Speaker 1: My name is Louise.
Speaker 2: I live in Johannesburg, South Africa, originally from Kapta. In
Speaker 2: roughly early two thousand and four, I started having what
Speaker 2: seemed like I would blank out, basically, so I could.
Speaker 1: Be doing anything.
Speaker 2: I might be in the middle of a sentence and
Speaker 2: I would just kind of stop, so it would seem
Speaker 2: like I was conscious. My eyes would be open, but
Speaker 2: I would essentially be unconscious. I did not know what
Speaker 2: this was At first, I didn't particularly seem to bother me,
Speaker 2: but it started happening more and more. Sometimes it was
Speaker 2: accompanied by what I would now describe as an aura,
Speaker 2: so sort of a strange sensation almost physically inside my brain.
Speaker 2: It felt like having an electric shock inside my brain.
Speaker 2: For a while, we didn't do much about this. I
Speaker 2: was about sixteen at the time, and my mother was
Speaker 2: of the opinion that this was happening because I was
Speaker 2: not managing my stress levels sufficiently. I am not entirely
Speaker 2: sure what that was supposed to mean, and she was
Speaker 2: not entirely wrong. Stress was a factor, but this was
Speaker 2: not actually me not managing it properly. So at the
Speaker 2: end of that year she took me to a psychiatrist
Speaker 2: to try and see what we could do about this,
Speaker 2: because you know, she said to me, if this carried
Speaker 2: on happening, I would not be allowed to get a
Speaker 2: learner's license.
Speaker 1: So anyway, my mother takes.
Speaker 2: Me to a psychiatrist and I have a session and he.
Speaker 3: Says to her, take a terenurologist. She has epilepsy.
Speaker 2: I get sent for an EEG. Afterwards, we go back
Speaker 2: into the doctor's rooms. He has a look at the
Speaker 2: and he says, oh, yes, this is textbook epilepsy. You
Speaker 2: had an eight second seizure while you were during the EG.
Speaker 2: I have to say, my poor mother, that was the
Speaker 2: first time I've ever.
Speaker 1: Seen anyone's jaw literally drop.
Speaker 3: She was so shocked.
Speaker 2: I was just really relieved to know that the plot
Speaker 2: in fact my fault. So what the doctor explained to
Speaker 2: me was that I had ABSMS.
Speaker 3: Epilepsy what used to be called pitimol.
Speaker 2: I did not know that there was any kind of
Speaker 2: epilepsy other than the kind where you fell on the
Speaker 2: floor and shake, and that was what was epilepsy in
Speaker 2: my mind. So I was surprised to discover there was
Speaker 2: something else. So I was put on medication. The brand
Speaker 2: name here is epilem or epilsine.
Speaker 3: Is the generic. It's sodium valpert.
Speaker 2: The doctor told me I should be careful because this
Speaker 2: can increase my appetite and caused me to gain weight.
Speaker 2: Now I'm a sixteen, almost seventeen year old girls, so
Speaker 2: this caused me a great deal of anxiety, and I
Speaker 2: remember telling my mother, Okay, well, you know, help me
Speaker 2: look out for you know, am I eating more? Another
Speaker 2: side effect is developing acne. Now I have been quite
Speaker 2: a lucky teenager.
Speaker 1: I never had serious breakouts.
Speaker 2: I had the occasional pimple, and suddenly I was developing
Speaker 2: pretty serious acne. And again I'm seventeen, SUNNYA, I have acne,
Speaker 2: I'm gaining weight. It really did a number on my confidence.
Speaker 2: In my early twenties. My seizures had been completely controlled
Speaker 2: for ye since I had initially started on a medication.
Speaker 3: So twenty ten.
Speaker 2: I was twenty two, and my doctor agreed with me
Speaker 2: that we could try and low the dose and if
Speaker 2: that goes well, we can stop the medication and see
Speaker 2: what happens. So I started having brains at again occasionally,
Speaker 2: and I kind of ignored them because I thought, nope, nope,
Speaker 2: I'm fine.
Speaker 1: I don't want to rely on the medication.
Speaker 2: And then one day, it was after class in the afternoon,
Speaker 2: I was sitting in the computer lab where some of
Speaker 2: my classmates we were busy working on assignments. And the
Speaker 2: next thing I know, I opened my eyes and I
Speaker 2: am flat on my back on the floor, and there
Speaker 2: are several very concerned faces sort of crowding above me.
Speaker 1: So what had happened.
Speaker 2: Was that I had been in front of my computer
Speaker 2: and I had all of a sudden had a Grandma seizure.
Speaker 2: What used to be called grandma these days are called
Speaker 2: tonic clonic seizures, and this is the classic one where
Speaker 2: you fall on the floor and your body stiffens and
Speaker 2: then you shake.
Speaker 3: I later asked.
Speaker 2: Some of my classmates sort of what did it look like,
Speaker 2: and apparently I had been for me at the mouth,
Speaker 2: because I bet in my tongue there was blood in
Speaker 2: the saliv which cannot have been easy for them to see.
Speaker 2: I think I am very lucky that I did not
Speaker 2: lose blood or bowel control, because that is something that
Speaker 2: can happen during a tony clinic seizure. And obviously, you
Speaker 2: know it's not something that you can help. It's just
Speaker 2: a medical thing, but I would have been just so embarrassed.
Speaker 2: I was incredibly confused after the seizure. I was also
Speaker 2: completely fatigued. I could barely move my body.
Speaker 3: I couldn't walk, so I go back to my.
Speaker 2: Previous dose of medication. The year after that, twenty eleven,
Speaker 2: is when I moved to Joburg. Things seem to be
Speaker 2: going fine. I of course had to switch to a
Speaker 2: different doctor. This is also the first time that I
Speaker 2: find out that you're not supposed to get pregnant while
Speaker 2: you are on Valbert because it has a potential to
Speaker 2: be teratogenic, which you know. None of my previous doctors
Speaker 2: had told me this. I am a young woman of
Speaker 2: reproductive age, I'm someone who can get pregnant, and no
Speaker 2: one bothered to tell me this, so I was quite upset.
Speaker 2: Fast forward to twenty sixteen November. I am freelancing at
Speaker 2: an ad agency. I'm doing prove fruiting for them. I'm
Speaker 2: sitting in front of the computer and suddenly I opened
Speaker 2: my eyes and I'm lying flat on my back on
Speaker 2: the floor, and there are several really anxious faces crowded
Speaker 2: over me. And I've just had another Grandma's seizure.
Speaker 3: Again.
Speaker 2: I'm very confused. I can barely move my limbs. These
Speaker 2: are people I don't know. I've only been there for
Speaker 2: a week, and on my first day, I accidentally.
Speaker 3: Got locked in the toilets, so I'm.
Speaker 1: Already known for that. But no, I'm no.
Speaker 3: Longer the girl got stuck in the toilets on the
Speaker 3: girl had seizure on the office, so that's fine.
Speaker 2: So not long after that, I go and see my neurologist.
Speaker 2: This is the first time in several months that he's
Speaker 2: had a good look at me, and he says, Okay,
Speaker 2: you have lost a very large amount of weight. Your
Speaker 2: body is metabolizing your medication too quickly. That is why
Speaker 2: you had a seizure on top of all the stress
Speaker 2: and so on. So we increase I think actually we
Speaker 2: doubled my medication. Things have gone medicines.
Speaker 3: Then that was the last seizure of.
Speaker 1: Any kind that I've had.
Speaker 2: My stress levels improved, macne improved, so things are generally
Speaker 2: better now. I have pressed pause on any kind of
Speaker 2: reproductive decisions for now.
Speaker 1: I'm turning thirty five now.
Speaker 3: So I still have a little.
Speaker 1: Bit of time if I want to think about it.
Speaker 2: The epilepsy has been under control for several years now,
Speaker 2: so for the most part, it's not giving me grief.
Speaker 2: But that was quite an unpleasant experience, that realization about
Speaker 2: just things that I hadn't been told. Maybe it's because
Speaker 2: I was a teenage goal and my doctor didn't think
Speaker 2: that it was particularly necessary to tell me about certain
Speaker 2: side effects apart from getting weight, because obviously that's the
Speaker 2: only thing that could worry me. For me, my epilepsy
Speaker 2: experience has been quite a mixed bag. I am technically
Speaker 2: quite lucky that mine is easy controlled with medication, I
Speaker 2: can lead a normal life, but it's also been a
Speaker 2: giant Panama ass and I would prefer not to have it.
Speaker 2: I don't have any sort of feelings about, oh, it's
Speaker 2: made me a stronger person or anything like that, and
Speaker 2: it has also given me some insight into aspects of
Speaker 2: the medical profession that are disappointing. That's where things stand
Speaker 2: at this moment. I am hoping for maybe a magical miracle,
Speaker 2: gene therapy or something that will remove us, but we
Speaker 2: will see where things go.
Speaker 4: Thank you so much, Louise for sharing your story with us.
Speaker 5: Yes, thank you so so much for sharing that Hi
Speaker 5: I'm Aaron Welsh and I'm Erin almon Updyke and this
Speaker 5: is this podcast will Kill You, And today it's a
Speaker 5: very big topic. We're talking about epilepsy.
Speaker 4: It's the biggest topic that we've covered in a very
Speaker 4: long time.
Speaker 5: Do we say that every single episode?
Speaker 4: Yes? Is it true this time? Yes, it is absolutely true. Yeah.
Speaker 4: This is going to be a long but chock full
Speaker 4: of information and questions episode. I can already tell and
Speaker 4: Erin you and I talked about this. It was an
Speaker 4: interesting and difficult balance to strike between too much detail
Speaker 4: and not enough detail.
Speaker 5: Yeah, it was. It was a difficult episode to kind
Speaker 5: of piece together for me, and I know you said
Speaker 5: the same. So we'll just see how we did. Yeah,
Speaker 5: but first we all know what time it is.
Speaker 4: Is it quarantine?
Speaker 5: It's quarantiny time. What are we drinking this week? We're
Speaker 5: drinking the Clonic Tonic.
Speaker 4: We are This is one of my favorite names, and
Speaker 4: we were inspired by a listener who sent in a
Speaker 4: very similar suggestion, so thank you, Robin. And the Clonic
Speaker 4: Tonic is a very simple drink. It is simply campari
Speaker 4: and tonic water and a slice of orange. And I
Speaker 4: love this because I think it's actually surprisingly adaptable to
Speaker 4: a non alcoholic cocktail because there are bitter non alcoholic
Speaker 4: liqueurs or whatever for lack of a better word, that
Speaker 4: seemed to really take the place of campari, and one
Speaker 4: of them that I've tried that's delicious is Gia. But anyway,
Speaker 4: there are options out there, so it's a simple recipe.
