Webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research

Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack of seizure control and seizure severity are the most common concerns for increased risk of SUDEP, there is also a concern that certain genetic mutations may increase SUDEP risk.   

This webinar will discuss what we know about SUDEP, specifically in the rare epilepsy community, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child. Attendees will have the opportunity to ask questions to all presenters. The webinar will also include a discussion about the latest advancements in basic and clinical epilepsy research focused on SUDEP risk and prevention.  

The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.  

This webinar is conducted in partnership with our friends at PAME and Wishes for Elliott.

The mission of Partners Against Mortality in Epilepsy (PAME) is to convene, educate and inspire all stakeholders – from the bereaved to those living with epilepsy, to health care professionals, advocates, clinical and basic scientists, and death investigators – to promote understanding and drive prevention of epilepsy-related mortality.   

Wishes for Elliott is a non-profit organization dedicated to supporting research to improve the lives and prognosis of children struggling with SCN8A mutations and similar rare epilepsies. Their collaborative DEE-P Connections project partners with more than 40 rare epilepsy groups to help educated and bring critical resources to families who have children severely affected by these disorders.

1 Sveinsson O, Andersson T, Carlsson S, Tomson T. The incidence of SUDEP: A nationwide population-based cohort study. Neurology. 2017 Jul11;89(2):170-177.

2 Keller AE, Whitney R, Li SA, Pollanen MS, Donner EJ. Incidence of sudden unexpected death in epilepsy in children is similar to adults. Neurology. 2018 Jul 10;91(2):e107-e111.


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About the Speaker:
Dr. Lhatoo is a neurologist and neurophysiologist with expertise in the medical and surgical management of intractable epilepsy. He has been a director for Level-IV epilepsy centers in the UK and USA since 2006 and an instructor for the International Stereo EEG course since its inception in 2010. Dr. Lhatoo serves as the head of the International League Against Epilepsy’s Task Force for Big Data in Epilepsy. He has a particular interest in the epidemiology, phenomenology, and pathogenesis of SUDEP. His published work has described potential biomarkers of SUDEP, including post-ictal generalized EEG suppression (PGES) in SUDEP cases, post-ictal hypotension, post-convulsive central apnea, and ictal central apnea.

 


Q&A with Dr. Lhatoo

How did you find out about SUDEP?

I’ll tell you just now is what I’ve learned about SUDEP was right here on this call with you. I didn’t think it applied to us. It wasn’t until my son’s third birthday when another one of our little buddies in our group, Emma, passed away in her sleep. She had a seizure, and they found her, I think, with her head in the pillow, and it was devastating. It was that point on that my husband and I started monitoring Lincoln, and we had a hospital grade monitor. We hooked him up every night. It used to be that we would only monitor his breathing when he was sick, when we knew that he was compromised, but from that night on, we have put Lincoln on his stat monitor every single night.

I didn’t even know that it was because of SUDEP, still. I wasn’t associating that with Emma’s passing or anything like that. We just knew we needed to monitor him. It’s not a conversation that we had with our doctors. Honestly, I thought that Lincoln has lived through so many thousands of seizures that one couldn’t possibly be the one to take him out, for lack of better terminology. I think I thought that was a non-issue. Like, “No, he’s just had lots of seizures, and he’s okay. He comes out of them.”

I’m realizing now, thanks to the doctor’s presentation, that Lincoln fits all those boxes, and we’re not going to have seizure freedom. We’re going to keep working for it, but he is very high risk. I’m comforted knowing that we’re doing what we can, and I even have questions for the doctor myself. We happened upon a solution. We can’t prevent it, but monitoring Lincoln and keeping him in our room is something that we’re comfortable with in doing what we can

Can you comment on successful ways that parents have brought this issue to your attention. I know you’re very attuned to all of this, but what recommendations do you have for parents who want to talk about this and don’t know how to bring it up?

I think the way in which patients have proactively asked me, it’s often me discussing SUDEP with patients and their carers, but every once in a while a proactive parent or a proactive carer or a patient himself or herself will bring this up to me. It’s a very direct and inoffensive question, which is, “What is the risk of something bad happening to me?” It’s a straightforward question that deserves a straightforward answer.

Most of us who have observed a grand mal seizure to occur will know that a lot of the time patients do turn a little blue around the lips and don’t breathe very well after a seizure. What does that mean to that individual? I think it’s a very important question to be asked and to be addressed. A lot of the time is the answer is reassuring. Sometimes it is okay. These are the specific things that need to look out for, and this is how you can be careful.

What do you recommend for children and teens who want to sleep alone? Is there a specific type of monitoring device, either that they wear or that is connected to the bed, that’s helpful?

That’s a very, very important question. I think there was a time when we were very careful about making overbearing recommendations because teenagers in particular have to live their lives. There’s a quality of life issue, et cetera, et cetera. But we know from recent scientific studies that one of the most powerful factors that prevents death probably is the presence of somebody else in the room; whether somebody else is in the room sleeping with that particular individual or not. There’s something to be said about that kind of observation.

Of course, as you’ve already alluded to, there’s the in between of monitoring devices and a lot of my patients do use them successfully. There are a couple of FDA approved devices that are out there on the market. I personally don’t have shares in either, but there is the Empatica, the Embrace device. There’s Brain Sentinel. They both use different approaches. What they don’t do is prevent SUDEP. What they do, do is let the designated carer or person know that a seizure is occurring or has occurred. I’m an advocate for the use of whatever technology is available for mitigating risk.

Have there been any studies with SUDEP and VNS patients? If so, are there any differences in the rate of SUDEP?

Yes. Great question. There is actually a very well-known study where several thousand patients who had had VNS devices implanted were studied over a period of time. It looked as though the rate of SUDEP over a prolonged period of time actually went down in the VNS population. Over a long period of time, it may be protective against SUDEP.

This is obviously one study, but it was sufficiently powered, I think, because there were thousands of patients who were studied to say that there is probably something there. When you couple that with the fact that VNS in some individuals reduces seizure frequency, then there’s a case to be made for doing VNS in patients who have not responded to other measures. [But] I wouldn’t say that VNS alone is completely protective.

Can a CPAP or other oxygenation aid device help those with SUDEP risk factors at night during sleep?

That’s a pretty nuanced question, I have to say. When it comes to improving sleep quality in patients with epilepsy, yes, absolutely. CPAP and those things might be useful because sleep deprivation, poor sleep quality, et cetera, et cetera. These are all linked to seizure frequency, and of course, seizure frequency is linked to SUDEP.

In somebody who’s having a seizure and may be likely to suffer from SUDEP, would CPAP prevent that? Probably not, and I say that for number reasons. Chief among those being that, in a convulsive seizure, you can have all monitoring devices, they become dislodged, there’s a lot of movement, shaking, et cetera, et cetera. So I wouldn’t rely on CPAP for preventing SUDEP directly like that.

Should electrical stimulation of the medulla, and maybe you can
explain where the medulla is, be more widely used to study or
to prevent SUDEP?

The medulla is part of the brain stem, the same structure that I was talking about, and medulla probably is the most important part of the brain stem for a final common pathway to controlling breathing and cardiac rhythm and blood pressure. A very important structure. It’s a very challenging part of the brain to study in humans because to stimulate the medulla, you have to put electrode into the brain stem, and that always carries a risk of bleeding hemorrhage and so forth. The outcome of bleeding in that part of the brain stem would be catastrophic, would be death. To my knowledge, nobody has done that in humans yet, but there are researchers who are looking at stimulating other parts of the brain stem; parts of the brain stem that are maybe less risky, but at the same time, likely to impact breathing and cardiac function. There’s more to come. In the next few years, I think we will hear a lot more about brain stem stimulation

For uncontrolled seizure patients, how often would you recommend doing an EMU stay? I know that the MORTEMUS study was done using patients in the EMU.

The EMU has a very specific role. We either send patients there for diagnostic assessment. Here, we’re trying to figure out if the patient has epilepsy or a related disorder. Or, we’re trying to see what kind of epilepsy it is. That’s diagnostic EMU assessment.

Then there’s the other kind of EMU assessment, which is the presurgical assessment; studying the seizure in order to do brain surgery. It’s the latter type in which we’ve become more and more practiced at assessing cardiac and breathing function, as well. There isn’t much point in repeated EMU assessments for assessing risk. Usually, if intractability or lack of control through medication surgery has been established, then one EMU assessment where cardiac and breathing function are looked at as well is probably enough.

Here’s a question related to the rare epilepsy categorization. “Is Lennox-Gastaut a part of this group of rare epilepsies that are impacted more significantly by SUDEP?

Yes. I would say that it is. It’s one of the commoner varieties of the rare epilepsies, but Lennox-Gastaut really is a syndrome. It’s not really one specific genetic condition. Within the LennoxGastaut rubric, we actually have dozens of other conditions that make up the syndrome complex that we call Lennox-Gastaut.

You’ve talked a lot about people who may have had longterm epilepsy, lots of seizures, but there are instances where after just a handful of seizures, somebody has passed due to SUDEP. We think of some more public cases like Cameron Boyce who passed away, but there are others. Is it possible to die from SUDEP without either a diagnosis of epilepsy or a first tonic clonic seizure?

Absolutely, yes. Happily, I would say that that kind of situation where it’s not uncontrolled epilepsy is extremely rare, but it does happen. As recently as two months ago, I was contacted by colleagues in another part of the country who had just such a patient who passed after a second tonic clonic seizure. We’ve come to understand that SUDEP is actually a heterogeneous phenomenon. It’s not just one thing, and there isn’t just one prototype patient that fits that mold. There’s actually a variety of types. There are tragic cases where a first ever or a second ever seizure kills, but I have to say that that is very, very rare.

You’ve talked about the cardiac disturbances, but could you talk a little bit more about that? Does that mean cardiac arrest, or what do you mean by a cardiac disturbance or arrhythmia?

By cardiac disturbance I mean cardiac rhythm dysfunction. Cardiac rhythm can be disturbed in a variety of ways during seizures. The heart can either be too fast or too slow. When it’s too fast, it can happen in a pathological fashion; conditions that we refer to as ventricular tachycardia, ventricular fibrillation, and things like that. Those are very dangerous. In the SUDEP context that seems to happen extremely, extremely rarely. What is more common is the heart beating too slow and maybe even stopping. That’s what we refer to as bradycardia and asystole. You can imagine that after a seizure, if a patient is not breathing too well and their heart’s not beating too fast either, that their blood pressure’s not going to be great. Of course, it sets a vicious spiral that can result in an unfortunate outcome

Abby, I know that you had some questions. Now that you’ve heard this discussion, as a parent, what do you think and what sorts of questions would you be coming to your physician with now?

Abby: First off, I’m like, “Wow! It’s a miracle my son is still here!” We have prolonged QTC. He has intractable epilepsy. He’s a boy. He has cluster seizures. I’m thanking God that he’s still here.

I feel like quite a few of the questions coming in were kind of along the lines of what I was thinking. My son has a VNS, so I was worried that might be a problem.

Somebody asked about the CPAP, that’s something that I have chosen not to put on my son, but I’m wondering if I should? I’m wondering if that makes a difference breathing-wise.

My question would be the sleep studies that my son had done seem like they’re separate from EKGs, like these are two different events. I’m wondering, do I need to pursue having them done together? I’m not even quite sure what my question is. It just seems that the breathing patterns that you’re looking for are maybe things my neurologist isn’t looking at. Is my neurologist looking at that, or my epileptologist, or are they just looking at seizure activity? Are they focused in on breathing patterns? How do I know if my son’s intractable epilepsy is causing breathing issues not related to just, “Oh, his SATs dropped”?

I don’t know if that was very clear cut, but that’s kind of where I’m going. How do we get everybody together on the same page to talk about this risk?

Dr. Lhatoo: If I may just make a comment, which is, I shared some of the recent research findings with you folks today, and it is always the case that clinical practice lags a little behind what comes out in research. That’s only correct because research findings need to be validated, replicated, reproduced, and so forth before they become standard clinical practice. It is not standard clinical practice in many places to routinely measure breathing. Cardiac rhythm is done. EKG is done in most places, but breathing is not routine. I believe that it should, and there are a group of us who are strong advocates for it. Over the coming months and years, you’ll see more and more folks who will begin to do it in their epilepsy monitor units. But in sleep studies, breathing is very carefully measured, so I would imagine that your child has had that done.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Mental Health & Epilepsy: Improving Quality of Life

Mental health is among the many issues that can affect both children and adults living with epilepsy. While some people may experience few mental health issues, others may suffer debilitating problems of anxiety, depression, or mood disorders. It is imperative that clinicians address and treat these psychiatric symptoms early in the individual’s epilepsy journey to reduce the negative consequences they might have on the long-term quality of life. In fact, many clinicians and patients agree that treating anxiety and depression may help improve the quality of life for people with epilepsy more than reducing seizures.  

This webinar will discuss the prevalence of anxiety and depression among people with epilepsy. Viewers will learn how anxiety and depression impact people with epilepsy in different ways, and that neurologists often have multiple tools at their disposal to help alleviate these psychiatric symptoms. In some cases, the treatment of these symptoms may influence the treatment of the seizures themselves. 

The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.  


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About the Speaker:
Dr. Heidi Munger Clary is an Associate Professor and Epilepsy Fellowship Director at Wake Forest School of Medicine. She is an adult epileptologist whose research focuses on anxiety and depression in epilepsy. The overarching goal of her work is to develop and test strategies for neurology clinic-based action to close the screening, treatment, and outcome gaps for these impactful comorbidities. Dr. Munger Clary is Chair of the American Epilepsy Society Psychosocial Comorbidities Special Interest Group, Chair of the American Academy of Neurology Epilepsy Quality Measurement Workgroup, and Co-Chair of the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy’s Psychiatry Commission.

 


Q&A with Dr. Heidi Munger Clary

What are recommendations for dealing with anxiety and depression in non-verbal children?

So this is a great question, and this is a really challenging area because a lot of the work that we’ve been doing to try to address it has neglected this area. So, one of the things that needs to happen is we really do need a lot more focus and attention to this area. Now, one of the things that I have heard that can be very helpful in terms of tips from pediatric psychologists is really observing the behavior of the patient. Listening to the family, what is their intuition about how that person is doing? And then trying treatment approaches. I think it’s a real challenging area. Opening a dialogue with the neurologist can be a starting point. But it may really be that for individuals like this, if there’s a specialty clinic focused on neurobehavioral care or care of individuals with behavioral issues and developmental delay, that setting might address those patients’ needs even in an even more robust way. I will say for myself being a neurologist in practice, really trying to address these kinds of topics in a better way over time, we at our center, we’re lucky to have this excellent neuro behavioral clinic.

And I do find that once I run out of some options for potentially optimizing the seizure medications for behavioral effects, thinking about maybe a very commonly prescribed medication, sometimes an SSRI is worth considering. But getting those patients to the specialized care, I think right now is the best thing to do because this is not an area that the neurologists are really well equipped to start managing themselves, but starting the dialogue and getting the referrals and finding those resources in the community that are appropriate, I think, is the most important thing for it right now.

Can you share more about the correlation between hormonal issues and seizures?

