Dr. James Valeriano: Expert on Neurology and Epilepsy

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, hope you're having a great day and welcome to my show. I have to Thank you so much. Wow. You listeners, you're awesome. You really are. Thank you so much for being such loyal listeners. You know, this is my 21st year on the air. Can you believe that? 21st year. So I couldn't do that without you. So thank you. And then to my listeners around the world, From Australia to Russia, thank you so much for being great listeners. You know, every country, I always say, even if one person, one, is listening, you can be that one that can impact other people with disabilities, whether you're in Africa or Saudi Arabia. So once again, thank you so much. Special shout out to my good friend, Richard Roberts in Brazil. Hello, Richard. You're such a great disability rights leader, as is Gang Young Cho in South Korea. So I am just so appreciative of everything you do. And I also— ready, here it comes— special shout out to Yoshiko Dart, my good friend. Love you, Yoshiko. Lead on, Yoshiko. And as I always tell you, she is the wife of the late, great Justin Dart Jr., our American history, disability rights history, civil rights leader. So that's why I want you to always remember, and that's why for the past 6 years, I always have a shout out to Yoshiko. And hi, Mark. Oh my goodness, this company is the lead sponsor of the show. And oh, I have to be telling this to Dr. Valeriano. Just last week I was on Medical Frontiers headquartered in Pittsburgh, Pennsylvania. So this show was done in Pittsburgh on KDKA. It was for— and that's why I have Dr. Valeriano on— celebrating National Epilepsy Awareness Month. And as you listeners know, and if you're new and don't know, I'm living with epilepsy, and that's really what got me on this road to creating a national company providing employment to people with disabilities. And I can think of no better, best doctor in America, my doctor, Dr. James Valeriano, welcome to the show.

Thank you, Joyce Bender.

Well, uh, Dr. Valeriano, here's what happens. People always ask me, they'll say, wow, that listener was great, but tell us, we don't know anything about the person. So I always ask our guests to tell a little bit about them, such as where you grew up, where'd you go to school, and why did you decide to become a neurologist, and of course, you're also an epileptologist.

Well, I grew up in Reading, Pennsylvania, which is basically about 50 miles from Philadelphia. I went to— for undergraduate, I went to the University of Pennsylvania in Philadelphia. After that, I went to medical school at the University of Pittsburgh. I did my neurology training at Georgetown University. I came back to Pittsburgh because the people that I rotated through when I did my medical school rotations at Allegheny General Hospital, where I am now, the neurologist there that I rotated. I got to— I met them. They offered me a job after my residency. Actually, after my residency, I also did a year fellowship in epilepsy. But then I came here and sort of helped develop the epilepsy program that we have here. I think the reason I became a neurologist was when in medical school, when you have various things you're introduced to, the thing to me that was the most interesting was how your brain worked. It was more interesting to me, honestly, than how your bowel worked. So I sort of liked that. So it caught— it piqued my interest. And I like the neuroanatomy.. I liked just the whole issue of it. I was always interested a little, had some interest even in psychiatry at one point. And in college, I had an interest in philosophy and things. So just sort of, sort of just neurological things, metaphysical things. I did like that neurology seemed to lend itself to that. And then when I was a resident, and this is a long time ago, one of the complaints about neurologists were that you could diagnose a lot of things, but you couldn't treat a lot of things. So you could tell what people, what was wrong with them, but you couldn't treat it. Epilepsy was one of the things in those days where really you could still do treatments. Now, we didn't have nearly as much treatment in those days as we do now, but there are things— some of the other disciplines in neurology have come a long way. Like now there's a lot more intervention in stroke, there's a lot of new headache medications, there's new medications for myasthenia gravis. Obviously there's a lot of new medications for epilepsy, but when I was starting out, A lot of the— most of those other things really you couldn't treat very much. Epilepsy always lent itself to treatment, and that's what I liked about it.

Well, that is the brain, so amazing. I always think about that. The brain is so amazing. I mean, I always say, oh, well, how can I not believe in God? Because wow. Talk about a computer that is advanced. It's our own artificial intelligence. But I mean, it's just so amazing, you know, how it works. So I see why you would like doing that. So you sort of hinted about something I wanted to ask you about that I thought would be very interesting, even for me to know, let alone our listeners, because many of our listeners maybe have epilepsy or a family member with epilepsy. But just as you mentioned, things have really progressed. What was it like your first year as a neurologist, as referencing working with people with epilepsy? What was it like then?

