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About one in every 100 people in the US are living with epilepsy.
It's a condition that most people have heard of but don't really understand.
And the way it's portrayed in the media often adds to the confusion.
Generalized shaking, generalized stiffness, tonn biting, you know falling to the ground.
And again, what I call Hollywood seizures things that people typically do on TV or movies.
On today's health show, we have a program long conversation about epilepsy
with a pair of doctors who specialize in the detection and treatment of people living with the condition.
Dr. Nina Sacks is away this week. I'm Bob Barrett.
And this is the health show.
Over 2 million people in the United States are living with epilepsy.
And unless they were in the middle of a seizure, chances are you couldn't pick out a single one of them.
The word epilepsy is derived from the Greek word for attack.
People once thought that those with epilepsy were being visited by demons or gods.
However, in 400 BC, the early physician Hippocrity suggested that epilepsy was a disorder of the brain.
And today, of course, we know that he was right.
Here to talk about epilepsy or a pair of doctors who specialize in the condition at Albany Medical Center Hospital here in Albany, New York.
Dr. Timothy Lynch is an assistant professor of neurology.
And Dr. Matthew Adamo is an assistant professor of pediatrics and neurosurgery at Albany Med.
And Dr. Lynch, let's start with you by getting basic.
What would a patient have to show you for you to say, hey, that's epilepsy?
That's a great question.
Because usually it's not what they show us. It's usually what they tell us.
Because it's an intermittent illness. So they are almost never actually doing it in the office.
But the easiest way to describe epilepsy is to say it's a collection of seizures, two or more seizures typically,
or one seizure with predisposition for more, an abnormal MRI, an abnormal EEG.
And people with epilepsy or seizures can have many different types of seizures.
They can have seizures that we're very familiar with, generalize shaking, generalize stiffness, tonbiting,
falling to the ground, again, what I call Hollywood seizures, things that people typically do on TV or movies.
People can just have behavioral arrests where they just stare off into space and are completely unresponsive to people around them.
People can have just funny feelings, repetitive feelings of deja vu.
They can have repetitive episodes of right arm drinking.
But all of these things have in common hypersynchronous or hyperactive abnormal brain rhythm.
In an area of the brain or the entire brain that causes these collection of symptoms,
and the symptoms are based on where in the brain the seizure starts and how it spreads.
Eventually, will all of these things come to a big seizure?
Usually. There are patients I've had who have had just years and years and years of small seizures.
And they never actually get a big grandma seizure.
But usually patients either present because they eventually did have the big seizure.
Or their seizures become more frequent.
Instead of one every several months, they start going to every several weeks to once a week, to multiple times a week.
But typically, if unprotected meaning they're not appropriately treated or medicated,
they usually do progress and become more severe and usually end up in a grandmaller tonic chronic seizure.
How widespread is this? Is this something that we're recognizing a lot more now?
It depends on how you diagnose it. So in the past, people diagnosed epilepsy is two or more unprovoked seizures,
meaning you're otherwise doing well and you weren't just hit on the head with a baseball bat, for example,
or you didn't just get them and enjoy this.
But a lot of people will put a number that 1% of the population has seizures and epilepsy.
Now, if you define it again as one seizure with a predisposition to more,
I think the numbers go up to about 10%.
I think people are recognizing it pretty well as to what seizures are.
In fact, I think people err perhaps appropriately so on overestimating or at least over diagnosing.
Patients may have things that look like seizures that aren't.
But I think that's important because that way they can be seen and evaluated and then ruled in or out by a specialist
as opposed to under calling it and then not getting people appropriate treatment.
How is the understanding of just what's going on changed over the years?
I'm sure it started out as evil spirits and it's progressed to something a little more scientific.
Back in the day, I had a patient once who's grandmother, this maybe only been 10 years ago,
whose grandmother thinks he just needed an exorcist and that this he was just possessed by the devil.
And that's probably one of the problems they had in the Salem Witch Trials or girls with epilepsy.
But I think people are understanding to the degree that we can, I know that sounds like a vague answer,
what epilepsy is, is this abnormal brain rhythm.
But we're still very in the dark about why this rhythm is even starting.
I mean, we do know that the brain is irritable, it's injured, and that is why these abnormal rhythms are coming out.
But for example, in someone who has epilepsy, why did they not seize today?
