S1 Episode 39: Understanding and Destigmatizing Epilepsy

People with epilepsy have been stigmatized since the time of Hippocrates. Two epilepsy specialists, Dr. Caitlin Hoffman, a Weill Cornell Medicine pediatric neurosurgeon, and Dr. Heidi Bender, a neuropsychologist at Mt. Sinai Hospital, explain what happens in the brain to cause seizures. They give parents, teachers, kids, and their classmates a primer on understanding this common disorder and how we can best help if we see someone having a seizure.

Dr. Stieg: Today we’re going to talk about epilepsy. It was written about by Hippocrates 2,500 years ago. It was experienced by Julius Caesar, Truman Capote, Theodore Roosevelt, and Charles Dickens. Obviously a number of creative people have had this issue. About one in 100 people in the United States have been diagnosed with epilepsy and one in 26 people will develop epilepsy in their lifetime. I’m delighted to welcome two amazing women who are experts in the treatment of epilepsy. They will share important facts to demystify this disease to help our kids, parents, teachers, and help us overcome its negative stigma. Dr. Caitlin Hoffman is a neurosurgeon specializing in pediatric epilepsy and neurosurgery at Weill Cornell Brain and Spine Center. Joining her is Dr. Heidi Bender an assistant professor of neurology and psychiatry at Mount Sinai Hospital. Welcome to both of you. So let’s start off with the, you know, the basic questions. What is it and what does it mean to have it? So what is epilepsy?

Dr. Hoffman: Epilepsy is the synchronous firing of neurons in the brain, meaning that multiple groups of neurons fire at once and where they fire in the brain determines the symptoms we see and how that’s experienced by the patient.

Dr. Stieg: That’s what I really wanted to get into the, there are various forms of epilepsy. I mean everybody thinks about the, you know, falling down, shaking, foaming at the mouth. Caitlin, can you go into the subtypes of epilepsy that you’re treating?

Dr. Hoffman: So it depends on the area of the brain that is active at the time of the seizure. So that can take many different forms. If it is simply overactivity or spread of that activity to the sensory cortex that will be simply experienced by the patient as a sensation. You may not see anything terribly abnormal going on. Similarly, patients that have abnormal or overactivity in what’s called their temporal lobe can have such subtle symptoms as a rising epigastric sensation. They can feel a little bit nauseous — sometimes they actually do actually experience true nausea and vomiting, but again, they don’t have any abnormal movements associated with that. So it can take many different forms.

Dr. Stieg: And then there’s the common one that when we read about partial complex seizures where the person can stop talking. Can you go into that a little bit?

Dr. Hoffman: Yeah, I mean, so if the area of the brain that controls language is involved in the seizure, then the one of the initial symptoms will be a speech arrest. Similarly, and this is something that is often overlooked, behavioral arrest can represent a seizure and these children are often misdiagnosed as attentional deficit or just simply not paying attention in school when really they’re simply having multiple behavioral arrests back to back as seizures.

Dr. Stieg: You talked about this overactivity of the brain. Is there also pain associated with that? Do we have to worry about our kids or friends?

Dr. Hoffman: So it’s not typical. There is a subset of seizures called insular seizures or insular epilepsy where the overactivity originates from one of the deepest origins of, or the deepest areas, of the cortex in the brain called the insula, and that can actually be associated with a sensation of pain. However, that’s the minority of cases and in general this is not painful and in most cases actually not even remembered in some cases where the patient actually loses consciousness.

Dr. Stieg: But obviously if somebody falls down and bites their tongue or something and they’re going to have pain associated with that?

Dr. Hoffman: Correct, there’s a significant issue with injuries associated with epilepsy.

Dr. Stieg: Heidi, is there a genetic component to epilepsy?

Dr. Bender: There can be. There are a small subset of epileptic syndromes that can run in families, but it’s not necessarily the case. Epilepsy can be a byproduct of a traumatic brain injury or a stroke or some sort of trauma or damage to the brain. It can be secondary to a congenital or some sort of a birth injury, a pre or perinatal injury. It doesn’t necessarily need to be genetic, but it certainly can be.

Dr. Stieg: Given the amount of material that’s been written about epilepsy, there’s, it’s amazing to me that there’s still an incredible amount of mythologies that have arisen in this long historical record. Can you debunk some of those for us, Caitlin?

Dr. Hoffman: So we’ve found in global work with epilepsy and interfacing with multiple different cultural groups and environments that actually one of the largest challenges is just in decreasing stigma and presumed associated causes, whether that be an assumption that it is due to something that the patient has done, the family has done or that this is due to religious superstition. Those are some of the most common myths that we have to debunk and move past in order to get to education and treatment.

Dr. Stieg: All of these misperceptions and the stigma that go along with epilepsy have, in my mind, led to a broader category that I want to get into now and that’s the emotional aspects associated with the clinical syndrome. Heidi, maybe you can, as a neuropsychologist, I would imagine you deal with this on a daily basis. What do children feel in terms of the stigmatization related to having been diagnosed with epilepsy?