I’m trying to think about how to focus it in the mental health area, but one of the things we commonly see in day-to-day epilepsy practices that sometimes seizures are related to the menstrual cycle in terms of the timing of seizures. This may also impact behavioral symptoms as well. I’m trying to think about what the best way to focus this response would be. But if one of the questions is a concern about seizures and hormones, doing some careful tracking of hormonal cycle related changes, whether it be the menstrual cycle or even treatment changes that might affect hormones and seizure frequency can be helpful. In terms of the way I alluded to hormones within the brain, potentially being related to mental health issues, that’s an area that’s primarily in the research zone right now, and doesn’t have a lot of everyday practical clinical implications yet from my perspective.

Do medical treatments for anxiety change for younger people, for teens compared to adults?

So this is an excellent question. So, there is more of a potential concern about whether SSRI, the most commonly prescribed antidepressant category, whether might be higher risk for suicidality in teens than in the adult population. There is a bit more of a regulatory warning associated with these medications in the teen years. So having said that if, for example, a teen is seeing an adult-focused neurologist, or maybe a pediatrician, there might be a bit more reluctance to prescribe. And so there may be more of a recommendation for specialty care. Having said that, SSRIs are used very commonly in teenage people. But I think the level of expertise to make sure that it’s safe and that it’s really the right thing to do is important.

There’s a lot of behavioral approaches, counseling, psychology-based approaches to anxiety management in children and in adolescents. And it seems that there’s a greater emphasis on that when we look at the literature and think about what kinds of treatment recommendations are out there. There also seems to be more psychology resources in many pediatric centers than I have seen in some adult centers. So, to answer the question, the approach may be different, talk to the neurologist and other care providers to see what they recommend. And it may be that more of a specialty-focused approach is appropriate in the pediatric age group.

So it may be that a pediatric neurologist may be more likely to recommend a referral to a pediatric psychologist or a psychiatrist to manage anxiety in either the teenage age group or younger age groups than so then some adult neurologists who might take on the management themselves. This may be evolving over time. Talk to the neurologist and find out what their comfort level is. There are a lot of pediatric centers that have really robust psychology resources. So that’s the potential silver lining to that question. There might be a resource there in a pediatric setting, more likely than an adult.

Does the person raise the issue or should they rely on the neurologist?

We wish that the neurologist would always bring this up. But I think that you can really help yourself, your loved one, your family member. If you have concerns in this area and you bring it up, it’s much more likely to be addressed. Some neurologists may address it as a routine. We know from survey data that sometimes they will only address if it’s raised by the patient. So do not be afraid to raise your concerns. It can really help lead to it being addressed. So I think it’s a great idea to bring it up as the patient.

Speaking on the patient, on behalf of the patient, somebody asked the question, how do you know when for somebody perhaps who’s non-verbal, when you should change a medication or try something else?

And in terms of the question, if we’re thinking about, is there a mental health side effect, a behavioral side effect from the medication, for example, observing behaviors and behavior changes as a medication has been added. For example, one of the medicines I listed as often good for anxiety, Clobazam, sometimes this causes agitation and behavioral problems, and it seems to be more common among intellectually disabled people. So if a new medicine is added, watching your loved one’s behavior and seeing, is something changing that makes me concerned? Bring it up with the neurologist and see. And then if it is the medication, medication could be reduced or taken away, and then you’ll find out if that was the cause.

Now, how do you tell if a medication specifically for mental health is working for your loved one? I think it would be similar to observing the behaviors that were the concern in the first place, and that led to prescribing that medication. Is that improving with the treatment? If it’s not, then it’s time to go back to the prescriber and think about what else could be tried to help.

Does it make sense for families to stay in touch with their provider more frequently as there’s a medication change?

I do think it’s a good idea, specifically, if you notice a change that is of concern. Sometimes people feel like they need to wait until the next visit to bring these kinds of issues. It’s important to know what’s the best way to work together with your neurologist. I do think though that most neurologists, if there’s a problem with the medicine, would rather hear about it sooner to be able to respond than not. But check with your neurologist as well to see what their recommended approach would be.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Autoimmune Epilepsy Treatment Considerations

This webinar provided information to help the audience understand more about autoimmune epilepsy and the different treatment options and considerations, including immunotherapy, for autoimmune related seizures and epilepsies.  

Our body’s immune system is what protects our body against harmful substances. Autoimmune encephalitis is a term that refers to conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. Antibodies may target different brain receptors which impact the type of autoimmune encephalitis. Symptoms may include memory loss, cognition problems, impaired speech, and seizures.1  

It is important to diagnose autoimmune epilepsy because one of the hallmarks of this condition is that it does not generally respond to typical anti-seizure medications. Immunotherapy is often used to treat people with this condition, by reducing inflammation in the brain.     

This webinar is intended for people living with epilepsy, their family members, and caregivers, and anyone seeking to learn more about autoimmune epilepsy and its treatments.


1
Lancaster E. The Diagnosis and Treatment of Autoimmune Encephalitis. J Clin Neurol. January, 2016; 12(1):1-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712273/.


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You can learn more about autoimmune epilepsy by watching our webinar Identification and Treatment of Autoimmune Epilepsy featuring Dr. Stephen VanHaerents.

 

About the Speaker:
Dr. Stephen VanHaerents is an Assistant Professor in Neurology and Medical Education at Northwestern University Feinberg School of Medicine. His practice focuses on the medical and surgical treatment of epilepsy with particular emphasis on the treatment of medically intractable seizures. His clinical research interests include neurostimulation, identification and treatment of autoimmune-associated epilepsy, and new-onset refractory status epilepticus (NORSE). Additionally, Dr. VanHaerents is deeply invested in medical education and currently serves as the Director of Medical Student Education in Neurology. He also serves as the Co-Chair for the Neurology and Neurosurgery Health Equity, Diversity and Inclusion Committee at Northwestern University Feinberg School of Medicine and Northwestern Medicine.


Q&A with Dr. Stephen VanHaerents

There been success in diagnosing and/or treating somebody Autoimmune Epilepsy Treatment Considerations webinar Page 14 of 19 with a longer history of epilepsy and autonomic dysfunction?

Early is good. This happens where the diagnosis of an autoimmune cause is made much later than desired. And at that point, I usually do do a trial, but sometimes they don’t respond, there’s damage done, and they have persistent epilepsy for instance. And then I still look, is there any component of it that’s still immuno responsive or do they just have a structural epilepsy at this point due to damage from the brain? And so, I do try to still tease that apart to see if there’s any immuno responsive component left, but often, not often. I mean, it depends case by case, but there are many that there’s no further immune component but they do are left with a structural long term epilepsy. And then they kind of go down more of what you think of for standard epilepsy and maybe you think about epilepsy surgery or neurostimulators, things like that.

You’re clearing the blood of the bad antibodies but aren’t they going to come back. Won’t they regenerate and if so, what do you do?

This is an acute treatment that you’re doing, it’s not a long-term maintenance theory. When you’re dealing with someone like NMDA receptor encephalitis that antibody is toxic. If you take it from one mouse without NMDA receptor and encephalitis and put those antibodies in the other mouse, they will become symptomatic. And those intercellular antibodies, not so much. You want to clear the blood to get them out. And so, you clear it, but long term, often we use something called rituximab, which then is an antibody then directed at the bone marrow to stop making. So, you don’t differentiate into those plasma cells, those progenitor plasma cells so you stop making the antibody. But that’s a great question. And you also want to be sure not to give the rituximab before the plasmapheresis then you just wash out your very expensive therapy either. You wash the blood first.

Is it better to treat with carbamazepine or could we use other sodium channel blockers like lacosamide if they don’t want to use.

That is a great question. And I would not use carbamazepine in someone with hyponatremia and for the audience who doesn’t understand why that question was asked is carbamazepine or
oxcarbazepine, that family really is associated with low sodium. And so, you’re right. I would probably use something like Vimpat now keep in mind Vimpat’s not benign. Oh, sorry. I probably should use generic names, lacosamide, sorry. Lacosamide. But some of these patients have autonomic dysfunction too. And so, you do want to really monitor these patients’ parts too. Some of these sodium channel blockers a lot of them can either prolong QTC intervals, which you have four chambers of the heart, and the PR interval is how long it takes from the smaller atrium to get to the ventricles. And so essentially you want to monitor their heart too. When you’re looking at that study, you have to take it with a grain of salt. Yes, and LGI1 carbamazepine did it better, but you have to think about the patient too. And so, what’s best for them at that moment.

You’ve given us the example of this woman who’s experienced real changes in behavior, some inconsistencies, but what other things might tip off family members that might be a cause for concern for autoimmune epilepsy. How do you trigger epilepsy investigation?

That was in my first talk of kind of what are autoimmune seizures like as opposed to other seizures and keep in mind that patients with epilepsy, depending on the location of the epilepsy might have a lot of psychiatric comorbidities related to their epilepsy much higher risk of anxiety, depression, other things. Not everyone with any sort of psychiatric comorbidities autoimmune. I just want to give that kind of caveat off the bat, but the seizures of themselves are typically location-wise. And this is where talking to your doctor is important too, this kind of perisylvian, these kind of autonomic type seizures of the insula and areas and they tend to often be very brief seizures where you can have lots per day. No, when you look at this patient I just presented, she went from never having a seizure, you to having tons of seizures, tons, and they’re very short and brief, and they tend to be very medically refractory off the bat.

That’s not typical of most epilepsies, unless it’s a genetic epilepsy from a young age where they can be very refractory very early. This 27-year-old to develop that refractory of epilepsy in the course of a couple months would be very atypical. And then bilaterality too like having seizures like the guy last time I showed you, he had got left temporal seizure, right temporal seizure, left temporal, like having refractor. And he was 60 something. I forgot his exact age, but refractory epilepsy in a 60 something-year-old bilateral, that’s really hard, and older people with structural epilepsy, usually, it’s from a stroke or maybe they had a brain tumor and it’s from one spot. Maybe it propagates different so they can have different seizure types. Let’s say it’s in their parietal lobe and sometimes it will go backwards and they’ll get a visual aura or sometimes it will go forward, but they have from two different sides that refractory that should really raise your index of suspicion. Something is up here.

If somebody presents what seems like a seizure and they get put on a standard anti-epileptic drug, but then in the workup, it’s determined that, well, perhaps they actually have an autoimmune epilepsy and they go through that process. You’ve described it in your patient that you just presented to us where they titrated off of the immunotherapy and also for her off of the AEDs but that’s a very scary proposition for many to think about coming off of the anti-epileptic drug completely. How do you make those decisions and how do you work through that process??

This is how I usually do it, which is not always a hundred percent standard. And I’m glad actually now I didn’t even think about it, but those two cases, the case in the first one, he was unable to actually come off seizure meds. And I think that part of that reason I believe is that in the first case, he really presented it in September, but I didn’t meet him until March or April. So, there’s a large delay. And one rule of thumb so you do him second, we’ll talk about the patient I just presented first where she was able to come off both. Her cognitive seizure had all stopped really by about eight weeks at that point. She responded very quickly, which is awesome for her and we also got to her very quickly too.

So she really wasn’t that symptomatic without treatment very long. So essentially what I do is I never wean seizure meds and immunosuppression at the same time, because then if they have a breakthrough seizure, you don’t know is it because they have structural damage that now they have epilepsy or is it that they’re having a relapse of their autoimmune encephalitis and need immunotherapy. So, I never wean them at the same time. So, in her, I slowly wean immunotherapy while I kept her seizure medications stable. At which point when she’s off immunotherapy doing great, I usually get a follow-up EEG. Does she have any sharp waves or any epileptic potential whatsoever? At this point in her, she really can’t be driving anyways because it’s still within six months.

She wasn’t driving. And I discussed with her seizure, precautions risk. I usually give them at home rescue too, in case they do Autoimmune Epilepsy Treatment Considerations webinar Page 18 of 19 have a breakthrough seizure. And I educate the family, seizure precautions, things like that. And then we slowly wean off and then once weaned off, I usually do a follow EEG to make sure that there’s no epileptic potential in her there wasn’t, but really we don’t have a perfect marker to mark someone’s epileptogenicity and that’s an area of research that, for another webinar. But anyways, right now we have a limited approach.

I think essentially that time is really the best marker. The longer you can go without seizures. And so, in her now it’s been sixplus years without a seizure. So, she’s doing really well. The other guy, when I weaned him, actually he got off immunotherapy. He was doing great. But when we did the follow-up EEG, he still had epilepsy from discharges, from his temporal lobe. With him, we discussed any potential wean, but in him, he didn’t feel that it was worth the risk. He also took longer to recover. So, it was also over six months. And so, he
was driving again, which is also a big consideration as well. So, it’s really a case by case and discussing with them the different options. I hope that answered that question.

Can you speak to how patients have experienced any changes or flareups in autoimmune epilepsy following COVID infection and any protocols you recommend for these patients? For both presenting for the first time after COVID or they already had autoimmune disease and then got COVID).  

The reality is both. I’ve seen it flare up from both. I mean, the reality is if you kick up the immune system, even with just and by no way am I anti-vax, but with the vaccine, I’ve seen upticks too. You’re activating the immune system if they make autoimmune antibodies, it makes sense. The vast majority of my patients have been totally fine, to be honest. I didn’t know how that would happen, but there are a couple notable ones that it did kick up. And in which case I’ve treated them just like I would. Anyways, I gave them steroids in those cases to bring down inflammation. I just treat it essentially. But luckily it hasn’t Autoimmune Epilepsy Treatment Considerations webinar Page 19 of 19 as bad as I initially was concerned and a lot of us were concerned about when the pandemic first started.

What’s the risk of recurrence and how do you treat it?

I took an NMDA receptor encephalitis patient off rituximab which had worked for her for years when she relapsed, I did give her steroids actually, but then I gave her rituximab to go back on it too. It depends. If there’s something that was working for them before it’s got taken them off, then you restart it.

 

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Identification and Treatment of Autoimmune Epilepsy

 

Our body’s immune system is what protects our body against harmful substances. Autoimmune encephalitis is a term that refers to conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. Antibodies may target different brain receptors which impact the type of autoimmune encephalitis. Symptoms may include memory loss, cognition problems, impaired speech, and seizures.1 

Autoimmune epilepsy is important to diagnose because one of the hallmarks of this condition is that it does not generally respond to typical anti-seizure medications. Immunotherapy is often used to treat people with this condition, by reducing inflammation in the brain.   

This webinar helped viewers understand the difference between paraneoplastic and autoimmune encephalopathies and the difference between acute symptomatic seizures related to autoimmune encephalitis and autoimmune associated epilepsy. Viewers learned about the characteristics and pathophysiological mechanisms of autoimmune encephalitis, when to suspect autoimmune related seizures and epilepsy, and the algorithmic approach to the diagnosis of autoimmune encephalopathies. 

1 Lancaster E. The Diagnosis and Treatment of Autoimmune Encephalitis. J Clin Neurol. January, 2016; 12(1):1-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712273/.

 


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You can learn more about autoimmune epilepsy by watching our webinar Autoimmune Epilepsy Treatment Considerations featuring Dr. Stephen VanHaerents.