Speaker 4: But we will post it for both the Quarantini as
Speaker 4: well as the Place Barta on our website. This podcast
Speaker 4: will as well as on all of our social media channels.
Speaker 5: On our website. Since we're still at the beginning of
Speaker 5: the season, let us tell you about what you can
Speaker 5: find there. It's fantastic. It's this podcast will kill You
Speaker 5: dot com. We've got sources from every one of our episodes.
Speaker 5: We've got transcripts of those episodes as well. We've got
Speaker 5: links to our merch which is fantastic. We've got a
Speaker 5: good Reads list, We've got a link to our bookshop
Speaker 5: dot org affiliate account. We've got Bloodmobile, our music, We've
Speaker 5: got there's probably more. Our Patreon it's there, check it out.
Speaker 4: It's all there. I'm wearing one of the very cool
Speaker 4: new crew neck sweatshirts that you can find on our
Speaker 4: merch page and it's the best. You should get one
Speaker 4: for yourself everyone. I was actually.
Speaker 5: Wearing one of our new sweatshirts recently when I went
Speaker 5: out to get a milkshake and somebody was like, I
Speaker 5: love your sweatshirt. I love that podcast, and I got
Speaker 5: so embarrassed that I just was like, thanks, cool, And
Speaker 5: then I started talking to my dog again.
Speaker 4: That's amazing. Oh my gosh, Hello, it's a great sweatshirt.
Speaker 5: All right, Well, shall we get into the actual topic
Speaker 5: of this episode?
Speaker 4: I think we should right after this break.
Speaker 5: We said it at the top, and I do feel
Speaker 5: like we say almost every episode these days, what a
Speaker 5: huge topic we're dealing with, And it's usually true, although
Speaker 5: we probably also usually exaggerate for sure, But when it
Speaker 5: comes to the topic of epilepsy, this really is something
Speaker 5: that could probably be split into, quite honestly, a whole
Speaker 5: season of episodes, depending on how deep you wanted to
Speaker 5: get in all of the various types of seizures and
Speaker 5: types of epilepsy and the specific path of physiology, not
Speaker 5: to mention history and epidemiology and so on and so forth.
Speaker 5: It really is an absurdly large topic to try and
Speaker 5: cover in under two.
Speaker 4: Hours, hopefully overly ambitious.
Speaker 5: So we are not going to cover every detail today,
Speaker 5: which means that we might not cover any one particular
Speaker 5: form of epilepsy or type of seizure that some listeners
Speaker 5: might be hoping for in the amount of detail that
Speaker 5: you might want. But the good news is we'll have
Speaker 5: plenty of resources for you who want to dive deeper.
Speaker 5: And what I'm hoping that we can all get out
Speaker 5: of this biology section at least is an appreciation of,
Speaker 5: first of all, what the heck is a seizure anyway? Yeah,
Speaker 5: what are some of the various types of seizures, because spoilers,
Speaker 5: it's not just what you've seen on TV. How do
Speaker 5: these seizures differ, and what's going on in our brains
Speaker 5: during this process? And then what is epilepsy in the
Speaker 5: context of seizures? Yeah, So that's where we're going to try.
Speaker 4: To get to. I want to know the answers to
Speaker 4: all of those questions.
Speaker 5: I'll do my best. So I'll start out with just
Speaker 5: some definitions, and for these I will quote, because love
Speaker 5: to have a quote definition epilepsy. The definition from the
Speaker 5: International League Against Epilepsy is defined as quote a chronic
Speaker 5: disease of the brain characterized by an enduring predisposition to
Speaker 5: generate seizures unprovoked by any immediate central nervous system insult
Speaker 5: risk Aaron's words. That part's really important, and we'll get
Speaker 5: into it. Back to the quote, and by the neurobiological, cognitive, psychological,
Speaker 5: and social consequences of seizure recurrence. So let's kind of
Speaker 5: just reiterate in maybe more easy language, epilepsy is recurrent
Speaker 5: seizures that happen chronically without a clear provoking cause, at
Speaker 5: least not acutely, like not a single identifiable cause of seizures,
Speaker 5: and all of the consequences that result from those recurrence
Speaker 5: of seizures. So clearly, to understand what the heck that means,
Speaker 5: like what the heck epilepsy is in that context, we
Speaker 5: have to first understand seizures and realize that not all
Speaker 5: seizures are indicative of or lead to the disease known
Speaker 5: as epilepsy. So while all people living with epilepsy experienced
Speaker 5: seizures in one form or another, not all people with
Speaker 5: seizures or who have had seizures have epilepsy by definition, right,
Speaker 5: So what is a seizure. Then and again, the International
Speaker 5: League Against Epilepsy has a definition for us, and I
Speaker 5: quote a seizure is a transient occurrence of signs and
Speaker 5: or symptoms due to abnormal, excessive, or synchronous neuuronal activity
Speaker 5: in the brain. Episode over that was so clear.
Speaker 1: Right, A.
Speaker 4: I have so many questions already.
Speaker 5: I do too, Aarin, And while that definition might have
Speaker 5: been helpful for some people, I actually really struggle with
Speaker 5: that definition. So I'm going to try and really break
Speaker 5: this down in the way that my brain makes sense
Speaker 5: of it, which is on a very basic level we
Speaker 5: all know and I've talked about on this podcast before
Speaker 5: in other episodes where we've dealt with things like meningitis
Speaker 5: or other kind of brain related injuries that our brain
Speaker 5: communicates via both electrical and chemical signals. So in general,
Speaker 5: what happens in our brain is that chemical signals are
Speaker 5: converted into actual electrical impulses, and that is what is
Speaker 5: transmitting information to allow us to do literally everything like blink, breathe,
Speaker 5: talk wave type, et cetera. And these electrical signals and
Speaker 5: the chemical signals as well have to be very tightly
Speaker 5: regulated both in their circuits of where they go, and
Speaker 5: how they go, and the timing for us to be
Speaker 5: able to do all of the things. So what happens
Speaker 5: in a seizure is that we see a burst of
Speaker 5: these electrical impulses, an abnormal amount and or abnormal networks
Speaker 5: or pathways of activity. That is what we are seeing
Speaker 5: in a seizure, and that is what is picked up
Speaker 5: on an EEG. When they're hooking up all those electrodes
Speaker 5: to look at the electrical activity in your brain and
Speaker 5: they say, this looks like a seizure. And this abnormal activity,
Speaker 5: it can start from just one part of the brain,
Speaker 5: which results in what we call a focal seizure or
Speaker 5: what used to be called partial seizures, or sometimes we
Speaker 5: can see this burst of electrical impulses from both sides,
Speaker 5: both hemispheres of our brain at the same time, and
Speaker 5: that results in what we call a generalized seizure. And
Speaker 5: because our brain is suffice it to say, very complicated,
Speaker 5: it's a complex structure with a lot of different layers
Speaker 5: between which these electrical impulses have to travel. So these
Speaker 5: abnormal bursts of activity can happen in any given part
Speaker 5: of our brain, which means that those signs or symptoms
Speaker 5: that we might see or a sonociate with the seizure
Speaker 5: can actually very incredibly widely depending on where in the
Speaker 5: brain they're occurring.
Speaker 4: I have a question about the word abnormal. Ooh, yeah,
Speaker 4: what is normal? And then how far outside of normal
Speaker 4: is abnormal? What does the range look like? You know
Speaker 4: what I mean?
Speaker 5: Yeah, that is a really really good question, and I'm
Speaker 5: going to just say I don't have an answer for
Speaker 5: it because I don't know enough about EEG readings, and
Speaker 5: I know that there are sometimes things that can be
Speaker 5: called by some people this looks like what we would
Speaker 5: call an epileptiform or a seizure like change in an
Speaker 5: EEG that maybe by other people would be interpreted as
Speaker 5: not quite that. So it's a really good question, and
Speaker 5: I don't think that there in some cases is a
Speaker 5: cut and dry answer. But what we see on these
Speaker 5: electrical readings is basically just impulses that often associate with
Speaker 5: specific seizure like activity that we'll talk about in a minute,
Speaker 5: that also correlate with what we're seeing on an EEG
Speaker 5: that is different than a person's baseline brain activity.
Speaker 4: Okay, two questions. One, when you're comparing to baseline is
Speaker 4: that that person's baseline or like population baseline. And then
Speaker 4: number two is who is doing the reading. Is it
Speaker 4: a person or is it a computer or is it both?
Speaker 4: Like how who determines what is an epileptiform pattern?
Speaker 5: Excellent questions. For the first one, I don't fully know.
Speaker 5: There are I think enough egs done in the world
Speaker 5: and being studied for many decades that we have a
Speaker 5: sense of what typical brain patterns look like across various people.
Speaker 5: You would still also compare one person's e E at
Speaker 5: their baseline when they're not having seizures versus when they
Speaker 5: are having seizures. So I think it's a little bit
Speaker 5: of both, okay, and it is not me. It's a
Speaker 5: neurologist who is reading the EEG's okay, but it is
Speaker 5: a human.
Speaker 4: It's a human.
Speaker 5: A lot of times there's you know, just like with
Speaker 5: an EKG when we're looking at your heart, there's usually
Speaker 5: a computer readout component, but then an actual human is
Speaker 5: always going to be the one looking at it and
Speaker 5: determining a human with a lot of training, a lot okay, fascinating, cool,
Speaker 5: But it is also true that because of that there
Speaker 5: is a certain amount of subjectivity, right right right, Okay,
Speaker 5: so what then might some of these different types of
Speaker 5: seizures look like. I think most people listening likely associate
Speaker 5: seizures with one very specific type of seizure, and that
Speaker 5: seizure type is called a generalized tonic clonic seizure. These
Speaker 5: used to be called Grand Mall seizures, so that terminology
Speaker 5: might be familiar to some people. These are the kind
Speaker 5: that you see on TV where somebody might collapse and
Speaker 5: is unconscious and then they have a rhythmic jerking of
Speaker 5: especially the large muscles of their body. They'll be kind
Speaker 5: of rigid and then have muscle convulsions. They might bite
Speaker 5: their tongue during this process, they might have loss of
Speaker 5: bladder or bowel function because of autonomic nervous system involvement.
Speaker 5: And then usually when they wake up, they have a
Speaker 5: period of confusion where they're not quite sure what's going on,
Speaker 5: and this might take some time to resolve. That is
Speaker 5: one type of seizure, but it is just one, and
Speaker 5: there are so many more than that. And that makes
Speaker 5: sense since now we know that any part of the
Speaker 5: brain can be affected. So let's get into how we
Speaker 5: can classify seizures. We define seizures first from their point
Speaker 5: of origin. So, like I said four, seizures can be focal,
Speaker 5: which means they start from one part one hemisphere, and
Speaker 5: one little part of the brain. Don't ask me how
Speaker 5: little aaron, just like one area of the brain, okay.
