Podcasts about sudep

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, "Sleep and Seizures: Emerging Insights From AAN 2025," Nancy Foldvary-Schaefer, DO, director of the Sleep Disorders Center at Cleveland Clinic, reflected on key sleep-related topics presented at this year's AAN Annual Meeting. She highlighted the growing clinical interest in underrecognized conditions like idiopathic hypersomnia and narcolepsy, stressing the need for better awareness and earlier diagnosis. Foldvary-Schaefer also detailed the development of the Sleep by Cleveland Clinic mobile app, designed to improve screening for common sleep disorders with validated tools and real-time resources. Additionally, she discussed new findings on the prevalence of obstructive sleep apnea in adults with epilepsy, pointing to the importance of routine sleep screening in this population, regardless of seizure severity. Finally, she shared exploratory data on SSRI use and peri-ictal respiratory patterns in epilepsy, offering new perspectives on potential protective mechanisms tied to SUDEP risk. Looking for more neuromuscular discussion? Check out the NeurologyLive® Sleep disorders clinical focus page. Episode Breakdown: 1:00 – Key sleep topics discussed at AAN 2025 and the growing interest in hypersomnia 5:45 – Development and purpose of the SLEEP mobile app by Cleveland Clinic 10:35 – Findings on obstructive sleep apnea prevalence in adults with epilepsy 15:05 – Neurology News Minute 17:10 – The need for sleep disorder screening in epilepsy clinical trials 19:45 – Exploratory findings on SSRI use and respiratory patterns in patients with epilepsy The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Approves Pre-Filled Syringe Administration for FcRn Modulator Efgartigimod FDA Approves CT-132 as First Digital Therapeutic for Preventive Treatment of Episodic Migraine FDA Expands Diazepam Nasal Spray Indication to Treat Ages 2 to 5 Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.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! ------------------------------------------

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.

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.

Sharp Waves spoke with a neurologist and a cardiologist who are part of a team researching the interactions among seizures, heart function, heart health, and SUDEP. Learn more about their research.Selected publications from Drs. Lin & Fialho and colleagues:Determining factors of electrocardiographic abnormalities in patients with epilepsy: A case-control study (2017, Epilepsy Research)Maximal/exhaustive treadmill test features in patients with temporal lobe epilepsy: Search for sudden unexpected death biomarkers (2017, Epilepsy Research)Echocardiographic risk markers of sudden death in patients with temporal lobe epilepsy (2018, Epilepsy Research)Increased cardiac stiffness is associated with autonomic dysfunction in patients with temporal lobe epilepsy (2018, Epilepsia) 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.

Health Correspondent Fergal Bowers speaks to Tina and Katie Young about the death of their daughter and sister Louise from Sudden Unexplained Death in Epilepsy and Dr Yvonne Langan, Neurophysiologist at St James Hospital, discusses the findings of a new study into SUDEP.

In this episode, we talk about Sudden Unexpected Death in Epilepsy (SUDEP). Sadly, almost 300 people a year die due to epilepsy in Scotland.Ahead of SUDEP Action Day on Wednesday 16 October, we talked to Sammy Ashby, Chief Executive at SUDEP Action.We discussed the work that SUDEP Action does to help bereaved families and this year's #OurRisksOurRights campaign, which looks to highlight that every person living with epilepsy has a right to be told about the risks that come with the condition.

In this episode, I use illustrative patient memoirs to discuss its diverse and deceptive causes and manifestations. I also use historical stories, such as that of composer George Gershwin, to illustrate the challenge of making a diagnosis of seizures. I also explore the manifold mimics of epilepsy, particularly exploring how fainting can easily be mistaken for an epileptic event. The podcast also goes back in history to trace the first documentation of epilepsy and the revolutionary impact of English neurologist John Hughlings Jackson in our understanding of the disease, and the work of William Gowers in elucidating the nature of epileptic auras. I also review the complications of epilepsy such as sudden death in epilepsy, SUDEP.

In observance of Sudden Unexpected Death in Epilepsy (SUDEP) Action Day on October 16th, we speak with the Maffie family about the tragic loss of Anthony Maffie to SUDEP and their advocacy and fundraising efforts in Anthony's honor. The post Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy appeared first on CURE Epilepsy.