 

About the Speaker:
Dr. Stephen VanHaerents is an Assistant Professor in Neurology and Medical Education at Northwestern University Feinberg School of Medicine. His practice focuses on the medical and surgical treatment of epilepsy with particular emphasis on the treatment of medically intractable seizures. His clinical research interests include neurostimulation, identification and treatment of autoimmune-associated epilepsy, and new-onset refractory status epilepticus (NORSE). Additionally, Dr. VanHaerents is deeply invested in medical education and currently serves as the Director of Medical Student Education in Neurology. He also serves as the Co-Chair for the Neurology and Neurosurgery Health Equity, Diversity and Inclusion Committee at Northwestern University Feinberg School of Medicine and Northwestern Medicine.


Q&A with Dr. Stephen VanHaerents

Could infections like Lyme, Babesia, or Bartonella be possible causes?

So any infection is possible. So, I actually did my training in Massachusetts, so I’ve definitely seen lots of Lyme, but Lyme, one, it’s very inflammatory. Typically, if it’s invading the spinal fluid, but post-infectious, it’s always possible. But at this point, there is no links to any bacterial-type infections.

Can you tell us about seizures that originate or localize in the brain stem?

That is more of an animal model thing, but there definitely is autoimmune encephalitis that also very much attacks the brain Identification and Treatment of Autoimmune Epilepsy Page 15 of 20 stem. I am almost like, how much time do you? The brain stem is a very content area of the brain. And so, you can have a lot of different symptoms. In one form that attacks the brain stem, they do get myoclonus, but they have a lot of sleep dysregulation as well. A lot of times when things are involving deeper areas of the brain though, seizures are not a prominent manifestation, it tends to affect more like movement disorders and coordination just because that’s what that area of the brain does more than actually seizures themselves. So, I typically actually don’t see a lot of those patients, but people tell me about them, but they tend to see my movement disorder colleagues more.

Could autoimmune epilepsy manifest itself as a focal seizure?

It’s almost always focal seizures, when they generalize it’s secondarily generalized. So as opposed to a genetic generalized epilepsy, which affects both sides of the brain at the same time, even when they have a full generalized convulsion, it’s usually secondarily generalized.

Do you see intracranial hypertension in your patients?

That’s an interesting question. There’s sort of idiopathic intracranial hypertension, which I definitely have in my clinic as well, and maybe there’s some link that they’re alluding to, but I don’t know of any link to autoimmune encephalitis, especially if they had preexisting hypertension. That being said when your brain’s inflamed, you can get rises of intracranial pressure, for sure.

How close are we to getting IVIG infusions, FDA approved?

I’m curious if this question is geared more towards to get insurance to pay for it, which is always that all that I do in my clinic. And so, there was a trial with IVIG at Mayo Clinic for LGI1 encephalitis versus placebo. So IVIG is probably more on its way than many others, but I’m not involved in the FDA process. So, I actually don’t know.

Is there a next step if immunotherapy and antiepileptic drug treatment does not work? Or do we not have anything at the moment?

I never give up, really. So, there’s lots of forms of immunosuppression. So, when we were talking about B cell and T cell mediated therapy, so for instance, it was in the newspaper and she signed a media release, but we had a patient with an NMDA receptor encephalitis who was in a coma for about five
months. And we could not get her to wake up. And we used plasmapheresis, IVIG, steroids, rituximab. She even got a chemo drug called cyclophosphamide and nothing touched her, essentially. And so, we used a newer chemo drug that she had been used in Europe, which is chemo for multiple myeloma, which is a B cell malignancy. And she woke up from that.

So there’s lots of different therapies. I didn’t talk about the ketogenic diet either, which seems to have anti-inflammatory properties to it as well.

And there’s also anti-interleukins to anti IL-6, IL-1, which gets used in those kind of NORSE and fires cases if people know what that is, but that is a whole separate lecture. So, what do I do if initial therapy doesn’t work, is I try more. But that being said, sometimes you do palliative surgeries. If one area is structurally very damaged, you could consider surgery or neurostimulation too with various nerve stimulators or even invasive neural stimulators have been used in patients that are autoimmune as well. So, you don’t give up.

Could you elaborate on musicogenic seizures in this context, any recommendations how to proceed when certain types of music are seizure triggers? And what test panels are most appropriate?

Very good question. So musicogenic seizures, there was a case series on it and some people it’s pop music and things like that, but I treat them mostly just like any other seizure, we’re trying to get their seizures under control. So, I don’t necessarily treat them any differently. It depends if somebody has a photic sensitive epilepsy as well, and there’s certain glasses you can avoid, but you can’t avoid the sunshine or something like going through trees and things. There’s certain things you just can’t avoid. And so really the answer is immunotherapy and seizure meds to try to get your seizures under control long term. It’s just more of an interesting phenomenon of reflex seizures that GAD65 seems to get.

What’s the best timing to taper off of an AED in cases of autoimmune epilepsy? How do you go about that?

So we don’t have a good answer to that. We don’t even know who needs long term therapy. So, I’ll just tell you what I do, which is what people more senior with more gray hair did. And so I just do it that way. So basically, it kind depends. I never wean seizure meds and immunotherapy at the same time. Because if you have a breakthrough seizure, you’re not going to know which one you actually need. So that’s rule number one. And so I essentially, like for instance, that guy just told you, LGI1 can be monophasic and we don’t really know who’s going to relapse and who’s not. So, in that patient I slowly wean off. For instance, I was giving him pulse steroids, so I was giving him a thousand milligrams of Methylprednisolone every week.

And I just slowly increase the time of the pulses. So, if it was every week and then every other week, and then as you’re weaning off the immunotherapy, if they relapse, then you give them something long term. So, it depends on the severity too. If they were very severe like an NMDA, I’ll often just continue immunotherapy and everything for about two years, that’s what most people do. And then try to wean after that. Now, if they get off immunotherapy, things are going well, then I’ll probably wean seizure meds too, and see if they can get off. And then I usually do a follow-up EEG and see if there’s anything epileptic as well.

Can multiple food allergies contribute to these autoimmune issues? What about the body being in a constant state of inflammation?

That’s a tough question. So, there is more, we’re learning about the gut microbiome and how it relates to the brain. I don’t think we have any specific links. There’s a lot of research that needs to be done in that, some of which is being done at Northwestern, actually with gut microbiome and effect on the central nervous system. But there’s also key things for instance, people with gluten and celiac disease, which has a very well documented neural celiac and neuro antibodies. So, I think long story short is we don’t know, I don’t know how to answer it better than that. There’s some links, but to the core autoimmune encephalitic antibodies, I am not aware of any true clear associations besides for celiac disease.

What is IVIG??

IVIG is, intravenous immune globulin, essentially when you donate blood, your blood gets divided into, it’s essentially donor antibodies, long story short. It’s concentrated donor antibodies from multiple donors and then it gets concentrated and put into an IV bag. So, when you donate blood there’s red blood cells, platelets, clotting factors, they separate it all out depending on what the patient needs. So intravenous immune globulin is really donor immunoglobulins.

 

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Post-Traumatic Epilepsy and Cognitive Training: Improving Quality of Life Through HOBSCOTCH

Post-traumatic epilepsy (PTE) is a form of acquired epilepsy that results from brain damage caused by a traumatic brain injury (TBI). People diagnosed with a TBI are 29 times more likely to develop epilepsy compared to the general population1. Individuals serving in the military may be especially susceptible to PTE. In fact, over 400,000 US Military personnel were diagnosed with TBI from 2010-20192, putting them at subsequent risk for developing PTE. 

This webinar provided an overview of PTE and cognitive dysfunction, as well as some strategies to help improve the quality of life of those with PTE and their caregivers. The webinar will also provide details about HOBSCOTCH (Home Based Self-Management and Cognitive Training Changes Lives), a behavioral program designed to address memory and attention problems in adults with epilepsy and discuss a clinical trial opportunity for veterans and civilians living with PTE. 

The webinar is intended for everyone, including persons with epilepsy, their friends and family, and caregivers.

1.  Herman ST. (2002) Epilepsy after brain insult: targeting epileptogenesis. Neurology 59:S21–S26. 

2. DoD Worldwide Numbers for TBI, Defense and Veterans Brain Injury Center, 2020 


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You can also learn more about the HOBSCOTCH program by watching or listening to our Seizing Life episode Learning to Manage Cognitive Challenges for People with Epilepsy featuring Dr. Elaine Kiriakopoulos.


About the Speaker:
Dr. Elaine Kiriakopoulos is an Assistant Professor of Neurology at the Geisel School of Medicine at Dartmouth College, and the Director of the HOBSCOTCH Institute for Cognitive Health & Well-Being at the Dartmouth-Hitchcock Epilepsy Center. Her research and programmatic efforts target building multisector partnerships to reduce disparities in the care of people with epilepsy, ensuring the most vulnerable populations have access to quality epilepsy care and community resources.  


Q&A with Dr. Elaine Kiriakopoulos

Could teenagers eventually participate in something like this?

I’m excited to share that we’re currently working on an adaptation for HOBSCOTCH youth, which will target adolescents between the ages of 14 and 18. We’re hoping to pilot that early in the new year as well. And so more information will come forth on that, but we feel like the program has a lot to offer adolescents as they transition to becoming adults, and helping with organizational skills, and disease management skills, as well as social skills. We’re really excited about that program. And coming along with that program is a HOBSCOTCH app, specifically for youth, targeted to youth. We think that’ll be exciting for them as well, too.

Do Georgia-based HOBSCOTCH participants need to be under the care of an Emory neurologist?

No, not at all. You can contact us, and we’ll make sure we can connect you to the team in Georgia at Emory. You can have your care with anyone in Georgia. We’re happy to have you join.

Interested in the program?

hobscotch.org

 

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

SUDEP Heart Cardiac association Webinar

SUDEP & The Heart: A Multi-System Approach to Understanding Electrical Disturbances


Last year during our SUDEP Action Day webinar, we learned that there is strong evidence of the association between breathing problems and SUDEP.  However, there is also equally strong data for cardiac abnormalities, particularly cardiac arrhythmias (irregular heartbeat) playing a role in SUDEP. In fact, studies have found mutations in genes associated with cardiac arrhythmias in 15% of SUDEP cases. 1  

This webinar helped viewers learn how inherited neuronal or cardiac diseases may lead to electrical disturbances in both the brain and heart, how altered cardiac function may lead to SUDEP, and why it is critical for the epilepsy community to take a holistic approach to fully understand biological changes that ultimately cause SUDEP. Watch the webinar above.

The webinar is intended for everyone, including persons with epilepsy, their friends and family, and caregivers.

1. Bagnall, R.D., Crompton, D.E., and Semsarian, C. Genetic basis of sudden unexpected death in epilepsy. Neurol. 2017; 8: 348. 


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About the Speaker: 
David Auerbach, PhD, is an Assistant Professor of Pharmacology at SUNY Upstate Medical University. Dr. Auerbach leads a translational research program. Through interactions with the families of patients with severe genetic diseases, he developed the passion and determination to advance the understanding of electrical diseases of both the brain and heart. He integrates cellular, animal, and clinical recording to investigate the prevalence, risk factors, and mechanisms for dual neuro-cardiac electrical disturbances, and ultimately sudden death.


Q&A with Dr. David Auerbach

Do you know if a condition called early re-polarization could increase the risk of SUDEP? And if so, what treatments or interventions are options to reduce that risk?

Sure. So early re-polarization syndrome, also is associated with a high prevalence of cardiac arrhythmias as well. That is true, that early re-polarization syndrome can also be pathological as well. Actually, a group just 45 minutes down the road from us in Syracuse, spent many decades studying this, in fact. In terms of therapies, that field really requires the expertise of your clinical electrophysiologist, because it’s so patient-specific that it would be difficult for me to give a silver bullet therapy right now.

Please talk with your physician and see if additional consultations might be helpful. You’ve touched on some of the risk factors and some of the things that people can do. Somebody had a question about the interaction between SUDEP and sharing a bedroom. Can you tell us what that’s about?

Sure. So yes, people who have epilepsy, who share a bedroom or have nocturnal monitoring, it’s the simple hypothesis that hopefully, someone in the room will wake up when you have that seizure and help put you in a safe position. Turning you on your side, making sure that your face is not buried in the pillow, anything like that. That’s the major theory behind that.

You’ve done a lot of work with the Dravet patient population. Is it recommended that patients with Dravet syndrome receive annual cardiac screening?

I’m a firm advocate for definitely, Dravet patients getting cardiac screening. The frequency of that? I don’t think we know enough right now to say whether one time versus yearly. But I definitely would recommend if it’s a child who’s going through puberty, basically testing both before and then after puberty. Because we know that sex hormones can alter the expression of ion channels in the heart there. So in that sense, I would say getting frequent testing.

That’s great advice, because that’s a piece that we’ve not talked about, the role of puberty and hormones.

Yes.

So very important. Is there any connection between AV block and SUDEP?

Yes. Yes. When I was saying throughout conduction disturbances, AV block is an example of a conduction disturbance. In simple terms, it’s either a delay or failure of that electrical wave to travel from the upper part of the heart, the atria, down to the ventricles, the lower part. And if that lower part of the heart, the ventricles is not firing and contracting at a sufficient rate, it cannot complete its sole function of pumping blood to meet the metabolic demands of the body. So yes, AV block is associated with SUDEP there.

I think you’ve touched on this, but just to reiterate, can mutated ion channels cause seizures?

Correct. Yes. Numerous gain and loss of function of sodium channel mutations that we classically look at in the epilepsy field, are also leading to electrical disturbances in the heart, and several cardiac ion channel mutations, such as long QT syndrome, Brugada syndrome, CPVT, are all … Also, there’s numerous reports of seizures in them as well. But there’s a lot of research that’s going on, to really understand the mechanism for this association.

So more to come?

Yeah.

What should you ask a cardiologist to screen for? I know that’s a medical question, but can you comment on that?

Sure. So I’m a firm advocate for performing cardiac testing under different physiological states. And what I mean by that is, doing cardiac testing when at rest, when maybe asleep, as well as during times of increased heart rate, such as exercising. Because to me, it’s the contribution of numerous forces that ultimately lead to these unfortunate events there. So we need to be getting cardiac testing under different heart rate states there, or autonomic states.

One other thing to add to it. I talked purely about electrical abnormalities today. I could give a whole other talk on the structural abnormalities in the heart. So when talking about cardiac workup and everything, echocardiograms, looking at wall thickness, contractile function, that’s a whole other topic that there is strong associations in the epilepsy field as well.

And similarly, would vasovagal events for SUDEP be a concern?

Vasovagal events, to me, that’s more of a hemodynamic blood flow type thing where vasovagal, you pass out. But then there’s normally this, then surge of adrenaline, sympathetic activity, gets the heart pumping stronger, increases your blood pressure, and then you oftentimes wake up. So I don’t really see vasovagal events as much associated with SUDEP, but there’s a lot that we don’t know yet.

Have the VNS and the RNS been included in studies? Do they provide any protection? Do we know?

Yes. So Richard Verrier’s group at Harvard there, looked in patients with vagal nerve stimulators and showed that those with vagal nerve stimulators, there was actually improvements in the re-polarization, or their cardiac recovery process in those would VNS. In terms of seizure control, of course, there’s been a lot of research showing the efficacy of that. So hopefully, did I answer your question?

Yeah, I think so. And there’s a related question on whether patients with VNS implants should continue to get cardiac care.