Well, in those days, again, what medicines were available? In all honesty, it's remarkable looking back. There was really only about 6 or 7 medicines that were available to Antegretol, Depakote had just become available. There were medicines for certain types of epilepsy, F-suxamide, but it really was limited. So it was, again, you could diagnose people and what they had, but your ability to treat it, I mean, it was better than if there weren't any medicines, but it was limited what you could do. I think what, as time goes on though, more than your first year, as you go on, What you do realize, Joyce, is that when people have seizures, what it does to their life over time. I mean, sometimes it's hard to know that the first year. It's hard for people, and you know this, it's hard for people to get employment. It's hard for them to get a driver's license. There's still some stigmata to having epilepsy. So I think the one thing more than the first year, but as time plays out over sort of a time period, you learn really what negative impact seizures can have on people if you can't control their seizures. And one of the things that's been rewarding for me as my career has gone on is that there's more and more ways for us to intervene successfully in treating people's seizures. The newer medications have less side effects than the older medications, less drug interactions, plus there's a lot of different things we can do. So I think when you first start out, your question was how is it when you first start out? I think the first sort of eye-opener that you get is just how much of an impact epilepsy has on the life of people that have epilepsy, especially people that, you know, might seem obvious, especially people that are not well controlled with medicine.

Yeah.

I mean, there's employment issues, there's social issues, there's psychological issues. There's a lot. It's not just the seizure disorder itself. There's all these things that go sometimes called comorbidities or things that go with it that really impact the quality of a person's life above and beyond just having the seizures. Just the anxiety of having seizures, People get withdrawn. It's not uncommon people get depressed, et cetera. Those are all treatable things. And those are things when you take care of somebody with epilepsy, what you want to know is not just how well their seizures are controlled, but how does that impact the rest of their life? Is there anything you can do to help with some of the other issues?

Well, and you know, when medicine wasn't that prevalent, I can't imagine the number of accidents. And I don't mean automobile, I mean just falling down steps or in your house or wherever you are if you're having like a grand mal tonic-clonic seizure. I would think you would've seen that a lot.

Well, the other thing would absolutely— the other thing would happen was that sometimes because there weren't a lot of different medicines, sometimes the idea was, and it was— so there was reasons for it, was that the most important thing was to get seizures controlled, which is true. But sometimes that was done at the expense of overmedicating people. So a lot of people that had— and the drugs in those days really were sedating drugs to a degree. Phenobarbital was still being used, Dilantin, which can be sedating at high doses, Tegretol, which can be sedating at high doses. But the point was, you already have somebody who, let's say, already seemed to be sedated with the medicine, had another seizure, the medicine would be increased. Say, look, we just have to make sure they don't have another seizure, but then the person would be even more sedated. So the quality of life with some of the medicines, really, even if they worked reasonably well, Not to say anything bad about the neurologist in those days, but they really probably overmedicated people with the idea that at least we're keeping them from having seizures. These days, the medicines don't have that quality a lot of times. A lot of times you can get seizure control without overmedicating people. And overmedicating people were— remember, these medicines get in the brain. They wouldn't work if they didn't get in the brain. And so the side effects, a lot of them are things that are neurologic side effects. One of the worst ones, or one of the ones that's fairly common, is things like sedation, memory issues, not so much confusion, but sedation. So you're always trying to walk a fine line of balance between seizure control, but getting seizure control without affecting people's quality of life because of side effects.

Now, before medication, what were people doing?

Well, the first medications, believe it or not, came out probably in the 1880s, 1890s. And the first was bromides. It was actually like iodine bromide, which was a very sedating medication. The first medication that really was used, that was specifically made for epilepsy, was phenobarbital. That's back in like the 1900s, 1910, 1915, that era. Before that, there were no medications. And before that, it wasn't really uncommon for people to actually die from seizures. I think George Washington had a child that died with seizures. I mean, historical figures, Alexander the Great died with a seizure. So if people had repetitive seizures, they died from the seizures. You couldn't stop them. So the mortality rate was very high before the medications. There really wasn't anything else until they came around. Like I said, the bromides were the first really advanced, and it was better than nothing. And then the phenobarbital worked. And as time went on, Pharmaceutical companies came around and tried to develop medications for epilepsy. Dilantin was the first medicine that was really engineered for epilepsy, phenytoin. That was made in the 1930s by a guy named Euston Merritt, and he based the molecule on phenobarbital. So they knew phenobarbital works. The molecule of Dilantin is very similar to phenobarbital. So that's why Dilantin can be sedating. And if you're allergic to Dilantin, there's about a 40% chance you're allergic to phenobarbital and vice versa. But as time went on, they realized this wasn't wasn't enough. So more and more compounds were developed specifically for epilepsy, went through animal trials, you know, those type of things.

Yeah, well, thank God that they came up with this medication. But you talked about something, stigma. Now, you and I both know that stigma is terrible toward people with epilepsy. And I have ideas why that is. But you know, when I grew up, I grew up in a rural area. One blacktop road in front of our house, and across the road lived this family, and they weren't that well off. And they had, um, uh, the mother at the household had epilepsy. No one in my neighborhood would talk about this. I mean, I'm outside one day and I see her in the front yard having a seizure. And when I even asked my family, it was like, "Yeah, don't talk about this." Of course, little did they know that it was going to become me. But why do you think that is? Why do you think there is such a stigma toward epilepsy?