Speaker 5: Or they can be generalized, meaning that they're starting at
Speaker 5: onset from both hemispheres of the brain, and a lot
Speaker 5: of times we actually don't know we don't know necessarily
Speaker 5: what that pinpoint origin is. And so then these seizures
Speaker 5: are classified as unknown origin, and then we can further
Speaker 5: classify them by what signs and symptoms we see after that.
Speaker 5: Then to further break this down, there are also motor
Speaker 5: and non motor seizures. So motor seizures have like physical
Speaker 5: skeletal muscle involvement, so moving of usually the extremities or
Speaker 5: something in some way. This can look like spasms. It
Speaker 5: can be like a hyperkinetic or a myoclonic like and
Speaker 5: tightening of muscles. It could be a tightening and relaxing
Speaker 5: very rapidly, which is what results in that tonic clonic description.
Speaker 5: That's what tonic clonic means. It's alternating between tensing and
Speaker 5: relaxing of muscles. With this like jerking motion. It could
Speaker 5: also be much smaller twitches of muscles, just say of
Speaker 5: the hand or the face. Or it could also be
Speaker 5: a sudden weakness, so rather than a tension of muscles,
Speaker 5: it could be a sudden flacidity of muscles. And that's
Speaker 5: all just within motor seizures. It could also have none
Speaker 5: of that and be a non motor seizure, which could
Speaker 5: have a huge variety of symptoms. It could have cognitive
Speaker 5: symptoms like just a blank stare where people just suddenly
Speaker 5: like have no emotion on their face. It is a
Speaker 5: blank stare and is unresponsive. It could be sensory symptoms
Speaker 5: that might even be something that people are feeling or
Speaker 5: are aware of sudden sensory changes. Or it could be
Speaker 5: a complete loss of activity all of a sudden, which
Speaker 5: is called behavioral arrest, where someone just suddenly stops exactly
Speaker 5: what they're doing, and a whole bunch of other things
Speaker 5: even within that, and when we especially talk about focal seizures,
Speaker 5: this is not true for generalized seizures. But then the
Speaker 5: third step that we have to look at is whether
Speaker 5: awareness is intact or impaired. So because a focal seizure
Speaker 5: happens in only one part of the brain. Someone may
Speaker 5: or may not know and be aware that they're having
Speaker 5: a seizure at the time that they're having it, and
Speaker 5: so we say that their awareness is either impaired or intact.
Speaker 5: With generalized seizures, awareness is not intact because it's happening
Speaker 5: in both hemispheres of your brain at the same time.
Speaker 5: But of times people do have like prodromes or what
Speaker 5: we call auras prior to a seizure, so they might
Speaker 5: know that one is coming and before you ask, because
Speaker 5: I know you're going to have a million questions.
Speaker 4: I do you can already see one on my face?
Speaker 5: Yep, I can. All of these different seizure types are
Speaker 5: not mutually exclusive. Different types of epilepsy or even a
Speaker 5: single seizure episode can have multiple of these forms within them.
Speaker 5: So for example, something could start as a focal seizure,
Speaker 5: but could then generalize and become bilateral and then end
Speaker 5: with something that looks like a generalized tonic chlonic seizure,
Speaker 5: Or people could have different fauxci of seizures throughout their
Speaker 5: brain that result in throughout their lifetime having seizures of
Speaker 5: multiple types or multiple forms and my last important note
Speaker 5: before I let you ask questions that I hope I
Speaker 5: can answer, is that one of the things that's very
Speaker 5: important to know about seizures is that these are brief episodes.
Speaker 5: These are brief episodes of this intense neuuronal activity. And
Speaker 5: when I say brief, I mean on the order of
Speaker 5: seconds to one to two minutes, because any seizure lasting
Speaker 5: more than five minutes, or if you have multiple seizures
Speaker 5: happening within a short time frame where someone does not
Speaker 5: return to full consciousness in between, that results in something
Speaker 5: known as status epilepticus and is a major medical emergency.
Speaker 5: We thought, I think for a long time in the
Speaker 5: kind of history of epilepsy, that it was twenty or
Speaker 5: thirty minutes before this became an emergency.
Speaker 4: But it's not.
Speaker 5: If seizures are happening for five minutes straight, that's a
Speaker 5: medical emergency because there's so much brain activity that can
Speaker 5: result in long lasting damage. This is rare. Status epilepticus
Speaker 5: is rare. It most often happens with generalized tonic clonic seizures,
Speaker 5: so that seizure that's happening on both sides resulting in
Speaker 5: that convulsive whole body seizure. But it's also possible to
Speaker 5: have non convulsive status epilepticus, and that's I think really
Speaker 5: important where EEGs can be so integral in like figuring
Speaker 5: out what's going on, because you might be having more
Speaker 5: seizures than you even have very obvious signs.
Speaker 4: Or symptoms of Right, that makes sense.
Speaker 5: Okay, I know you have a million questions.
Speaker 4: Yeah, okay, I want to start pretty general. Okay, we
Speaker 4: have all of these different seizure classification types. There can
Speaker 4: be overlap, there can be multiple descriptors for a certain
Speaker 4: type of seizure. That is important information. What does that
Speaker 4: information help you decide to do? Does it have an
Speaker 4: impact on treatment, on prognosis, on Yeah, like what what
Speaker 4: sort of information do you get from that? Beyond just
Speaker 4: what type of seizure?
Speaker 5: It is excellent question. It has implications for kind of
Speaker 5: so many different things. So, for example, especially when it
Speaker 5: comes to focal seizures, if we can identify that a
Speaker 5: seizure is coming from one specific focus, then there are
Speaker 5: potentially treatment options that might be very targeted. Let's say
Speaker 5: that a seizure is emanating from a particular area of
Speaker 5: the brain where there is a tumor that's something that
Speaker 5: we're going to be more easily able potentially to target
Speaker 5: and to treat directly. It also does affect what medications
Speaker 5: might be used, and I don't have a lot of
Speaker 5: details on that because there are so many different anti
Speaker 5: epileptic medications and anti seizure medications, but there are different
Speaker 5: ones that have maybe been shown to be more beneficial
Speaker 5: in certain types of seizures than other types of seizures.
Speaker 5: So it's important to note and be able to kind
Speaker 5: of identify what type of seizure to be able to
Speaker 5: pick the best medication. And then when you have, say,
Speaker 5: focal seizures, whether there's an impairment of awareness or not,
Speaker 5: that also is going to be important for not only
Speaker 5: just a person's general life, but also determining if it's
Speaker 5: safe for them to be doing activities like driving, etc.
Speaker 4: Okay, Okay, that makes sense.
Speaker 5: Yeah, So there's kind of a lot of layers of
Speaker 5: why it's important not just medications, but also additional treatments
Speaker 5: that might be available and just kind of determining what
Speaker 5: somebody's prognosis might be and things like that as well.
Speaker 4: Okay, my other question is about something that you mentioned,
Speaker 4: and that is the damage that can result from status epilepticus,
Speaker 4: But I also wanted to know, first of all, how
Speaker 4: does that damage occur and does that damage happen in
Speaker 4: people who, for instance, have epilepsy, not status epilepticus, but
Speaker 4: repeated seizures throughout their life.
Speaker 5: Yeah, absolutely excellent question. So the short answer is, yes,
Speaker 5: there are changes in the brain that are going to
Speaker 5: happen with epilepsy and with recurren seizures. And one of
Speaker 5: the things that I always try and touch on it
Speaker 5: in all of our episodes is the pathophysiology of whatever recovering,
Speaker 5: and so that usually means trying to get into some
Speaker 5: of that nitty gritty detail, like what is happening in
Speaker 5: our brain during this process. When it comes to epilepsy,
Speaker 5: it's really difficult to get super into the nitty gritty details,
Speaker 5: not just because I'm not a neurologist, but also because
Speaker 5: the underlying brain changes that can lead to epilepsy to
Speaker 5: these recurrents of seizures are manyfold. There's a lot of
Speaker 5: different potential changes in the brain that can result in epilepsy.
Speaker 5: So then it makes the specific details of what's causing
Speaker 5: seizures also really varied, and so it's hard to kind
Speaker 5: of generalize it, but I'm going to try. So the
Speaker 5: leading hypothesis is that when it comes to epilepsy, when
Speaker 5: it comes to recurrent, unprovoked seizures, what happens is that
Speaker 5: you end up with an imbalance of excitatory and inhibitory
Speaker 5: currents at its most basic form. And we've talked on
Speaker 5: this podcast before about how in our brain we have
Speaker 5: neurotransmitters and electrical signals that are promoting action like bend
Speaker 5: your arm, and we have pathways in our brain that
Speaker 5: are inhibiting action like unbend your arm right or stop bending.
Speaker 5: And there's a lot of different neurotransmitters and ions and
Speaker 5: receptors that are involved in all of this complex signaling
Speaker 5: and converting these excitatory and inhibitory signals into that electricity. Right, So,
Speaker 5: epilepsy arises when those signals are malfunctioning. But that can
Speaker 5: happen through any of those particular pathways, through changes in
Speaker 5: ion channels, through changes in the concentration of neurotransmitters, from
Speaker 5: changes in receptors in our brain. And there's some hypothesis
Speaker 5: that part of the recurrence of seizures in epilepsy is
Speaker 5: due to inflammation that happens during this seizure process. And
Speaker 5: it might be that inflammation as well plays a really
Speaker 5: big role in the kind of perpetuation of epilepsy and seizures.
Speaker 5: I don't know if that fully answers your question, but
Speaker 5: the truth is that it's because seizures can occur from
Speaker 5: so many different possible sources. It can also result in
Speaker 5: so many different changes in the brain, both changes in
Speaker 5: things like our ion channels or the concentration of their transmitters.
Speaker 5: It can result in changes of the structural cells, the
Speaker 5: glial cells within our brain. It can also result in
Speaker 5: changes in the actual connectivity of our neural networks themselves
Speaker 5: when you have seizures and when you have recurrent seizures,
Speaker 5: so any and all of the above are possible.
Speaker 4: Does having one seizure make you more likely to have
Speaker 4: a second seizure?
Speaker 5: That's a good question. I don't think that we can
Speaker 5: one hundred percent say yes or one hundred percent say no.
Speaker 5: There are a lot of ways that you can have
Speaker 5: a seizure that you may never have a seizure again.
Speaker 5: For example, febrow seizures, which happen in kids, usually young kids.
Speaker 5: Most commonly like twelve to eighteen months, but usually anywhere
Speaker 5: from six months to five years can have a seizure
Speaker 5: in the context of an acute illness where they have
Speaker 5: a fever that's not from es central nervous infection, because
Speaker 5: that would be something else entirely, and these most often
Speaker 5: resolve spontaneously. We don't usually see any permanent or residual damage.
