: Thank you. Dr Monteith: Today I've been interviewing Dr Daniel Friedman, whose article on surgical treatments, devices, tools, and non-medication management of epilepsy appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshmae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
Kamran Fallahpour, Ph.D — Clinical Psychologist, Director of BRC We dive into Brain Mapping- Quantitative EEG adhd (QEEG), ADHD, Epilepsy, Absent Seizures and more. Tune in and share! Dr. Fallahpour is a licensed clinical psychologist, neuroscientist, and brain-computer interface (BCI) expert with over 25 years of experience in clinical and research applications of neurophysiology, health psychology, and brain health. He is the founder and director of Brain Resource Center, where he has helped thousands of patients attain optimal brain health. His approach integrates cutting-edge research from health psychology and neuroscience to develop personalized and integrated treatments for a diverse range of psychological and neuropsychological disorders. Specializing in neurotechnology, applied neuroscience, neuromodulation techniques, and brain mapping, Dr. Fallahpour helps clients enhance self-regulation, improve mood, and elevate cognitive performance. Dr. Fallahpour's research has been featured in prestigious publications like the American Association of Psychiatry, Archives of Clinical Psychopathology, and Oxford Journals. He was involved in international trials seeking to identify biomarkers in depression and ADHD, contributing significantly to one of the largest databases of brain, cognitive, and genomic data across mental disorders. Dr. Fallahpour is currently affiliated with the Icahn School of Medicine at Mount Sinai as a Clinical Instructor in Psychiatry and formerly affiliated with Columbia University College of Surgeons as an Instructor in Clinical Psychology at Roosevelt Hospital Center Department of Psychiatry. Learn more: https://www.brainresourcecenter.com/psychologist-nyc Stay connected with me: https://www.chonacas.com/links/
Imagine living on high alert, every second of every day. That's life with severe, uncontrolled epilepsy. You're always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there's no break. No way to ever fully relax.In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they've tried has truly worked.She also dives into the impossible choices—when to push for new treatments, when to let go, and how she's learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.Listen to Hailey's previous episodes: 174 on silencing parents and 117 on traumaversaries.Listen to Hailey's husband Derek on 146: The Dad episode.Get Hailey's book, What is Epilepsy?Fill out our contact form to join upcoming discussion groups!Follow Hailey at @growing_juniper!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
In this week's podcast, Neurology Today's editor-in-chief highlights articles on the larger lifetime burden of dementia than projected, an AI-fueled program that detects hidden features in EEGs for epilepsy detection, and neurology-trained pharmacists who are working with neurology departments.
Part 1 - Neville James speaks with Dr. Katherine Willett-Dahlberg, a neurologist in Christiansted who has experience in brain diseases including Epilepsy, and Headache.
This month on Seizing Life® Dr. Kelly Tyson shares her decade-long journey to an epilepsy diagnosis. Despite numerous visits to various medical experts through the years and majoring in neuroscience in college, Kelly was never referred to a neurologist, nor did she recognize the “episodes” she experienced as seizures. Kelly details how she managed these episodes through college, graduate school, and medical school, and reveals the surprising way that she came to realize she was having seizures.
Emergency treatment may be necessary after a person's first seizure or at the onset of abnormal acute repetitive (cluster) seizures; it is required for status epilepticus. Treatment for these emergencies is dictated by myriad clinical factors and informed by published guidance as well as emerging research. In this episode, Lyell K. Jones, MD, FAAN, speaks with David G. Vossler, MD, FAAN, FACNS, FAES, author of the article “First Seizures, Acute Repetitive Seizures, and Status Epilepticus,” in the Continuum® February 2025 Epilepsy issue. Dr. Jones is the editor-in-chief of Continuum: Lifelong Learning in Neurology® and is a professor of neurology at Mayo Clinic in Rochester, Minnesota. Dr. Vossler a clinical professor of neurology at the University of Washington School of Medicine in Seattle, Washington. Additional Resources Read the article: First Seizures, Acute Repetitive Seizures, and Status Epilepticus Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @LyellJ Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum: Lifelong Learning in Neurology. Today, I'm interviewing Dr Dave Vossler, who has recently authored an article on emergent seizure management, taking care of patients with the first seizure, acute repetitive seizures, and status epilepticus, which is an article in our latest issue of Continuum covering all topics related to epilepsy. Dr Vossler is a neurologist at the University of Washington, where he's a clinical professor of neurology and has an active clinical and research practice in epileptology. Dr Vossler, welcome. Thank you for joining us today. Why don't you introduce yourself to our listeners? Dr Vossler: Thank you very much for the introduction, Lyell. It's a pleasure to speak with you on this podcast, and I hope to go over a lot of important new information in the management of seizure emergencies. As you said, I'm a clinical professor in neurology at University of Washington, been in medicine for many decades now and have published and done research in this area. So, I'm anxious to give you not only my academic experience, but also talk about my own management of patients with status epilepticus over the last four decades. Dr Jones: Yeah, that's fantastic. And I always appreciate hearing from experienced clinicians, and I think our readers and our listeners do appreciate that voice of clinical expertise. And I'll tell you this is a topic, you know, as a neurologist who doesn't see many patients with acute seizure emergencies in my own practice, I think this is a topic that gives many clinicians, including neurologists, some anxiety. Your article, Dr Vossler, is really chock-full of helpful and clinically relevant considerations in the acute management of seizures. So, you now have the full attention of a huge audience of mostly neurologists. What's the one most important practice change that you would like to see in the care of patients with either first or acute prolonged seizures? Dr Vossler: Without a doubt, the most important clinical takeaway with regard to the status epilepticus---and for status epilepticus, many, many clinical trials, research trials have been done over the last couple decades and they all consistently show the same thing, that by and large most patients who have status epilepticus are underdosed and undertreated and treated too slowly in the initial stages of the status epilepticus. And it's important to use full bolus dosages of benzodiazepines to prevent mortality, morbidity, and later disability of these patients. To prevent the respiratory depression, many physicians are afraid to use higher doses of benzodiazepines, even guideline-recommended doses of benzodiazepines for fear of respiratory depression. But it's actually counterintuitive. It turns out that most cases of respiratory depression are due to inadequate doses and due to the status epilepticus itself. We know there's greater mortality, we know there's greater morbidity and we know that there's greater need for higher dose, subsequent, anti-seizure medications, prolonged status, if we don't use the proper doses. So, we'll kind of go over that a little bit, but that is the one clinical takeaway that I really would like our listeners to have. Dr Jones: Let's follow that thread a little bit. Dave, I know obviously we will speak in hypotheticals here. We're not going to talk about actual patients, but I think we've all been in the clinical situation where you have a patient who comes into the emergency room usually who's actively seizing, unknown history, don't know much about the patient, don't know much about the circumstances of the onset of the seizure. But we now have a patient with prolonged convulsive seizures. How do we walk through that? What are the first steps in the management of that patient? Dr Vossler: Yeah, well, I'll try to be brief for the purposes of the podcast. We do, of course, go through all of that in detail in the Continuum article, which hopefully everybody will