I think, I mean, if you see people that have a generalized seizure, tonic-clonic seizure, it is very dramatic. And I think this goes back to really centuries where the idea of demonic possession or some type of spiritual bad spiritual, uh, infesting the person or, or inhabiting the person. And, um, I think that had a lot to do with it, um, the idea again of demonic possession, bad spirit possession, um, just that there was— then again, unfortunately, if you know, again, Joyce, if you look at people, the whole gamut of people that have epilepsy, a lot of people have epilepsy— not all of them, or not even most of them— but have epilepsy along with some other brain injury. The brain injury is what causes the epilepsy. So a lot of the people, especially in, in times when people weren't enlightened So people were different. They were slower cognitively, they were slower to speak, and they also had epilepsy. The idea was that there was something wrong with these people. People with epilepsy, there's something wrong with them because they have other issues. Even to the point, and I know, I don't think there's any more, you probably know, laws on the books, but there were laws in the books probably into the 1930s and '40s where people with epilepsy weren't supposed to get married. They didn't want people with epilepsy to reproduce like it was some kind of real disease that you were going to pass on. So a lot of it was superstition, it was poor education, it was bias. And so a lot of that took a lot of time to wear off. Also, just as you said, I think what people don't realize is people that go to work, they may work next to somebody that had epilepsy. They never knew it. They never knew that person had epilepsy. If they knew that and said, "Geez, this person's just like anyone else." If people realize how many people had epilepsy, how many people they interact with that are quote, normal people have normal lives, normal families, etc., it would take away some of the stigma. So I think it's like anything, the more you're exposed to different people you think are different, the more you realize they're not different, those prejudices can go away.

Yeah, yeah, that's right. I always tell companies that if they say, oh, I'm so glad you're here, Joyce Bender, now we can hire people with disabilities, I say, oh, but you already have. Yeah, they're working here right now. They have epilepsy, MS, depression, bipolar disorder, PTSD, cancer. I mean, it's just, you don't know. You don't know. They're not apparent, so you don't know, which means they're your friends, colleagues, and some of the top performers right here at your company. But I think with epilepsy, I think the biggest thing is the convulsion. I mean, that people get these weird things in their mind. But I can say to someone, um, I'm doing great now, but I did have— oh, thank God I went to the doctor. I didn't know I had a, uh, a, uh, one of my arteries was clogged, and now everything's fine. And they'll say Oh, that's good. Well, thank God everything's fine. That's heart disease. Yeah. But if I say, well, yes, you know, I have epilepsy, 70% of the time people say, oh, I didn't know.

Yeah, right. No, like I said, it's still, it's still even in this day and age, as you know, it means the— it's still sort of an unenlightenment as far as what the condition is. People still, like you said, if you just 100%, you said, if I have coronary artery disease, geez, that's too bad, but geez, they can treat it, you're going to be fine, etc. But you say you have epilepsy, it's like you told them you have terminal cancer or something like that. Their face drops, it's like some horrible thing. And again, probably two-thirds of the people with epilepsy are 100% controlled. The medicines work very well. And the other third of people, there's different things you can try to still get it that way. So again, this is not a diagnosis that's a horrible— I mean, Believe me, I do understand that people that have bad epilepsy, it's a bad thing. But like you said, there's people, many, many people in mainstream of society that had epilepsy that nobody knows. John Roberts, the Chief Justice of the Supreme Court, has epilepsy and he didn't— he's not done too bad in life.

Yeah, I know. I mean, that, that's like the example. Yeah. I wish he talked about that more.

Yeah, that's what it would be nice if some of the people like that, you know, I don't know if you remember, but Alan Faneca, who played for the Steelers. Oh, yes. Hall of Fame. Allen Fanick had epilepsy since he was in high school, so I knew him. And, you know, he gave talks about it. He went on the show you went on, the radio show you went on. I was on with him several years ago. So it was nice for a guy like that, I mean, a pro athlete, not just a pro athlete, but a guy who's going to be in the Hall of Fame, that he was very forthcoming about his problems with epilepsy. And that's the kind of thing that really does help, that people realize these are normal people. They go on with their lives.

Now we just have to get Justin Fields to talk about it, who also has epilepsy. But Dr. Valeriano, I know a lot of our listeners have questions just about seizures or someone having a seizure. First of all, how long is a seizure? And number 2 is, if someone doesn't know the person, they see them having a seizure, what time should they call? When should they call 911?