Speaker 5: And while there may be some association between kids who
Speaker 5: have febrowse seizures and who later do get diagnosed with epilepsy,
Speaker 5: that doesn't mean that most kids who have feebrow seizures
Speaker 5: are going to develop epilepsy by any means. Okay, same thing.
Speaker 5: If you think of someone who's a child or an
Speaker 5: adult who ends up having a seizure because of metabolic
Speaker 5: derangements like severe hypoglycemia in the context of something like diabetes,
Speaker 5: oh okay, that can result in seizures, but this would
Speaker 5: be a reflex or a provoked seizure due to that
Speaker 5: clear factor hypoglycemia causing that seizure, And no matter how
Speaker 5: many times you might have a hypoglycemic seizure, that doesn't
Speaker 5: necessarily mean that you have epilepsy.
Speaker 4: That was my other question which was unprovoked. What is
Speaker 4: a provoked versus unprovoked? Okay, exactly.
Speaker 1: Yeah.
Speaker 5: The same is true for something like alcohol withdrawal, which
Speaker 5: is a very common cause of seizures. So if your
Speaker 5: seizures are only and exclusively in the context of alcohol withdrawal,
Speaker 5: that doesn't necessarily mean you have epilepsy.
Speaker 4: Right, And so when you're talking about unprovoked, you're not
Speaker 4: talking about triggers for epilepsy seizures like flashing lights or
Speaker 4: which I know is correct not very yeah, okay.
Speaker 5: Yeah, Actually that's a really good important point. Yes, I'm
Speaker 5: not talking about that which can trigger someone who has epilepsy.
Speaker 5: And one thing I think is really important that I
Speaker 5: saw in a paper that I never thought of that
Speaker 5: way is that epileptic seizure. So people who have epilepsy,
Speaker 5: their seizures are not random, Like seizures are not entirely random.
Speaker 5: We might not know by any means what any provoking
Speaker 5: factor is for any given particular seizure that someone has.
Speaker 5: But something is going on in a person's brain that
Speaker 5: ends up leading to a seizure in a person who
Speaker 5: has epilepsy. Okay, so they're not entirely random, gotcha? Yeah,
Speaker 5: that's honestly most of what I have for the kind
Speaker 5: of biology of seizures and of epilepsy.
Speaker 4: Okay, so then I do have more questions, Race.
Speaker 5: I was going to talk about treatment, but I want
Speaker 5: to know if you have any more questions first.
Speaker 4: So you went through a bunch of different types of seizures.
Speaker 4: Epilepsy also comes in many different forms. What are some
Speaker 4: of those forms?
Speaker 5: Yeah, so, and I will say that the terminology surrounding epilepsy,
Speaker 5: much like the terminology surrounding seizures themselves, has changed a
Speaker 5: lot in recent years. I'm going to talk about the
Speaker 5: most current terminology that we have. So in general, today
Speaker 5: epilepsy is classified as either genetic, meaning predominantly arising from
Speaker 5: an identifiable genetic cause, be that a single mutation or multiples,
Speaker 5: or structural or metabolic, which means it's caused initially at
Speaker 5: least by something like say a stroke, or a trauma
Speaker 5: like a traumatic brain injury or a tumor in the
Speaker 5: case of structural, or even a malformation of the brain
Speaker 5: itself which might be congenital, or various metabolic syndromes that
Speaker 5: might lead to seizures, which can also be genetics. So
Speaker 5: it gets a little confusing or instigated by something like
Speaker 5: a meningitis or an encephalitis that later leads to recurrent seizures,
Speaker 5: and then if we can't pinpoint any of those, then
Speaker 5: an epilepsy would be classified as unknown and a really
Speaker 5: big proportion of epilepsy and I don't have an exact
Speaker 5: number on this is actually unknown origin, so we don't
Speaker 5: always know what the instigating factor was, Okay.
Speaker 4: And then what about different types of epilepsy?
Speaker 5: Yeah, I know, I mean this one is hard, I
Speaker 5: think because I think it was more common in the
Speaker 5: past to separate out very specific forms of epilepsy, and
Speaker 5: now I think we have started lumping a lot more
Speaker 5: of them together based on those classifications that I mentioned,
Speaker 5: like what type of seizures do you have with your epilepsy?
Speaker 4: Okay?
Speaker 5: So I know when I was in med school, I
Speaker 5: had to memorize a whole bunch of different seizure types
Speaker 5: and a whole bunch of different types of epilepsy. And
Speaker 5: it seems like the trend now is more to focus
Speaker 5: on what seizure types does a person with epilepsy experience
Speaker 5: and classify it based on that. So, as an example
Speaker 5: of that, a lot of people might have heard of
Speaker 5: temporal lobe epilepsy. Temporal lobe epilepsy means seizures that are
Speaker 5: arising from the temporal lobe, which is one lobe of
Speaker 5: our brain. We have one temporal lobe on each side.
Speaker 5: So now it would be more common to classify that
Speaker 5: as a person who has epilepsy whose seizure type is
Speaker 5: a focal onset impaired awareness seizure originating from the temporal
Speaker 5: lobe with motor symptoms of various forms.
Speaker 4: Okay, does that make sense?
Speaker 5: So it's like more cumbersome, but a lot more specific.
Speaker 4: Right, I mean, and it makes sense in terms of
Speaker 4: treatment issue, I would imagine.
Speaker 5: And then within that you'll still be able to classify
Speaker 5: the type of epilepsy based on whether it's genetic or
Speaker 5: whether it was from a structural change or a metabolic disorder, etc. Right.
Speaker 4: Important also that genetic does not mean hereditary necessarily.
Speaker 5: Yes, absolutely.
Speaker 4: Speaking of treatment, Yeah, what treatments are there? How do
Speaker 4: they work?
Speaker 3: Great question?
Speaker 5: There are a whole host of anti epileptic or anti
Speaker 5: seizure medications. And the good news that I have is
Speaker 5: that most data that I saw suggests that up to
Speaker 5: seventy or some places say eighty percent of people living
Speaker 5: with epilepsy will achieve remission, and often this happens with
Speaker 5: the first drug tried, the first anti seizure medication that
Speaker 5: somebody tries, regardless of what one they end up trying.
Speaker 5: There are too many different anti seizure medications for me
Speaker 5: to list. Some of them act, for example, on sodium
Speaker 5: channels and so they're modulating some of those chemical signals.
Speaker 5: Some of them might act on certain neuro receptors or
Speaker 5: other neurotransmitters like gabba or glutamate. So I'm not going
Speaker 5: to get into the nitty gritty of how each of
Speaker 5: these different medications work. But you can imagine that if
Speaker 5: we can pinpoint any specifics about a seizure, we might
Speaker 5: be able to pick one anti seizure medication over another.
Speaker 5: Right and seventy percent remission sounds pretty good, but it
Speaker 5: also means that right now, thirty percent of people do
Speaker 5: not or will not necessarily achieve remission.
Speaker 4: What proportion of that is lack of access versus not
Speaker 4: finding the right drug.
Speaker 5: That's a good question. That's not counting lack of access,
Speaker 5: that's people who are tried on anti seizure medication, yeah,
Speaker 5: which is really important because we'll get into lack of
Speaker 5: access later. This is where it becomes really important to
Speaker 5: be able to identify as much as we can about
Speaker 5: seizures because for some people who can't achieve remission with
Speaker 5: medication so far, there may be surgical options depending on
Speaker 5: the focality of their epilepsy. So surgery might mean resection
Speaker 5: or destruction of an area of epileptic focus, or it
Speaker 5: might be nerve stimulation, usually peripheral nerve stimulation rather than
Speaker 5: deep brain stimulation. Various forms of this have been shown
Speaker 5: in some cases to lead to a reduction in seizure burden,
Speaker 5: maybe not complete remission. Another treatment that a lot of
Speaker 5: people have probably heard of because it's all over everything
Speaker 5: is a dietary control known as the ketogenic diet. The
Speaker 5: ketogenic diet is very interesting and probably could be its
Speaker 5: whole own episode. In general, the quality of evidence that
Speaker 5: we have is not all that great, but likely because
Speaker 5: of small sample sizes, but it has been shown for
Speaker 5: treatment resistant childhood epilepsy to improve the chances of seizure
Speaker 5: reduction or remission. There's a lot less evidence for less
Speaker 5: restrictive diets like there's a modified at Kins, there's a
Speaker 5: low glycemic index version. But for someone who is living
Speaker 5: with very frequent seizures, even a small reduction in caizure
Speaker 5: burden might be a pretty big deal in pretty life changing.
Speaker 5: But the data that we have is just not all
Speaker 5: that strong, and a true ketogenic diet like is used
Speaker 5: in these studies to look at epilepsy is incredibly difficult
Speaker 5: to achieve. It is very very restrictive. So it's not
Speaker 5: the ketodiet that's on the news throwing that out there.
Speaker 5: I also am really I just am personally very interested
Speaker 5: in the potential mechanisms of the ketogenic diet. So I
Speaker 5: do have a couple papers if people want to read
Speaker 5: more about it. Spoilers, We don't know, but there's a
Speaker 5: lot of different hypotheses with various levels of potential, theoretical
Speaker 5: and actual support on how this change in forcing our
Speaker 5: brain to use keytnes rather than glucose might shift basically
Speaker 5: metabolism or mitochondrial function to then change the way that
Speaker 5: electrical impulses are generated. It's pretty cool, but it's all
Speaker 5: kind of theoretical at this point, so.
Speaker 4: Yeah, yeah, okay, interesting.
Speaker 5: It's interesting, and there's more if you want to read
Speaker 5: about it. But that essentially is what I have at
Speaker 5: least about epilepsy and seizures.
Speaker 4: I have two questions. Okay, My first question is how
Speaker 4: many recurrent seizures does it take to be diagnosed as epilepsy?
Speaker 6: Oh?
Speaker 5: Great, question?
Speaker 1: Two?
Speaker 4: Oh really?
Speaker 5: Two or more? I can give you, like a full
Speaker 5: even more formal definitions, two or more unprovoked seizures greater
Speaker 5: than twenty four hours apart, so not within the same
Speaker 5: day or And this part's very interesting and has really
Speaker 5: huge implications for the treatment of people with epilepsy going forward.