Yes. The VNS is firing when there’s a sudden change in heart rate. But I was at a cardiac conference during grad school, and this quote was used many times during the conference. He showed a video of this gentleman walking through the airport, and then drop dead suddenly. And the question throughout was, why did this patient die today, not tomorrow, not yesterday, not a year ago? So even though things are under control, we still need to be monitoring these patients, and practicing with safe lifestyle habits to cut down on our risks of seizures and SUDEP.

Okay. Yeah, there are lots of related questions here. Someone commented about, should a patient who started with fainting, which lead to seizures, follow up with a cardiologist again? We started with a cardiologist and got okayed for the fainting before the seizure started. Sounds like a connection there.

Sure. I’m going to give a textbook answer. I’m sorry for saying this, but you need to get the cardiologist and the neurologist and your family practice physician sitting all at the same table to figure out which is causing which there. Too oftentimes, our patients push back and forth between specialists. And maybe I say this because I’m not a clinician, but these clinicians all need to sit down at the table together and give better team-based care. My wife’s a physician, so I can tell her that.

Is brady or tachycardia more common during the seizures leading to SUDEP?

Okay. So brady, both are reported. Oftentimes, there’s been a greater prevalence of reports of bradyarrhythmias, slow heart rates, that can be due to slow firing of the pacemaker in the heart. But also, that includes your conduction disturbances. Because even if that upper part of the heart is firing normally, that wave may not get down to the lower part of the heart. But there are many case reports and even small studies showing tachyarrhythmias as well.

If somebody is potentially at high risk, would a pacemaker make a difference? I know that’s a medical question and we’re not giving medical advice here. But are you aware of anything?

Sure. So, depends what the electrical disturbance is. A pacemaker is there as a backup. If that pacemaker in the heart, the SA node, doesn’t fire at the rate that it’s supposed to be firing, that pacemaker jumps in. Or if that electrical connection between the atria and the ventricles is not functioning properly, you can pace the lower part of the heart, the ventricles. So it contracts. It excites and then contracts at the appropriate rate. But if the electrical disturbances are not due to a rate, but due to a rhythm abnormality, the pacemaker is not the right thing. That, you need to really consult with your cardiologist to understand, what is the electrical abnormality taking place in my heart?

This comes from a family who is concerned about SUDEP in their child. Are there any over-the-counter heart monitors that could be used? I know the Apple Watch is being developed as a system. There’s the Embrace. But that doesn’t have a heart piece to it.

Right. Yep. So unfortunately, right now, there’s no alarming device. The Apple Watch will report if it detected any atrial electrical activity, abnormal atrial electrical activity. But it does not presently alarm at all, unfortunately. And the challenge with that is, as some parents could sympathize with some of these seizure-detecting watches here, the high false positive alarming is a big issue. And I see that as a big obstacle in the field, because you don’t want that Boy Who Cried Wolf scenario there, where alarm’s going off every time, it’s always been a false alarm. And then you miss that one real one. So I think we really need to have devices that have a high level of sensitivity and specificity there. But not published at all, but my lab is definitely looking into some wearables to try to detect electrical disturbances in the heart.

Somebody asked that they would like to share your research with their child’s epileptologist. Would it be possible to get information? Or even if you know of any reviews or summaries that we might pass along to help people have this conversation with their doctor?

Definitely. Definitely. Dr. Lubbers, probably the easiest thing, I can send you a PDF version of this talk, as well as a couple papers afterwards that could be made available.

Here’s a question that’s a little bit more … policy-based. There is a law called Halyn’s law, which was passed in Connecticut, which requires medical examiners to have one hour of training in SUDEP, with the goal of collecting SUDEP patient data. Do you think this would be helpful if it was more broadly applied?

Absolutely. And during the SUDEP Summit, we had a medical examiner as part of it. And I think whether it’s a medical examiner or the coroner system, it’s so critical to have them more knowledgeable and trained in identifying SUDEP cases. Because that’s the only thing that’s going to help us to get that ball rolling in terms of recognizing the prevalence and the risk of sudden death.

We’re still learning a lot in terms of the research, but we need to be at least thinking about it. Could this be due to, for this person who has epilepsy?

We see billboards all the time, about the prevalence of cancer, Parkinson’s, Alzheimer’s, all these things. But really having some hard, accurate numbers about the risk of SUDEP is so needed. It’s so needed.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

NES Webinar Seizures

Non-epileptic Seizures: Diagnosis, Treatment, and Management Strategies for Patients and their Families

An epilepsy diagnosis usually occurs after an individual has suffered several unprovoked seizures. The diagnosis is then confirmed by a test known as an electroencephalogram (an EEG for short). However, there are cases in which individuals experience symptoms similar to those of an epileptic seizure without any of the unusual electrical activity detected in the brain. This phenomenon is known as a non-epileptic seizure (NES). While the physical signs and symptoms of NES may be similar to epileptic seizures, these patients do not respond to anti-epileptic drugs and therefore require different treatment options. Up to 20% of those diagnosed with epilepsy actually have NES.1

This webinar educated viewers on how to recognize the signs, symptoms, and history associated with the presentation and diagnosis of NES, how to discuss the diagnosis of NES with patients and families to enable acceptance of treatment, and identify the management options available for patients with NES and their families.  

The webinar content is intended for everyone, including persons with epilepsy, their friends and family, and caregivers.

1. Krumholz A, Hopp J. Psychogenic (nonepileptic) seizures. Semin Neurol. 2006;26:341-350. 


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Professor Curt LaFrance JR Speaker Non Epileptic seizures NESAbout the Speaker: 
W Curt LaFrance Jr., MD, MPH, is Director of Neuropsychiatry and Behavioral Neurology at Rhode Island Hospital and Professor of Psychiatry and Neurology at Alpert Medical School, Brown University. He is a staff physician at the Providence VA Medical Center, and Clinical Lead for the VA National Telemental Health Center Tele-Seizures clinic. His research focuses on developing new biomarkers and treatments for neuropsychiatric aspects of epilepsy, TBI, and more. 


Q&A with Dr. Curtis LaFrance Jr.

It seems like epileptic seizures may come and go, based on the experience of our audience. If none-epileptic seizures reoccur, are epileptic seizures are also likely to reoccur? There seems to be an interest in understanding that connection, if there is one.

Dr. Curtis LaFrance: So we follow people over the course of time, and what we found, interestingly, is there can be periods… what we call periods of quiescence, or quiet periods, where there’s no seizures. This can be for epilepsy or for non-epileptic seizures. In taking the history, in talking with people, we’ll say… They’ll come back, and they’ll say, oh, I just had a flurry of seizures again. This could be epileptic or non-epileptic seizures. The question is, anything different recently?

More times than not, what we’ll hear is, well, actually, I was getting ready for a final, and I pulled an all-nighter. And then after the final, I had the seizures again. This could be for epileptic or for non-epileptic seizures. As you’re aware, sleep deprivation is one of the ways that we actually induce seizures, whether epileptic or non-epileptic seizures. So I’ll see what we’ll call environmental changes. That can be after a period of a quiet period, and then a flurry again, or recurrence, sometimes environmental. Sometimes it can be physiologic changes in the person.

I see this from kids, to adolescents, to adults, I see this with other medications being added, bodily changes happening, all kinds of things. And then the physiology changes, and that has an effect on the way that the medications that the individual is taking is processed, what we call the pharmacokinetics and pharmacodynamics in the in the system. So a few different ways that seizures might recur.

Could there be age-related factors, from childhood to adulthood, that can induce more non-epileptic seizures? There was also a question about whether trauma, for example, having wisdom teeth taken out, can that induce? That’s a pretty big stressor in a young person’s life. So it sounds like that, yes, those certainly can influence the occurrence of non-epileptic seizures.

Dr. Curtis LaFrance: Yes. You said a very important word there, you said stressors in their life. So I’ll hear this from some people, they’ll say, but doc, I wasn’t even stressed, and I had the seizure. So I’m not talking about stress-induced seizures, I’m talking about life stressors contributing to the formation. What I mean by that is, sometimes it’s not in the ramped up period, where a lot of things are happening in life, or somebody just had a procedure, or a surgery, or something like that. They do happen postoperatively. I’ve seen them coming out of anesthesia, non-epileptic seizures. But also, after procedure, like wisdom teeth extraction… But it also happens in what I call the letdown period. What I mean by that is, I’m on the beach, and I’m with my family, and it’s wonderful, and I had a seizure there. What’s that all about doctor? So sometimes people, when they’re in the ramped up stage, they’ve got their defenses up, and then they’re when they’re in the letdown stage, then their defenses are down, and that’s where the seizure may occur. So there’s not a one-to-one relationship of, I was stressed out, I had a seizure. It could be in different types of environments. So I refer to life stressors, life events… we’ve all got life events.

One thing that people hear, is that we’re not seeing an EEG signature, but it’s because the the seizure is occurring deep in the brain, and we just can’t pick it up. How would you respond to that?

Dr. Curtis LaFrance: I would say there are some seizures that… There are some locations, or foci, in the brain that elude scalp EEG signal. So what I mean by that is if you’ve got a what we call mesial temporal, or some frontal lobe seizures, epileptic seizures, they actually… you can have the epileptic seizure, and the scalp EEG is not going to pick up that abnormal brain cell firing, epileptiform activity. So in that case, it’s not that it’s not epilepsy, it’s that the focus eluded the scalp electrode. So we’ve got a clue there, though.

Just because you haven’t had a normal EEG doesn’t mean it’s not epileptic seizures. We’ve got a clue, though, and we use the term semiology, ictal semiology, and all that means is the physical characteristics of the seizure. There are certain ways that frontal lobe epileptic seizures present, characteristically, that differ from psychogenic non-epileptic seizures. Even though both of those might have scalp negative EEG, we can look at the ictal semiology, the physical characteristics of the seizure, and we can make a comparison.

That’s why you heard me say earlier, the right history, with the right witnessed seizure, with the right EEG, those are the ways that we get the documented… That’s how we get documented non-epileptic seizures. If we have the seizure characteristics, even though it’s a scalp negative EEG we may say, hmm, this looks more like frontal lobe epilepsy than it does psychogenic non-epileptic seizure, just because I’m watching the seizure myself. That’s the importance of the video EEG.

How do we find providers were trained to provide these therapies in our states or regions?

Dr. Curtis LaFrance: I would say start with your local epilepsy center, send them an email and say, do you have people who are trained in treatment for non-epileptic seizures? Now, that doesn’t mean that they were trained with taking control of your seizures workbook, they may have their own approach. What I showed you was just one of a number of approaches. So this is not the be all and end all for everybody. There may be places around the country, who say yeah, we’ve got somebody who’s been treating people for 20 years, and they use this approach.

I would say start with your local epilepsy center, your local epileptologist. If there’s a neuropsychiatry department, sometimes they’ll do overlap brain and behavior, and you can contact them. Those are the main resources… I would say start locally. And then, sometimes people will email and they’ll say, do you have somebody trained in Michigan? Oh, yes. Well, there’s actually Dr. Baim, who’s trained in Michigan, and this person’s in Stanford, and this person… If you’re talking about treatment with the workbook, then that’s how that’s listed.

To start with the epilepsy center and move on from there. Of course, CURE Epilepsy is also helpful, willing to try to help find resources as well, if we can make connections. We know that this is an area of great struggle for people, and less identified providers. Another question is, are non-epileptic seizures ever a diagnosis that can be removed from a patient’s problem list? This is something that needs to be on the radar now and indefinitely.

Dr. Curtis LaFrance: I view seizures, whether epileptic or non-epileptic seizures, as a chronic medical illness.

I’m thinking now of the International League Against Epilepsy’s more recent definitions for epilepsy. Before, there wasn’t a great definition for resolved, but now there’s a category for resolved epilepsy. So just as there’s a category for resolved epilepsy, you can have a category for non-epileptic seizures. That’s not official from the ILA per se, but I’m thinking, in parallel, what’s been done for the new diagnostic criteria for epilepsy and terminology, that could also be done for non-epileptic seizures.

Here’s what I will say. Life events are still going to keep happening, life is going to keep happening. Somebody is going to get sick in the family, a bill is going to come due that you didn’t expect, the car is going to break on the day that you don’t want it. That’s always going to keep happening. The treatment that we… The tools that patients get with the workbook, they have to keep applying those tools.

The way that I demonstrate that to patients is, if they have readers, then at the end of the treatment, I’ll say, okay, read this sentence, and they’ll read it. And I’ll say, now take off your glasses and read the next sentence, and they can’t read the sentence. And I’ll say, the glasses didn’t cure you. You have to have the glasses on for you to be able to read, you have to keep using the tools for you to be able to address the stressors, the ongoing life stressors.

So people can go for extended periods… I’ve had this and people who’ve been in our prior studies. They’ve come back two or three years later, and they’ve said, the stuff came back. And I said, how are you doing with this, what’s going on in life, and how are you using the tools? And they said, life has gotten a lot harder, I just had two kids, and I’m not using the tools. I forgot about. So there’s a little booster, and that booster is the thing that helps them to get back on track to use the tools again to address life events that are going to keep happening.

People have asked about the role of psychogenic seizures, non-epileptic seizures, and post traumatic stress. I think you’ve already touched on this a bit. It’s not just the current life events that are happening, but the sequelae, as well, and using these tools to address that. Correct?

Dr. Curtis LaFrance: Yeah. So people will refer to the various comorbidities or co-occurring illnesses. I didn’t put the slide in, but you’re probably already familiar. We’re talking about epilepsy now. Anywhere from a third to a half of patients with epilepsy also have depression. Anywhere from 20 to 40% of individuals with epilepsy also have anxiety. Anywhere from a third to a half have cognitive issues with epilepsy. So, these are comorbidities, neuropsychiatric comorbidities that occur with epilepsy, very similar in non-epileptic seizures.

So you’ve got about half of the people have comorbid depression with non-epileptic seizures, about half have anxiety. 40% of civilians, and up to 70% of veterans have PTSD, as you would expect, with non-epileptic seizures. So a lot of comorbidities. So it’s not just about treating the seizure. That’s why I was saying earlier, you’ve really got to treat the whole patient.

Can there be a false diagnosis of non-epileptic seizures? Why and how?

Dr. Curtis LaFrance: The answer is yes, and it can go either way. You can be diagnosed with non-epileptic seizures, and it can be epilepsy, or you can be diagnosed with epilepsy, and it can be non-epileptic seizures. I’ve seen both of those. I’ve mentioned with one of my early distance mentors was Orrin Devinsky, and he said early on, Curt, you have to approach a patient with seizures with humility, because you can be fooled either way. So people can say, oh, well, I’ve seen that ictal semiology, I’ve seen the physical characteristics of that seizure, and that’s got to be a pseudo seizure, they said in a dismissive manner.

You know what? Number one, it’s not a pseudo procedure, and number two, it was actually a very odd manifestation of a frontal lobe epileptic seizure. Conversely, you can have somebody it’s like, wow, that’s a story for epilepsy, I’m going to treat them for two or three years with anti-seizure medications for presumed epilepsy. Nope. This was not epileptic seizures. The AED’s are not going to help the individual.