look at very carefully. Really in the first table, the very first table of the article, I go through the recommended guideline for the American Epilepsy Society on the management of what we call established status epilepticus. The scenario you're talking about is just exactly that: established status epilepticus. It's not sort of evolving or developing status. We're okay they're having a few seizures and we're kind of getting there. No, this patient is now having evidence of convulsive seizure activity and it's continuing or it's repeated seizures without recovery. And so, the first phase is definitely a benzodiazepine and then the second phase is then a longer-acting bolus of a drug like phosphenotoine, valproic acid or levetiracetam. I could get into the details about dosing of the benzodiazepines, but maybe I'll let you guide me on whether we wanted to get into that kind of detail right at the outset. It's going to be a little bit different. For children, its weight-based dosing, but for adults, whether you use lorazepam or you use diazepam or you use midazolam, the doses are a little bit different. But they are standardized, and gets back to this point that I made earlier, we're acting too slow. We're not getting these patients quick enough, for various reasons, and the doses that are most commonly used are below what the guidelines call for. Dr Jones: That's great to know, and I think it's fine for the details to refer our listeners to the article because there are great details in there about a step-by-step approach to the established status epilepticus. The nomenclature and the definitions have evolved, haven't they, Dr Vossler, over time? Refractory status epilepticus, new-onset refractory status epilepticus, super refractory status epilepticus. Tell us about those entities, how they're distinguished and how you approach those. Dr Vossler: That's an important thing to kind of go over. They- in 2015, the International League Against Epilepsy, ILAE, which is, again, our international organization that guides our understanding of all kinds of things epileptic in nature around the world. In 2015 they put out a definition of status epilepticus, but it used to be that patients had thirty minutes of continuous seizure activity or repetitive obvious motor seizures with impairment of awareness and they don't recover impairment between these seizures. And that goes on for thirty minutes. That was the old definition of status epilepticus. Now, the operational definition is five minutes. And I think that's key to understand that, after five minutes of this kind of overt seizure activity, you need to intervene. And that's what's called T1 in the 2015 guideline, the international guideline. There are a bunch of different axes in the classification of status that talk about semiology, etiology, EEG patterns, and what age group you're talking about. We won't really get into those in the Continuum article because that's really more detailed than a clinician really should be. Needing to think about the stages, what we call the stages of status epilepticus that you mentioned and I alluded to earlier are important. And that is sort of new nomenclature, and I think probably general neurologists and most emergency room physicians aren't familiar with those. So, it just briefly goes through those. Developing status epilepticus is where you're starting- the patient's starting to have more frequent seizures, and it's heading essentially in the wrong direction, if you will. Established status epilepticus, as I mentioned, is, you know, this seizure act, convulsive or major, major outward overt seizure activity lasting five minutes or more, at which time therapy needs to begin. Again, getting back to my point, what doesn't happen often enough is we're not- we're intervening too late. Third is refractory status epilepticus, which refers to status epilepticus which continues despite adequate doses of an initial benzodiazepine given parenterally followed by a full loading dose of a single non-sedating anti-seizure medicine, which today includes phosphenotoine IV valproic acid or IV levetiracetam. In the United States, and increasingly around the world, people really are using levetiracetam. First, it has some advantages. There's now proof from a class one NIH-funded trial. We know that these three drugs are equivalent at the full doses that I go over in the article. You have your kind of dealer's choice on those. Phenobarbital, which we used to use and I used as a resident as long as forty years ago, is really a second choice drug because of its sedating and other side effects. But around the world in resource-poor countries phenobarbital can be used and, in a pinch, certainly is an appropriate drug. And then finally, you mentioned super refractory status epilepticus and that's status that's persisting for more than twenty four hours. Now, despite initial benzo and non-sedating anti-seizure medicine, but also lasting more than twenty four hours while receiving an intravenous infusional sedating, anesthetizing anti-seizure medicine like ketamine, propofol, pentobarbital or midazolam drips. Dr Jones: So, it sounds like the definitions have evolved in a way that improves the outcomes, right? To do earlier identification of status epilepticus and more aggressive management, I think that's a great takeaway. If we move all the way to the other end of the spectrum, let's move to the ambulatory setting and we have a patient who comes in and they've had one seizure, they're an adult; one seizure, the first seizure. The key question is, how do we anticipate the risk of future seizures? But walk us through how you talk to that patient, how you evaluate that patient to decide if and when to start anti-seizure medicines. Dr Vossler: Well, it depends a little bit if it's an adult or a child, but the decision making process and the data behind it is pretty robust now. And the decision making process is pretty similar for adults and children, with some differences which I can talk about. First of all, first seizures. I think it's really important to stress that there's been so much research in this area. I'd like to get a cross point that they're not as innocuous as I think many general neurologists might suspect. We know that there is a two- to threefold increased risk of death in children and adults following a first seizure. Moreover, the risk of a second seizure, both in kids and adults, is about 36% two years after that first seizure. It's about 46% five years after that first seizure. It's really pretty substantial. The risk of a second seizure is increased twofold. It doubled in the presence of any kind of a history of prior brain insults that could result in seizures. Could be infections, it could be a prior stroke, it could be prior significant brain trauma. It's also doubled in the presence of an EEG, which shows epileptiform discharges like spikes and sharp waves---and not just a sort of borderline things like sharply contoured rhythmic Theta activity. That's really not what we're talking about. We're talking about overt epileptiform discharges. It's doubled in the presence of lesion that can be seen on imaging studies, and it's doubled in the presence of seizures if that first seizure occurs during sleep. So, we have a number of things that double the risks, above the risk of a second seizure, above that 36% at two years and 46% at five years that I spoke about. And so those things need to be considered when you're counseling a patient about that. Should you be on an anti-seizure medicine after that first seizure? Specifically, to the point of anti-seizure medications, the guideline that was done, the 2015 guideline that was done by the American Academy of Neurology for adults, and the 2003 guideline was actually a practice parameter that was done by the Academy and the American Epilepsy Society for children, are really kind of out of date. They talk about the adverse effects of anti-seizure medications, but when you look back at the studies that were included in developing that practice parameter for kids and guidelines for adults, they are the old drugs: carbamazepine, phenytoin, phenobarbital and valproate. Well, I don't think I need to tell this audience, this well-educated audience, that we don't use those drugs anymore. We are using more modern anti-seizure medicines that have been developed since 1995; things like lamotrigine, levetiracetam, and lecosamide. Those three in particular have very low adverse events. So, the guideline that the Academy, American Academy Neurology and American Epilepsy Society put together for kids and for adults talks about this high adverse event profile. And so, you need to take a look at the risks that I talked about of a seizure