And they are going to seize tomorrow or they seize two weeks ago, but not three weeks ago.
Why an individual seizure starts?
We don't even know that.
Or we're just learning now that what used to look like a spreading fire of seizure activity in the brain is much more complex.
There's the fire, but then there's all the neurons and nerve cells around the fire that's trying to put it out.
And we just now were learning the difference between cells that are actively involved in the seizure and cells that are actually trying to stop the seizure.
So we still don't know a lot.
Is family history any kind of component in this?
If you have relatives that have it, you have to keep a pretty good eye on yourself.
It certainly is a risk factor when someone comes and wants to be evaluated for seizures or epilepsy, we ask various questions to have they had federal seizures.
Have they had significant brain injury, not just concussions, but comb of nerves, things that required neurosurgical intervention.
I'm going to stop you for a second there.
Fabriol seizures. What are we talking about there?
So there's a typical federal seizure, which is a very limited generalized shaking in infant or toddler with high fever, not 99.3, but one for type of thing.
But it's very self limited. It's a very quick seizure. It might be a minute of generalizing shaking.
Afterwards, the baby is happy and playful. No problem.
Those usually do not go on to have epilepsy, meaning seizures outside of the fever or seizures when they're an adult.
But it is a risk factor. Some patients will go on later to develop epilepsy and adult.
And the question is always what's the underlying cause.
You know, patients who have had a federal seizure because they have an underlying brain abnormality are going to have epilepsy later on in life.
They just happen to have their first seizure with a fever when their body was stressed.
In fact, we talked about family history. There's a genetic predisposition where family members are known to have federal seizures.
So those are actually good to hear because we know the family predisposition is that they have federal seizures.
And then the predisposition is they outgrow it and don't have epilepsy. So they tie them together.
Is there any rhyme or reason as to when this starts presenting in somebody? I mean, there's no real age where you can say, well, here, so you've got to watch out for epilepsy.
There is. And that's something we know a little bit about, but not enough about.
So there are certain epilepsy syndromes that are very age dependent. So for example, infantile spasms occur in infants, obviously.
Juvenile myoclonic epilepsy occurs in typically in juveniles, they were appropriately named.
However, there's certainly exceptions to roll-out patients with GMU of others for seizure in their 40s.
But basically, I think it depends again what the underlying problem is and what stage of development the brain is in.
So adults will never have what looks like an infantile spasm and an infant because their brain is a certain maturation level.
For the same reason, someone who may have a genetic predisposition to have seizures will typically begin, for example, absentech will up to eight age seven.
Well, if it's genetic, why didn't they see this from day one? And it's just that their brain hasn't matured to the have the ability to have that type of seizure given that abnormality.
A lot of depends.
And then there's some that can be caused by injury.
Certainly. And again, we talk about things that kind of run all together with patients.
All of them have an abnormal predisposition to seizures. Their brain is irritable for lack of a better word.
And it can be irritable because it's injured from a tumor. It can be irritable because it's injured from a hemorrhage or blood that's irritating the brain.
It can be injured because they have a genetic predisposition so that one of the electrolyte channels, for example, a sodium channel in their cells is not quite functioning and puts them at risk for having seizures.
So many different reasons, certainly trauma or is one of them.
Well, let's talk about treatment. You somebody you know this is you have a patient there, someone with epilepsy, they've just been diagnosed. What's the first step?
So the first step is if you know they have epilepsy or at least pretty sure that they have epilepsy such that you want to start treatment.
The first treatment is always a medication. There are many medications out there. We typically break them down right now into older generation medications,
Dilanton, phenobarbital, depycotechritol, because they've been one they've been around longer but almost more importantly, they have more side effects.
You have to drug blood work to check liver enzymes. They tend to make people feel more tired, sleepy, have more cognitive effects, more drug drug interactions, and the newer medications.
The capros, lemictos, topomax, onigran, there's a whole lot of them and yet even more that are coming out.
And those tend to be better because they tend to have less side effects. They tend to be less sedating. They tend to have less drug drug interactions.
You typically don't have to do blood monitoring for these medications. Now, which one you pick partly depends on what type of epilepsy they have, although a lot of medications can be used for any type.
Unfortunately, or fortunately, I guess none of the medications tend to be any better or weaker. It actually controlling the seizures. All of the medications across a population of people are equally effective.
That being said, one individual person may respond better to one medication than another, but unfortunately that becomes a trial and error.