Well, usually, Joyce Bender, when people talk about seizures, like, there's different kinds of seizures. So probably what they're talking about most would be convulsions, like you said, where older terminology, grand mal seizure, now sometimes called the generalized tonic-clonic seizure. So that's a seizure which someone will stiffen up, and that's the first thing that happens, they get stiff, then they start to have clonic movements, jerking movements, then they may stiffen up and have jerking, it goes back and forth like that. The normal seizure like that, or I shouldn't say the normal, the average seizure like that lasts The motor part lasts about 90 seconds as a median. If you look at people and ask them how long it lasts, if they're a witness, they'll say 5 to 10 minutes. I mean, it really doesn't— time slows down at that point. If it's something that where you don't know any— if this is someone you don't know, it's out in the street, I would call 911 because you don't know, is this— have they ever had this before? When they have this, they have a second one right after that. Did they get hurt with it? I think if it's a family member, what we tell people is, again, if you've seen this you know, you can call us, call me in the office, and we'll talk about what to do. You don't have to go to the emergency room. But in public, if it's something you, you know, somebody you don't know, it could be the first time they ever had it, but it could mean they're going to have 4 or 5 of these in a row, which could be dangerous. So I think again, it's different if you mean somebody you don't know at all, then I think you do need to call 911. If it's somebody in your family, we tell people if this is something you've seen before and it's no different, they've had seizures before, this looks typical of what they had before, and you're within, you know, relatively comfortable with what this is in the recovery time, you can just let us know and likely we would make some adjustment in the medicine. When people have a convulsive seizure, a grand mal seizure, the seizure itself usually lasts about 90 seconds, probably up to 2 minutes. After that though, people tend to be confused for 10 minutes, 20 minutes, up to half an hour. That's one of the ways When you try to find out if somebody had a seizure, you ask, what were they like after it? If people faint, they tend to get better right away. If somebody just passes out like a syncopal episode, fainting, when they come around, they're back to normal almost immediately. When people have a seizure, it takes them a good 10, 20 minutes where they're still actively confused. The other thing, if you're talking about seizures, I think there was a question was about whether the difference between focal seizures and generalized seizures. Generalized seizures, again, are what you call convulsions, grand mal seizures. Focal seizures means that the seizure starts in a focus. It starts in one part of the brain. How the seizure plays out depends on what part of the brain has been activated. For instance, if your seizure began in the cortex of the brain that controls your right arm, then the seizure would play out with your right arm jerking. You could maintain consciousness during that. You would just have jerking of the right arm. There's also seizures that begin in area of the brain, the temporal lobe, which is a— and this is fairly common type of seizure, and the seizures manifest themselves as confusion. So these are sometimes— the old term was complex partial seizures, the new term is focal onset impaired awareness seizures. So people just get confused. They don't convulse. They just, they tend to keep their eyes open. They don't answer questions. They look around. They just sort of— people will usually say they zoned out. They just look like they're not with it. And during that time, if you talk to them, they won't respond. They may look at you. They They look towards a voice, they may mumble something. And that again, usually lasts about 90 seconds, may take about 2 to 3 to 4 minutes to come out of, but the people won't remember what happened during that time. So there's a loss of awareness. So there's multiple kinds of seizures. Focal seizures, again, means the seizure starts in one part of the brain. Generalized means they have a convulsion. You can have a seizure that starts focally. In other words, they just start with a confusional spell, but it secondarily goes into a generalized tonic-clonic seizure. So seizures can start Seizures can start focally and then spread to a generalized seizure. So the two main parts are main differentiation, focal and generalized, but focal seizures can go into generalized seizures.

And when a person gets an aura and then they have a seizure, but they miss that confusion part and they don't have a convulsion, what would that be?

Auras, years ago, was still— the auras is still the term that's used. So auras tend to be things like You can have the typical ones, or there's a smell. If it's smell, it's a bad smell. More typical auras are things where people have— sometimes they'll say like they're watching a movie of themselves, like a depersonalization feeling, or a déjà vu feeling, like I've done this before, just an out-of-body type of experience. That actually is a small type of seizure. Those sometimes can be called focal onset awareness seizures. They don't lose awareness. Sometimes it'll just stop there, so they can just feel— again, they'll feel like they're out of body, but they're alert during— they know what's going on during that, that could then go on to a seizure where they lose awareness. So it's going from a focal onset awareness to a focal onset impaired awareness. And either of those could go on to a generalized tonic-clonic seizure. So seizures can change. I mean, during the seizure, it can change. Also, what happens is the medicines may change things. So you may have somebody where they have, let's say, the aura, and then they have a convulsion after it. Now they go on medicine, and they can still have the aura, but they don't have the convulsion. The medicine works to stop the convulsion, but it hasn't worked entirely to stop the aura. So there's different how seizures play out, and also it may change how they play out depending on how well or not the medicines work.

Mm-hmm. Makes sense? Yeah, yes. And different medicines could work different ways then?

Yeah, different medicines may affect— so one of them may work better than the other. Some combination may work. Sometimes one of the medicines may work where, again, it doesn't stop the aura, but it stops the convulsion. Sometimes we've had already— what people don't like, and this can happen sometimes, is they have an aura which gives them a warning something's going to happen, and then have a convulsion, but they can prepare for it. Then they get on a medicine that stops the aura but not the convulsion.

Oh no, now they don't have the warning.