recurrence and balance that against adverse effects. But I'm here to tell you that the newer anti-seizure medicines---and by newer I'm talking in the last thirty years since lamotrigine was approved in 1995---these drugs have much better side effect profiles. And I think all epileptologists would agree with that. They're not necessarily more effective, but they are better tolerated. That makes the discussion of the risk of a second seizure, the risk of mortality versus side effects of drugs, it really pushes the risk category higher on the first side and not on the side of drugs. We know that if you take an anti-seizure medicine, you reduce your risk of a second seizure by half. Now, that's not sustained over five years, but over the first two years, you've reduced it by half. In a person who's driving, needs to get to work, has to take the kids to school, whatever, most of my patients are like, yeah, okay, sign me up. These drugs are really pretty well tolerated. There's a substantial risk of a second seizure. So, I'll do that. In a kid, a child that's, you know, not driving yet, that might be a different discussion. And the parents might say, well, I'd rather not have my son exposed, my daughter exposed to this. They're trying to go to school. They're trying to learn. We don't want to hinder that. We'll wait for a second seizure and then if they have a second seizure, which by the way is, you know, one of the definitions of epilepsy, well then they have epilepsy, then they probably will need to go on the seizure medication. Dr Jones: Great summary, Dr Vossler, and it is worth our audience being aware that the evidence has evolved alongside the improvement in the adverse effect profile. And sounds like your threshold is a little lower to treat then maybe it would have been some time ago, right? Dr Vossler: I would say that's exactly correct in my opinion. Particularly for adults, absolutely. Dr Jones: That's fantastic, Dr Vossler. I imagine there are a lot of aspects of caring for these patients that are challenging, and I imagine many scenarios are actually pretty rewarding. What do you find the most rewarding aspect of caring for patients with acute seizure management? Dr Vossler: Yes, I mean, that is really true. I would say that the most challenging things are treating refractory status epilepticus, but worse yet, new onset refractory status epilepticus and the super refractory status epilepticus, which I talk extensively about or write extensively about in the article and provide a lot of guidance on. Really, those conditions are so challenging because they can go on for such a long time. Patients are hospitalized for a long time. A lot of really good clinical guidance doesn't exist yet. There is a tremendous amount of research in that area which I find exciting, and really there's an amazing amount of international research on that, I think most of our audience probably is unaware of. And certainly, with those conditions, there is a high risk of later disability and mortality. We go through all of that in the article. The rewards really come from helping these people. When someone was super refractory status and it were non- sorry, new onset refractory status epilepticus, has been in the hospital for thirty days, it gets really hard for everybody; the family, the patient. And for us, it wears on us. Yet when they walk out the door, and I've had these people come back to the epilepsy clinic and see me later. We're managing their anti-seizure medications. They've survived. The NORSE patients often have substantial disability. They have cognitive and memory and even some psychiatric disability. But yet we can help them. It's not just management in the hospital, but it's getting to know these people, and I take them from the hospital and see them in my clinic and manage them long-term. I get a lot of great satisfaction out of that. We're hoping to do even better, stop patients' status early and get them to recover with no sequelae. Dr Jones: What a great visual, seeing those patients who have a devastating problem and they come back to clinic and you get the full circle. And what a great place to end. Dr Vossler, thank you so much for joining us, and thank you for such a thorough and fascinating discussion on the importance of understanding and managing patients with the first seizure, acute repetitive seizures, and status epilepticus. Dr Vossler: Thank you very much, Lyell. Dr Jones: Again, we've been speaking with Dr Dave Vossler, author of an article on emergent seizure management, first seizures, acute repetitive seizures and status epilepticus in Continuum's most recent issue on epilepsy. Please check it out, and thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
High-frequency oscillations (80 to 500 Hz) are being studied as biomarkers of epileptogenic areas in the brain, as well as markers to be used in epilepsy surgery. Dr. Cecilie Nome leads a discussion about clinical research on HFOs and areas of uncertainty, as well as the importance of basic research in helping to understand this phenomenon. Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: podcast@ilae.org.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, X (Twitter), Instagram, and LinkedIn.
The Americans with Disabilities Act is unquestionably in the premiere class of landmark legislation in American History. On this episode, Greg sits down with the original author and co-sponsor of the ADA -- avid disability rights advocate, the Honourable Tony Coelho, former Representative from California. Tony first introduced the ADA alongside Senator Lowell Weicker in the 100th Congress in 1988 and battled the red tape, opposition and criticism to finally get the bill passed and signed into law by President George H.W. Bush in 1990. Greg is joined by his Talk About It partner Ken Lowenberg to talk with Tony about his personal history with epilepsy, how the bill came into existence, the importance of enforcing the ADA by presidential administrations, and the dangers of stigma. This episode is so important to listen to, because it's easy to overlook how widespread the impact of the ADA is, touching every American in ways that might be subtle or even hidden. Don't miss it! The Talk About It podcast is excited to be sponsored in part by Neurelis. The Talk About It podcast is excited to sponsored in part by Seizures Are Signs — dedicated to educating families on the importance of early and specific diagnosis by providing an assessment to help get the conversation started, educational information, stories from families who have found a diagnosis, links to advocacy groups, and more. For more information, go to SeizuresAreSigns.com. Seizures are Signs is made available by Jazz Pharmaceuticals.
YOU CAN DONATE TO EPILEPSY ACTION HERE - https://www.justgiving.com/page/yasmin-amberrr?utm_medium=FR&utm_source=CLYou can sign the petition here - https://bit.ly/3XgKhzWWIN A TRIP TO TOKYO - https://raffall.com/375146/enter-raffle-to-win-a-trip-to-tokyo-hosted-by-90s-baby-showWater2 - https://water2.com/90SBABY15 use code 90SBABY15 at checkoutJoin this channel to get access to perks:https://www.youtube.com/channel/UCOIOo7ybnNFNdwjSCgYDtOw/joinCheck out our Amazon Storefront - https://www.amazon.co.uk/shop/90sbabyshow/list/CA7MV366T30L?ref_=cm_sw_r_cp_ud_aipsflist_CJP85NJ95R280Z6C6NMZPO Box 5038 HORNCHURCH RM12 9JXDISCOUNT CODE: 90SBABYSHOWFinancial Joy Academy (ANNUAL membership 20% off): https://checkout.financialjoyacademy.com/financial-joy-academy-yearly-member-2021/?coupon=90SBABYSHOWFinancial Joy Academy (MONTHLY membership 20% off): https://checkout.financialjoyacademy.com/financial-joy-academy-monthly-member-21/?coupon=90SBABYSHOW Hosted on Acast. See acast.com/privacy for more information.
YOU CAN DONATE TO EPILEPSY ACTION HERE - https://www.justgiving.com/page/yasmin-amberrr?utm_medium=FR&utm_source=CLYou can sign the petition here - https://bit.ly/3XgKhzWWIN A TRIP TO TOKYO - https://raffall.com/375146/enter-raffle-to-win-a-trip-to-tokyo-hosted-by-90s-baby-showWater2 - https://water2.com/90SBABY15 use code 90SBABY15 at checkoutJoin this channel to get access to perks:https://www.youtube.com/channel/UCOIOo7ybnNFNdwjSCgYDtOw/joinCheck out our Amazon Storefront - https://www.amazon.co.uk/shop/90sbabyshow/list/CA7MV366T30L?ref_=cm_sw_r_cp_ud_aipsflist_CJP85NJ95R280Z6C6NMZPO Box 5038 HORNCHURCH RM12 9JXDISCOUNT CODE: 90SBABYSHOWFinancial Joy Academy (ANNUAL membership 20% off): https://checkout.financialjoyacademy.com/financial-joy-academy-yearly-member-2021/?coupon=90SBABYSHOWFinancial Joy Academy (MONTHLY membership 20% off): https://checkout.financialjoyacademy.com/financial-joy-academy-monthly-member-21/?coupon=90SBABYSHOW Hosted on Acast. See acast.com/privacy for more information.