So for an individual patient, you try to find, again, one of the newer generation medications because they tend to be tolerated better.
And if they have any other problem, you try to get things that might go well together. So for example, if they have migraines as well, you might use a medication like topomax, or sonogram, which can also be used for migraines.
If there are a lot of medications, you might use a medication that has virtually no drug drug interactions.
So those are the kind of things we look at. But again, at the end of the day, it's a bit of a trial and error.
And I'm sure it starts off with, you know, what doctors had great success with this medication, with this patient, he's going to start there.
Absolutely. You get comfortable with a certain side of drugs you use. And certainly most physicians tend to start with things they learned about in residency because that's the things they've been guided with.
If the medications aren't working, and how can you tell them, if you're just saying, you know what, the meds aren't working. What has to happen for you to do this?
So the simplest answers, they're still having seizures. So it's, you don't tell the patient they tell you, I'm, you know, had a seizure on this date or I'm still having seizures.
Or sometimes they're, they're seizure-free, but they have intolerable side effects.
And typically if they've failed to or obviously more medications, we call them medically refractory, meaning they're, they're extremely unlikely to be cured, so to speak, meaning they're not going to have any seizures just with medications alone.
And that number is actually very low. So if you failed to normal medications, your odds of being completely seizure-free just with medications falls below 5%. And then we look for other treatment modalities.
Are there are the numbers of treatment of seizures that are like acceptable? So well, if you have one a year, the meds are working.
It depends on the patient. By and large, we want no seizures period. So we usually say if someone has gone a year without seizures, that they are seizure-free.
Even one a year is too many because frankly, you're not going to be driving. And we often look at it as what can get someone back behind the wheel of the car and driving.
So we look for zero seizures. That being said, if someone has significant cognitive deficits and they couldn't be driving anyway, and you know, it's just really not, or really minimally affecting their life, we would, we couldn't be less aggressive in treatment because we don't want the cure to be worse than the disease.
Still to come, our special conversation on epilepsy continues with a look at what to do with medications aren't working. That's next on the health show.
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This is the health show. I'm Bob Barrett. We're spending the entire program today talking about epilepsy. Our guests are Dr. Timothy Lynch, an assistant professor of neurology and Dr. Matthew Adama, an assistant professor of pediatrics and neurosurgery at Albany Medical Center here in Albany, New York.
We're talking with Dr. Lynch about the medications used to treat epilepsy. The next topic, so the meds aren't working. Now what?
The next step is simply bringing someone into the hospital for long-term video EEG monitoring to determine one if they're having epilepsy. A lot of patients are being treated for epilepsy and the reason the medications aren't working is because they don't have epilepsy.
If they do have epilepsy, then we have other treatments usually in a surgical nature for those patients. A quick aside here, what else could it be?
Actually, the most common thing we see are psychological events that look like seizures. There's a number of terms for this. Sudocesures, non-apocalyptic events, non-apocalyptic behavioral events, stress seizures.
But basically, things that look like epileptic seizures fall into the ground shaking, staring off, being unresponsive, focal shaking, any of the above that look just like epileptic seizures, but the brain waves are completely normal during this time.
That's probably the most common reason someone has events that look like seizures. Probably number two might be a syncopy or fainting. People can drop their blood pressure just like any normal faint.
Typically, people, when they faint, they fall to the ground and are still and get right back up, but some people, depending how long they're down for or how long the blood is not getting to the brain, they can have all kinds of jerking motions that people mistake for seizures. They can lose urine. They can bite their tongue. All kinds of things that can be confusing.
In fact, just this past week alone, I saw two patients go for what's called tilt table testing to assess for syncopy. One was sent to me for a question of seizures, and the other had already been treated by someone else for four years with seizure medication.
It didn't sound like seizure to me, so I sent them in and lo and behold, they have syncopy, diabetes, people who drop their blood sugar can lose consciousness and have events that look like seizures. So lots of different things.
You bring somebody in for observation. What's done there? So we have at Albany Med, we have a six by monitoring unit where patients come in. They have an EEG hooked up to their head. So a bunch of electrodes that are put on their head. Typically, this is an outpatient process where someone has, it looks at the rain waves for about 20 minutes, 30 minutes. But in this case, we bring them in and we look for 24 hours multiple days in a row, depending on how long we have to look. If they're on seizure medications, we quickly wean them off to try to induce seizures because we want to see if they're having a seizure.