Aufklärung als erste wichtige Maßnahme zur Prävention von SUDEP, dem plötzlich auftretenden, ungeklärten Tod bei Epilepsie, das erläutern Herr Prof. Rainer Surges, Direktor der Klinik für Epileptologie am Universitätsklinikum Bonn, und Frau Dr. Iris-Maria Killinger, Anwältin und Mutter eines an SUDEP verstorbenen Kindes. Es ist entscheidend, dass Patient:innen und deren Umfeld ein Bewusstsein für SUDEP entwickeln und wissen, was passieren kann, um im Notfall entsprechend reagieren zu können. Durch Bewusstsein, Wissen und Handlungskompetenz möchten wir in unserer heutigen Folge über SUDEP aufklären und zu dessen Prävention beitragen.

In dieser ganz besonderen Folge sprechen Prof. Dr. Rainer Surges und Simone Claß mit Dr. Iris Killinger, die gemeinsam mit ihrem Mann nach dem Tod ihres Sohnes Oskar infolge eines SUDEPs die Oskar-Killinger-Stiftung gründete, um sich für die Aufklärung zu Risiken und Präventionsmöglichkeiten von SUDEP einzusetzen. In großer Offenheit erzählt Iris Killinger vom tragischen Tod ihres Sohnes, von ihrem Gefühl, damals zu wenig über SUDEP gewusst zu haben und von ihrer Mission, die sie und ihr Team im Rahmen der Stiftungsarbeit verfolgen. Zur Homepage der Oskar-Killinger-Stiftung: https://sudep.de/ SUDEP = Sudden Unexpected Death in Epilepsy / Plötzlicher unerwarteter Tod bei Epilepsie Eine eigene Folge zum Thema SUDEP finden Sie ebenfalls in der "Scharfen Welle" (Folge 5). Haben Sie eine Frage zu Epilepsien und epileptischen Anfällen, die wir in einer unserer nächsten Podcastfolgen beantworten sollen? Oder möchten Sie uns einfach nur ein Feedback zur "Scharfen Welle" geben? Dann melden Sie sich per Mail unter: scharfe.welle@ukbonn.de Wir freuen uns auf Ihre Nachricht! Internetauftritt der Klinik und Poliklinik für Epileptologie

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

Hear about the origins of Purple Day, its purpose, the positivity and how to make a difference! With founder: Cassidy Megan!! We talk about how Purple Day was founded, Cassidy's personal epilepsy diagnosis, school, stigma, the diversities of the epilepsies, SUDEP, varying cultural experiences, media portrayals, credible sources of information, and brilliant clinicians!  ------------------------------------------

Could the amygdala be responsible for lack of air hunger and SUDEP? Learn about the research from neurosurgeon and researcher Brian Dlouhy. ------------------------------------------

Learn about SUDEP (Sudden Unexpected Death in Epilepsy), SUDEP Action Day (18th Oct 2023), minimising risks, and saving lives! With Sammy Ashby of SUDEP Action. ------------------------------------------

This week the Lautners have the honor of sitting down with Victor and Libby Boyce, parents of child star Cameron Boyce, who passed away in 2019 from SUDEP (Sudden Unexpected Death in Epilepsy). They offer an inside look at the incredible life Cameron led and the legacy he left behind. They explain how and when epilepsy became part of their lives and how Cameron wasn't considered epileptic until his second seizure. This is one of their many frustrations with the medical system, which failed to arm them. Their main message in coming on the podcast today is to take an epilepsy diagnosis seriously. There is a lack of information about epilepsy, despite there being so many different types and it being one of the most common neurological conditions. They were never even informed of SUDEP, the complication that took their son's life. They talk about The Cameron Boyce Foundation, with the mission of raising awareness of epilepsy, discuss their grieving process, share what the outpouring of love has felt like, and offer advice on what to say to someone who has lost a loved one.   Cameron lives on through his sister, parents, friends, and The Cameron Boyce Foundation. We urge other people of influence to speak out if they suffer from epilepsy, and encourage you to check out the foundation to learn more about the disorder: www.thecameronboycefoundation.org  Thanks to our awesome sponsors for supporting this episode:  GreenChef — Go to GreenChef.com/60thesqueeze and use code 60thesqueeze to get 60% off plus free shipping  Earth Breeze — Subscribe to Earth Breeze and save 40%! Go to earthbreeze.com/thesqueeze   Jenni Kayne — Find your forever pieces @jennikayne and get 15% off with promo code THESQUEEZE at jennikayne.com/THESQUEEZE! #jennikaynepartner  Fast Growing Trees — Get 15% off your entire order when you go to FastGrowingTrees.com/THESQUEEZE, but only through OCTOBER 15TH  To email us your questions or share your story, you can reach out to lautner.thesqueezepodcast@gmail.com. Be sure to rate, review, and follow the podcast so you don't miss an episode! Plus, follow us on Instagram, @thesqueeze and personally @taylautner and @taylorlautner + on TikTok @thesqueezepodcast  To learn more from The Lemons Foundation, follow @lemonsbytay on Instagram and visit lemonsbytay.com  Learn more about your ad choices. Visit megaphone.fm/adchoices