Genetic testing plays a key role in the evaluation of epilepsy patients. With the expanding number of choices for genetic tests and the complexity of interpretation of results, genetic literacy and knowledge of the most common genetic epilepsies are important for high-quality clinical practice. In this episode, Gordon Smith, MD, FAAN speaks Sudha Kilaru Kessler, MD, MSCE, author of the article “Epilepsy Genetics,” in the Continuum February 2025 Epilepsy issue. Dr. Smith is a Continuum® Audio interviewer and a professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia. Dr. Kessler is an associate professor of neurology and pediatrics at Perelman School of Medicine at the University of Pennsylvania and Children's Hospital of Philadelphia in Philadelphia, Pennsylvania. ADDITIONAL RESOURCES Read the article: Epilepsy Genetics Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the Academy of Neurology: aan.com SOCIAL MEDIA facebook.com/continuumcme @ContinuumAAN Host: @gordonsmithMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Smith: Hello, this is Dr Gordon Smith. Today I've got the great pleasure of interviewing Dr Sudha Kessler about her article on epilepsy genetics, which appears in the February 2025 Continuum issue on epilepsy. Sudha, welcome to the podcast and please introduce yourself to our audience. Dr Kessler: Oh, thank you so much. I'm Sudha Kessler. I am a pediatric epileptologist here at the Children's Hospital of Philadelphia and the University of Pennsylvania. Dr Smith: Tell us a little bit about yourself. Are you a geneticist too, or how did you get into this particular topic? Dr Kessler: Yes, I want to emphatically say that I am not a geneticist. I'm not an expert in epilepsy genetics at all. I take care of all sorts of patients with epilepsy. I actually do mostly epilepsy surgery-related care. But this part of epilepsy is, every year, increasingly important to our everyday practice. And I think it's fascinating, often a little daunting. I think I was asked to get involved with this article as a non-expert to help translate from the experts to the rest of us. Dr Smith: We're going to get there, because one of the things you do a really good job of in the article is talking about genetic concepts that are germane to everything we do. And I think you're an expert. You do it in a way that I understood. So, I'd like to get there, but- and this is a really hot area. For instance, I really loved your figure that shows the arc of discovery of genetic causes for epilepsy. It's really breathtaking, something we wouldn't have thought possible that long ago. And it's also a lot to digest. And so, I wonder if maybe we can begin by thinking about a framework and, for instance, you talk about these different groups of disorders. And one that seems to be particularly impacted by this unbelievable A-rated discovery. Our developmental and epileptic encephalopathies, or DEEs. What can you tell our listeners about that group of disorders? Dr Kessler: Sure. I think that, you know, most of what we think about in epilepsy genetics now has to do with disorders that are attributable to changes in a single gene. Genetics is obviously much more complicated than that, but that's still where we are in the stage of discovery. And the graph in the article is definitely one to take a look at because it represents the explosion that we've had in our understanding of single gene disorders leading to epilepsy and related manifestations. The DEEs are a group of disorders where any individual disorder is fairly rare, but as a group they are not that rare, and very impactful because they often cause epilepsy at a very young age. And either as a consequence of seizures or as a consequence of the underlying pathophysiology of that gene change, they are typically associated with really significant developmental impairments for a child 's entire life. Dr Smith: My understanding is that there's therapeutic development going on in this space. So, the early recognition of these genetic testing offers the promise of very impactful treatment---like we now do for SMA, for instance---early in the disease course. Dr Kessler: I think that's right. That's one of the most exciting parts of this field is that so much, just around the corner, for drug development, therapy development in this area. And as you can imagine, with a lot of these disorders, earlier intervention is likely to be much more impactful than later intervention when a lot of the developmental consequences are sort of… you know, when the cat 's already out of the bag, so to speak. Dr Smith: Yeah. So, this is really transformational and something that everyone who takes care of kids with epilepsy needs to know about, it seems. So on the other extreme, I guess, there are the self-limited epilepsies. I didn't really know about this in terms of genetic discovery, but can you talk about those disorders? Dr Kessler: Yeah, sure. I mean, I think some of these are the classic childhood epilepsy syndromes that we think about like childhood absence epilepsy or what we used to call benign romantic epilepsy and now call self-limited epilepsy of childhood with centrotemporal spikes. It's a mouthful, shortened to SeLECTS. Those are the epilepsies that occur typically in previously healthy children, that affects them for a few years and often remits so that epilepsy is just age-limited and doesn't continue for life. They clearly have genetic influences because they tend to run in families, but the genetics of them is not generally single gene associated. And so, we haven't actually explained why most of those kids actually get epilepsy. I think that'll be sort of another interesting area of discovery that will help us even understand some really fundamental things about epilepsy, like, why does this syndrome start at this age and tend to resolve by adolescence? Dr Smith: And the other thing I found interesting is disorders that I might have thought going into it would have a defined genetic cause or some of the disorders that there are not. So JME, for instance, or childhood absence, which is a little counterintuitive. Dr Kessler: It's completely counterintuitive. We call them genetic generalized epilepsies, and we know that they run in families, but we still know so little. I would say of all of the disorders that are mentioned in this article, that is the group where I think we have explained the genetic underpinnings the least well. Dr Smith: Yeah. Isn't that interesting? It's… wasn't it Yogi Berra who said, it's hard to predict things, particularly the future? So… Dr Kessler: Yes. Dr Smith: Who would have thought? So, we've talked a lot about kids. What about adults? You know, what role does genetic testing play in adults who have unexplained epilepsy? Dr Kessler: Yeah, I think that that is also a really important emerging area of knowledge. I think many epileptologists may think of genetic epilepsy as being solely pediatric. There are definitely not how many of these disorders can manifest for the first time in adulthood. Not only that, many of our children with childhood onset epilepsy that is due to a genetic problem grow up to become adults and will then need adult epilepsy care. In order to take care of both of those groups, it's really important for all epileptologists, including those that take care of adults, to have some knowledge of the potential impact of genetic testing. And how do you even approach thinking about it? Dr Smith: The message I guess I'm getting is if our listeners take care of patients with epilepsy, no matter how old those patients are, they need to be familiar with this. And the other message I'm getting is, it sounds like there are a lot of patients who really need genetic testing. And this came through in one aspect of your article that I found really interesting, right? So, what are the recommendations on genetic testing? So, the National Society of Genetic Counselors, as I understand it, said everyone needs genetic testing, right? Which I mean, they're genetic counselors, so. Which is great. In the International League Against Epilepsy, they recommended a more targeted approach. So, what's your recommendation? Should we be testing anyone with unexplained epilepsy, or should we be focusing on particular populations? Dr Kessler: Well, I guess I think about it as a gradation. There are certain populations that really deserve genetic testing, where it is going to be absolutely critical. You know, it's very likely that it will be critical knowledge to their care. If you diagnose somebody with epilepsy and you do imaging and that imaging does not reveal an answer, meaning you don't see a tumor or you don't see an old stroke or some other sort of acquired lesion, the next pillar of testing for understanding underlying etiology is genetic testing. That is the point at which I typically send my patients, and