Dr. Bender: There’s such a great deal of stigma. Even if the child is raised in a super supportive home or a culture that really does not stigmatize epilepsy that much. Even in the best case scenario, children just don’t like to be different to be seen as different than other kids. And epilepsy can be very unpredictable. Sometimes a child can have a seizure without warning. They could be playing with their peers, they can be in the middle of a classroom and then something happens. There’s a book, “The Spirit Catches You When You Fall Down” about a young child with epilepsy. And that’s sort of what it can look like. It can just be this unbelievably quick arrest of speech, loss of consciousness, shaking convulsions that could be scary for other children to witness. The child themselves might not even have knowledge or awareness that this happened, but certainly their peers do, certainly their teacher does, and I think that’s a large part of the stigma.

Dr. Stieg: So what do you do with that child? How do you coach them, guide them through that?

Dr. Bender: Definitely information, education and de-stigmatization if there’s any. So information to me is very empowering for children with epilepsy. Making them aware of epilepsy is a disorder. Letting them know they’re not alone, that there’s 470,000 kids in the United States, just like them with active epilepsy. Making them aware of epilepsy as a disorder, as a syndrome. I think that’s key. Information that’s specific to the child. This is what I need to do in order to keep myself safe. Then education for the people around them, education for the teachers, education for the classmates, and then the last one is de-stigmatization. Making sure that everybody knows, “Hey look, epilepsy is not something that’s brought upon from the gods as was thought of so many years ago.” It’s not contagious. This is just something that happens. It’s an inherent part of who that child is and we need to accept them and love them and treat them the same way as we always have. Parents, as scared as they may be, need to try to be as calm as they can when discussing epilepsy and seizure with their children because the number one predictor in some studies of depression and anxiety in children with epilepsy is actually depression of the parents about the child’s epilepsy. So really for parents to take a breath, calm down and do the best they can to reassure their child that they will do everything they can to keep them safe.

Dr. Stieg: Do you go through role modeling in the office with the child and the parents say the child has had a seizure, what are you going to do or…?

Dr. Bender: So we certainly can and if there’s not enough time during an office visit because a lot of times office visits are taken up with this is what medication you need to take or these are the needs, the steps you need to take in order to, you know, visit a neurosurgeon or a neuropsychologist. There are actually videos on YouTube that are psychoeducation and they’re simulated seizures and it shows this is what a parent should do if a child has a seizure. This is what some teachers should do and one of my favorite resources is the Epilepsy Foundation of America or EFA.org. And in addition to having chapters, local chapters where children and parents can have support groups where they can meet with either other families or peers who are struggling with the same issue. In addition, there are great resources where it will take parents through… this is what a seizure action plan is and how to talk about it with the schools. Here are some, um, even some schematic diagrams of how to write down and log what is happening during your child’s seizure. So information knowledge is definitely power.

Dr. Stieg: Do you actually go to schools and work with teachers? 

Dr. Bender: Now mind you, I’m not a medical doctor. I’m a neuropsychologist but I go in and I do talk about stigma. I do talk about the emotional aspect of not treating that child like they’re different. And then I do direct schools, families and kiddos to the Epilepsy Foundation of America website because there’s so much valuable information. Again, developing a seizure action plan with the school is really key.

Dr. Stieg: What’s your sense of how well this is handled on a socioeconomic scale?

Dr. Bender: Well, we definitely know that socioeconomic status is definitely a risk factor for how quickly a child will get treated for epilepsy. And it could be potentially a barrier to quality care depending on insurance issues and what have you. There might be less resources available. So as a result need to make sure that we are taking care of those children the exact same way as we would regardless of socioeconomic status. But epilepsy is such an issue worldwide and in fact it’s more prevalent in poorly developed nations. There are 65 million people dealing with epilepsy worldwide and of that number up to 75% are either untreated for epilepsy or undertreated. They’re just not receiving the same quality of care. So there is a huge relationship between epilepsy and socioeconomic status unfortunately.

Dr. Stieg: We’ve concentrated predominantly on kids. What about an adult? I’m 45 years old and all of a sudden I have a new onset seizure. Is their response to this significantly different and how so?

Dr. Bender: So it’s interesting. Adults with epilepsy can be part of two groups. They could either have had epilepsy their whole life and because health care is now so much better than it has ever been, they’ve lived into adulthood and then they’re dealing with the aspects of having a chronic medical condition for that many years of life and the impact that it could have had on their brain. So that’s one group or subset of adults with epilepsy. The second subset is adults who have new onset seizures, as you said, and potentially we might not know the cause, but it could be due to some sort of trauma, infection, stroke. We know there’s an elevated risk of epilepsy or new onset seizures in Alzheimer’s disease and dementia, cerebrovascular disease, all of the things we see more prominently in older populations. So how do adults cope? Well, obviously everybody’s different and everybody copes differently without a doubt.