Episode 721 - Victor Boyce is a First Class Father and founder of The Cameron Boyce Foundation.  Victor's son Cameron Boyce tragically passed away from Sudden Unexpected Death in Epilepsy Patients.  Cameron, a world famous TV/Movie star who only had 5 seizures in his lifetime before his death from SUDEP in 2019 at the age of 20.   In this Episode, Victor shares his Fatherhood journey which includes his late son Cameron and his daughter Maya.  He discusses the importance of funding Epilepsy research and the lack of knowledge about Epilepsy despite the fact that 1 in 26 people have it and can develop it at ANY AGE in life making it the most common neurological disease.  He describes the painful loss of his son and how his daughter has been a blessing to him throughout the process of grieving for Cameron.  He talks about his discipline style with his kids growing up.  He offers some great advice for new or about to be dads and more! The Cameron Boyce Foundation  - https://www.thecameronboycefoundation.org Navy SEAL Swim Fundraiser - https://impact.navysealfoundation.org/fundraiser/4796365 The Alec Lace Show - https://linktr.ee/TheAlecLaceShow My Pillow - https://mystore.com/fatherhood Promo Code: Fatherhood  First Class Fatherhood: Advice and Wisdom from High-Profile Dads - https://bit.ly/36XpXNp Watch First Class Fatherhood on YouTube - https://www.youtube.com/channel/UCCD6cjYptutjJWYlM0Kk6cQ?sub_confirmation=1 More Ways To Listen - https://linktr.ee/alec_lace Follow me on instagram - https://instagram.com/alec_lace?igshid=ebfecg0yvbap For information about becoming a Sponsor of First Class Fatherhood please hit me with an email: AlecLace@FirstClassFatherhood.com

Hundreds of deaths from epilepsy could be prevented every year if the condition was managed properly - according to the founder of a British charity.In the UK, at least 1,000 people with epilepsy die each year.  In this powerful and informative podcast, journalist Angela Walker sits down with Jane Hanna OBE from SUDEP Action, who says many of these deaths could be prevented if changes were made in by the NHS,  in local healthcare management and if care for the the condition was properly funded  by the government.Having lost her partner to sudden death in 1990, Jane is passionate about preventing such tragedies and shedding light on the often under-reported issue of sudden unexpected death in epilepsy .Jane shares her personal experience and reveals that every week, around 21 families face the same devastating loss. SUDEP occurs when an individual diagnosed with epilepsy or experiencing seizure-related episodes suddenly passes away, usually during sleep, with no prior warning signs. Angela and Jane delve deeper into the risk factors associated with SUDEP and discuss the importance of raising awareness among medical professionals and the public.The discussion also explores the challenges faced by the medical community in managing epilepsy cases and calls for a change in protocols to prioritise early diagnosis and intervention. Jane explains about the SUDEP app which can help patients and medics manage the condition better.The podcast delves into the alarming rise in maternal deaths related to epilepsy and discusses the potential link with certain antiseizure medications. Jane highlights the importance of specialized communication and counselling for pregnant women with epilepsy,.Join Angela Walker and Jane Hanna as they bring this critical issue to the forefront, sharing inspiring stories and insights from individuals and families impacted by epilepsy. Through awareness, understanding, and collaborative efforts, they believe that many of these heart-wrenching deaths can be prevented, paving the way for a safer future for those living with epilepsy.#EpilepsyAwareness #SUDEPAction #PreventEpilepsyDeaths #HealthcareChange #EpilepsyManagement #RaisingAwareness #EpilepsyPodcast #MedicalCommunity #EarlyDiagnosis #SUDEPApp #MaternalHealth #PregnancyAndEpilepsy #CollaborativeEfforts #SaferFutureSupport the showhttps://www.angelawalkerreports.com/