that's whether they're refractory or not. I think in the past some people felt that only patients with refractory epilepsy deserve or require testing. I think the reason why not to limit it to that population is that what's on a person's mind with epilepsy, or a family's mind with epilepsy, is what's going to happen to my child or to me in the future? And if genetic testing can shed some light on that, that will have a huge impact on that person's life. Dr Smith: You've got great cases in your article, which, I just want to give you a compliment. The information and entertainment, frankly, for per page: off the charts. It's not a long article, packed with useful information. And, I mean, some of your cases are great examples of patients who are heading down the surgical epilepsy path and you discovered, nope, there's a genetic cause that really impacted their care. What's the yield, right? The number of patients that you send genetic testing on for epilepsy, what percentage come back positive for a relevant sequence variant that you think is either causing or contributing to their epilepsy? Dr Kessler: That's a great question. I think that is actually still in flux because it depends on the population of patients that are being sent for testing, obviously, and then also on what testing is being done. So, I know in at least one large recent meta-analysis, the overall yield was 17%. And somebody hearing that number might think, oh, that's not very high, but it's actually very comparable to the yield for imaging. And we all do MRIs and patients that have new-onset epilepsy where the yield of MRI testing is about 20% or so. So, quite comparable. And then with children with DEEs, the yield is much, much higher than that. Dr Smith: So, 17% is actually a really great diagnostic yield. When I think of my yield and doing genetic testing on patients who have an axonal CMT phenotype, right? I mean that's better than what I get. So, good for you. That's exciting. Dr Kessler: It's interesting. I think that maybe an assumption might be that you're working somebody up. You do a genetic test, it reveals a difference, and thus surgery is off the table. It's actually quite different than the head, which is that some results may make surgery be even more “on the table” because you might find a gene that is known to be associated with a propensity to vocal cortical dysplasia, for example. And you may take a good second look at that person's MRI imaging or do other imaging to reveal the MRI invisible vocal cortical dysplasia. Dr Smith: Outstanding point. Let's talk a little more about the genetic testing itself. So, we've got all these genes. We understand when to test. What do you do? For instance, last night I just looked at the company that we use for most of our neuromuscular testing and they have a genetic epilepsy next gen panel with, I don't know, three hundred and twenty genes, right? Do you use that kind of panel? Do you go directly to a whole EXO? What's the right approach? Dr Kessler: Yeah, I think that that is quite dynamic right now, meaning that recommendations seem to change often enough that I rely on help. I have the enormous good luck of working here at CHOP where there is a fantastic epilepsy genetics group that I can easily refer to, and I know not everyone has that resource. The current recommendation is to start with an exome if that is available and is covered by that patient's insurance. When exome is not available, then the next best thing is a gene panel. You know, in recent years there have been a lot of sponsored gene panels, meaning free to the patient, administered by a company that then, you know, has other uses for compiled or grouped genetic data. And I think that as long as all of that can be clearly explained to a patient, and- along with all of the other things so you have to explain to a patient before doing genetic testing, about the pluses and minuses of doing it, I think that you sort of go for the best test you can that's available to that patient. Dr Smith: The sponsored programs can be very, very helpful, particularly from a payer or a patient payment perspective. And so, I guess the lesson there is it's great if you got the resources and CHOP to help you decide, but better to get whatever panel you can get than to do nothing; or, of course, refer to a center if you're not comfortable. Dr Kessler: And also, just know that these things change often enough that if it's been a couple of years and you might want to recheck whether the EXO is available to that patient or whether a gene panel can be sent that includes more than they had eight years ago. Dr Smith: So, are there situations to go to the other extreme where you just do targeted sanger sequencing? Like, just sequence the specific gene of interest? Dr Kessler: Yeah, absolutely. I'm still a big proponent of thinking clinically about a patient. If there are clues in that patient's history, exam, imaging, anything that gives you some sense of the disorder that this patient might have. And I think a classic example would be tuberous sclerosis. If you see an infant who has new onset spasms, you see hypopigmented macules on their skin and their MRI shows a tuber, you know, also known as a focal cortical dysplasia, then sure, send the targeted sequencing for the TSC1 and TSC2 genes. Dr Smith: And Rett syndrome? Dr Kessler: And Rett syndrome would be another example. And there are many examples where, if you feel like you have a good sense of what the disorder is, I think it's completely acceptable to send the targeted testing. Dr Smith: So, I'm going to get further down the rabbit hole and get to from easier to harder. I always get confused about things like chromosomal microarrays or, like, karyotypes and rings and stuff like that. What role do these tests play and what do our listeners need to know about them? Dr Kessler: Yeah, I think that it is really important to have at least some knowledge of what each test can't tell you. I tell my medical students at my residence that all the time. With anything in medicine, you should know what you're asking of a test and what answers a test can tell you and can't tell you. It is baseline knowledge before requesting anything. And if you don't know, then it's best to ask. So, chromosomal microarray is used when you think that there is a large-scale derangement in a bunch of genes, meaning there is a whole section of a chromosome missing---that would be deletion, or that that information is duplicated or is turned around in a, you know, in a translocation. That is what- the kinds of things that that test can tell you. I think of doing a microarray when a child has not just epilepsy and intellectual disability, but also has, for example, other organ systems involved, because sections of chromosome can include many, many, many different genes and it can affect the body in larger ways. That's often when I think about that. So, a child with multiple congenital anomalies. Karyotype, which we think of as the most old-fashioned way of looking at our genes, still has some utility because it is useful for looking at a specific situation where the ends of arm of a chromosome get cut off and get sticky and then stick to each other and make a ring. For example, ring chromosome 20 is a disorder which can cause epilepsy, particularly hard-to-treat frontal lobe epilepsy, and that sometimes doesn't show up until adolescence or even early adulthood. That's just one example of something that karyotype can tell you. Dr Smith: And it goes without saying, but just to emphasize, these are things that you would miss completely on a next generation panel or a next genome? Dr Kessler: That's correct. Because this isn't about sequencing. This is about large structures. You know, with my patients, it's sometimes, I think, very hard to explain. It's hard enough to explain it to other physicians who aren't in genetics, but it's a whole other undertaking to explain it to families who may not have a lot of literacy about cell biology or genetics or, you know, anything related to that. So, I often rely on analogies. And one analogy I use is that if you're- all of your genetic information is like a book, that book is split into chapters and those are the chromosomes. And you can be missing entire paragraphs or have paragraphs duplicated. And that would be the kind of thing that we would be looking for with the chromosomal microarray with sequencing or, you know, with sequencing, we're looking for spelling of words, and we can look at one word at a time. That would be targeted sequencing. Or we can look at many, many words at a time. And that would be next gen sequencing. Dr Smith: I just want to say that you are the genetic whisperer. You know, translator. I love it. Dr Kessler: You can continue using it down to the level of explaining the possibility of a variant of unknown