They don't have the warning. That's not real common, but that can happen. So again, can play out differently. Hopefully it doesn't play out at all with the medicine, but the medicine, it can make it play out a little different, also make it much milder. So the medicines sometimes don't stop the seizures entirely, but they may make them hopefully less frequent. And when they do occur, not just less frequent, but less severe when they happen.

Yeah, well, that is so interesting to all of us and listeners, including me. We're going to get ready to go to break. We are talking to Dr. James Valeriano, neurologist Just epileptologist and my doctor. How much more could you endorse anyone? He's the best. He's the best. We're going to go to break, commercial break, and then we'll be right back with Dr. James Valeriano. Don't go away. We're coming back.

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Here's Joyce Bender. Hi everyone, welcome back to the show. As we are celebrating National Epilepsy Awareness Month, you know this is personal to me since I live with epilepsy. And as I always tell young people, and I'm not ashamed, and neither should you be. As a matter of fact, what I tell young people, and if you're listening to the show, no matter who you are, I always tell them, when you have a seizure, you have too many neurons firing off. That fits me. I've got firepower, and so do you. So always remember that you've got the firepower. Never, ever, ever be ashamed. I had a question I wanted to ask you, Dr. Vera Lariano, about that Is it called a syncope seizure? Where— yeah, what is that exactly?

It's just a fancy way to say you fainted. So a lot of times, Joyce Bender, when we see people with a question, did they have a seizure because somebody's lost consciousness? And so there's a couple things. So the patient a lot of times may not know exactly what happened. They lost consciousness. So there's a couple things you want to differentiate a syncopal episode from a seizure. So syncopal episode, fainting, syncopal episodes usually have a prodrome. People feel like they're going to pass out. So it's usually under certain circumstances, maybe very hot. They start to get lightheaded, their vision starts to gray out, and then they'll pass out. As I said before, when people pass out with syncope, when they come to, they'll be okay right away. They're back. They can carry on a conversation. They know what they can say, answer, you know, they're oriented to person, place, that kind of thing. When people have a seizure, they're confused. For several— I mean, 10, 20, 30 minutes after that. One of the things that can be confusing though, and where people sometimes are misdiagnosed as epilepsy, there is a condition called convulsive syncope. Maybe that's what you were talking about. Convulsive syncope— when people faint, they faint because their blood pressure drops. They don't get enough blood flow to the brain. That's why they faint. Sometimes when that happens, they can have a brief event that looks a little bit like a seizure. They stiffen up. They just get tonic. So they stiffen up, usually for about 10 or 15 seconds., and then they come back. They come to like somebody who's had a syncopal episode, like someone that's fainted, not like somebody that had a seizure. When people have a seizure, as we talked about in the first half here, this— the motor parts, the— where they're convulsing, usually is about 90 seconds, and they not just stiffen up, but then they start to jerk. So they— it's called a tonic-clonic seizure for a reason. They get tonic, they stiffen up, then they get clonic, which means they jerk, and it lasts about 90 seconds, and then they recover over 10, 20, 30 minutes. When people have syncopal episodes, they recover very quickly. That's true even of convulsive syncope. It's called convulsive because they get a little tonic stiffening. Some people, maybe about 15% of people, when they faint will have a little bit of hypertonicity. Their bodies will stiffen up, but when they come to, they come to just like somebody that said that somebody that had a fainting episode, not a seizure. But that's, that's probably occasionally that gets misdiagnosed as epilepsy. It's not. It's still syncope. It's still fainting.

So they would not take medication then?

No, they wouldn't take medication. They don't lose their driver's license. I mean, there's— it really is not— the issue was fainting, not epilepsy. They didn't have even a single seizure, not just not epilepsy, but they didn't even have a single seizure. They fainted, and when some people faint, they tend to have a little bit of what looks like a seizure, but it's not.

Another question: complex partial seizures. What are some of the symptoms of that?

The current term for— the older term complex partial, again, that's what we call that now focal partial. Focal means it starts in one part of the brain. Simple partial seizures were seizures that did not involve loss of awareness. So somebody could have their arm jerk or their face twitch or just have a bad feeling. Once they start to have a loss of awareness, then that would make it a complex partial seizure. The complex part was the loss of awareness. Now those seizures are called focal impaired awareness seizures. The usual symptoms, I mean, the people just blank again. A lot of times they'll say that it's true zone out. They'll stop doing what they're doing. Usually their eyes will stay open, have kind of a blank stare. They may look around if you talk to them. They may look at you, but they won't respond to you. A lot of times they also have really kind of really basic, sometimes called rudimentary movements. They'll tap their belly, they'll tap on a table, they'll pick something up on a table and rub it between their fingers. They They make little moaning sounds or groaning sounds. Oftentimes they have mouthing movements. They'll smack their lips, they stick their tongue out. As I said, they may have real primitive vocalizations, humming, just repeating the same word over and over. But the key is they've lost awareness. They don't know what's going on during that. And that seizure usually lasts, again, about 90 seconds to 2 minutes, and then they'll be confused maybe for a couple minutes coming out of it. And what has happened during that time, they will not remember it. Now, those seizures can be dangerous over time because, again, they involve your memory area. That's why you don't remember what's going on during it. And if you have too many of those over time, you can start to have permanent memory loss. So, so again, complex partial seizures are very common acquired seizure types in adults. It's not an uncommon one to develop in adulthood. And again, in most ways, it's a lot better than having a convulsion, but it's not a benign type of seizure. Again, those people lose their driver's license. It's, you know, they can— they're not supposed to not be able to employ them. I mean, they're not allowed to do that. There's laws, but, you know, it's still that people get sort of shuffled out of work if that happens. But in the long run, if you can't control those, there can be decline in memory over time.