Do patients want information about SUDEP? When do you give it? Does information help reduce SUDEP deaths?    Credit available for this activity expires: 8/3/2024 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/995044?ecd=bdc_podcast_libsyn_mscpedu

In this episode, our Fundraising Manager Gemma Fleet talks to Dianne who's daughter Emma sadly passed away due to Sudden Unexplained Death In Epilepsy (SUDEP) in April 2023. Dianne shares her memories of Emma. Her life living with epilepsy and how she would like Emma to be remembered. If you have lost a loved one due to SUDEP and need to talk to someone, please call our freephone Helpline on 0808 800 2200 or email contact@epilepsyscotland.org.uk

Sudden Unexpected Death in Epilepsy (SUDEP) affects about one out of every 1.000 people with epilepsy.  Despite its rarity, SUDEP is important to discuss, but some physicians are wary of having the conversations. Dr. Emma Carter spoke with Dr. Suvasini Sharma about SUDEP, why it's important to inform patients and families about it, and how to manage risk factors.The greatest risk factor for SUDEP is uncontrolled generalized tonic-clonic seizures (previously called grand mal seizures). Nocturnal seizures and certain comorbidities, such as developmental delay, also are risk factors.SUDEP information for families from the ILAE (ilae.org) Relevant articles:Sudden Unexpected Death in Epilepsy (SUDEP) - What pediatricians need to know Garg D, Sharma S, 2020Effect of counselling of parents of children with epilepsy focusing on sudden unexpected death in epilepsy Kumari S, et al., 2022Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists' opinions Asadi-Pooya AA, et al., 2022  The International League Against Epilepsy invites you to explore the ILAE Academy: Interactive, practice based online courses for health care professionals who diagnose and treat epilepsy. Find more information at ilae-academy.org. Support the showSharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.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, Twitter, and Instagram.

Dr. Adam Greenblatt discusses how to counsel patients about sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

Dr. Adam Greenblatt discusses the attributes and causes of sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

Dr. Adam Greenblatt discusses sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

In this episode Dr. Audrey Nath speaks with Victor and Libby Boyce, the parents of actor Cameron Boyce who passed away in 2019 from sudden unexpected death in epilepsy (SUDEP). Victor and Libby discuss Cameron's passion for performing and philanthropy as well as his epilepsy diagnosis that led to SUDEP—a rare complication of epilepsy. Victor and Libby also talk about The Cameron Boyce Foundation, an organization established to raise awareness about SUDEP and to fund epilepsy research. Next Dr. Nath talks to Dr. Alica Goldman, epileptologist and professor of neurology at Baylor College of Medicine. Dr. Goldman discusses epilepsy genetics and SUDEP and provides information about various therapies and resources. Additional Resources: https://www.thecameronboycefoundation.org/ awareness/https://www.brainandlife.org/articles/cameron-boyce-foundation-launches-new-epilepsy-initiative https://www.brainandlife.org/disorders-a-z/epilepsy/ https://www.aesnet.org/ https://www.epilepsy.com/ Social Media:   Guest: The Cameron Boyce Foundation @thecameronboycefoundation (Instagram) Libby Boyce @libboyce (Instagram); Victor Boyce @thevictorboyce (Instagram) Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Audrey Nath @AudreyNathMDPhD