significance, which I think is sometimes difficult to explain. So, I often will say, I know how the word color is spelled: C O L O R. But sometimes in other places it will be spelled C O L O U R and that's still the same word, that's still color. That's just what we would call a population variant. If it is spelled C O M O R, that changes meaning; that is not a word, and that is probably a pathogenic variant. But if it gets misspelled and it's K O L O R, then I'm not sure. Could that be a variant that means something different or not. And so that I would call that a variant of unknown significance, meaning its impact is to be determined. Dr Smith: So, I was going to ask you about variant calling, but you'd beat me to the punch. And that's a great metaphor that I will definitely remember. All right, here's another concept that I think people often find challenging, which is read depth. Can you tell us about reading depth or sequence depth? Dr Kessler: Yes, hopefully I can. Again, not an expert here, but as I understand it, the way next gen sequencing works is that pieces of DNA are getting read. And the number of times any given nucleotide is read in this process is the read depth. It basically just translates to the number of times the processor, the machinery of doing this, pays attention to anyone site. The reason it's important is that the process by which this reading is done can sometimes result in errors. The greater your depth, the more times something is read, the less likely you are to have a mistake. Dr Smith: In either direction. So, you're presumably less likely to have a false positive or false negative. Yep, again, very well explained. You know, I've got a lot of other questions I want to ask you, but I do want to be respectful of our listeners' time. I wonder if we could pivot a little bit and just let's go back to where we began. Really exciting time, right? Amazing. And you've been doing this long enough. I'm sure you didn't think when you started that it was going to look like this. What does the future look like? I mean, we talked a little bit about therapeutics, but the world's changing fast. Five, ten years from now, what's your hope for that? Dr Kessler: Oh, that's such a great question. You know, we are at the point with genetic epilepsies that gene-based therapies, either antisense oligonucleotide-based therapies or viral vector-based gene therapies, are actually now being developed and administered in trial situations to actual patients. And so, it always feels like we're on the cusp, but I think actually now we really are on the cusp of having gene-based therapies for genetic epilepsies. I think that there is still so much to sort out, both from basic scientific point and from a practical administering these things to patients and what are the potential long term consequences.For example, unlike medications, which are therapies that you can stop if there are adverse effects, often administering a gene therapy is a one-and-done thing that can't be retracted. Thinking even about the ethical framework of that and the framework of explaining to patients that we don't know the ten, twenty-year consequences of that, is part of the informed consent process, for example. So, there's still so much work that is going to be transformational, not just from the, you know, the big picture, but from developing all, you know, from going through all of these steps to really make these kinds of therapies a reality. Dr Smith: Well, it's really amazing. And, you know, we're seeing this in multiple different areas in neurology. So, well done. You run the child neurology residency program there, I understand. I try to snoop on people before I talk to them because we haven't met before this. And you're obviously a very a very good educator. Thank you so much for talking with me today. I don't spend a lot of time in epilepsy, but every time I do one of these, I kind of want to go back and do something different because it's such a neat field. Thank you. Dr Kessler: You're welcome. It was my pleasure. Dr Smith: Again, today I've been interviewing Dr Sudha Kessler about her article on epilepsy genetics, which is truly outstanding. This article appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you, listeners, for joining us today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
From 2019: Bioengineering Innovation Outreach Challenge 2019 prize winners by Ian Woolf, Professor Hala Zrieqat talks about the ARC Bioengineering Innovation Centre, Dr Gavinda Singh talks about his research in cancer cures and his mentorship, Team Team from Sydney Girls High School talk about their Epilepsy brainwave monitoring solution, Team Biochis from Mount Carmel Catholic School talk about their nutritional deficiency detecting watch, Team Discovery Channel from Fort St High School talk about implanting an epinephrine dispensor for allergic shock, PhD students Mathilde Longfield and Ben Ferguson talk about mentoring the high school students, Team Exothermics from Sydney Girls High School talks about making scorpion antivenom cheaper and easier to access, Team Tissue Box from Sydney Girls High School talks about her team's water-proof hearing aid. Hosted and produced by Ian Woolf Support Diffusion by making a contribution Team Exothermics from Sydney Girls High School Support Diffusion by buying Merchandise
Neuroimaging is a tool to classify and ascertain the etiology of epilepsy in people with first or recurrent unprovoked seizures. In addition, imaging may help predict the response to treatment. To maximize diagnostic power, it is essential to order the correct imaging sequences. In this episode, Aaron Berkowitz, MD, PhD, FAAN speaks with Christopher T. Skidmore, MD, author of the article “Neuroimaging in Epilepsy,” in the Continuum February 2025 Epilepsy issue. Dr. Berkowitz is a Continuum® Audio interviewer and professor of clinical neurology at the University of California, San Francisco Dr. Skidmore is an associate professor of neurology and vice-chair for clinical affairs at Thomas Jefferson University, Department of Neurology in Philadelphia, Pennsylvania. Additional Resources Read the article: Neuroimaging in Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @AaronLBerkowitz Guest: @ctskidmore Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Berkowitz: This is Dr Aaron Berkowitz, and today I'm interviewing Dr Christopher Skidmore about his article on neuroimaging in epilepsy, which appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast, Dr Skidmore. Would you please introduce yourself to our audience? Dr Skidmore: Thank you for having me today. I'm happy to talk to you, Dr Berkowitz. My name is Christopher Skidmore. I'm an associate professor of neurology at Thomas Jefferson University in Philadelphia. I'm a member of the Jefferson Comprehensive Epilepsy Center and also serve as the vice chair of clinical affairs for the department. Dr Berkowitz: Thank you very much for joining us and for this fantastic article. It's very comprehensive, detailed, a very helpful review of the various types of brain pathology that can lead to epilepsy with very helpful images and descriptions of some of the more common findings like mesial temporal sclerosis and some of the less common ones such as cortical malformations, heterotopia, ganglioglioma, DNET. So, I encourage all of our listeners to read your article and take a close look at those images. So, hopefully you can recognize some of these findings on patients' neuroimaging studies, or if you're studying for the right or the boards, you can recognize some of these less common congenital malformations that can present in childhood or adulthood with epilepsy. In our interview today, what I'd like to do is focus on some practical tips to approaching, ordering, and reviewing different neuroimaging studies in patients with epilepsy. So to start, what's your approach when you're reviewing an MRI for a patient with a first seizure or epilepsy? What sequence do you begin with and why, how do you proceed through the different sequences and planes? What exactly are you looking for? Dr Skidmore: It's an important question. And I think to even take a step back, I think it's really important, when we're ordering the MRI, we really need to be specific and make sure that we're mentioning the words seizures and epilepsy because many radiology centers and many medical centers have different imaging protocols for seizure and epilepsy patients as compared to, like, a stroke patient or a brain tumor patient. I think first off, we really need to make sure that's in the order, so that way the radiologist can properly protocol it. Once I get an image, though, I treat an MRI just like I would a CAT scan approach with any patient, which is to always approach it in the same fashion. So, top down, if I'm looking at an axial image. If I'm