It keeps you honest as a clinician. You can’t go and say, I’ve got the answers. I wrote a textbook on it, and still sometimes I’m scratching my head saying, hmm, I wonder about this. Let’s take a tincture of time. Let’s use a tincture of time to try and figure out, let’s see what you’ve got. That sometimes is the best medicine.

Do none-epileptic seizures present during sleep?

Dr. Curtis LaFrance: The answer is yes. The devils in the details here. So, epileptic seizures can arise out of physiologic sleep. Non-epileptic seizures can occur during the nighttime, when a person is sleeping. Those are two different statements. The way that we figure that out is if both of them can occur at night, both of them can occur while people are sleeping. But what I mean by that is, we look at the tracing on the EEG. As many of the individuals know, the EEG changes when we’re in sleep and out of sleep stages.

So what happens is, we’re watching somebody, and then there’s an arousal, so they become awake, out of sleep, and then they have their non-epileptic seizure. That’s how we see that. But we really need the EEG that corresponds to the video to be able to say, oh, you know what, there was an arousal, so they were awake, even though it was at nighttime, when they were sleeping, and it was a non-epileptic seizure, as opposed to literally coming out of physiologic sleep and treated to a seizure. More times than not, it’s going to be epilepsy.

Do you have to have regular events in order for them to be classified as non-epileptic seizures, or can very infrequent events still be characterized as such?

Dr. Curtis LaFrance: I’ve seen people who have them once a year, and I’ve seen people who have 30 in a day. So I wish it was that simple, it would make my job a lot easier. But no, it’s never that simple. So we really have to pay attention to how often are these occurring? When are they occurring? In the workbook, we have a thing called a seizure log, and that’s where the individual really pays attention to their symptoms. So every day, they’re documenting, I had one seizure at 12:00 PM, 12 noon, in the kitchen, after I was preparing breakfast, and it had this effect on me. So we get them to start paying attention, whether it’s an epileptic or non-epileptic seizure.

And then when they start to pay attention to what’s happening, and what might be a precipitant to the seizures, then they can use some of the tools to go back and say, when I have my aura, number one, I want to get to a safe place, first thing, I want to let somebody know, if I can, if I have the ability to do that, and then I want to use some of the tools that I’ve been learning to apply, to, hopefully prevent the progression of the seizure into the full blown seizure. We’ve seen people with epilepsy and with non-epileptic seizures be able to take that approach.

There’s a project called Project Uplift. Is this is something that’s similar or different to the workbook?

Dr. Curtis LaFrance: Yeah. So Project Uplift is a great self-management tool that was created by the Managing Epilepsy Well Network, some of my colleagues and collaborators, who were funded by the CDC, the Center for Disease Control and Prevention. So Project Uplift addresses depression and epilepsy. This addresses the seizures and the comorbidities. So it’s an inverse of the approach. They can both affect quality of life and improve quality of life, but the approach is a little bit different with Uplift, as it is with ours.

The other thing that I say with our workbook is, it’s not a self-help book. So it’s to be done in concert with a clinician who knows how to treat people with seizures. So Uplift, you can get trained… or rather the clinician can get trained, and then be able to work with individuals with epilepsy. That’s for Uplift. They’ve got a number of other things that Managing Epilepsy Well network uses, whether it’s Hopscotch, which is used for cognition or thinking problems that can be associated with epilepsy. Yeah, a number of great resources that the MEWN has through the CDC.

So eye movement desensitization reprocessing therapy. Tell us about this.

Dr. Curtis LaFrance: Now, EMDR is the acronym for that. People with histories of trauma can use EMDR to reduce some of their trauma-related symptoms. There are some case series that have been done for EMDR in individuals with non-epileptic seizures that showed a reduction in seizures. Those weren’t controlled studies, so we can’t attribute causation to say, well, that’s what made it go down.  I’ve got a number of patients with trauma histories, who say that EMDR was the thing that really helped me.

Vastly, I’ve had people say, you know what, I started doing it, and it didn’t really help. Nothing that we do in medicine is 100% effective, but I can say that some of my patients have anecdotally said, this has really helped me.

Do these programs work for kids, as well? How do you include family members in this process?

Dr. Curtis LaFrance: Yep. It has not been studied in children 18 and younger, or rather, under 18. All of our clinical trials have been in 18 and older. So I’m only speaking from the published data. What I can say is, anecdotally, I’ve had a number of people say, yeah, I used the workbook with my 16-year-old, and it was fine. So when you say kids with epilepsy, are you talking about neonates, are you talking about 18-year-olds? That kind of thing.

When people ask me, hey, can it be used with kids? I say, it can be used for kids who have some self-awareness, and who have some maturity. For those who might be in their tweens, they might not be ready for some of the ideas or the concept. But I’ve had some adolescents, who were very mature and had a lot of insight. So there’s not a statement about it, it can only be used from this age to this age. There are people who do want to do a clinical trial in kids using the workbook, but that hasn’t been done yet.

If there’s nobody in the area in somebody’s region that’s an epilepsy specialist, what can they do? What can this person do? How can they find either remote resources, or is that possible? There are there lots of people in rural areas, or unable to get to an epilepsy center and see a specialist. What do they do?

Dr. Curtis LaFrance: They keep being an advocate for themselves.

Here’s what I mean by that. I tell people, my patients and family members, you are your best advocate. I’ll hear statements like doctor, can you write me a letter, I’ll say I can, but I want you to write the letter, and I want you to write the letter to your doctor, your hospital, your congressman. I want you to write letters to the licensing boards. The reason why I say this is because I live in two different worlds on a number of fronts, so in neurology and psychiatry. I live in two different worlds at the same time. In the VA and in the civilian world, I live in two different worlds at the same time.

So interestingly, with the VA system, being trained in telemedicine, I can treat veterans around the country. I go to my office in Providence, Rhode Island, and I see veterans all around the country, because the VA is a national system. So, one of the reasons that people can’t treat across state lines is because for me to treat somebody in Georgia or Arizona, I have to have a license in the state of Arizona, and I’m not going to get 50 licenses to be able to do that. So that’s why I’m saying, lobby. Go to the boards and say, you know what, telehealth has been helping people around the country and around the world, let’s make sure that people who have specialties can treat people, or people who are primary care can treat across state lines, and not have that burden of the system that exists in the civilian world. That would be a way to really push the envelope, which I’m a big fan of.

So that’s what I would say, keep being an advocate for yourself, but also keep asking around. A lot of times people will say, well, I’ve got a local clinician, they’re familiar. I view us in medicine as eternal students. So some people will say, I’ll see you, and I’ll read the workbook, and we’ll work through this together. That’s another option, is have the local people, whoever it is, to get equipped using the resources that are available. But I would say, like we’ve talked about earlier, Epilepsy Foundation, CURE Epilepsy, American Epilepsy Society, CDC, those are all places that have information. Sometimes you’ll see websites that will say, here, local clinicians. Keep advocating for yourself, is what I would say.

Are non-epileptic seizures less dangerous to the brain than epileptic seizures?

Dr. Curtis LaFrance: People will ask, am I going to get brain damage from these? What I will say is that the effects of recurrent epileptic seizures… Sometimes people who have certain types of epileptic seizures, they can drop their oxygen level, and they can become hypoxic, and that can actually affect the brain, as you’re aware, we don’t see those same oxygen level drops in people who have generalized tonic-clonic non-epileptic seizures. So over time, we don’t see the same brain energy risks that may be associated with some types of epileptic-seizures that we do with non-epileptic seizures.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

a younger man hugs his elderly father from behind as they smile at the camera

Aging and Epilepsy: Consequences and Comorbidities to Consider in Older Individuals

Epilepsy is the third-most common neurological disorder in people age 65 and older after stroke and dementia, conditions which themselves increase seizure risk.1

This webinar discussed the relationship between epilepsy, dementia, and stroke, and discussed whether people with epilepsy have an increased chance of developing dementia as they age. Viewers also learned about strategies that people with epilepsy can implement to reduce their risk for these conditions.

  1. World Health Organization. “Epilepsy: A Public Health Imperative.” Date: 2019. Date accessed: May 3, 2021. https://www.who.int/mental_health/neurology/epilepsy/report_2019/en/ 


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About the Speaker
Dr. Alice Lam is Assistant Professor of Neurology at Harvard Medical School and the Massachusetts General Hospital. As a physician, Dr. Lam takes care of patients in both the subspecialty Epilepsy Clinic as well as the Memory Disorders Unit. Her clinical and translational research program explores the interface between epilepsy, the neurodegenerative diseases, and cognition, using a combination of neurophysiology, neuroimaging, artificial intelligence approaches and cognitive outcomes.


Q&A with Dr. Alice Lam

Our population is aging. The number of Americans over age 65 is going to double in the next 30 to 40 years. And as we’re getting older and watching people around us get older I think it’s totally natural to wonder how are we going to live our best lives when we’re older adults? We all want to have a sense of independence, we want to have the ability to do things for ourselves, to make decisions for ourselves. We all want to preserve our memory, our ability to think clearly, to interact meaningfully with the world around us and to have ourselves represented.

How will having epilepsy affect your brain as you get older?

Dr. Alice Lam: Let’s start with a pop quiz. The first question is what age group has the highest proportion of people who are currently living with epilepsy? That’s regardless of when they’re actually diagnosed with epilepsy. Is it children, young to middle-aged adults, or older adults? I’ll give you the second question, which is, what age group has the highest chance of developing epilepsy, meaning being newly diagnosed with epilepsy?

The answer turns out for both questions is the same, it’s older adults.

People over age 65 are most likely to either have a diagnosis of epilepsy already, meaning they developed epilepsy as kids or as adults and have now grown old with epilepsy, or to develop epilepsy for the first time. And in the United States alone, over 100,000 older adults each year are newly diagnosed as having epilepsy.

Older adults are the fastest growing demographic in the U.S. as well. I told you earlier that the number of older adults is estimated to double in the next 30 to 40 years, so now I hope you can see why aging and epilepsy is such an important topic, this is a public health issue. It affects a lot of people currently and it’s going to affect a lot more people in the next few decades.

What are changes in our thinking and memory that happen normally as we age and how does that differ from dementia? Does having epilepsy increase my chances of developing dementia?

Dr. Alice Lam: Yes, having epilepsy does increase your risk of dementia, and it does increase your risk of stroke. But the good news is that you can substantially reduce your risk of both dementia and stroke with some very simple changes in your day-to-day life.

We lose brain cells, we lose connections between brain cells. Some brain cells shrink in size and the wiring between brain cells also shrinks. And related to these structural changes, our cognitive abilities also change.

We know that as people get older even if they’re healthy we start to have slower processing speed. Our working memory gets a little worse, our autobiographical memory, meaning our recollection of events that happened to us earlier in life, these details start to get a little bit fuzzier, and our ability to solve problems, come up with new ways of doing things also declines. But it’s important to note that these normal changes even though they exist they’re pretty subtle so many people might not even realize or might not be aware that these changes are happening. And these changes are generally not significant enough to interfere with a person’s ability to perform their daily activities.

How is normal brain aging? How’s that different from dementia?

Dr. Alice Lam: We know that there are some cognitive declines that happen in normal aging, but when people start to have a decline in their cognition that is more than we’d expect for normal aging, then we start to worry about whether or not they might have dementia. And so the precursor to dementia is called mild cognitive impairment. People with mild cognitive impairment have a decline in their thinking that’s significant often, so they notice it themselves or their friends or their families notice it. But despite this decline they’re actually still functioning pretty well. They can still work, they can drive, they can take care of their finances, they can cook meals, they can do all the things that they would normally do in their daily life.

When someone’s cognitive impairments become severe enough that they start to have problems with their activities of daily living, then we say that that person’s developed dementia. This might mean that they’re no longer able to figure out how to pay their bills or they’re no longer able to work a job that they’ve worked for the past 10 or 20 years, or they’re no longer able to figure out how to cook meals. So there’s different stages of dementia depending on how cognitively and how often functionally impaired someone is.

How do we explain this mismatch that you we can have someone with severe brain pathology whose mind is still able to function at a very high level?

Dr. Alice Lam: Well, one of the ways to explain this is a concept that’s called cognitive reserve. You can think of cognitive reserve as your brain’s ability to function well even the setting of having brain disease or having an injury to your brain. Cognitive reserve is how well your brain is able to compensate for disease or for injury. It’s your brain’s ability to find other ways of getting a job done if the usual way of getting things done suddenly becomes unavailable. I think about cognitive reserve in terms of brain networks, how different parts of the brain communicate and work together. And high cognitive reserve means that you’ve developed brain networks that are efficient and that are flexible.

Let’s say you live in this town and you want to go from your house to the pool, that’s pretty easy. There is a road that connects those things directly. All right. Think of brain networks as a system of roads in the brain that connects different parts of the brain that need to work together. What happens if there’s damage to a brain network, for example, from a stroke or even from a disease like Alzheimer’s disease? What happens if the damage affects this brain network that goes from your house to the pool and you can’t use it anymore? Now, how are you going to get from the house to the pool?

If you had developed other roads, other brain networks, even if this one road was blocked you might still be able to figure out how to get from your house to the pool. So you could take this path or you can take this path. These paths may not be as efficient, they might not work as well as the original road you are using but you’ve used these other networks to compensate for the fact that that main network is no longer working. That’s what cognitive reserve allows you to do.

I think that one of the best things about cognitive reserve is that it’s closely related to your life experiences and to your lifestyle. And that means that cognitive reserve is something that we can actually modify and improve over the course of our lives. We know that things like education and activities that are intellectually or socially stimulating, these things can greatly build cognitive reserve, and these factors actually it turns out can reduce your risk of dementia by 30 to 40%. While a lot of what I’ll say in this talk may sound like doom and gloom and no one wants to hear that they have an increased risk of dementia, what I want you to know now is that you can actually do something to reduce this risk, you can build cognitive reserve.

How does having more cognitive reserve actually allow you to reduce your risk of dementia?

Dr. Alice Lam: Let’s imagine someone who has early stages of Alzheimer’s disease. And Alzheimer’s disease, it’s a slowly progressive disease where your cognitive function gradually worsens over several years. Now, when this person’s cognitive function declines enough that it starts to interfere with this person’s daily activities, they’ve crossed the threshold and we can say that this person has developed dementia.

Now, what would this curve look like if this person had a severe head injury a few years back? Well, if they had a severe head injury there’s likely been damage to some of their brain networks and other brain networks are now having to compensate for that injury, so this person will be starting out with less cognitive reserve. And with less cognitive reserve but the same amount of Alzheimer’s disease pathology in the brain this person is going to be on a different trajectory shown on this red curve here. And you can see with less cognitive reserve this person will actually develop dementia at an earlier age compared to if they hadn’t had this brain injury.

Now, let’s take the opposite example. Okay, let’s take someone who has a healthy brain, a high amount of cognitive reserve. Someone who has high cognitive reserve, even with the same amount of Alzheimer’s disease pathology in the brain will actually develop dementia at a later age. And depending on how much later this age it’s possible that they might actually pass away from something completely different before they even ever develop memory problems or dementia. And so you can live your whole life without ever developing dementia because you’re able to kind of push it far enough down the line.

The bottom line that I want to make here is that brain injuries and low cognitive reserve, these things put people at increased risk of developing dementia earlier in life than they normally would. Whereas high cognitive reserve can actually delay the onset of dementia and in some people it might delay the onset of dementia to such an extent that for all practical purposes it’s prevented that person from getting dementia. That’s why cognitive reserve is really important.