Padmaja Kandula, M.D. discusses what patients should know about SUDEP (Sudden Unexpected Death in Epilepsy). She reviews the recent developments with treating seizures and epilepsy and how people can manage the conditions. She notes how the prevalence of certain risk factors and uncontrolled severe types of seizures in certain populations can impact the likelihood of SUDEP. Finally, she highlights the multidisciplinary care and treatments available through the Epilepsy Center at Weill Cornell MedicineTo schedule with Padmaja Kandula, M.D

This week on Seizing Life® we welcome Hannah Whitten to the podcast. Hannah's older brother Dylan lived with epilepsy nearly his entire life, until he passed away from SUDEP at the age of 25. Though she was 5 years younger, Hannah was a constant companion to Dylan as they grew up and was often his main caregiver. She tells us about her brother's attitude and determination not to let epilepsy define or limit his life, attending and graduating from college, working, and eventually living on his own. Hannah also talks about her experiences having a sibling with epilepsy and the impact that epilepsy has had on their family. The post Remembering a Brother Lost to SUDEP and Finding Hope in Community appeared first on CURE Epilepsy.

Are you grieving and desperate for people to understand how you really feel?    After author Gwendolyn Burton's 26-year old son died suddenly from an epileptic seizure, no one around her could say anything to help her feel better. She's spent years working through the grieving process and has captured her journey and the lessons learned in her new book “You Don't Know Just How I Feel”.    During our conversation, Gwendolyn explains why we should never tell a grieving person, “I know just how you feel.” Grief is so personal, but in this episode, Gwendolyn shares practical boundaries, grief self-care, how to handle social media as well as how to find hope after devastating loss.    RESOURCES FROM THIS EPISODE gwendolynoburton.com You Don't Know Just How I Feel   ABOUT OUR SPECIAL GUEST After three miscarriages and an adult son who passed away from sudden unexpected death in epilepsy (SUDEP), Gwendolyn Burton is uniquely qualified to help others navigate their grief journey by discussing common challenges and misconceptions. She studied with grief expert David Kessler, founded Sisters in Solace (SiS), a support group for mothers of child loss, and is a Certified Grief Educator. Gwendolyn enjoys physical fitness and lives in Aurora, Colorado, with her husband, son, and three dogs.

I hope you will listen as Caren Coleson shares about her grandson, Jax, and his battle with epilepsy. Caren is also sharing about the Walk to End Epilepsy tomorrow. In spite of the loss of his life to SUDEP, the Coleson family has found ways to honor Jax's legacy, including his two brothers, Liam and Royce. Listen and share.

I hope you will listen as Caren Coleson shares about her grandson, Jax, and his battle with epilepsy. Caren is also sharing about the Walk to End Epilepsy tomorrow. In spite of the loss of his life to SUDEP, the Coleson family has found ways to honor Jax's legacy, including his two brothers, Liam and Royce. Listen and share.

CURE Epilepsy Board Member Hannah Whitten shares her experiences growing up with a brother with epilepsy and the tragedy of losing him to SUDEP. The post Remembering a Brother Lost to SUDEP and Finding Hope in Community appeared first on CURE Epilepsy.

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, we spoke with Christopher Elder, MD, clinical assistant professor of neurology, Comprehensive Epilepsy Center, NYU Langone Health. He joined the show to talk about the latest updates in the care of patients with epilepsy, the clinical therapeutic pipeline developments on the horizon, and the need to continue stressing conversations around sudden unexpected death in epilepsy (SUDEP). Episode Breakdown: 1:15 – The rise of neurostimulation in epilepsy care 4:00 – Increasing implantation of minimally invasive options 5:15 – Patient reception to nontherapeutic approaches 7:45 – The impact of cenobamate (Xcopri; SK Life Science) on the paradigm 10:35 – Managing refractory epilepsy 12:00 – Upcoming options for those with generalized epilepsy 13:50 – Neurology News Minute 18:30 – Path forward for gene and cell therapies in epilepsy 21:00 – The need to improve early recognition of epilepsy 25:20 – Standardizing questionnaires and information for epilepsy 27:00 – The need to continue discussing SUDEP This episode is brought to you by the Medical World News streaming service. Check out new content and shows every day, only at medicalworldnews.com The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Approves Midazolam Autoinjector for Status Epilepticus Sirolimus Topical Gel Available for Facial Angiofibroma Associated With Tuberous Sclerosis Complex FDA Lifts Hold on Phase 2 Trial of SRP-5051 in DMD Amenable to Exon 51 Skipping Philips Respironics Recalls Masks for BPAP and CPAP Machines After Safety Concerns FDA Advisory Committee Votes to Recommend AMX0035 for Treatment of ALS Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

This week on Seizing Life we present personal stories of three key areas of epilepsy research: Post-Traumatic Epilepsy, SUDEP, and Drug-Resistant epilepsy. The post Epilepsy Stories and the Research Making a Difference appeared first on CURE Epilepsy.