looking at a coronal image, I might start at the front of the head and go to the back of the head. And I think taking that very organized approach and looking at the whole brain in total first and looking across the flare image, a T2-weighted image and a T1-weighted image in those different planes, I think it's important to look for as many lesions as you can find. And then using your clinical history. I mean, that's the value of being a neurologist, is that we have the clinical history, we have the neurological exam, we have the history of the seizure semiology that can might tell us, hey, this might be a temporal lobe seizure or hey, I'm thinking about a frontal lobe abnormality. And then that's the advantage that we often have over the radiologist that we can then take that history, that exam, and apply it to the imaging study that we're looking at and then really focus in on those areas. But I think it's important, and as I've illustrated in a few of the cases in the chapter, is that don't just focus on that one spot. You really still need to look at the whole brain to see if there's any other abnormalities as well. Dr Berkowitz: Great, that's a very helpful approach. Lots of pearls there for how to look at the imaging in different planes with different sequences, comparing different structures to each other. Correspondent reminder, listeners, to look at your paper. That's certainly a case where a picture is worth a thousand words, isn't it, where we can describe these. But looking at some of the examples in your paper, I think, will be very helpful as well. So, you mentioned mentioning to the neuroradiologist that we're looking for a cause of seizures or epilepsy and epilepsy protocols or MRI. What is sort of the nature of those protocols if there's not a quote unquote “ready-made” one at someone 's center in their practice or in their local MRI center? What types of things can be communicated to the radiologist as far as particular sequences or types of images that are helpful in this scenario? Dr Skidmore: I spent a fair amount of time in the article going over the specific MRI protocol that was designed by the International League Against Epilepsy. But what I look for in an epilepsy protocol is a high-resolution T2 coronal, a T2 flare weighted image that really traverses the entire temporal lobe from the temporal tip all the way back to the most posterior aspects of the temporal lobe, kind of extending into the occipital lobe a little bit. I also want to see a high resolution. In our center, it's usually a T1 coronal image that images the entire brain with a very, very thin slice, and usually around two millimeters with no gaps. As many of our neurology colleagues are aware, when you get a standard MRI of the brain for a stroke or a brain tumor, you're going to have a relatively thick slice, anywhere from five to eight millimeters, and you're actually typically going to have a gap that's about comparable, five to eight millimeters. That works well for large lesions, strokes, and big brain tumors, but for some of the tiny lesions that we're talking about that can cause intractable epilepsy, you can have a focal cortical dysplasia that's literally eight- under eight millimeters in size. And so, making sure you have that nice T1-weighted image, very thin slices with no gaps, I think is critical to make sure we don't miss these more subtle abnormalities. Dr Berkowitz: Some of the entities you describe in your paper may be subtle and more familiar to pediatric neurologists or specialized pediatric neuroradiologists. It may be more challenging for adult neurologists and adult neuradiologists to recognize, such as some of the various congenital brain malformations that you mentioned. What's your approach to looking for these? Which sequences do you focus on, which planes? How do you use the patient 's clinical history and EEG findings to guide your review of the imaging? Dr Skidmore: It's very important, and the reason we're always looking for a lesion---especially in patients that we're thinking about epilepsy surgery---is because we know if there is a lesion, it increases the likelihood that epilepsy surgery is going to be successful. The approach is basically, as I mentioned a little bit before, is take all the information you have available to you. Is the seizure semiology, is it a hyper motor semiology or hyperkinetic semiology suggestive of frontal lobe epilepsy? Or is it a classic abdominal rising aura with automatisms, whether they be manual or oral automatisms, suggesting mesial temporal lobe epilepsy? And so, take that clinical history that you have to help start to hone your eye into those individual locations. But then, once you're kind of looking in these nonlesional cases, you're also then looking at the EEG and where their temporal lobe spikes, where their frontal lobe spikes, you know, using that and pulling that information in. If they saw a neuropsychologist pulling in the information in from the neuropsychological evaluation; if they have severe reductions in verbal memory, you know, focusing on the dominant temporal lobe. So, in a right-handed individual, typically the left temporal lobe. And kind of then really spending a lot of time going slice at a time, very slowly, because in some of these vocal-cortical dysplasias it can be just the blurring of the gray-white margin. What I find easiest is to identify that gray-white margin and almost track it. Like, you use the mouse to kind of track it around and say, can I outline the exact border of the gray white margin in the frontal lobe that I'm interested in or the temporal lobe that I'm interested in, kind of looking for those subtle abnormalities. Often as neurologists, we don't have the luxury of being able to immediately reformat. As I mentioned, our T1 volume acquisition study is done in the coronal plane, but sometimes you might want it in the axial plane. And so, I might reach out to the radiologist and say, hey, can you reformat this in the axial plane because I'm interested in the frontal lobe epilepsy and it's a little bit better at looking at it in that plane? And I'll have them reformat and put it back on the pack so I can look at it in that manner. And so that's a, kind of another strategy is to take what you have, but also then go back to the radiologist and say, I need to look at it this a different way. Can you reformat it for me? Looking for that gray-white matter junction is the nice way to pick up for kind of subtle cortical dysplasias. And then when you see an abnormality, to be able to put the T1, the T2, and the flare image all up next to each other and use the technology built into most of our browsers to put on what's called the localizer mode, where I can highlight a specific spot that I'm seeing on the T1 and then very easily quickly see, what does it look like on the T2? What does it look like on the flare? To kind of quickly decide, is it a true abnormality or am I only seeing it on one slice because of an artifact on that one imaging sequence? And I think that's the biggest kind of key is to make sure, is it an artifact or is it not an artifact? That's kind of the most common thing that we, I think, get confused with. Dr Berkowitz: So, some very helpful pearls there in terms of reviewing the imaging, being in dialogue with our neuroradiology colleagues to think about potentially reacquiring certain images on certain planes or looking at the images with our neuroradiology colleagues to let them know more about the clinical history and where we're sort of zooming in about possible abnormalities. Dr Skidmore: I would just add in there that when looking at especially the mesial temporal structures, because of a lot of artifacts that can be present in an individual MRI machine, it's not uncommon that the mesial temporal structure will appear brighter because of an MRI magnet artifact. And so, it's a good key to look at the hippocampus compared to the insula. And so, the hippocampus and the insula should have similar signal characteristics. You're seeing the hippocampus is bright, but the insula ipsilateral to it's normal intensity. That would suggest that that's probably a true hyperintensity on the flare-weighted image as opposed to if both are bright, unless you're suspecting a hemispheric abnormality, it's more likely to be a kind of artifact in the MRI machine. Dr Berkowitz: Okay. Those are really helpful tips, not just to analyze the hippocampus and medial temporal lobe itself---let's remember our anatomy and the circuit of Papez---and to look at associated structures for supporting evidence of a possible abnormality in the hippocampus itself. It looks like there may be something subtle. We can use some additional information from the image to try to decide if that is real or artifactual, and of course correlating with the clinical picture and EEG. I'd like to