Dr. Bender: But one thing we definitely see is sometimes epilepsy can really do a number on your day to day life. Meaning you might not be able to drive. You might not be able to keep your job. Let’s say you’re a truck driver or a pilot or something that you could not do if you were seizing, and that would be dangerous. If the epilepsy is so severe that you’re having drop attacks or atonic seizures where you just fall to the ground, you may need to have somebody with you or accompany you. So it really can have, in adults in a different way, a huge impact on day to day functionality and even the way somebody supports themselves financially or occupationally.

Dr. Stieg: For the person that has chronic, ongoing, either incomplete seizures or not frank generalized seizures, how can that affect their cognitive skills, their motor skills, their emotional skills long-term?

Dr. Hoffman: Yeah, I mean it depends a little bit on how early those seizures started. If they began when they were a child and therefore it affected their overall development and those seizures went untreated when they were younger… Those effects can be quite severe. The public health implications in terms of the support that these patients need through not only school, but when they normally would age out into a vocation and cannot — there’s a significant burden on the family, the patient in society. And it’s a really, really important issue to address. New onset seizures in adults has a similarly significant impact in terms of, as Dr. Bender is alluding to, if they are having generalized seizures where it takes them two to three days to actually recover in their postictal period is quite long. They’re missing two, three days of work, you know, every time that occurs, and if that’s once a month, that’s not acceptable. 

Dr. Stieg: I’m an innocent bystander. I’m standing on a street corner and somebody falls down and all of a sudden starts having a generalized seizure. How can I help them?

Dr. Hoffman: So you know, the basics of any unresponsive patient are at play, meaning you secure the airway, the breathing, the circulation. But what’s specific to a seizure patient is to turn them on their side just based on the fact that vomiting can be a common component. And so you don’t, we want to prevent aspiration into the lungs.

Dr. Stieg: Aspiration being…breathing the vomit down into your lungs.

Dr. Hoffman: Correct. Correct. So you’ve turned them on their side, protecting them from that standpoint. Um, trying not to restrict their movement to prevent injury of the patient or you. In some patients the, there’s a significant issue with tongue biting. But again, you know, we don’t recommend in the field trying to prevent that in the sense that then it can incur injury to the, to the provider or the person trying to garner help. And then just of course, activating EMS and emergency medications can be provided.

Dr. Stieg: The EMS gets there and they’re going to ask, you know, what’s going on here? In order for me to prepare myself for that scenario, what kind of things should I store in my mind so I can help both the victim and also the EMS.

Dr. Hoffman: It’s a really good point because for whatever reason, seizures are one thing that people have a very hard time accurately recounting afterward. I think that’s just the stress of responding in the situation. But the most important things to capture are what did you see? What side of the patient’s body seems to be moving abnormally? Was it both sides? Did they stop speaking first? Did they drop to the ground first? Try to get in your mind the sequence of events that you observed in the patient and also how long that lasted and that’s also very important. If it did self-resolve, how long was that and then if the patient was lucky enough to actually come back to in your, under your care or observation, try your best to remember those observations of what came back first? Were they speaking immediately? Were they unable to speak? What side of their body seemed weaker for a bit? It can just be helpful in the overall diagnosis.

Dr. Stieg: Let me try to make this simpler for the person in the child’s family that’s experiencing seizures. I would presume it would be your recommendation that they should be seen by an expert group of physicians, neuropsychologists, neurologists that deal with epilepsy on a daily basis so they know that these are the questions that they should be asking. You know, all of a sudden if my child had epilepsy, I’d be going, “Oh my God, now I gotta become an expert.” You are experts. And so it’s, how important is that?

Dr. Bender: Oh, I can’t underscore how important it is to get the best treatment team possible for your child and as quickly as possible. So seeing a neurologist, a neuropsychologist and epileptologist, and if need be, ultimately a neurosurgeon to help put the best group together for not only the child’s needs immediately, but also for planning for the future and going forward. So I’m a neuropsychologist. I deal with brain and behavior relationships. So very often when a child is diagnosed with epilepsy, the family will come to me and say, “Oh, my child is struggling in school” and you may say, really? But they were just diagnosed with epilepsy. People might not know this, but there’s actually a fairly large subset of kids who are having neuropsychological and academic difficulties six months, a year, even five years prior to their first seizure. So that might’ve even been almost a warning sign. So kids and families come to me, they received some neuropsych testing and then I try to identify what the issues are and what the potential impacts are in the classroom.

Dr. Stieg: Can you go to the, what is it, the epilepsy foundation and they can give you guidelines or directions as to where you can get good help for your child?

Dr. Bender: Yes. So I would definitely recommend the Epilepsy Foundation of America because they can connect you with other families who have walked the same road that you are currently walking. But also there is a network of board-certified neuropsychologists, also known as the ABCN. So if you Google the American Board of Professional Neuropsychologists, you can actually find a list of board certified neuropsychologists that are located near you.

Dr. Stieg: I want to express my appreciation to both of you. I think we’ve gone through the fundamental questions now about what is epilepsy and what does it mean to have it.  And I really appreciate the fact that you’ve helped the listeners get information about where they can go. I mean, this is an overwhelming problem. Thank you so much.