Sometimes, it feels like the world is really big and at other times, it feels really small. When I first spoke with today's guest, Jen, the world actually felt quite tiny. She is from my home state of Iowa and lives in the town where I went to college, beautiful Decorah, Iowa. She graduated a year ahead of me and we even have two mutual friends - Sarah a friend from high school, and Meredith, one of my best friends from college. This is amazing enough, but even more precious to me is the timing of this introduction. You see, Sarah introduced Jen to the podcast about two years ago. Meredith knew about our similar stories from the first days after Andy died, but she did not introduce us until now. Why would that be? What triggered Meredith to connect us now?  I feel like Meredith must have been nudged by God at just the right moment in time. I certainly always would have appreciated talking to her and our shared experiences, but honestly, I needed to talk to her now. Brendan died shortly after graduating from high school, 105 days into his freshman year of college, to be exact. Right now, in my life, I find myself constantly thinking about what ‘should be' happening. We should have just celebrated Andy's 18th birthday. We should be 2 weeks from his graduation from high school. We should be starting to buy things for his dorm room as we prepare to send him to college. Every graduation announcement is a trigger. Innocent conversations at work about graduation parties make me want to burst into tears. I seem to be experiencing trigger after trigger over the past few weeks. Now, at this moment in time, because of Sarah and Meredith, Jen is here for me. Brendan did graduate from high school and even started college, but then suddenly died in his sleep from a seizure. Jen appreciates those precious memories in ways that other moms just can't. These are some of her last memories of her son so she truly understands the longing that I have right now. So today I say, “Thank you, Sarah. Thank you, Meredith. And finally, thank you, Jen. Thank you for listening. Thank you for understanding and thank you for bringing a bit of Iowa home to me at just the right moment.

When Monica's daughter, Zoey, suddenly died on her 5th birthday on a trip to Disney World, she did not know how she could go on. How could she continue to be a good mother to her other daughter, a wife to her husband? As a physician, how could Monica continue to care for her patients? I feel so drawn to Monica today, because I, too, struggled with those same thoughts. I would find myself wondering if I could not save Andy, did I have any business trying to treat other patients? If I 'let him down,' was it possible that i would let others down as well? On the surface, I could see that these are not rational questions, but inwardly, they would still sneak in. Is there a magic answer to continuing to live after devastating loss? In some ways, the answer is definitely 'no', but at other times, I would say the answer to living each day is to simply do it 'one day at a time.' Trying to think too far ahead can be overwhelming, but taking things minute by minute and day by day is truly the key. This is how we all must survive. Today, Monica relates her 'secret' to surviving the last months since Zoey died. That secret is to collect little 'nuggets' of wisdom from other people who love her, grasping new ones to give her daily comfort. One such nugget that she has recently been clinging to is to think, 'Every day that I make it, I am one day closer to Zoey.' It is so easy for us to count the days since we lost our children. We know the date. It is written on a tombstone at the cemetery, but if we think of things differently, it changes our perspective. It is a fact that each day we live brings us one day closer to unification and not just one day further from loss. Somehow, that thought gives me just a little bit more peace to live each day.

Join Jimbo, 80's E, and the Emery family as they talk about their son Connor, who passed away suddenly due to SUDEP. Happy 21st Birthday Connor! See acast.com/privacy for privacy and opt-out information.