Yeah, that's not good. That's bad. That's not good at all. And thank God if you're listening to the show, hey, I take Lamictal.. And I haven't had a seizure for years. So just as Dr. Valeriano said, there's a large percentage of people who live with epilepsy and you do not know they live with epilepsy unless, like me, you know, they're telling people. But I tell people because I don't like people living in the shadows or shame. Although, you know, There used to be someplace in Virginia, I don't know if it was the early 1900s, but it was, uh, the Hospital for the Feeble-Minded and Epileptic. So it appears at one time that people thought if you had epilepsy, you also had mental illness. Is that true?

Oh yeah, that's what I'm saying. So the, the— well, again, because unfortunately, it, again, especially in times where people weren't well educated, it wasn't uncommon that the people that had cognitive impairment, that were cognitively impaired. You know, older term, unfortunately, was mental retarded, mental retards. That wasn't uncommon because there was brain injury in those people. That also can lead to epilepsy. So a lot of those people did have epilepsy, and people had the idea, well, if you have epilepsy, you— there's something wrong with you to begin with other than just having the epilepsy. So there were people that had epilepsy because of brain injuries, but there's people that have epilepsy have no brain injury. It's just, it's just, it's an electrical phenomenon. It's just the way their brains wired. It's not anything wrong. They don't have a low IQ. They don't have disability. They're not unable to do other things. So epilepsy can stand alone. It doesn't necessarily mean there's something else the matter with you, which historically, unfortunately, people put that together, that if you had epilepsy, there was also something else wrong with you. You probably did not, you know, you probably did have a low IQ, you had some other disability, which wasn't true.

And you know, You hinted at this earlier, other things cause seizures. So like you could have a stroke.

Right.

And have seizures. You can have traumatic brain injury and have seizures. What about people that they get worried because their comorbidity is depression? Now, does the epilepsy itself medically cause the depression or do they go hand in hand in that case? Or what is the reason for that?

If you look at any chronic disease, so if you look at people that have multiple sclerosis or people that have bad diabetes, let's say, people that have epilepsy, there can be what's called the reactive depression. In other words, people get depressed because of the condition they have. This interferes with their quality of life. It's not uncommon in chronic disease states, especially if they're difficult to control, that people have, if you want to again call this secondary depression, it's the depression secondary to what's the other thing that's wrong with them. However, in epilepsy, there does seem to be people that have really sort of a primary depression. In other words, epilepsy is in part neurochemical. I mean, the brain cells communicate with other cells by electrochemical things. So there's neurotransmitters, there's chemicals in the brain, serotonin, norepinephrine, et cetera. In some people, it does look like there's an imbalance that goes along with the epilepsy. It's not a reaction. It's not a psychological reaction to the epilepsy. But there's a difference. There's some change in their neurotransmitters that the same thing that causes the epilepsy may cause the depression. In other words, depression's not a psychological reaction. It's a neurological fact along with the epilepsy. And that's a primary epilepsy. I mean, it's a primary depression. So there's two different ways people can be depressed with epilepsy. Again, one is just, geez, this is a hard thing to live with and you get depressed. But there's also people where it's actually part and parcel of the epilepsy. It's more of a chemical thing, a neurochemical thing, the depression that goes along with the epilepsy itself. So it can be either one. But epilepsy, unfortunately, depression's not uncommon with epilepsy. And again, as you would expect, the harder it is to control for people, the more chance they would get depressed. The other thing to watch for, Joyce Bender, since we brought it up, and this is for the physicians, is that some of the medicines can make people depressed. So sometimes you say, oh geez, they're depressed because they have epilepsy. But you got to be careful that the medicine you're giving them is not causing depression, because all the medicines, almost all the seizure medicines, have some ability— doesn't mean they happen all the time— or but have some ability to cause depression. So again, sometimes it's hard to sort that out. Is somebody depressed because they have seizures, or somebody depressed because the medicines are making them worse? So that's something, again, you have to— if you're depressed, the other thing for the patients, I'll tell them, Don't just when you see the doctor, the neurologist or the doctor you see, report on your seizures, report on your quality of life. Are you depressed from this? Is it slowing up your thinking abilities? Some of the medicines seem to have some of the ability to make it hard for people to express themselves verbally. There's language problems with it. So you want to report to the physician not just your seizure control, but is there anything else that's been affected by the epilepsy or by the medicine? That's impacting in a negative way your quality of life.