talk briefly now about some other imaging modalities that you discuss in your paper, the use of functional imaging such as PET, SPECT and fMRI. Let's talk a bit about each of these. When would you order a PET scan for a patient with epilepsy? What would you be looking for and how would you be using that to make clinical decisions? Dr Skidmore: Yeah, so these functional imaging modalities are really utilized when we're evaluating somebody that's not responding to medications. So, they're medically intractable, and we're wondering, could they be a candidate for epilepsy surgery? And so, most of these imaging modalities are really relegated to the world of epileptologists at surgical epilepsy centers. I wanted to include them, though, in the article because I do think it's important for general neurologists to understand kind of what they are, because invariably a patient sees me and then they go back to their general neurology and be like, hey, Doctor Skidmore said I had this PET scan abnormality. What do you think? So, I think it's a good idea for general neurologists to kind of understand them. So, probably the oldest that we've utilized is the FDG PET scan, basically looking at fluorodeoxyglucose and the brain's utilization of glucose. As we all remember, again, glucose is the primary molecule for energy and ATP production in the brain. And so basically, by injecting radioactive glucose in the interictal state--- so not during a seizure but in between seizures---areas of the brain that are not taking up the radiotracer will show as being hypometabolic. So, low metabolism. And hypometabolic regions in the interictal state have been associated with onset regions for epileptic seizures. Let's say you have a patient clinical history, you think they have temporal of epilepsy, EEG suggests temporal of epilepsy, but the MRI is nonlesional, meaning there's no abnormality that anybody could appreciate even at a 3 Tesla scanner. We'll get an FDG PET scan and see, is there hypo metabolism in that temporal lobe of interest? And if there is, well, that's been shown through several published papers, that's just as valuable as having an abnormality on the MRI. And so, we often again use these PET scans, especially in nonlesional cases, to try to find that subtle cortical dysplasia. Now you have your nice epilepsy protocol MRI, it says it's nonlesional. You get your PET scan, it shows hypometabolism in a region of the frontal lobe, let's say, in a in a frontal lobe epilepsy case. And then often we go back, we kind of talked about strategy of how you find those subtle lesions. Then you go back and say, well, look, this gyrus specifically on the PET scan said it's abnormal. You end up looking for really subtle, very tiny abnormalities that, even with somebody that's skilled, often at first review gets missed. So, that's how we use the PET scan. The SPECT scan is done typically in the ictal state. So, now somebody's in an epilepsy monitoring unit often, where you're injecting radio tracer at the exact moment that somebody starts having a seizure. And we know when there's increased seizure activity, the increased seizure activity---let's say it's from my right temporal lobe---is going to increase cerebral blood flow transiently to the right temporal lobe. And then if that seizure discharge spreads from the right temporal lobe maybe to the entire right hemisphere and eventually becomes a focal to bilateral tonic chronic seizure by spreading to the other side, the entire brain is going to be hypoperfused at that point. So, if you want to, as soon as the seizure starts, inject that radio tracer to see, where is the blood flow earliest in the seizure? And then we might do an interictal SPECT when you're not having a seizure. Look at, all right, what's the normal blood flow when somebody's not seizing? What's it like when they're having a seizure? And then the area that has increased activity would- might suggest that's where the seizure started from. But we have to be very careful because again, some seizures can spread very rapidly. So, if you delay injecting an injection ten, fifteen, twenty seconds, the seizure could have already propagated to another region of the brain, giving you a false positive in another location. So, you have to be very careful about that modality. I think what's most exciting is the functional MRI because the functional MRI, for many, many centers, is replacing a very old technique called the WADA test. So, in the WADA test, typically you place a catheter angiogram into the internal carotid artery and transiently introduce a sedative medication to put, let's say, the left hemisphere to sleep because you wanted to see what functions were still active in the right hemisphere. And then the surgeon would move the catheter or the right internal carotid artery, and you inject a sedative on that side after the left hemisphere is recovered and see what the left hemisphere can do. And we used that for language dominance, we used that for memory dominance. And while most individuals did fine with angiograms, unfortunately complications do occur and there's injury to the artery, there could be strokes that can- that have happened, which can be quite devastating for the patient. And so, functional MRI is a nice, noninvasive way for us to map out language function, motor function, sensory function, visual function, and is starting to show some usefulness also for mapping out kind of memory function, dominant memory function, meaning verbal memory compared to visual memory. To be able to do those things noninvasively becomes really important because, if we're talking about epilepsy surgery, we want to make you seizure-free but neurologically intact. And so, we need to understand the relationship between where we think the seizures are coming from and where eloquent cortex is so we can properly counsel you and avoid those regions during any planned surgery. Those are the three most common functional imaging modalities that we're using now to supplement the rest of the presurgical work. Dr Berkowitz: Very helpful. So, these are studies, PET, SPECT, and fMRI, that would really be obtained predominantly in patients in whom epilepsy surgery was being considered to have more precise lesion localization, as well as with the fMRI to get a better sense of how to provide the safest maximal resection of epileptogenic tissue while preserving functions. Dr Skidmore: That's a perfect summary. Dr Berkowitz: Fantastic. This has been a really helpful interview with Dr Skidmore and a really fantastic article. As I said, a picture is worth a thousand words, so I definitely encourage you to read the article and look at the images of some of the conditions we've been talking about and some of these findings that can be seen on interictal PET or ictal SPECT to get a sense of the visual aspects of what we've been discussing. So again, today I've been interviewing Dr Christopher Skidmore about his article on neuroimaging and epilepsy, which appears in the most recent issue of Continuum on Epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you so much to our listeners for joining us today. Dr Skidmore: Thank you for having me. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.
Everybody needs a Jonathan Shapiro in their life. In this special season premiere of Talk About It, Greg sits down with his closest mensch and the other half of his party of two at the deli, Jonathan Shapiro. When life gets hard, Greg turns to him for sage advice and a nice bowl of matzoh ball soup. As you'll find out in this episode, Jonathan has quite a personal history, beginning his career as a federal prosecutor and eventually becoming... you guessed it... a television show writer and showrunner. (BOSTON LEGAL, THE PRACTICE, GOLIATH, THE BLACKLIST, among many others.) Not only that, Jonathan has a deep personal connection to Greg because he is also the father of a son with epilepsy, the incredible Zeke Shapiro. The two mensches talk about Zeke's journey with his condition, and his abject bravery to perform stand up comedy and become a news anchor. They have always - and will continue to - lean on each other when times are really hard, or celebrate together when times are really great, and everything in between. All over a tuna melt on rye heels, of course. You don't want to miss this episode! The Talk About It podcast is excited to be sponsored in part by Neurelis. The Talk About It podcast is excited to sponsored in part by Seizures Are Signs — dedicated to educating families on the importance of early and specific diagnosis by providing an assessment to help get the conversation started, educational information, stories from families who have found a diagnosis, links to advocacy groups, and more. For more information, go to SeizuresAreSigns.com. Seizures are Signs is made available by Jazz Pharmaceuticals.