This is the 3rd of 4 episodes of Heart Dad Sunday -- a mini-series developed for Heart Month, February 2022. Heart Dad Frank Jaworski returns in this episode as the Guest Host. He interviews long-time friend, Michael Liben, about what it was like to raise a daughter with a critical congenital heart defect in Israel. Not only did Michael's daughter have double-outlet right ventricle, but she also had autism and she later developed epilepsy as well. Michael is the father of three children: 27-year old Idan, 25-year-old Sapir, and forever 15-year old Liel. Michael and Leora have been married for 34 years and Michael made aliyah to Jerusalem after college.Michael was a former filmmaker, high school teacher, adjunct professor of television and radio production, and he now works in security. For almost 6 years Michael has been working with Frank's wife, Anna, as the Host of a bereavement podcast now entitled, “Bereaved But Still Me.”Links to Michael's other appearances on "Heart to Heart with Anna"Congenital Heart Defects Around the Globe: IsraelLiel and Her Many Gifts: A Family's Decision to Donate One Girl's Lungs, KidneysMichael and Jamie: An Interview with an Organ Recipient and Donor's DadLink to Michael's podcast -- Bereaved But Still MePlease visit our Social Media and Podcast pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsiteAnna's Buzzsprout Affiliate Link (we both benefit if you sign up with Buzzsprout with my link - yay!) Support the show (https://www.patreon.com/HearttoHeart)

Our Neuropsychologists, Dr. Laura Jansons Dr. Skip Hrin, AND Neurofeedback legend Jay Gunkelman review and discuss: The Surgeon General's Warning Report re: Mental Health of our Children The Death of 33-year-old former NFL Wide Receiver Demaryius Thomas from SUDEP "Signal In the Noise" the Documentary about our own Jay Gunkelman Sleep Hygiene See bottom of the page for the plethora of links discussed today We thank our Patreon Supporters: https://www.patreon.com/NeuroNoodleFeatured Business: Outrageous Baking, Tor Talk, Joshua M of Alternative Brain Therapy, and MARA https://www.outrageousbaking.com/ https://tortalk.se/?lang=en https://neurofeedbackcare.com/ "EEG and Me". "Sandhya M", "Johnathan January-Turrall", "Rowan January-Turrall" Have an idea for a topic or guest? pete@neuronoodle.com Jansons.com DrSkipHrin.com Some of the Links Discussed in the show: (go easy on Pete its hard to keep up with Jay) https://www.nanonline.org/nan/ https://nanonline.org/nan/Education_Events/Annual_Conference/NAN/_ContinuingEducation/_Conference/2021_DC/2021_Conference.aspx?hkey=e4c298c1-b18c-4323-af16-9679f933ba64 https://en.wikipedia.org/wiki/Acetylcholine https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667 https://en.wikipedia.org/wiki/Suprachiasmatic_nucleus https://www.sleepfoundation.org/circadian-rhythm-sleep-disorders#:~:text=A%20delayed%20circadian%20rhythm%20can,an%20early%20wake%2Dup%20time. https://www.epilepsy.org.uk/info/syndromes/electrical-status-epilepticus-during-slow-wave-sleep-esess https://www.healthline.com/health/epilepsy/intractable-epilepsy#what-is-it https://www.gofundme.com/f/the-release-of-the-gunkelmentary https://www.stens-biofeedback.com/mary-tracy https://www.imdb.com/title/tt13181022/ https://www.bfi.org.uk/ https://fargofilmfestival.org/index.php/about/ https://www.rehobothfilm.com/event/festival/ --- Send in a voice message: https://anchor.fm/neuronoodle/message Support this podcast: https://anchor.fm/neuronoodle/support

On this episode of Seizing Life, we speak with former CURE Grantee and the Director of the Comprehensive Epilepsy Program at The Hospital for Sick Children in Toronto Dr. Elizabeth Donner about all aspects of SUDEP. The post SUDEP: What To Know and What To Do appeared first on CURE Epilepsy.

In observance of SUDEP Action Day on Wednesday, October 20, we speak with Dr. Elizabeth Donner about all aspects of SUDEP (Sudden Unexpected Death in Epilepsy). In this thorough and thoughtful discussion, Dr. Donner explains what SUDEP is, what we The post SUDEP: What To Know and What To Do appeared first on CURE Epilepsy.