Speaker 5: It can also be a single unprovoked seizure in a
Speaker 5: person who has a greater than sixty percent risk of
Speaker 5: having another seizure over the next ten years. And the
Speaker 5: way that they determine that is by looking at an
Speaker 5: EEG to see if the findings on there look like
Speaker 5: there are changes in the brain already that have the
Speaker 5: potential to result in seizures or any epileptiform activity that
Speaker 5: you can see on an EEG, even if you're not
Speaker 5: having seizures at the time. And so those two things
Speaker 5: with a sixty percent probability would then even with a
Speaker 5: single seizure mean that you have epilepsy. Okay, and then
Speaker 5: the third thing would be also if you have an
Speaker 5: epilepsy syndrome, so like a genetic or other disorder that
Speaker 5: is known to be associated with epilepsy.
Speaker 4: Gotcha. Yeah, question is you know you talked about how
Speaker 4: epilepsy A lot of the time we don't know what
Speaker 4: causes someone's epilepsy. Yeah, a lot of the time. Also,
Speaker 4: epilepsy can just stop. Yeah, why, how when does that happen?
Speaker 4: Under what circumstances? How often? Yeah?
Speaker 5: If I had those answers erin it is more common.
Speaker 5: I believe with childhood epilepsies that they may resolve over time. Why,
Speaker 5: I don't know. And beyond that, it's just a really
Speaker 5: good and interesting question some people. And maybe it could
Speaker 5: also be related to if there is an instigating factor,
Speaker 5: Let's say a meningdroitis infection or a traumatic brain injury,
Speaker 5: something that changes the brain enough that you have this
Speaker 5: chance of recurrent seizures, or you've had two seizures greater
Speaker 5: than twenty four hours apart, so you meet this definition
Speaker 5: for epilepsy. But over time, maybe your brain remodels itself
Speaker 5: enough to then no longer have this epileptiform activity. Huh,
Speaker 5: then you can, yes, resolve your epilepsy.
Speaker 4: I'm fascinating.
Speaker 5: Yeah, And that's also part of the change in the
Speaker 5: definition of epilepsy that happened relatively recently, is that it
Speaker 5: can be a disease that is also resolved.
Speaker 4: Okay, also a temporary chronic disease.
Speaker 5: Yeah. Yeah, well, and also something that is classified as
Speaker 5: a disease and not a disorder. And that was a
Speaker 5: very intentional change when they kind of updated these definitions,
Speaker 5: which I think is very interesting. So, Aaron, that was
Speaker 5: a lot, it was, and also probably not enough.
Speaker 4: Yep.
Speaker 5: So tell me where did all of this come from?
Speaker 4: How did we get here?
Speaker 5: Have we always had epilepsy?
Speaker 1: What?
Speaker 4: I will start the deep deep dive into the history
Speaker 4: section right after this break quote. A history of epilepsy
Speaker 4: seems a premature, perhaps even a doubtful enterprise. There is
Speaker 4: no unanimity about the range of the concept of epilepsy,
Speaker 4: and the nature of the disease is as yet obscure.
Speaker 4: End quote.
Speaker 5: Wow, so the end?
Speaker 4: Huh? The end? I borrowed this quote from a book
Speaker 4: called The Falling Sickness by Aosey Tempkin, considered to be
Speaker 4: the authority on the history of epilepsy in the Western world.
Speaker 4: These words mark the very beginning of the first edition
Speaker 4: of this book, published back in nineteen forty five, and
Speaker 4: when twenty six years later the author revised and published
Speaker 4: a second edition, there they stayed right at the beginning,
Speaker 4: and I think they were even in the fourth edition
Speaker 4: published in the mid nineties.
Speaker 6: Oh no, yeah, because when that fourth edition came out
Speaker 6: in nineteen ninety four, they remained just as true as they.
Speaker 4: Were in nineteen forty five.
Speaker 1: Wow.
Speaker 4: And now in twenty twenty three, I feel like there's
Speaker 4: still an accurate descript of the mystery that surrounds epilepsy.
Speaker 4: So that's why I thought it was the perfect way
Speaker 4: to start the history section. Great, even though we've come
Speaker 4: a tremendously long way in our understanding and treatment of
Speaker 4: epilepsy since those words were first written, as the biology
Speaker 4: section just demonstrated, there are still so very many unanswered questions.
Speaker 4: But having unanswered questions isn't a bad thing. Necessarily look
Speaker 4: at the nature of those questions and how specific they are.
Speaker 4: That alone, I think shows incredible progress in our knowledge
Speaker 4: of epilepsy, and that progress, along with the historical social
Speaker 4: perceptions of epilepsy is what I want to talk about today,
Speaker 4: particularly in the Western world, since that's where most of
Speaker 4: the sources that I found concentrated on. When did humans
Speaker 4: first recognize epilepsy, How did the meaning of this condition
Speaker 4: shift over time? What did people think caused epilepsy, and
Speaker 4: how did they treat it? This is a massive topic,
Speaker 4: like we keep saying, and I'm going to try my best,
Speaker 4: but there are parts that I simply won't get to
Speaker 4: or won't go into in great depth. And like we
Speaker 4: keep saying, the good news is that we will give
Speaker 4: you plenty of material to read on if you are
Speaker 4: still curious. Always always the other challenge, or maybe not
Speaker 4: necessarily challenge. But something that I want to note is
Speaker 4: that the definition of epilepsy has changed substantially throughout history,
Speaker 4: and even at any one given point in time, you
Speaker 4: would probably get a dozen different answers if you ask
Speaker 4: a dozen different people what epilepsy was. In ancient times
Speaker 4: and into the Middle Ages and the Renaissance, epilepsy, seizure, attack, convulsion,
Speaker 4: Many different words or terms were all used, interchangeable. So
Speaker 4: while today we think of epilepsy as a chronic condition
Speaker 4: in the past. It could have meant that, or it
Speaker 4: could have meant an isolated seizure, so keep that in mind.
Speaker 4: I usually try in these history sections to talk a
Speaker 4: bit about the evolutionary origins of whatever topic we're covering,
Speaker 4: but I decided not to attempt that for epilepsy for
Speaker 4: several reasons. There is still so much unknown about its pathophysiology.
Speaker 4: You can't even really say it's pathophysiology, since there are
Speaker 4: so many different types of seizures, each with different histories
Speaker 4: and causes and triggers, and so I felt that a
Speaker 4: discussion of each of those evolutionary histories would probably have
Speaker 4: been more confusing than enlightening. I will go so far
Speaker 4: as to say that it's likely that humans have experienced
Speaker 4: epilepsy for as long as we've been human, and probably
Speaker 4: long before that, and instead I'll start with the very
Speaker 4: first observations of epilepsy, which come from the ancient world.
Speaker 4: Some researchers have speculated that trepanation, which is a practice
Speaker 4: that's been performed for thousands of years where you make
Speaker 4: a small hole in the skull and remove the bone,
Speaker 4: that was done to treat epilepsy, and that ancient tripand
Speaker 4: skulls indicate their knowledge of the disease, but this remains controversial,
Speaker 4: and it's something that we're never going to know for
Speaker 4: sure why people use trepanation in ancient times. The earliest
Speaker 4: written description of epilepsy comes from Mesopotamia around twenty five
Speaker 4: hundred BCE, in an ancient Sumerian text describing quote a
Speaker 4: person whose neck turns left, whose hands and feet are tense,
Speaker 4: and eyes wide open, froth flowing from the mouth, and
Speaker 4: consciousness being lost, which pretty well describes a focal, unaware
Speaker 4: tonic seizure. This condition was called antisubu and with to
Speaker 4: be related to the hand of Sin, the god of
Speaker 4: the moon. And already we have our first theme in
Speaker 4: the history of epilepsy, a theme that kind of I
Speaker 4: think overshadows most any other theme that I would call.
Speaker 4: Attention to the belief that the condition had links to
Speaker 4: the supernatural, to religion, to magic of some sort, that
Speaker 4: it was more than a physical condition. Yep. As we'll see,
Speaker 4: this gave epilepsy a whole host of different meanings, some
Speaker 4: positive like oh, you are prophetic or you're a chosen genius,
Speaker 4: and some most negative, like it being a sign that
Speaker 4: you're possessed by an evil demon or spirit.
Speaker 5: I feel like that is the one that I think
Speaker 5: of the most when you think of like historical associations
Speaker 5: with epilepsy or seizures.
Speaker 4: Yep, for sure, and we'll get into all of it.
Speaker 4: But a big part of this theme is that these
Speaker 4: beliefs about the supernatural cause of epilepsy were in continuous
Speaker 4: conflict for much of history with scientists or physicians who
Speaker 4: believed that there was a physical, biological explanation for what
Speaker 4: was happening. Sometimes superstition dominated popular thought and other times science.
Speaker 4: This dichotomy is an oversimplification. It's much more nuanced than
Speaker 4: how I'm presenting it, but I wanted to point it
Speaker 4: out because it shapes the prevailing perception and treatment of
Speaker 4: epilepsy over the next several thousand years, give or take.
Speaker 4: For instance, in one of the Hippocratic texts, written around
Speaker 4: four hundred BCE, it is said that the seat of
Speaker 4: the disease is in the brain. It's a hereditary condition,
Speaker 4: and that an excess of phlegm in the blood is
Speaker 4: what leads to seizures. It's always the phlem. It's always
Speaker 4: the phlem, and that's part of the humoral theory of disease.
Speaker 4: In this text called on the Sacred Disease, the author
Speaker 4: also argue against the labeling of epilepsy as a divine disease. Quote.
Speaker 4: I am about to discuss the disease called sacred. It
Speaker 4: is not, in my opinion, any more divine or sacred
Speaker 4: than any other diseases, but has a natural cause, and
Speaker 4: its supposed divine origin is due to men's inexperience and
Speaker 4: to their wonder at its peculiar character. But if it
Speaker 4: is to be considered divine just because it is wonderful,
Speaker 4: there would be not one sacred disease, but many, hm,
Speaker 4: which is kind of amazing considering that was like thousands
Speaker 4: of years ago. Yeah, and so much happened in between
Speaker 4: then and now.
Speaker 5: Yeah.