How might this apply to people with epilepsy?

Dr. Alice Lam: The bad news is that people with epilepsy are two to three times more likely to develop dementia compared to people without epilepsy. Let’s say there’s a large amount of person to person variability in calculating this risk and there’s many factors that determine a given individual’s risk of developing dementia. And some of these things they might include things like when did you first develop epilepsy? What’s the cause of your epilepsy? How frequently do you seizures? How many and which seizure medications do you take? How long have you been taking seizure medications? And do you have depression or anxiety? Now, it can be tricky to try to figure out the individual contribution of each of these things because many of these factors are pretty closely intertwined. If you have frequent seizures you’re probably going to be on more seizure medications, and if you developed epilepsy early in life you’re probably going to have been taking seizure medications for a longer period of time. So it’s a little complicated to tease apart.

I’ve been talking a lot about the risk of developing dementia in someone with epilepsy but what I want to point out here is that most memory problems in people with epilepsy aren’t actually related to dementia. I think that this is something that my patients ask me about a lot because I think most people are… Dementia is one of the most worrisome things for a lot of people because right now we don’t have cures for diseases like Alzheimer’s disease or vascular dementia. But as I said earlier there are a lot of things we can be doing to reduce our risk of developing dementia and the setting of these diseases.

What can we do to keep our brains as healthy as possible as we get older? What are the things that we can do to actually maintain our brain health?

Dr. Alice Lam: Up to one in three cases of dementia could be prevented with just simple changes in lifestyle. What I’m going to share with you are recommendations that are largely agreed upon by many major health organizations on how to maintain brain health. And this applies not just to people with epilepsy, actually these are recommendations that are made to adults, essentially people who will be growing older. And these recommendations though I think that they are informative for people with epilepsy again because as I talked about people with epilepsy have a lot of these risk factors as they’re accumulating through life.

First, there are things we can do to increase cognitive reserve, and the biggest one there is to keep your mind active. Think of this as exercise for your brain. This could be reading, doing crossword puzzles, playing card games, using the computer, photography, playing a musical instrument, things that keep your mind going. We know that cognitive activity in mid and late life is associated with a 30 to 40% reduced risk of dementia, so really important to keep your mind active throughout life.

Second one there, protect your brain from injuries. Now, particularly for people with epilepsy seizures can put you at risk for head injuries and this is not something that you have much control over, unfortunately, but that means that you need to be extra careful and protect your brain when you can. So simple things like wearing a helmet if you’re riding a bike or wearing your seatbelt in a car. And then getting enough sleep, these are all things that will boost your cognitive reserve.

And then the third set of things as you might guess from the theme of this talk is controlling vascular risk factors, so stay physically active. The recommendation from the U.S. Department of Health and Human Services is that adults get 150 minutes of moderate intensity aerobic activity each week. What’s moderate intensity aerobic activity? This is pretty much any activity that gets your heart rate up, it gets your heart beating faster. It could be something like brisk walking, dancing, gardening, biking, water aerobics, things like that, but it’s really important to stay physically active.

Work with your primary care doctor to make sure that things like high blood pressure, diabetes, and cholesterol are controlled. These will reduce your cardiovascular risk. Quit smoking. I know that many people think about smoking primarily in terms of risk for lung cancer, but smoking it turns out is horrible for your blood vessels and it’s pretty horrible for your brain as well, so if you can quit smoking that may be one of the best things that you can actually do for your brain.

Eat a heart-healthy diet. What I often recommend to my patients is diet that’s similar to a Mediterranean diet. That’s a diet that has a lot of fresh fruits and vegetables, lean meats like chicken and fish, and try to avoid red meats like beef. And then finally avoid excessive alcohol consumption. There are mixed studies and you’ll probably hear on the news, whether small amounts of moderate amounts of alcohol may be good or bad for your brain health, so that’s mixed. But I think pretty much everyone agrees that excessive alcohol use which is basically more than one drink a day for women or more than two drinks a day for men that you should avoid that if you want to maintain good brain health.

The take home points for today. The bad news, epilepsy is associated with a two to threefold increased risk for dementia and stroke. The good news, staying mentally and physically active and controlling vascular risk factors can substantially reduce your risk for developing epilepsy and stroke. I hope that encourages you to go out, be mentally and physically active, and to try to keep your brains healthy as you grow older.

It is well-documented that AED side effects are more pronounced in the elderly because metabolism is slower. How should this be communicated to neurologists? Are they aware, and how often and what age do you recommend that dosages be lowered because of this?

Dr. Alice Lam: That’s a great question. The answer to that is a little complicated, but you’re definitely right that as people get older our metabolism slows. Our liver slows down the metabolism, our kidneys slow down eliminating medications from the bloodstream. But that’s also highly variable from individual to individual and as you know people have different body weights and there’s a lot of different variability person to person. I think if you’re aware of that and you think that this may be something that affects you I think it’s important to talk to your doctor about that.

One thing that your doctor can check, they can look at the level of seizure medicine that’s actually in your blood and that will give for you… That basically tells you how your body is metabolizing the amount of medication your doctor is prescribing for you. And it might turn out that maybe your doctor was unaware or your level was actually a lot higher than they thought it was and you might be able to reduce your dose of seizure. But that’s one objective way you can decide whether you’re on too much seizure medication as you get older.

Can Dilantin affect balance over time and do you have any comments on this or suggestions about what to do about it?

Dr. Alice Lam: Dilantin can definitely affect your balance and it can do that in a few different ways. One, if you’re on too high a dose of Dilantin you can actually have this Dilantin toxicity where you’re off balance and you’re wildly… Some people describe it as this feeling of being drunk without having had anything to drink. And so if your dose is too high you might notice that, and if that were the case you’ll probably notice it usually about the hour or two after you take your medicine. That’s one way it can affect dizziness.

Long-term it can also affect a dizziness in a number of different ways. Sometimes people can develop what we call a neuropathy that’s associated with long-term Dilantin use. That means that the nerves that go from your spinal cord down to your feet and help your brain know where your feet are and what they’re feeling on the ground below, those nerves can get damaged and you might not be able to feel your feet as well. And we also know that Dilantin over time can affect the cerebellum. That’s a structure in your brain that controls balance and coordination, things like that. So, yeah, I think that there is a fair amount of evidence that Dilantin can affect your balance but again it can do that in different ways.

Is there anything that can be done about that?

Dr. Alice Lam: Well, if you’re on too high a dose of Dilantin then obviously reducing the dose or trying to adjust how you take those doses or maybe even changing the medicine if it’s not the right medicine for you would be one way to do it. Obviously Dilantin is an older seizure medicine and I tend to avoid using it in older adults for a number of reasons. It tends to be older adults who are on it because if they were diagnosed with epilepsy years ago that’s what was available years ago and a lot of people are very comfortable staying on that medicine if it was working for their seizures, and so that’s often the case of patients who come to see me who are on Dilantin already.

There’s a lot of newer seizure medications that may not have those kinds of adverse effects, for one. Dilantin also, the way it’s metabolized is a little interesting and there can be interactions with a lot of other medications, not even just seizure medications but other common medications that you might take for other conditions. In an older adult if you’re running into these problems you might think about switching off of Dilantin for that reason, the medication interactions and these long-term effects that we know can happen with it.

If a person is over 80 and has had no seizure activity in 15 years, do you think medication dosages could be lowered?

Dr. Alice Lam: It’s something to think about, again, this is something that’s very individual and I can’t answer that without knowing more details of what happens to you when you’re having a seizure or what risk for injury might you incur if you did have a breakthrough seizure because you lowered your dose. But these are tricky questions. Even if I did know more about this person it’s not something that I could answer concretely, it’s something that really depends on the risk benefit ratio for each person and how willing they are to take a risk like that. I think you have to think about what would happen if you had a breakthrough seizure versus how bad it is to be on the level of medicine that you’re on right now. Are you having a lot of side effects from it or not? You just feel you want to be on a lower dose. The good thing is to discuss with your neurologist.

So a rupture of an arterial venous malformation maybe has led to development of tonic-clonic seizures and many cognitive issues, including problems with memory. Is there a greater risk of this person acquiring dementia as they age?

Dr. Alice Lam: Yes. So having this brain injury and having these cognitive issues that result you’re now at a lower cognitive reserve than you would have been before this AVM ruptured. And so I would say that, yeah, if you were to develop the kind of changes in your brain from Alzheimer’s disease you might be more susceptible to having dementia earlier from that than you would have had you not had this brain injury. But it doesn’t mean that you shouldn’t still try to reduce your risk for that.

At what point in time do you start having the discussion about driving or not driving?

Dr. Alice Lam: I think that sometimes people have awareness or insights to know when they feel it’s not safe for them to be driving. But it’s a really hard thing to actually make this assessment in my clinic, in my office, because I’m seeing somebody, I’m talking with them but I have no idea when they get behind the wheel how they would react to things. I don’t know, what would they do? Would they be able to stop in time if a kid ran out in front of the car to run after a ball or something like that? What would they do if a car swerved into their lane all of a sudden, how would you react to that? These kinds of things are really hard to gauge in a clinic.

One thing I’ll often do is sometimes I think it becomes pretty clear that someone shouldn’t be driving. They’re either getting into accidents or they’re getting lost while they’re driving, things like that. And those cases are a little bit more straightforward and often families will take away their loved one’s keys before even asking me about it. But when it gets a little grayer, when things aren’t quite working as well as you want to in your brain, but a lot of you’ve been driving your whole life, it’s an automatic thing almost, you don’t have to think about it so much.

What I’ll often do is I’ll recommend that people undergo a formal driving assessment. And so there are different centers that do this. There’s occupational therapists who are trained in assessing people’s safety in driving, and often this kind of driving assessment it may involve pen and paper tests first and if you do fine on that then you would do a behind the wheel on the road test where someone will be with you and assessing how you’re able to react to different things that happen. And so I often lean fairly heavily on these kinds of assessments to make a good assessment of that. It’s again, as I said, it’s really hard to know from just talking to someone in my office how they would actually do on the road.

Are some epilepsy medications worse for dementia?

Dr. Alice Lam: One way to ask it would be, are some epilepsy medications worse for cognition, not necessarily dementia? But I guess if they’re worse for cognition then they’re not going to help if you have dementia either. So if I ask my question, are some medicines worse for cognition? There are some medicines that we know have a worst cognitive profile compared to others.

Now, again my patients can respond very differently to seizure medicines. Again, there’s a lot of inter-individual variation, but generally there are some medicines that are thought to be relatively neutral or relatively… That they don’t really affect cognition too much. And those medicines that people often use in that case are levetiracetam or Keppra and lamotrigine or Lamictal. Those are thought to have relatively benign cognitive effects.

Tut then there are medicines that we know can definitely worsen cognition. These tend to be some of the older ones, so phenobarbital has been shown to have poor effects on cognition. Dilantin even can do that as well and carbamazepine. Some of these older medicines may have more of those more pronounced effects. But, yeah, I think, again, as in that slide where I looked at what kinds of things can affect memory in someone with epilepsy, choice of seizure medication can definitely do that. Topiramate, that’s another one that tends to affect cognition pretty badly.

How about zonisamide?

Dr. Alice Lam: It can. Again, it really varies from individual to individual. Zonisamide wouldn’t be on my top list for someone who’s having cognitive problems already, it would a bit further down the list. But I would say it’s not entirely neutral but it’s not as bad necessarily as some other ones. But everyone is… Again, I can have one patient who’s on a whopping dose of a medication, has no idea it’s in their system. And have another patient who’s on the same medication on a really tiny dose and is falling over because the side effects are so bad. So it’s really hard to predict that unless you actually just try it and see how you feel on it.

If somebody is feeling a cognitive impact and it’s possibly because of their medication, are those changes reversible if patients switch medications?

Dr. Alice Lam: Some of them can be, yeah. Again, if it tends to be a, “I just started this medicine a couple of months ago and I and my family are all noticing that I’m a lot slower on forgetting conversations.” Then yeah, in general come off that medicine. I would expect those side effects to get better as you’re off the medicine. But some of these older medicines like phenobarbital, Dilantin, if you’ve been on them for years and years and now you’re coming off them it may not be as great a benefit because there are some long-term changes from those medicines. So you might not notice as great a benefit but it might still be worth trying to come off them to see if you do get a benefit.

Can testing neuropsych evals tease out declines in cognition based on AED side-effects versus declines resulting from regular aging? Can testing determine the source of the cognitive decline?

Dr. Alice Lam: Yeah, that’s a great question. I use neuropsychological testing actually pretty frequently in my patients with epilepsy and memory problems. I think that there’s a number of things that can be helpful with it and often I do use it for the purposes that you’re talking about to try to tease apart what is actually causing this person’s cognitive impairments. Because one thing that neuropsych testing allows you to do is it really… I mean, if any of you have ever done neuropsych testing it’s a several hour-long cognitive test. You never knew that there are many tests for your learning and for your memory and things like that. So it’s very detailed and it can get in very good detail what parts of your thinking are working well and what parts of your thinking aren’t working well?

A lot of patients will say, “My memory is bad.” But actually it’s not their memory that’s bad, it may actually be their executive function, their ability to plan and organize things that’s more affected than their memory. And so neuropsych testing allows you to tease apart some of those things. And depending on what cognitive domain, whether it’s memory, executive function, language, any of those things, depending on which domains are affected, that can often help us hone in on what might be causing those changes.

And so sometimes that can help me distinguish between whether it’s someone’s longstanding epilepsy that’s causing their cognitive troubles or whether it might be something new or different, maybe they’ve developed dementia or maybe they’ve developed depression late in life. Trying to tease apart some of those factors, neuropsych testing can be helpful for that, yeah.

Is the ketogenic diet a heart-healthy diet?

Dr. Alice Lam: Oh, that’s a tough one, actually. I actually I don’t know the answer to that. I think it’s tricky because obviously it’s a very fat-intensive diet and I should actually look that up, but I do not know the answer to that offhand. I mean, I know that people who are on the ketogenic diet get monitored frequently. They have their cholesterol levels checked, they have a lot of these metabolic things checked. But I don’t know what the data is in terms of long-term, if it actually predisposes you to having heart attacks because of the high-fat content or not.

Does chronic microvascular ischemic change get worse with time and does it make epilepsy worse?

Dr. Alice Lam: Okay, that’s a good question. For those who don’t know what is chronic microvascular ischemic change, the best way I can describe it is let’s say you have an MRI that’s done. What it looks like on an MRI are these little white spots actually, these little white spots that you don’t normally see but you do tend to see them more as people get older. And what we think of these little white spots is that it’s reflecting damage to really small blood vessels in the brain. It’s showing you that there’s some disease of the small blood vessels, they’re affected somehow. And sometimes that can be due to the kinds of vascular risk factors that we’ve been talking about, high blood pressure can definitely do that. People who smoke definitely you’ll see a lot more of these microvascular changes in the brain.

Can that worsen… I think that was the question, can it worsen epilepsy? What I’ll say is, there have been studies that been done recently looking at what are the risk factors for people who develop late-onset epilepsy. And it turns out that people who have these chronic microvascular ischemic changes, again think of them almost silent changes. Most people don’t know that they’re there, it’s something that you see on MRI, on brain imaging when you do the imaging but they’re silent. Think of it as silent cerebrovascular disease. It tells you that your blood vessels are not as healthy as we’d like them to be.