Yeah. Oh, that's good. That's good to tell people because, you know, people wouldn't think to tell all of that, but it's all connected and your doctor can help you.

They just chalk it off to the epilepsy. Say, "Oh, well, geez, what can they do about it? This is part of my epilepsy, my depression or whatever." It may not be. It may be the medicines. There may be something you can do. Sometimes, I mean, you don't like to do this, but let's say you have a medicine that nothing else worked. Now this medicine works, but it makes somebody a little bit depressed. Depressed, there may be a medicine you can give them for that. You don't like to treat a medicine side effect with another medicine, but sometimes that's what you do if the original medicine worked, or you switch medicines. I'm just saying it's important for the patient to tell the doctor everything that's different since they've been on the medicine and since they have epilepsy. It's not just seizure control, it's how's the whole affair, the medicine, the seizures, etc., how's it affecting your quality of life?

Yeah, well, that's, that's sometimes people don't want to tell doctors that much information and they're afraid. And I always tell them, well, if you don't, you're not giving the doctor the full picture. The doctor can't help you if they don't have the full picture. So that's— I'm glad you brought that up. Well, Dr. Valeriano, this next subject is certainly not something that anyone likes to talk about. But as you know, I was the national chair of the Epilepsy Foundation. Now I'm so proud to be the chair of the board of the local epilepsy association. And it is chaired by Peggy Beam, who is just such an awesome person. But I wanted to ask you, People do not talk about SUDEP a lot, but when I was on that national board, no one did. I don't really— I mean, it was just not talked about. And then this one board member would say, we need to talk about this, and it was just sort of, you know, shushed away. But now they are talking about it. Why Why did neurologists not want to talk about that?

I think the biggest reason, Joyce, probably was, you know, you sit down with somebody and talk about their epilepsy, especially people that are new onset epilepsy, and you appropriately sell your time. This doesn't mean your life has to change dramatically. This is something, you know, we can treat. Don't look at this as something catastrophic. And then in the same breath you say, oh, by the way, you know, this is something that you can die from. So SUDEP is forever sudden unexplained death in epilepsy. SUDEP occurs almost exclusively in sleep. So there's something about being asleep. It may be that you don't— after a seizure, your respirations are suppressed and you don't start breathing again. Maybe sort and simple. One thing we certainly tell people, they should not— with epilepsy, they shouldn't sleep lying on their stomach because we think what happens to some people, they may have a seizure, then they just sort of collapse into the pillow and suffocate. That's probably not the main cause of SUDEP, but I mean, that's one thing you can watch. But anyway, there are definitely people— if you looked at that in general, SUDEP occurs 1 per 1,000 patient years. So in other words, if you look at 100 patients that live 10 years, that's, that's 1,000 patient years, or 1,000 patients over 1 year is 1,000 patient years. So SUDEP occurs once per 1,000 patient years. However, if you look at some of these people that have— there's, there's things that increase your risk factor. So people that have nocturnal seizures, people that— so seizures in sleep, people that have generalized seizures, especially people that have generalized seizures in sleep, people that are poorly controlled, that may raise it up to either 5, even like 5 or 7 per 1,000 patient years. So there is a high-risk group of people for SUDEP, and that's people again that have nocturnal generalized seizures. It's very unlikely somebody with complex partial seizures seizures during the day only is going to have SUDEP. That doesn't mean you don't treat them, but I'm saying that's not the group that this is likely to happen to. It's generalized, it's grand mal seizures in sleep, especially if they're poorly controlled. So that's because sometimes in the older days, before we really talked about SUDEP, somebody'd say, oh look, it's better to have a seizure when you're asleep because you're not going to get hurt, you're not walking down the street in the middle of the day and get hurt. Actually, it's not that good to have seizures in sleep. I mean, That's a dangerous thing. So it's something you really want to make sure— not that you don't try to control everybody, but that's really a group you want to be very careful with. Nocturnal generalized seizures. There's devices that people can wear. There's wristwatches that are kind of movement disorder or movement detectors. So if somebody has a rapid movement, like with their— like they would have if their arm was jerking with a seizure, an alarm would be set off. So there's way— there's, there's movement— there's mattresses that can done again that detect rapid movements, and an alarm bell would go off like that. So there's things you do to try to protect from that. The main thing though is to try to be compliant with your medicine and that the doctor knows that you're having those seizures, because they— he or she can't treat them if they don't know they're occurring. So we— I don't usually tell people the first time I see, in all honesty, about SUDEP. It's sort of a debate around neurologists, should you tell them, But if I have anybody who I think is at all high risk, I absolutely will bring it up and not to scare them, but a little bit to tell them, you know, this is— it really is important to take these medicines. This is not anything— this— there's a danger here if you don't take the medicine.