Speaker 4: And this isn't to say that the science behind what
Speaker 4: these ancient Greek physicians believed caused epilepsy was sound by
Speaker 4: today's standards. You know, for instance, it was caused by
Speaker 4: the weather, hot wind, dry wind, whatever. But it was
Speaker 4: a clear and important distinction to them, to many physicians
Speaker 4: at that time, And I think that's really interesting. Yeah. However,
Speaker 4: that was certainly not the case. As we move on
Speaker 4: to ancient Rome and then especially the Middle Ages. In
Speaker 4: Ancient Rome, the scientific lens through which many Hippocratic era
Speaker 4: physicians viewed epilepsy shifted to one that was a bit
Speaker 4: more supernatural, or at least one where a supernatural explanation
Speaker 4: was more willingly considered. An epileptic seizure could be a
Speaker 4: bad omen, and it was often thought to be brought
Speaker 4: on by an unwelcome god or demon. A person who
Speaker 4: had epilepsy was considered unclean and their condition contagious by
Speaker 4: touch or by sharing food or drink. While occasionally it
Speaker 4: was viewed as a blessing or a sign of prophecy,
Speaker 4: by and large it was a negative, stigmatizing disease. The
Speaker 4: meaning that eple held, or the importance with which people
Speaker 4: viewed it, can be seen in part by looking at
Speaker 4: the names that it has had over time. Let's start
Speaker 4: with the word epilepsy, which has roots in the Greek
Speaker 4: verb epilambanian I'm probably completely destroyed that, But that word
Speaker 4: means to seize or to attack, So epilepsy seems to
Speaker 4: have been used in these ancient texts simply to mean seizure,
Speaker 4: a single medical event without any connotations of supernatural or
Speaker 4: magic elements. The chronic condition was often referred to in
Speaker 4: ancient Greece and Rome as the sacred disease or the
Speaker 4: great disease, which eventually turned into the Latin morbis meyer
Speaker 4: and then into the French grand mal, which is also
Speaker 4: a term that we used to use for a certain
Speaker 4: type of seizure. In the Middle Ages, the name most
Speaker 4: commonly used to describe the condition was something involving falling,
Speaker 4: the falling sickness, the falling evil catechus meaning falling something
Speaker 4: that falls. And I will also note that the falling
Speaker 4: sickness was what the disease was called in the first
Speaker 4: descriptions in ancient Chinese medical texts dating back to seven
Speaker 4: seventy BCE, but also in the Middle Ages, the disease
Speaker 4: began to be associated with more loaded words such as
Speaker 4: demonicus and lunaticus, referring to the belief that epilepsy was
Speaker 4: a type of madness or that it was a sign
Speaker 4: of possession. Speaking of lunaticus, I don't know if I'm
Speaker 4: saying that right, probably not, which is where the word
Speaker 4: lunatic comes from. It originates from the Latin luna, meaning moon,
Speaker 4: since it was believed that the moon could cause bouts
Speaker 4: of insanity or epilepsy. During this time period, people with
Speaker 4: epilepsy were often described as being seized by quote the
Speaker 4: disease of the moon. Why the moon, Well, perhaps it
Speaker 4: was the vengeance of the goddess of the moon, or
Speaker 4: you could go with a scientific explanation that quote, the
Speaker 4: waxing moon heated the atmosphere surrounding the Earth and consequently
Speaker 4: melted the brain, thus provoking an attack. But I mean, like,
Speaker 4: this is something that kept occurring to me, is that
Speaker 4: we look back at that now and we laughed. But
Speaker 4: that was science, Like the goddess was the superstition part.
Speaker 4: The science part was the moon melting your brain. There
Speaker 4: are many different ways to distinguish between superstition and science,
Speaker 4: or wishful thinking or magical thinking and science. And some
Speaker 4: was done at the time of the writings, and some
Speaker 4: is done from our perspective today. So we could look
Speaker 4: at that and go, oh, well, both of those are
Speaker 4: definitely superstitious beliefs. How could you ever think that the
Speaker 4: moon would melt your brain? But back then that was science.
Speaker 4: I know, something I kept thinking about. Epilepsy was also
Speaker 4: thought to be from demotic possession or caused by the devil,
Speaker 4: and its reputation as an evil disease gets a mention.
Speaker 4: Even in Dante's Inferno, many people with epilepsy were forbidden
Speaker 4: to go to church, or if they were allowed, they
Speaker 4: could not take the Eucharist or touch anything in the
Speaker 4: church because again, people thought it was contagious. Epilepsy was
Speaker 4: linked to witchcraft, and in the handbook on witch hunting
Speaker 4: Malias Meleficarum, written by two Dominican friars and published in
Speaker 4: fourteen ninety four, it was said that seizures were characteristic
Speaker 4: of witches, and also that witches could cause epilepsy to develop.
Speaker 5: Huh yeah, a lot of feelings there.
Speaker 4: But again I will say that there was no overall
Speaker 4: consensus on epilepsy as an evil disease at any point
Speaker 4: in time. There were also mentions of it as a
Speaker 4: saintly disease. Saint Valentine is the patron saint of epilepsy
Speaker 4: and one that marked you as chosen in a good
Speaker 4: way or a genius. Continuing into the Renaissance, epilepsy was
Speaker 4: still a disease fraught with meaning, and it was still
Speaker 4: the doctor or the priest or society that got to
Speaker 4: choose what that meaning was. Priests were sometimes called in
Speaker 4: to determine whether someone was possessed or simply had epilepsy,
Speaker 4: and people with epilepsy were believed to have the power
Speaker 4: of prophecy, but that their prophecies should be taken with
Speaker 4: a grain of salt. I suspect it was something along
Speaker 4: the lines of we should believe them if it's a
Speaker 4: favorable prophecy, and we should shun them otherwise.
Speaker 5: I'm so curious if there was any correlation between different
Speaker 5: seizure types and whether someone was considered to be demonic
Speaker 5: versus saintly or possessed versus you know, a fortune teller,
Speaker 5: Like it's it's so interesting to try and we can't know.
Speaker 4: I guess, but we can't know. And as I'll talk about,
Speaker 4: people did recognize many different seizure types, but I think
Speaker 4: it was so difficult to spread this information, but also
Speaker 4: to look back now and go, oh, that was this
Speaker 4: type of seizure, or oh they were seeing, this was
Speaker 4: what they were writing about, even a seizure, right, you know,
Speaker 4: like yeah, I don't know, yeah, oh yeah. But it
Speaker 4: is around this time during the Renaissance that scientific thought
Speaker 4: and the medical writings of ancient physicians like Hippocrates and
Speaker 4: Avicenna began to experience a resurgence as people became more
Speaker 4: and more skeptical of supernatural or magical explanations, and this
Speaker 4: led to epilepsy being viewed and researched with more of
Speaker 4: a medical lens rather than solely with a moral one.
Speaker 4: Which isn't to say that epilepsy became a neutral disease,
Speaker 4: not at all. As one author put it, superstitions were exchanged,
Speaker 4: not discarded. But before I continue onto that, I want
Speaker 4: to go back and ask not what epilepsy meant to
Speaker 4: people from ancient times to the Renaissance, but what people
Speaker 4: actually knew about what epilepsy was. As I'm sure you'll
Speaker 4: talk more about Aaron, epilepsy in its many forms is
Speaker 4: incredibly prevalent, and this likely isn't a new phenomenon given
Speaker 4: the extent to which epilepsy was written about historically. Even
Speaker 4: some of the oldest descriptions of epilepsy that we have
Speaker 4: talk about different forms of the condition, variations in seizure, appearance,
Speaker 4: and duration, and they do a pretty good job of
Speaker 4: recognizing patterns in its epidemiology. Instance, although descriptions of seizures vary,
Speaker 4: the common features among them include a fall to the ground, unconsciousness,
Speaker 4: insensibility to pain, and no recollection of the attack upon
Speaker 4: regaining consciousness. They observed that epilepsy most often occurred early
Speaker 4: in life, especially during teething, and that it was uncommon
Speaker 4: for it to first show up after twenty years of age.
Speaker 4: Some writers suggested it was hereditary, while others said it
Speaker 4: was congenital like. One of the more popular and persistent
Speaker 4: superstitions from the Renaissance was that if a pregnant person
Speaker 4: saw someone having a seizure, that baby would develop epilepsy.
Speaker 4: Oh my gosh eventually. Yeah, okay, yeah, not what happens.
Speaker 4: Writers early on recognized that a seizure was often preceded
Speaker 4: by what they called and what we still call, an
Speaker 4: aura meaning breeze, which got its name when a young
Speaker 4: boy described a sensation like a cold breeze entering his
Speaker 4: head right before he had a seizure. A range of
Speaker 4: pre seizure signs or symptoms was recognized slow speech, headache, dizziness,
Speaker 4: stiff hands, ringing in the ears, just to name a few,
Speaker 4: and beginning in the Middle Ages, major divisions in epilepsy
Speaker 4: began to be made often associated with where it was
Speaker 4: thought to originate in the body, which I think is
Speaker 4: interesting knowing that that's how we characterize a lot of
Speaker 4: seizures types as well as like where it originates in
Speaker 4: the brain, the brain, Yeah, this was in the body.
Speaker 4: So for instance, there was epilepsy, which was the condition
Speaker 4: that originated in the head, and then anilepsy the form
Speaker 4: arising from the stomach, and then catalepsy was from any
Speaker 4: other part of the body. Epilepsy was also linked to
Speaker 4: hysteria when the seizures were thought to originate in the uterus,
Speaker 4: and eclampsia was also thought to be a special form
Speaker 4: of epilepsy arising from a pregnant uterus.
Speaker 5: Yeah that's interesting because that is still just it's not epilepsy,
Speaker 5: but yeah, yeah, yeah, yeah, but it's a seizure. Yeah,
Speaker 5: that's really interesting.
Speaker 4: Yeah. And then divisions were made more along the lines
Speaker 4: of major versus minor. Pleantarius in the twelfth century wrote quote,
Speaker 4: major epilepsy is a complete obstruction of the principal ventricles
Speaker 4: of the brain. People suffering from it fall down quickly,
Speaker 4: the mouth and face are distorted, and there's also a trembling,
Speaker 4: movement of the neck and of the whole body, and
Speaker 4: clenching of the teeth. Sometimes they pass urine feces and
Speaker 4: seed involuntarily, they snore and froth, and when the froth
Speaker 4: has been wiped off, they froth again. Minor epilepsy is
Speaker 4: an incomplete obstruction of the ventricles of the brain. People
Speaker 4: suffering from it sometimes fall down. Sometimes they do not
Speaker 4: fall down, but faint. The froth, once having been wiped off,
Speaker 4: does not reappear, and they are quickly relieved.
Speaker 5: Interesting.
Speaker 4: Yeah. Although physicians from the Renaissance largely echoed what the
Speaker 4: preceding generations had written about epilepsy, particularly ancient Greek physicians,
Speaker 4: they did make one important observation that broadened the concept
Speaker 4: of the condition, that epilepsy or seizures could result as
Speaker 4: a complication from another illness, such as smallpox or scurvy,
Speaker 4: or measles or the newly emerging syphilis. Essentially, the idea
Speaker 4: that epilepsy could be a symptom or a complication and
Speaker 4: wasn't just a disease unto itself.
Speaker 5: That is super interesting.