But anyhow, if you have those kinds of changes in mid-life in your 40s and 50s, that is actually a risk factor for developing late-onset epilepsy. Whether if you already have epilepsy that kind of change will worsen your epilepsy. I’m not sure if we know that or not, but again, in terms of this vascular risk I’ve been talking about, think about this chronic microvascular change as another sign that maybe things aren’t as healthy as you want them to be.

Are there different outcomes on epilepsy in other areas of the brain, for example, parietal lobe? Has this been studied or has it just been focused on TLE?

Dr. Alice Lam: A lot of the studies on cognition and epilepsy have been done in people with temporal lobe epilepsy. It’s the most common focal epilepsy so there’s a lot more people that have it compared to things like parietal or occipital or frontal lobe epilepsy, that’s probably one of the reasons. But also we know that temporal lobe epilepsy affects the temporal lobes and we know that those are really important for memory as well. I think that historically that’s been the case and it’s hard to do… You need really big studies in order to make these kinds of observations or to get these kinds of insights you need a lot of patients over time too.

 

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Siblings and Severe Childhood Epilepsy: The Impact of Seizures on the Family’s Mental Health

Siblings of children diagnosed with a severe childhood epilepsy known as a developmental and epileptic encephalopathy (DEE) often play an integral role in the care of their brother or sister. While they may learn patience and compassion at an early age, the mental health impact on these siblings can be enormous and often overlooked.

Children who have a sibling with a DEE may experience very strong emotions such as guilt, anger, sadness, fear, anxiety, and depression. The Siblings Voices Study, which included siblings in a variety of age ranges, was created to help families understand more about the impact of having a brother or sister with severe epilepsy and how these siblings adapt.1

This webinar discusses some of the key research findings of the Siblings Voices Survey, including some strategies to help improve the mental well-being and social development of siblings and resources that are available for families.

  1. Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Laurie D. Bailey, Lauren Schwartz, Tracy Dixon-Salazar, Mary Anne Meskis, Bradley S. Galer, Arnold R. Gammaitoni, Carla Schad, Epilepsy & Behavior, 2020, Volume 112, 107377 


Download Full Transcript


To hear from two college students about their experiences growing up with a sibling who has epilepsy, watch or listen to the Seizing Life episode Growing Up Alongside a Sibling with Epilepsy featuring Emma Cardwell & Nathan Bliss.


About the Speaker
Dr. Kelly Knupp is Associate Professor of Pediatrics and Neurology at the University of Colorado. Dr. Knupp practices medicine at Children’s Hospital Colorado in Aurora, Colorado and is the Associate Research Director of Neuroscience Institute and Director of the Dravet Program. Her interests are epileptic encephalopathies including Dravet Syndrome and infantile spasms. Dr. Knupp is also a member of CURE Epilepsy’s Scientific Advisory Committee.


Q&A with Dr. Kelly Knupp

For siblings of children who have frequent seizures or other types of associated unpredictable, visible medical things that need urgent care like respiratory events, is there a language, or are there tips to make this easier on the sibling?

Dr. Knupp: I think it’s really important to meet the siblings where they’re at. But I do think it’s important to talk to them about it. You may have some local resources with child life who may be able to come up with some very age appropriate terminology to discuss that. I know at my institution, our child life personnel are available to talk to siblings just as much as they are to talk to patients and are really good at figuring out how to turn that terminology into something that’s child-friendly. So ideas like having an IV that goes into your blood vessels paints a very different picture for a five-year-old than it does for a 15-year-old. So it’s really important to think about the words you’re using and how you describe it.

But I think as a parent, what’s also important is to ask clarifying questions to see if the sibling has really understood what you are trying to describe, or if they came up with something scarier in their head. That’s more often what happens, is we use words and children may misinterpret that as something scarier than what’s really happening. But I think knowing your resources and trying to find help with that can be really helpful. There are a number of books out there that can help with some of these specific things as well. And usually child life is aware of those books, or if there’s a family library at your hospital, they often have a number of these books around that can help describe those things.

Are there other helpful literature or resources in general to share with families who are struggling?

Dr. Knupp: Again, I would probably go back to the child life specialists and the family library. They often have sort of the best group of books, the… We actually turned to our epilepsy foundation to provide those books about epilepsy. So I think… I wish I knew of a great resource that listed all of those books. And maybe if somebody has a good idea of those resources, they can post them in the chat to share them with us, that really would be an amazing resource for families if there was a website that they could go to and find those.

One person notes that she believes that there’s a list of books on epilepsy.com. As a sibling myself, I pay attention to this space and there are lots of great books that span the age ranges. I was just reading one over the weekend that was really targeted to the younger set to talk about a sibling with disability. In this case it was somebody with autism, but clearly many of the context are the same. This particular book also had a workbook like a coloring book where a child could express their emotions.

Dr. Knupp: Along that line, one of the things I didn’t mention, I’ve had a number of siblings who have used an art therapist, which has been really helpful. It’s been really impressive to me to see some of the artwork that comes out of that.

What is most impressive to me is that oftentimes what the children think is going on is far worse than what’s really happening. particularly when our patients are going through things like epilepsy surgery, we have found that it’s really important for those siblings to be able to come into the hospital and see what’s happening to their sibling because otherwise what they picture when they hear about things like intracranial electrodes and surgery is so much worse than what’s really happening. It’s really important for them to see the real thing and know that their siblings are safe, but art therapy can be particularly powerful and helpful.

This person has found that her parents were also emotionally impacted, what resources are available for them?

Dr. Knupp: Yes. Parents definitely can be emotionally impacted by this. I think that every parent who has a child with a chronic illness really has to go through the whole grieving process. I think it can be really helpful to talk to other parents. I think it’s helpful to have a good social support network and it may require therapy. It may be that they really do need to sit down with a counselor or a therapist to work through some of that, and also have some insight of whether they may have some underlying anxiety or depression that could be contributing to this as well. And grieving is something that everybody does in different ways. So some people move through the grieving process fairly quickly, some people stall at one of the stages. So I think trying to get help to continue to move through that process and come to a place of acceptance can be really helpful for everybody in the family.

To your point, Kelly, I think we are recognizing it as a community that this is not post-traumatic stress, this is traumatic stress and chronic stress and that process starts very early and it’s good to start addressing it early for all members of the family. So here is a question. There are so many ways a severe epilepsy divides a family in an effort to maintain some normalcy for siblings versus keeping the child with epilepsy safe. How do families accept the new normal and not allow it to divide a marriage?

Dr. Knupp: Boy, that’s a challenging question. That’s a very complicated question and we know that divorce rates are higher in families with chronic illness. I think the more parents are aware of that, the more they are open to receiving some support and help through that. I think it’s also important for parents to recognize that their own individual processes are going to be different between the two of them just like it is with any other crisis or trauma that they have to deal with. And some families really do better when they’re apart than when they’re together, which is hard to say but that is the reality sometimes. But I think trying to intervene and trying to find some time to focus on yourselves as a couple can be very helpful.

That’s where extended family and friends often come in. It can often be very difficult to receive help from people outside your immediate nuclear family but I think that can be really helpful. Many of those people want to help you, they just don’t know how to help you. And so trying to establish that communication so that you can be clear with them of it doesn’t help me when you come empty my dishwasher, but it’s really helpful if you can take the kids for three hours so that we can go for a walk together and try to reconnect and trying to find ways to maintain your relationship that way. But I don’t think that there’s a perfect answer to this. Honestly, there are families with healthy children who struggle with this as well. So it’s not something unique to children with chronic illness, it’s just something that we see more often in children with chronic illness.

Can you discuss strategies for talking about risks of death for our eight-year-old with severe DEE has been near death multiple times and is in a hospice program? While those high risks for imminent death have been less frequent recently, should we still be open about discussing the risk with a five-year-old sibling?

Dr. Knupp: Boy, that’s tough. And I think this is where things child life can be really helpful. I mean, this is what child life does, is helps you have these difficult conversations. I think for the five-year-old, it’s really important to ask them where they’re at. And I would keep in mind that many siblings do worry about this and they may be afraid to talk to you about it. And so it may be helpful to say, “Hey, when you think about your brother or your sister, what worries you are you? Are you worried that he can’t run? Are you worried that he eats different food? Are you worried he’s going to die someday?” And try to figure out where that five-year-old’s at so that you can answer their questions in the place that they’re at. And I do think it’s important to talk about it and also to let them know that it’s not their fault. Particularly for a five-year-old the world still sort of revolves around them and so things that are not their fault still feel like their fault. And I think that’s really important to talk about that.

So here is sort of the intermediate age. The siblings in our family showed previous unspoken anxiety and concerns as they began planning their own families, thoughts about this.

Dr. Knupp: That’s very real, right? The question that comes up is will this be what my family looks like and do I have to worry about my children having this epilepsy? I think we’re in a better place now answering those questions than we were 20 years ago, because we know so much more about genetics. But I think having open honest discussions about that … I know that in my practice I’ve met a number of families who had sort of stopped looking for the cause of epilepsy for several years because it was exhausting, it was disappointing, it’s expensive, and it didn’t make a difference in the day-to-day care of their child. But when siblings started to approach sort of family planning age, it took on a new significance to reach out and have genetic testing done to figure out what were those risks really. So I think as much as you can provide information that usually is helpful.

I think also having open discussions about expectations of whether who will care for this child as parents get older. Oftentimes it’s very surprising because many times siblings will say, “That’s what I’ve always planned to do.” And the parents say, “Boy, I don’t want you to have this burden.” So it’s really important to have that discussion so that there’s a clear plan and clear expectations. Because more often than not, that’s the way that discussion goes: Parents are trying to find a way to reduce the burden and the siblings are saying, “No, no, no, I want to do this.”

Our focus was on our child with epilepsy and the therapy for coping with his diagnosis. How do we introduce this with his older sibling after the fact and make sure we didn’t neglect their feelings during this entire process of learning and understanding?

Dr. Knupp: Well, first of all, I would give yourself a break because you can’t undo the past. So if you think that you may have neglected something, what’s done is done and you can’t undo that. I think it’s important to focus on the here and now and moving forward and checking in with them and asking them, how are they feeling? Maybe if they’re older, talk to them about how you’re feeling and what it felt like in those times in the past that you felt like you had to do everything you can, and all of your energy had to focus on that and now you want to move forward. But I think it’s really important to be forward-looking with this. We’re not perfect, none of us are perfect and we’ve all had those moments where you really can’t undo that. But what’s important is to recognize the situation you’re in now and try to find the best path forward.

Just to clarify that child life is usually services at hospitals. Is that the case?

Dr. Knupp: Child life is usually services at hospitals, the vast majority of children’s hospitals have both inpatient and outpatient child life experiences. At my hospital they are able to meet with people before procedures, before appointments, they’re able to meet with siblings to talk about things like this. We actually have our child life specialists come up to our epilepsy camp to help out there. So child life specialists are usually open to a broad range of supports that they’re able to provide.

So somebody is asking for ideas for affordable counseling for parents. It’s definitely chronic anxiety and stress that would be lifelong. Is there anything available through hospitals for the parents?

Dr. Knupp: I think that’s hospital dependent. Here in my state, we would usually refer somebody to the Epilepsy Foundation for that as opposed to the hospital because we’re a children’s hospital. But I do think reaching out, and this again comes to sort of knowing your local resources. There often are sliding scale offerings for counseling available in a variety of places, and so it would be very helpful to start talking to your providers to see if they’re able to identify those. Interestingly, usually your primary care provider has the best knowledge of what those resources are. So it may not be your neurologist, it may actually be your family practice doctor, your internal medicine doctor or your pediatrician who may be able to identify those resources for you.

I wanted to learn more about the BLC, basic life support. Where does one find more about that? Is that something that might be available through hospital resources or hospice communities? But families are so burdened with all they have to do, how can we get them there quickly?

Dr. Knupp: Basic life support is usually offered through Red Cross. It can also be offered through your local fire departments, your hospital. So there’s lots of different resources for basic life support. As I have started mentioning this to families, it’s something that teenagers have really been open to taking. For many girls who may be taking babysitting courses or things like that, basic life support is usually part of that. But it’s a very systematic approach to what to do when somebody is in trouble and really can go a long way to alleviate some anxiety of what will I do if my sibling runs into trouble. I’ve been really surprised that many of the sisters may have already taken it with their babysitting courses and things like that, but many of the brothers have been really excited to take these courses and really do think that it helps a little bit in alleviating anxiety.

Here is less of a question, more of a statement, but I think it’s important to just share these things. So this person says that they have twins and a severely medically refractory child with severe SCN1A epilepsy and his needs completely consume me. I’m home schooling too to keep them healthy. I feel like I’m just meeting everyone’s needs and not spending quality time with my medically fragile child along with the twins. I feel guilty.

Dr. Knupp: I acknowledge that. I don’t have a way to fix that. I think that the truth is parents feel guilty all the time because we can’t be everything to everybody all the time. And that sounds like a particularly stressful situation. I think the first step is recognizing that you feel guilty and if you’re able to find ways to get some help so that you are able to first take care of yourself. Because if we’re not able to take care of ourselves, it’s really hard to take care of our loved ones. We sometimes forget that because we’re so busy taking care of our loved ones. But even if it’s taking a 20 minute walk, taking a break for a cup of coffee, taking those moments.

I really do encourage families to reach out to your friends and family for that type of help. They oftentimes want to help you and they just don’t know how. And that’s something that’s fairly simple, that maybe you just go sit in the backyard. So sometimes I know it’s hard to be away from your child with epilepsy because nobody else knows their seizures as well as you do and nobody else manages their seizures as well as you do. But if you can just get 20 minutes in the backyard to catch your breath, now they would probably be more than willing to help you with that and to identify those resources so that you can take care of yourself in that situation. I think parents always feel guilty and I’ll be the first to admit, I don’t have any children with chronic illness and I still have many, many moments of guilt for my parenting.

Thank you for that realism. But here’s an interesting point. While many families are able and want to help, this question is how do you get in-laws or extended family to believe that your child is having seizures and not faking it?

Dr. Knupp: I’ve encountered this. And I think oftentimes in that situation, it’s really helpful to invite them if you’re willing to, to visit with your neurologist so that your neurologist can help out with this. I’ve seen this come up not just with are these seizures really happening, but is this the management that really needs to happen? Sometimes we see this with ketogenic diet management where grandparents just don’t understand why they can’t slip a scoop of ice cream to the child and why that would be so detrimental. And so in those situations, it can be really helpful to enlist some help. I would definitely recommend that you give your provider a heads up that that’s what you want to discuss and what the concerns are so that they know to specifically address that during the visit. But that can be a really helpful way to manage that.

Here is one. It’s actually coming from a sibling and it’s actually a medical question, so I just want to change gears but sometimes it’s hard for siblings to get this information and so I do want to pose this question. Why would increasing dosage of medication be the go to answer when seizure frequency increases? Thank you in advance, worried older sibling.