And also if you drink a lot of alcohol, correct?

Yeah. If you drink a lot of alcohol and have— you can sort of withdraw from the alcohol as time— or alcohol is also a sedative too. So if you have somebody who already has a respiratory depressant on board like alcohol, Now they have a seizure, which often depresses respiration. They already have a chemical on board, alcohol, that makes that further. Yes, it can increase the risk of SUDEP.

Well, Dr. Valeriano, everyone wants to see a cure for epilepsy. Do you think we will see that in our lifetime? I mean, it's not like it hasn't been around a long time. We know it's been around since biblical days. What do you think? Do you think that's possible?

I think what would mean— there are people that are cured. There's people that are cured with surgeries. In other words, people that have focal seizures, partial seizures, if you can find what part of the brain the seizures come from, that area can be removed potentially surgically. These days it can also be lasered with a laser beam basically to literally burn that area. So there are surgical cures. There's also, if you wanted to call it medical cures, there's people that are seizure-free on medicine. But the problem, Joyce Bender, for an overall cure with epilepsy is there's so many different things that cause epilepsy. Like you said, what if you have a stroke and have epilepsy? Is that different than somebody that had a head injury that has epilepsy? Somebody that had meningitis and has epilepsy? Somebody that has epilepsy, we don't know why. So there's a lot of causes of epilepsy and they may not all be the same, how the brain cells, why they generate seizures. So I don't know. I don't think in in our lifetime you're going to see a cure for everybody with epilepsy. Probably as time goes on in the very, I don't know how distant, I mean, things move rapidly. Probably the biggest thing may be in some genetic research is, are people genetically predisposed to epilepsy? Are there people where you could say because of these genes and because of this predisposition, this medicine may work better in that person? Who knows? I mean, how far are we from where you can have gene replacement therapy, that type of thing? That's, I think, where you would have to, but that's a ways away. But just again, if your seizures are not controlled, I'm not trying to do an advertisement here, but if your seizures are not controlled, it really behooves you to see somebody who specializes in epilepsy because there really are things available now that weren't available even 10, 15 years ago, treatments.

Well, I can't help it. I have to say it. And if you have access to Western Pennsylvania, it's Dr. James Valeriano at Allegheny Health Network. I would recommend him to anyone. Look at me. I haven't— not only have I not had seizures for years, but I am very energetic. So, you know, you have me on the right track, that's for sure.

Joyce, you're a ball of fire.

Yeah, I told you I've got that firepower. I told you that. And you know, I'm also the example that it doesn't have to stop you. Now, if I didn't take my medication, yes, I would have a seizure because anytime, like when I was weaned off to go to Lamictal from Dilantin, I did start to have seizure activity. But I do take my medication and I feel if you take your medication, live your life right health-wise and go to the doctor, because if you're still having these, you know, you can have that therapeutic blood test and find out what's going on.

But Joyce Bender, you're a perfect example, a good example that not only do the medicines work for you, which is obviously important, but they don't interfere with your quality of life. Your energy level is good. I mean, you know, you're a very successful person, you're a very energetic person, you help all these other people. So the idea again was get out before is you want to not just— the idea if you're the physician is not just to have the seizures controlled, which is obviously what you really want to do, but also do it without overmedicating people. So it's a medicine they tolerate and can go on with their business. And like you said, if you never told anybody you had seizures, how would anybody know you had epilepsy? Nobody would know. And just like you said, As I said before, people are working next to people in the workplace that have epilepsy and they don't know it. And we hope the more people realize that, that some of the stigma goes away.

So if you're a company listening to the show, you're hearing from one of the most prestigious doctors, a person can work. Okay, look at me, you can work. You should employ people with epilepsy because guess what? You already have. They're working for you right now. You just don't know it. And if you're a young person living with epilepsy, don't be ashamed ever. And if you're a parent, please don't do this one thing. And I have seen so many parents do this. They'll tell their child, "Shh, don't tell anyone. Don't tell anyone you have this." But see, what you don't realize is you're saying there's something wrong with you. You know, there is something you need to hide, you need to be ashamed of, but you don't need to be ashamed. You should never be ashamed. And one more time, my favorite, Dr. James Valeriano, right at Allegheny Health Network. And I know when you tell Dr. Whiting about this show, he's going to say, oh, I know now, you definitely pay her. But he doesn't. He's my doctor. I love him. And with everything you do.

So now I told them, Joyce Bender, I don't pay you. You just know what you're talking about. I tell them.

Well, that's good. Okay. Well, I can't believe you brought up Alan Fanica because we end every, every show with a quote. And he said, Epilepsy, this is not terrible. We all have things in life that are terrible. But remember, everything you want is on the other side of hard. It may take time. It may take effort. But you can be whatever you want, even an NFL star, said Alan Faneca. Well, I'll talk to everyone next week. As we're getting ready for Thanksgiving, and in the words of Mary Brooker, when you go out today, remember, choose joy. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.