Speaker 4: Isn't that? And as this definition of epilepsy expanded, the
Speaker 4: classification came to be more about perfect or simple epilepsy,
Speaker 4: the most common form, the form that you see the most,
Speaker 4: and then there was imperfect epilepsy, anything that was out
Speaker 4: of the ordinary. And while these physician writers certainly weren't
Speaker 4: right about everything, the extensive writings, with largely accurate representations
Speaker 4: of programs, range of seizure types, timing of onset, and
Speaker 4: association with certain traumatic events such as a head injury,
Speaker 4: shows that these physicians were thinking about the disease and
Speaker 4: writing about it in a systematic way. What they did
Speaker 4: struggle with was the ultimate cause of epilepsy, which I
Speaker 4: think we can empathize with, given just how many things
Speaker 4: can cause epilepsy, how much of the time we don't
Speaker 4: know what causes it, how many different types of seizures
Speaker 4: there are, and how we are still struggling to understand
Speaker 4: the pathophysiology of this condition. Scientific explanations were varied. Hot
Speaker 4: weather or dry weather or too temperate weather, drinking too
Speaker 4: much alcohol or not enough, exercising or lack of exercise,
Speaker 4: too much sleep or not enough, anger, fright, bad smells.
Speaker 4: Anything could be blamed for epilepsy. And we've already gone
Speaker 4: through some of the moral explanations. Nothing seemed to fit,
Speaker 4: nothing seemed to be a satisfyingly consistent answer. And so
Speaker 4: is it any wonder really that we have a million
Speaker 4: and one explanations for epilepsy from these times, and for
Speaker 4: every one of those explanations, we have at least ten
Speaker 4: cures our favorite. And that also makes complete sense, given
Speaker 4: that epilepsy can sometimes resolve on its own. Like we
Speaker 4: talked about, medications can work differently from person to person
Speaker 4: and from type to type, and it can take a
Speaker 4: long time, even today to see whether a medication for
Speaker 4: epilepsy is actually effective. I don't know, though, if I
Speaker 4: have ever seen as extensive a list of cures and
Speaker 4: treatments for any illness as I have for epilepsy.
Speaker 5: Ooh.
Speaker 4: I loved this quote from neurologist Edward CEF King in
Speaker 4: eighteen sixty one. Quote, there is scarcely a substance in
Speaker 4: the world capable of passing through the gullet of man
Speaker 4: that has not, at one time or another, enjoyed the
Speaker 4: reputation of being an anti epileptic end quote.
Speaker 5: That's really funny. I feel like that's honestly like still
Speaker 5: true sometimes.
Speaker 4: Right, And I won't go through this absolutely massive list
Speaker 4: because I eventually just stopped writing them down. I was like,
Speaker 4: I can't, I can't. This is all of my notes
Speaker 4: now and it would be an entire episode. But I
Speaker 4: did want to go through a variety of them. Mistletoe
Speaker 4: is commonly featured, especially mistletoe collected at the New Moon.
Speaker 4: An amulet containing coral paeony and the root of strychnose
Speaker 4: paeony also shows up frequently. An iron nail or weapon.
Speaker 4: Avoidance of iron, the first vertebra of a human, drinking
Speaker 4: human blood, especially gladiator blood. Okay, h lichens of horses
Speaker 4: or mules. I don't know exactly what that is. I
Speaker 4: genitals of seals, Nope, testicles of the hippopotamus.
Speaker 5: No, also no.
Speaker 4: Also no blood of the tortoise or of the flatfish.
Speaker 4: The skin of a lizard, this lovely combination. Feces of
Speaker 4: the land crocodile, the heart and genitals of the hair
Speaker 4: and blood of the sea tortoise. I uh huh. A
Speaker 4: frog's liver, burned human bones in a cocktail. Avoidance of goats,
Speaker 4: menstrual blood rubbed over the soles of your feet. Just
Speaker 4: stop it, do more, kill a dog and let the
Speaker 4: patient have its bile, and my absolute favorite is quote
Speaker 4: to let the person who first saw him fall urinate
Speaker 4: into his own shoe, stir the urine and give it
Speaker 4: as a drink to the patient.
Speaker 5: Arin Like, I know we talk about not like judging
Speaker 5: people back then, but like, come on.
Speaker 4: I know it's the it's really I mean, there are
Speaker 4: lots of things like burned human bones and p shoe PI.
Speaker 5: Shoe that's not ever going to be a thing.
Speaker 1: M M.
Speaker 4: I mean, I think it does demonstrate how desperate people
Speaker 4: were for a cure.
Speaker 5: That seems even beyond.
Speaker 4: Yeah. I also wonder sometimes like were any of these
Speaker 4: ever written as a joke and we're just right like
Speaker 4: they're like, haha, these ridiculous things that people have tried,
Speaker 4: and it's not act. No one actually has ever done
Speaker 4: any of these.
Speaker 5: That's what that one feels like. Oh quite honestly, it
Speaker 5: feels like what you tell like your little brother to do,
Speaker 5: you know, and then you're like, I didn't mean for
Speaker 5: you to.
Speaker 4: Actually do it, mom. Yeah, yeah, one hundred. Well, Fortunately,
Speaker 4: as we move on to the age of Enlightenment and beyond,
Speaker 4: so like the seventeenth eighteenth century onwards, epilepsy becomes less
Speaker 4: about drinking someone's pee from a shoe and more about
Speaker 4: systematic study.
Speaker 5: Okay, I love it.
Speaker 4: One thing that helped tremendously with this was the rise
Speaker 4: in anatomical dissections, which I think we've talked about before.
Speaker 4: For hundreds of years prior had been viewed as sacrilegious,
Speaker 4: and so for the first time, anatomists were able to
Speaker 4: link certain diseases with observable changes in the structure or
Speaker 4: function of body parts, and that included epilepsy and changes
Speaker 4: in the brain such as an abscess or a tumor
Speaker 4: or a hemorrhage in someone with the condition, and the
Speaker 4: rise of statistics had its own role to play, something
Speaker 4: that we've talked about in several other episodes of the podcast.
Speaker 4: In the case of epilepsy, institutions were created to house
Speaker 4: and care for people with the disease since it was
Speaker 4: believed that they could or should not live independently, and
Speaker 4: these institutions were viewed as opportunities to collect medical data
Speaker 4: for statistical purposes, which did lead to advancements in understanding
Speaker 4: the hereditary nature of some forms, characterizing the age of
Speaker 4: onset patterns and seizure triggers, incidents of certain forms, and
Speaker 4: also rejecting some of the long held beliefs like the
Speaker 4: phase of the moon affected the likelihood of a seizure.
Speaker 4: But they were eighteenth and nineteenth century institutions, nonetheless, and
Speaker 4: likely pretty miserable places to be forced to live. Demonic
Speaker 4: possession or association with quote unquote insanity continued to be
Speaker 4: used as a justification for locking someone with epilepsy away,
Speaker 4: and it was only in the early to mid eighteen
Speaker 4: hundreds that separate buildings were established for people with epilepsy
Speaker 4: and people deemed quote unquote insane, with one major distinction
Speaker 4: between the groups being that the epilepsy group could attend
Speaker 4: mass while the quote unquote insane group could not. Clearly,
Speaker 4: the stigmatization of epilepsy didn't lessen over time, it just
Speaker 4: changed in flavor. Despite the many medical advancements made throughout
Speaker 4: the eighteen hundreds, sure some completely unsupported ideas about the
Speaker 4: underlying cause of epilepsy gained traction, specifically that masturbation led
Speaker 4: to epilepsy, with some doctors recommending circumcision or even castration
Speaker 4: or cletoridectomy to literally no effect. Yeah, oh gosh. But overall,
Speaker 4: the rise of experimental observational science and the specialization of
Speaker 4: medical branches like neurology led to tremendous progress in our
Speaker 4: understanding of seizures and epilepsy. What had been previously divided
Speaker 4: into two main groups, idiot pathic epilepsy originating in the
Speaker 4: brain and sympathetic epilepsy originating anywhere else, soon became more
Speaker 4: and more complex, with terminology developed to describe different types
Speaker 4: of seizures like grand mal petitemol and absence. The physiology
Speaker 4: of nerves and reflexes began to be uncovered, and that
Speaker 4: helped to better understand why seizures looked like they did,
Speaker 4: and experiments altering blood flow to and from the brain
Speaker 4: showed how unconsciousness or convulsions could result from the duration
Speaker 4: or intensity of blockage. Slowly, but surely, scientists were chipping
Speaker 4: away at the mystery that was epilepsy and finding that
Speaker 4: with every question answered, ten more sprung up in its place, inevitably. Inevitably,
Speaker 4: but the questions were becoming more targeted, more detailed, revealing
Speaker 4: just how quickly progress was being made, due in large
Speaker 4: part to the rejection of superstitious thinking, the need for
Speaker 4: science claims to be supported by observational or experimental data,
Speaker 4: and a tendency to look at everything with a healthy
Speaker 4: dose of skepticism, including the teachings of the ancient Greek physicians,
Speaker 4: which previously had been taken more or less as gospel.
Speaker 4: Perhaps the biggest turning point in the history of epilepsy
Speaker 4: during this time came with the invention of the human
Speaker 4: EEG electro and cephalogram by Hans Berger in nineteen twenty nine.
Speaker 4: I'm not good at like this could be its like
Speaker 4: its own episode. Really it could be maybe someday. But
Speaker 4: what it did for epilepsy was allowed physicians to diagnose
Speaker 4: a type of seizure or epilepsy without actually having to
Speaker 4: observe the person having a seizure. Researchers, especially Frederick Andrews Gibbs,
Speaker 4: Erna Lenhardt Gibbs, and William Lennox, described three major types
Speaker 4: of clinical seizures using EEG patterns, petitemol, grandma, and psychomotor seizures.
Speaker 4: These we all call these different things today, and this
Speaker 4: last one's psychomotor seizures, or in today's terms, focal seizures
Speaker 4: arising from the temporal lobe. Prior to this, most of
Speaker 4: the people experiencing one of these seizures were labeled as hysterical,
Speaker 4: and the application of EEG to animal models also really
Speaker 4: opened up the world of epilepsy, making it very clear
Speaker 4: that we desperately needed to revamp our classification system, and
Speaker 4: so in nineteen sixty four, the International League against Epilepsy
Speaker 4: proposed a new classification system, which has since been continually
Speaker 4: revised and refined, with big changes occurring every few decades.
Speaker 4: And I kind of love that it's constantly changing, because
Speaker 4: it's like, hey, let's reconsider, maybe we should change this
Speaker 4: word or that word. Maybe there's a you know. I
Speaker 4: that's how progress is made. I love it. Cellular and
Speaker 4: molecular advancements have also vastly improved our understanding of the
Speaker 4: underlying pathophysiology of seizures and have shown some promise for
Speaker 4: novel therapies. The late eighteen hundreds and into the nineteen
Speaker 4: hundreds also saw innovation in effective treatments for epilepsy, beginning
Speaker 4: with potassium bromide and the late eighteen hundreds, phenobarbital in
Speaker 4: the early nineteen hundreds, phenetoin or dilantin in the nineteen thirties,
Speaker 4: trimethadone carbamazepine, primidone like soval. The list goes on and
Speaker 4: on and on, and it's still growing constantly all the time.