What type of seizure it is? Where is it coming from? Or if they're not having seizures, what are they having? Are they having syncopy? Are they having pseudo seizures? Because ultimately you have to treat the underlying problem.
This is the one time you actually want somebody to have a seizure. In fact, it's funny. Most of the time we bring people to the hospital to get better. In our unit, we bring them to the hospital to break some eggs to make an omelet. They'll say, oh, I had an awful night's sleep last night. And most of the time in the hospital, it's like, oh, that's too bad. We went to a good night's sleep. But we're actually happy.
When someone has a bad night's sleep because their system is stressed and they're more likely to have a seizure.
So, okay, the medications aren't working. And I guess at this point, we start talking about surgery. And Dr. Rodomo, this is your specialty that we're getting into now.
Surgery for epilepsy, something I'm sure not many people are familiar with. Where do we go from here?
And you mentioned that this is not that well done to many people. One reason is that in the past, people would go many, many years on many medications before I've been thinking about surgery as an option because it was thought to be a last resort type treatment.
But what we're finding out now is that the earlier intervene is actually better because there is that period of time where those medications have bedside effects, the seizures themselves over time can have bedside effects.
Ideally, if there is any question of any surgical intervention, that decision was made earlier on, like Dr. Lynch mentioned, once you're considered intractable, that's time to think about surgery.
But as far as the different operations that are available, it's always tailored to each patient's specific epilepsy and where their seizures are coming from.
But in general terms, we either do brain operations where we take out part of the brain or a lesion in the brain or we do a stimulator kind of operation.
When it comes to the brain surgeries, the variant invasiveness from very tiny, very focal resections, it's actually taking a half of a child's brain if they have catastrophic epilepsy.
So in the best cases, we have a nice localized EEG. We have an MRI that may or may not show an abnormality, but we know we're at least localized to one half of the brain.
Then we do a series of different testing from the neural duty team, we do a neuropsychiatric testing.
We may even do what's called a water test to assess the size of the brain, what language is on, and the memory function is on, because the location of the seizures may interfere with those structures if we were to go after them.
If a patient meets all the criteria that they're safe for an operation, then we think about what they specifically need.
As I mentioned, the operation can be a very small section of a couple of centimeters of brain. It can be a whole lobe, a whole temporal lobe or frontal lobe.
It can be as cold as the corpse calisthenum. I just put the brain into two separate halves, or it can be actually taken out one half of the brain called the hemispheric to me.
You understand, there are tons of people listening right now going, aw, aw.
All these things sound very scary, but the point is we only put patients into the surgical arm of treatment if they have an epilepsy that we think is the right kind to go after a surgery.
There are some cases where the EEG may be kind of inconclusive. Maybe there's something on both sides of the brain. I mean, it may be what's called a strip survey, or we actually put wires on the brain on both sides to see if one side really is the first versus both sides happy at the same time.
And then that person then maybe can accommodate for the receptive surgery.
But the point is we want to make sure that these people are worked up fully before they get into that position at all.
And then once they're there, most of these are two stage operations where we do the first stage by placing grids on the brain.
We then close everything up. They go back up to the monitoring unit for a series of days to hopefully capture more seizures.
And then once we have seizures, we then map the brain, map the speech, language, motor, all things that are important in the vicinity of the seizure.
Rarely a person has a seizure right in their language area. So if they're an adult, you really can't take it out.
Children, especially young children, can tolerate much more aggressive resections and recover function because their brain is still growing, still developing.
So if I say take a half of someone's brain, that sounds crazy, but actually any young, very young child.
That child is expected to be able to walk and use their arm at some point in life, you're only missing half of their brain.
So they will recover a lot of the function that we take out.
For most adults, we really try to do more tailored resections, more smaller areas or keep it within one lobe.
Wherever we can do to minimize any deficits after surgery, any collateral damage.
I'm sure there has to be some in almost any operation though.
There are certain things that always mention to patients potential risks of problems with visual fields, problems with word-finding difficulty, problem with memory.
The important thing is that when it comes to time of resection, we can make a prediction based on how much we think what success we can achieve with this particular operation.
But we know that even in the best situation, there is a chance that either one, I can't call it tissue out because the main part of that epilepsy is in one lobe,
but then a portion goes into the language area of the brains. We leave part behind on purpose.