Dr. Knupp: Often our thought when we’re doing that is if the medicine’s helping at a lower dose, it may help more at a bigger dose. We always have to be cautious though, because sometimes our medicines have the opposite effect. Sometimes our medicine can trigger seizures instead of helping with seizures. But we always want to make sure we maximize the medication before we move on to another medication. Usually that is our go-to, is to increase medications. The other thing that can contribute to that is particularly in our pediatric population, is that kids are growing. We may have to keep adjusting doses because the kids are getting bigger and so they need more medication to account for that bigger body size.

Thank you. As a sibling myself, I found it helpful to also go to medical appointments and learn more. So I encourage all siblings to do that, ask those questions. You may be taking on more responsibility and it’s just helpful to have that relationship with the medical provider and be able to go to them with these questions.

Dr. Knupp: Now I was just realizing at epilepsy camp, we have an Ask the Doc session where the patients, the campers who have epilepsy get to ask physicians questions because more often than not in the visit, their parents are doing the talking and not the kids. And I’m just realizing… and I had made a note to myself that we probably need to do a sibling ask the doc so that siblings have an opportunity to ask questions as well without everybody else interfering.

Thank you Dr. Knupp for spending your time and your expertise with us and answering so many great questions.


This webinar is supported with funding from Zogenix
Zogenix

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Women’s Health: Complex Interactions of Epilepsy, Medications, and Hormones

People with epilepsy may experience changes in their seizure patterns at times of hormonal fluctuation; for example, epilepsy in some individuals either develops or subsides during puberty. However, the connection between hormones and seizures is not well understood. This relationship is particularly challenging to understand in women, whose hormone levels change according to their menstrual cycles and during pregnancy. Seizures associated with a women’s menstrual cycle are referred to as “catamenial seizures.”

This webinar discusses how epilepsy and anti-seizure medications can affect hormones and reproductive health, how sex steroid hormones can affect anti-seizure medications and seizure control, and how the menopausal transition can affect epilepsy. Viewers will also learn about potential treatment options for catamenial epilepsy.


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About the Speaker
Page B. Pennell, MD is Professor of Neurology at Harvard Medical School, Vice-Chair of Academic Affairs in the Department of Neurology, and Director of Research for the Division of Epilepsy at Brigham and Women’s Hospital, with a secondary appointment in the Division of Women’s Health. She is a clinician investigator with a focus on sex-specific outcomes in epilepsy. Dr. Pennell’s current clinical studies focus on the effects of hormones on seizure provocation, pharmacokinetic changes of AEDs with exogenous hormones or differing reproductive phases, and maternal and fetal outcomes during pregnancy in women with epilepsy.


Q&A with Dr. Page B. Pennell

Here’s a question regrading a rare epilepsy. This person has noted clustering. The question is about PCH 19, and the person has noted clustering with menstrual period being a trigger for seizures. What’s the best treatment for stopping the period to keep the hormones from triggering the seizures in somebody like this?

Dr. Pennell: I actually had a slide about that and took it out. That is a very specific syndrome that is predominantly in females, and is very much related to this topic. There are some treatments that are currently in investigation and actually Dr. Lubbers, you might know more about the most recent, but really acts on that allopregnanolone basis. There’s a synthetic allopregnanolone called Ganaxolone. So there was a treatment trial specifically for this. Then also allopregnanolone, it’s only in infusion is a problem. But that’s being used in post-partum depression, so that hopefully will also get to the point that it can be used directly and developed as not just an infusion. But do you know the latest on the trial results?

That’s a great question. I know that it’s still under study for some specific rare diseases, including tuberous sclerosis. I don’t think the results have been reported yet, but that’s a great thing to pay attention to, as those trials are progressing, and thinking about it in the context of not just general seizure control, but seizure control in women. Great point. Here’s a question for you. Are there any known interactions between hormone changes and epilepsy devices, such as the vago-neural stimulator?

Dr. Pennell: Yes. There’s no known interactions between that. There have been not so much publications, but some investigators have looked to make sure that it has no effect on the reproductive axis hormones. Now in addition to VNS, of course we have RNS now. I guess technically, it’s a good question. If it’s in an area that’s going to cause a change in firing to the hypothalamus maybe. But I don’t know that any studies yet. That gives us another great idea to try to get funding, and just to make sure, maybe in those people who have it in an area that’s likely to cause hormonal change to look at the effect. But nothing reported to my knowledge.

How does elevated testosterone in polycystic ovary syndrome figure into the progesterone/estrogen balance? And particularly, the influence of Estradiol on seizure activity?

Dr. Pennell: Polycystic ovarian syndrome can potentially increase seizure frequency by first of all having more anovulatory cycles. Going back in the slides, I don’t know if you remember, but a C3 pattern, when you have anovulation, you don’t get the rise in progesterone, so you can have increased seizures because of that. Then as mentioned, it also causes hyper-androgynism, and testosterone levels. Back in the slide, I don’t know if I can go back, there is a metabolite, of testosterone, DH, which is an androgen, DHEAS. Which can be excitatory. Those are two ways it could contribute potentially to increased seizures. DHEA sulfate is actually from, you can see here’s the androgen and testosterone. Those don’t directly have an effect on seizures. They do have an effect on the brain, but not on seizures that we know of. But also, the androgen can maybe decrease the DHEA sulfate, which could increase seizures.

Does supplementing progesterone have an impact on the elevated testosterone?

Dr. Pennell: Not that I know of. Supplementing progesterone, yes. Not that I know of. Good question though.

Why do you prescribe progesterone lozenges for the C1 group rather than birth control?

Dr. Pennell: The lozenges that were used in the study are actually pretty high dose compared to the progesterone you would get in any of the birth control options. But more importantly, in the birth control options are synthetic progestins. They’re not quite this progesterone. The synthetic progestins do not metabolize to allopregnanolone. You really need natural progesterone and it is not easily taken as a pill, and actually gotten into the blood system through GI absorption. There’s two ways to give it, which is a lozenge, which it gets through the mucosa into the bloodstream. Or as an actually vaginal suppository. There is a micronized progesterone that can be taken as something you swallow, so that is another option.

Can medication become less effective post-menopause?

Dr. Pennell: So post-menopause, often seizures get better, and the medications are still effective. It is possible to have some seizure worsening during the menopause transition. It can actually take quite a while. It can be anywhere from two years to seven years. I have worked with our gynecology specialists on suppressing that erratic hormone phase through other hormones to try to stabilize that. In rare instances, we’ve even gone to suppression of the hormone axis with things that are such as used in in vitro fertilization techniques to completely shut down the hypothalamus, pituitary, ovarian axis. But again, I only do that in concert with reproductive endocrinology specialists.

We have a listener who makes the point that there’s still too many doctors who dismiss the issue in women. And I agree. Do you have any advice? Actually now we have these transcripts, and people can take transcripts of these recordings to their doctor. But what would you advise somebody who’s faced with a situation like that?

Dr. Pennell: It’s unfortunate. I certainly got into women’s health issues and epilepsy because of a lot of the stigma that was there, that is actually often present in women’s health across all disorders, but especially epilepsy. We just didn’t have information, scientific data to be able to discuss it and that also pertains to a lot about pregnancy issues. I think the best way is still to bring information to them with some of the studies that show that a third of women with epilepsy have this pattern, and there are considerations as far as different strategies that could be added on to the primary strategy for controlling seizures that can be a benefit.

If the doctor or PA or nurse practitioner doesn’t listen then, then find a new doctor. I know it’s not that easy. There’s a lot of areas in the country there are not enough neurologists, never mind epileptologists. But certainly, I’ve had patients move to other areas of the country where they didn’t have the same resources, and that they brought the information to the doctor and it was really actually very, very effective.

Does Epidiolex, or CBD, have positive or negative effects on catamenial seizures? Or do we know?

Dr. Pennell: I don’t know. It’s also a good question. I do know that Epidiolex has a lot of interactions. The first question I would have is how does it affect these pathways? I haven’t seen anything with it yet. But obviously it’s still not as commonly used in women of reproductive age as some of the other populations. So I don’t have any information yet.

If you are thinking about getting pregnant, what is the safest way to get off of a medication? For example, Trokendi RX, or XR, beforehand.

Dr. Pennell: The question is really, really important. We know that 50% of pregnancies are unplanned, and then we have that extra in the United States, and then we have that extra problem we talked about, about interactions and causing lower efficacy of some birth control options. The best thing to do is yeah, if you can plan the pregnancy, and to speak with your neurologist hopefully about how to get onto the safest medication regimens. We have several medications which are very safe during pregnancy. It really should be the exception to stay on a medicine that’s not as safe, because you’ve already tried the other medications and they don’t work for your epilepsy.

Topiramate is one that is in the middle, where it does have some increased risk, especially for small progestational aged births, or low birth weight, and a slightly increased risk of cleft lip and cleft palette. But it’s also not one of the most dangerous ones. If the other medications were tried, and they weren’t effective, certainly it would be possible to move ahead with a pregnancy on it. But as far as how to switch over, that is so individualized according to seizure types, seizure frequency, background, what’s been tried, side effects, so many things that it’s not one size fits all, but hopefully it’s a good partnership with your neurologist to get to that point.

Have you heard of seizures destabilizing in males as it they go through puberty? Does aromatization of testosterone to estrogen play any role?

Dr. Pennell: I did mention how some seizures begin around puberty. I should’ve mentioned that there are certain epilepsy types that the seizures get better as someone moves through puberty, or even goes away. The obvious is childhood absence epilepsy, or benign rolandic epilepsy. But I don’t know, yeah, if it’s been studied beyond that. Actually at the end, we were talking about the menopause transition and how we need more studies on it. But likewise, the pubertal transition is another thing that definitely is understudied.

As a woman with epilepsy who’s hoping to become pregnant, how can I find out about research studies I might be able to qualify for when I do become pregnant?

Dr. Pennell: There’s a few ways. There’s our pregnancy registries, which have provided such incredibly helpful information to know a lot more about the risk versus benefits of many different medications, medication combinations. In North America, there’s the North American AED pregnancy registry, which can be found pretty easily through the website. I encourage everyone to enroll in. It’s only a few phone calls, it doesn’t take much time. Likewise, there’s international ones such as EURAP. Then for other studies that are very active, you can look under ClinicalTrials.gov has a listing and search by epilepsy, and that gives information about trials that are ongoing. We have a very large study going on across the country, in case anyone also participate in that. It’s called MONEAD, Maternal Outcomes and Neurodevelopmental Effects of Anti-Epileptic Drugs. It’s 20 sites across the country.

But we are fortunately in the latter stages of it, because so many people volunteered time, and for their families. We’re not enrolling new families at this time, but believe me, we are always looking for funding to continue the quest to get all the answers. Likewise, there could be something new that’s happening at that time. You could also check with your local Epilepsy Foundation Chapter. But again, if there’s any study that involves humans, we have to actually register on ClinicalTrials.gov. That’s always a good place to look. Then you might have something through CURE Epilepsy, Dr. Lubbers, as a resource?

We would also guide people to ClinicalTrials.gov. It’s the biggest resource, most accessible, for the most current studies. How frequent do women with epilepsy develop preeclampsia? Will preeclampsia worsen the woman’s epilepsy?

Dr. Pennell: I know it’s frustrating to get mixed messages. But there were some studies that suggested that preeclampsia was more likely to occur in women with epilepsy, and those were studies that looked at hospital records, which is coding. They’re not as pure. Because whatever is coded for insurance reasons. It’s not very specific. In the MONEAD study that I just mentioned, we actually had a primary aim of looking at obstetric complications, and there were actually no increased rates of preeclampsia, eclampsia, in women with epilepsy versus the general population.

But obviously, women with epilepsy could still develop preeclampsia. It doesn’t seem to make her underlying seizures worse. But of course, if she goes on to eclampsia, she can develop seizures because of the other vascular effects of eclampsia. It doesn’t seem to be an increased risk in women with epilepsy.

Can repeat seizures lead to loss of libido in women of childbearing age?

Dr. Pennell: We think that’s possible, as we mentioned, the medications can cause decreased libido, depression can, and the treatments for depression can. A lot of the medications that are used for depression can also cause decreased libido. It’s multifactorial. We did want to look at this really specifically in WEPOD, that study I mentioned where we had women track their sexual intercourse according to their menstrual cycle and their medications, but we had a collaborator who’s an OB-GYN, and she was so helpful to remind us of these basic things that we don’t think about as neurologists, which is that once a person is trying to get pregnant, sexual intercourse has very little to do with libido. Its primary goal is very different. She did not feel that we could use our diary data to address libido whatsoever.

There is some nice work by Martha Morell to go back and look at, that does show some interactions with types of epilepsy and also medications. But untangling all those things, such as frequency of seizures, isn’t completely clear. But I think it probably is linked to frequency of seizures to some degree.

This person mentions the start of seizures that included tonic-clonic and absence seizures starting around 12 years of age. Depakote and Onfi has been offered as the best seizure control so far, and it seems like growth has slowed drastically. This brings in another hormonal paradigm, with a delay in menarche at about 16, at almost 16. Can medications or the seizures be responsible? I think particularly around the growth issue? And what would be good treatments for people to keep in mind?

Dr. Pennell: Around the growth, I’m not sure. First of all, I should say I’m an adult epileptologist. That’s where a lot of my hesitation is. Because although I’ll see someone who’s 16 because they have a hormonal problem or a concern, hormonal concern, or they become pregnant, I don’t practice during that earlier phase. Now, that valproate in particular has actually also been shown to cause lower androgens and lower sperm count in men with epilepsy. She said it could be affecting other hormones. You’ll have to ask a pediatric epileptologist.

Is there an over-the-counter way to check progesterone and estrogen levels for somebody who might want to track what’s happening with their cycles?

Dr. Pennell: Not over the counter for progesterone. But what you can do, is very effective, is do LH test kits. Luteinizing hormone is the hormone that’s released right before ovulation, and it causes the egg to be released. Then after the egg is released, then the corpus luteum stays behind and that releases progesterone. You can use LH test kits. They’re most commonly used for fertility, when someone’s trying to get pregnant, to see if they’re ovulating. You can actually get batches of them cheaper, such as through Amazon or some other source, if you are going to be doing it on a regular basis. It’ll tell you where to being. Usually around day 10, you do a urine sample every day. Then it’ll tell you if you’re having the LH surge. It is very accurate, as to whether a person’s ovulating or not.

Although it won’t give you the progesterone level if you’re not ovulating, it means the progesterone level’s low. The other thing we do in research settings are check day 21 progesterone level, because if they’re ovulating, that’s where the progesterone should be at the level we want. Then sometimes I’ll do it before starting the progesterone lozenge treatment. Then after I start progesterone lozenges, I check it again, and I want to make sure it gets above 20 nanograms per milliliter. If you’re going to check it, check it at day 21. Or if you want to see it over several cycles, if there’s ovulation occurring, then you can use the LH test kits.

Learn More

Seizing Life® Episode #20 – What to Expect When You’re Expecting … as a Woman with Epilepsy featuring Caroline McAteer

In this episode of Seizing Life, mother Caroline McAteer speaks to her experience bringing her daughter Nora into the world. Caroline discusses how she approached the topic of pregnancy with her husband, her epileptologist, and her OB-GYN, as well as how she managed her epilepsy and medication changes throughout the process to reduce the risk of having seizures while pregnant.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.