Meine Freundin Iris hat ihr Kind verloren. Ihr Sohn Oskar starb vor zwei Jahren nachts im Schlaf, wenige Wochen vor seinem 15. Geburtag. Oskar war Epileptiker, er wurde behandelt und ging regelmäßig zu seinen Untersuchungen. Was seine Eltern nicht wussten war, dass er in Lebensgfahr schwebte. Sudep heißt der plötzliche Epilepsietod, an dem allein in Deutschland pro Tag zwei Menschen sterben. Dennoch wird über dieses Risiko nicht oder nur unzureichend aufgeklärt. Iris und Johann Killinger, Oskars Eltern, haben eine Initiative gegen den plötzlichen Epilepsietod gegründet. Sie kämpfen für Aufklärung und für das Leben anderer, um dem vermeidbarem Tod ihres Sohnes einen Sinn abzuringen. Das Unerträgliche ertragen. Das Gespräch mit Iris über Oskars Tod und das Weiterleben ohne ihn, ist schwer auszuhalten. Präzise schildert sie den Abschied von ihrem Kind und von dem Leben, dass sie kannte und das nie wieder so sein, wie es war. Aber es ist auch ein Gespräch über Hoffnung und Trost und darüber, dass wir unser Glück selbst bestimmen, selbst dann, wenn es zerbrochen ist.

n August of 2020, Geoff Applegate lost his fiancé Zsatara to SUDEP just weeks before the couple was to be married. Geoff shares his ongoing journey through the grieving process including what he has personally found helpful, what he's learned about helping his son cope with the loss, and how he keeps Zsatara's memory alive by raising awareness about SUDEP. The post After SUDEP: A Journey of Grief and Hope appeared first on CURE Epilepsy.

After the loss of his fiancé to SUDEP, Geoff Applegate a single-parent was left coping with his own grief while also learning how to help his young son understand the loss of his mother. The post After SUDEP: A Journey of Grief and Hope appeared first on CURE Epilepsy.

In this episode, The Good GP interviews Dr Athanasios Gaitatzis on the topic of sudden unexpected death in epilepsy (SUDEP). This episode explores what is SUDEP, the demography and who is most at risk – including a look at the risks in children. We also cover what can be done to modify/reduce the risk of SUDEP and the GP's role in educating and helping patients understand the risks of SUDEP. Dr Athanasios Gaitatzis is a Neurologist and epileptologist. Dr Gaitatzis works at the Neurology Department at Sir Charles Gairdner Hospital, and at Perron Institute for Neurological and Translational Science. Resources discussed: SUDEP epilepsy action Australia assessment checklist https://www.epilepsy.org.au/sudep-checklist/ https://www.epilepsywa.asn.au https://www.epilepsywa.asn.au/services/#seizure-alert-technologies https://www.epilepsywa.asn.au/services/#epilepsy-grief https://www.epilepsy.org.au https://www.epilepsy.org.au/sudep-checklist/ https://www.epilepsy.org.au/epilepsy-and-risk_sudden-unexpected-death-in-epilepsy-sudep/

On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change. The post Speaking Up About SUDEP: Two Mothers' Stories appeared first on CURE Epilepsy.

In this episode, we stare down the monster that has plagued our Epilepsy community for decades, SUDEP, or SUdden Death from EPilepsy. We present three tragic stories of SUDEP. In the United States, there are 55 (and 1 in the UK) thousand Epilepsy-related deaths in the United States each year. […] The post 026: Mortality appeared first on Brain Ablaze.

Sudden Unexpected Death in Epilepsy (SUDEP) is a risk for the more than 1/3 of people with epilepsy whose seizures are uncontrolled, and one the wider epilepsy community needs to be aware of. Often occurring when a person is asleep, SUDEP is a major concern for epilepsy patients and families alike. The post SUDEP: What You Need To Know (Rebroadcast) appeared first on CURE Epilepsy.

Sudden Unexpected Death in Epilepsy (SUDEP) is a risk for the more than 1/3 of people with epilepsy whose seizures are uncontrolled, and one the wider epilepsy community needs to be aware of. Often occurring when a person is asleep, SUDEP is a major concern for epilepsy patients and families alike. The post SUDEP: What You Need to Know appeared first on CURE Epilepsy.