Or we see that there's multiple areas of abnormality on the EEG, but one is the clearly dominant generator of the epilepsy.
We go after that. But then maybe in the future, that second or third focus may become a problem that requires second operation.
But in general, we give patients a very good sense of what the success would be for that given operation.
In general terms, the most success comes from case where there's a lesion, first with the brain tumor, a vast amount of information they can take out.
Incidentally enough though, even with a brain tumor, vast amount of information, there may be tissue around a lesion that looks normal, but that's actually epilepsy generating tissue. We should come out with that lesion.
So if a brain tumor comes out of person as epilepsy, after that, there's a practice that wasn't gotten out, that wasn't tumor, but it was just abnormal tissue around the tumor.
In a perfect situation, unlike the medications where you have to be on the medication and you're never really cured, you just control this, and if it all works out right, you're cured.
There's a chance for a cure, but again, it's tough to sell a person, we're going to definitely cure epilepsy.
We'd give him numbers more like say 80, 90% depending on the situation, even less for certain epilepsy.
You know, frontal lobes seizures, maybe 50, 60% depending on how many full side there are, if it's very complicated.
If someone's posttraumatic severe brain injury with numerous scarred areas and abnormalities on the MRI scan and different areas that the brain's atrophy or kind of struggling, the success rate will be lower, because there's so much potential damage that's already been caused by their trauma.
We go and take a small area out, it's all that remaining damage tissue that may now become a seizure focus.
I think something that's important to point out, I think maybe you alluded to a little bit on your question, is that when this surgery is performed, the patients stand their medications at least initially, a full doses of all their medications at least initially, because like Dr. Andamo says, we don't really know, because unfortunately the brain's not labeled for us, that we got the whole epileptic focus.
We may have just gotten enough so that the seizure medications now work 100%. And even then we don't know, you know, if they come in on two meds, do they need two meds, do they need one med? Maybe we did in fact cure them.
And so that decision making is again another long term process, typically for the first year, we as long as they're feeling well, we don't touch their medications.
It sounds like you're just starting from scratch.
Right. And then depending on how they're doing, it's a little bit up to the patient. You know, the patient may say, boy, this is the first time in 20 years, I've gone a year without a seizure.
I don't want to touch my medications and you know, others want them off as fast as they can. Finally, is there anything new on the horizon that you're looking forward to?
I was like, oh, I can't wait till this is perfect. It goes then we'll be able to do this.
There's always everything new. There's always new drugs that are coming down the line. I'm always a little skeptical in terms of the next best thing, because it just seems that every drug that comes out, I think for a very small percentage of people, it will be the next best thing.
In terms of a cure all for everyone, I don't really see that, but it's always another option. It's always another something that someone needs to simply tolerate better.
So that's always new. There's always other procedures people from a surgical standpoint. There is some work on deep brain stimulation.
So, you know, placing a small electrode into the brain, much less traumatic, much less invasive. And there are trials going on and some individualized cases being reported.
I think the goal is to be as little invasive as possible. And if that ends up being the way things are going, then that's just better for patients that can tolerate the operations better.
They also may have less fear of having an operation because it's not going to require a big resection of brain tissue, which would be a wire being placed in the brain.
Dr. Timothy Lynch is an assistant professor of neurology. And Dr. Matthew Adamo is an assistant professor of pediatrics and neurosurgery at Albany Medical Center Hospital in Albany, New York.
That's all the time we have for this week's health show. If you'd like to listen again, join us online at healthshow.org.
You can explore the archive for any programs you might have missed or would like to hear again, even subscribe to our podcast.
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Our email address is letters at healthshow.org. Dr. Nina Sacks will be back with us next week. I'm Bob Barrett. Till then, stay healthy and be sure to join us next time for another edition of the health show.
Dr. Nina Sacks is a practicing member of the American College of Gastroenterology. Bob Barrett is producer of the health show. Dr. Alan Shartock is executive producer.
The health show is a presentation of national productions, which is solely responsible for its content.
The health show is a presentation of national productions, which is also responsible for its content.
The health show is a presentation of national productions, which is also responsible for its content.
The health show is a presentation of national productions, which is also responsible for its content.
The health show is a presentation of national productions, which is also responsible for its content.
The health show is a presentation of national productions, which is also responsible for its content.
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