Speaker 4: That and I'm sure we'll talk about some more that
Speaker 4: are on the horizon. And then there was non pharmaceutical
Speaker 4: treatments that were also successfully applied, including vagus nerve stimulation
Speaker 4: and some surgical procedures. I hope that I've shown by
Speaker 4: now that the eighteen hundreds and nineteen hundreds were a
Speaker 4: time of incredible progress in terms of understanding and treatingplepsy.
Speaker 4: But the rise in quote unquote scientific or rational thinking
Speaker 4: didn't mean that the stigma of epilepsy disappeared. In the
Speaker 4: previous centuries, epilepsy had been feared or looked upon negatively,
Speaker 4: likely because it was a mystery. You fear what you
Speaker 4: don't know. No one knew what caused it, no one
Speaker 4: knew why it happened when it happened, and so science
Speaker 4: couldn't answer it. It must be a devil, it must
Speaker 4: be a god, it must be whatever the moon. But
Speaker 4: when we finally gained enough concrete knowledge about epilepsy to
Speaker 4: conclude that it wasn't demonic possession, that knowledge wasn't used
Speaker 4: to dispel the harmful stigma surrounding epilepsy, but rather to
Speaker 4: perpetuate it. Beginning in the late eighteen hundreds and early
Speaker 4: nineteen hundreds, the United Kingdom and many states in the
Speaker 4: US created laws for the sterilization of people with epilepsy
Speaker 4: and laws forbidding marriage if you had epilepsy. I know,
Speaker 4: I know. At the same time, I will point out
Speaker 4: that marriage was often prescribed for women to cure their epilepsy.
Speaker 4: Stop it not pregnancy necessarily, but just marriage. Stop it
Speaker 4: will calm you down, God, lead you to not have seizures.
Speaker 5: No, no, hey.
Speaker 4: These sterilization and marriage laws were bolstered by some of
Speaker 4: the earliest research into the genetics of epilepsy, which was
Speaker 4: done in the early nineteen hundreds. And if all of
Speaker 4: this screams eugenics to you, that's because it is. This
Speaker 4: is straight from the eugenics handbook, a horrifyingly prevalent opinion
Speaker 4: the twentieth centuries, demonic possession held by so many people
Speaker 4: who were making the policy and healthcare decisions for these people.
Speaker 4: It's horrific. These laws forbidding marriage and permitting sterilization of
Speaker 4: people with epilepsy weren't repealed in some states until the
Speaker 4: nineteen sixties.
Speaker 5: I somehow knew that you were going to say the
Speaker 5: nineteen sixties.
Speaker 4: Even by nineteen sixty six, three states West Virginia, North Carolina,
Speaker 4: and Virginia still had eugenic marriage laws, and thirteen states
Speaker 4: still had eugenic sterilization laws against people with epilepsy. Thirteen states.
Speaker 4: The last law was repealed only in nineteen eighty No, huh.
Speaker 4: Only in nineteen seventy in the UK was a law
Speaker 4: prohibiting people with epilepsy from marrying repealed. And in the US,
Speaker 4: up until the nineteen seventies, it was legal to deny
Speaker 4: people who had seizures into public spaces like restaurants, theaters,
Speaker 4: recreational centers, and so on. And even though we now
Speaker 4: have laws in much of the world prohibiting such discrimination,
Speaker 4: that doesn't mean that it's not done, nor does it
Speaker 4: mean that stigma disappeared overnight. In fact, people with epilepsy
Speaker 4: today often report feelings of stigma and the negative impact
Speaker 4: it has on overall quality of life, which I'm guessing
Speaker 4: you might talk more about. The story of epilepsy is huge,
Speaker 4: and it's so much more than how we learned this
Speaker 4: or that how the EEG came to be, how we
Speaker 4: decided that this seizure was different than this seizure. It's
Speaker 4: a story about the meaning that diseases can hold, how
Speaker 4: science can be manipulated to perpetuate discrimination, and how there's
Speaker 4: never an end to the questions we ask. Speaking of questions, Aaron,
Speaker 4: where do we stand with epilepsy today? Oh?
Speaker 5: I can't wait to tell you right after this short break.
Speaker 5: Epilepsy is so much more prevalent than I realized before
Speaker 5: researching this episode. Globally, more than fifty million people worldwide
Speaker 5: have epilepsy. What fifty million people worldwide? And overall lifetime
Speaker 5: prevalence is thought to be about one percent on average. Wow,
Speaker 5: I know right WHOA disproportionately epilepsy affects people living in
Speaker 5: low and middle income countries and there's probably a whole
Speaker 5: myriad of reasons for that, and we'll get into a
Speaker 5: lot of issues associated with that as well. And another
Speaker 5: statistic that I think is important is that worldwide, there's
Speaker 5: an estimated one hundred and twenty five thousand deaths each
Speaker 5: year related to epilepsy. And I think we often don't
Speaker 5: think of epilepsy as a disease causing death. Yeah, because
Speaker 5: most of the time it doesn't. But the risk of
Speaker 5: premature death for people with epilepsy is estimated to be
Speaker 5: three times higher than that of the general population, and
Speaker 5: in low resource settings, this risk may be up to
Speaker 5: seven times higher.
Speaker 4: Can you talk.
Speaker 5: About why it's a whole lot of different reasons. It
Speaker 5: could be things like drownings or car accidents, like traumatic
Speaker 5: incidences that happen in the context of a seizure.
Speaker 4: Okay.
Speaker 5: It could also be due to infections that result perhaps
Speaker 5: like following a seizure that isn't adequately treated, or as
Speaker 5: a result of status epilepticus resulting in certain brain changes
Speaker 5: that might make you more susceptible to infection later on.
Speaker 5: Things like that, huh, Which is why I think we
Speaker 5: see such higher burden in low and middle income countries
Speaker 5: where you're maybe not having as much diagnosis or access
Speaker 5: to treatment, especially in the cases of things that get
Speaker 5: more severe. We can look at the statistics for epilepsy
Speaker 5: both in terms of adults versus children, as well as
Speaker 5: by different seizure type or different epilepsy type, and so
Speaker 5: we can just kind of briefly go over that because
Speaker 5: I think it's always an interesting part. Prevalence overall, unsurprisingly
Speaker 5: for a chronic disease, is highest in adults. Right, far
Speaker 5: more adults are living with epilepsy than children, just because
Speaker 5: of the numbers of adults that exist. But when we
Speaker 5: look at incidents, so new diagnosis of epilepsy its highest
Speaker 5: in the youngest and the oldest age groups, which is
Speaker 5: really interesting. So it has kind of a bimodal incidence, yeah,
Speaker 5: where you'll see an increase, especially in the first year
Speaker 5: of life, although in low and middle income countries it's
Speaker 5: maybe the first few years of life and then a
Speaker 5: decline in the incidence, so new rates of new infection
Speaker 5: throughout adulthood, and then a subsequent increase again in people
Speaker 5: who are over age eighty five. Now, the types of
Speaker 5: epilepsy are going to be very different in those two
Speaker 5: age groups, where older adults it's more likely to be
Speaker 5: as a consequence of something that happened, say a stroke
Speaker 5: or a trauma or etc. If we look at epilepsy
Speaker 5: by seizure type, one thing that I think is really
Speaker 5: interesting is that it's actually focal seizures that are the
Speaker 5: predominant seizure type in both children and adults, despite the
Speaker 5: fact that popular media would make you think that it's
Speaker 5: these generalized tonic chlonic, very extreme seizures that are the
Speaker 5: only thing that represents the seizure.
Speaker 4: Huh.
Speaker 5: But the most common type overall is focal seizures, usually
Speaker 5: focal impaired awareness seizures, which account for about thirty six
Speaker 5: percent of people with seizures. So this would be a
Speaker 5: seizure that starts from only one place in the brain,
Speaker 5: may or may not have motor involvement, but does result
Speaker 5: in the person being unaware of having the seizure at
Speaker 5: the time of the seizure. Okay, so again, it can
Speaker 5: look a lot of different ways, but focal seizures are
Speaker 5: more common overall, so interesting and overall unknown ideology of
Speaker 5: epilepsy is the most common. So even though we know
Speaker 5: that epilepsy can be genetic, it can be from structural
Speaker 5: or metabolic changes, it can be the result of a trauma,
Speaker 5: most of the time we don't know what the actual
Speaker 5: underlying cause is, which makes it really difficult. So then
Speaker 5: that brings us to where we go from here. Yeah,
Speaker 5: and I honestly didn't even know where to start when
Speaker 5: thinking about this, Like current future directions because there's so
Speaker 5: much ground to cover in terms of therapeutics. There has
Speaker 5: been a huge amount of advancements in recent decades. There
Speaker 5: are dozens of new medications that are safer that we
Speaker 5: have better monitoring for, but I don't have any like,
Speaker 5: here's the newest, most exciting thing to tell you about,
Speaker 5: because we don't have one single mind blowing new drug.
Speaker 5: One thing that I thought was interesting was the idea
Speaker 5: of seizure prediction, which is something that people have been
Speaker 5: working on for a very long time, and I think
Speaker 5: in the eighties and nineties there was a lot of
Speaker 5: hype around it, but then in the early two thousands
Speaker 5: of review came out that was like, yeah, all that
Speaker 5: data was actually really flawed and we are nowhere closer
Speaker 5: to a model to be able to predict seizure onset
Speaker 5: than we were like thirty years ago. But since then
Speaker 5: people are still working on it, which I just think
Speaker 5: is very interesting. There's a lot of kind of flaws
Speaker 5: with the data that exists and the ways that people
Speaker 5: are trying to do it thus far, but with advances
Speaker 5: in EEG technology, it's more likely, I think, than it
Speaker 5: ever has been, which is really really fascinating because so
Speaker 5: much of the burden of epilepsy is this recurrence of
Speaker 5: seizures that you may or may not know are coming right,
Speaker 5: and so being able to predict seizure onset could have
Speaker 5: huge implications for quality of life right, and speaking of
Speaker 5: quality of life, I think one big takeaway from all
Speaker 5: of this is just how far we have to go,
Speaker 5: especially in low and middle income countries, when it comes
Speaker 5: to not only the treatment but also the identification of epilepsy.
Speaker 4: Yeah.
Speaker 5: So just last year, in December twenty twenty two, the
Speaker 5: World Health Organization published a brief that was titled Improving
Speaker 5: the Lives of People with Epilepsy, and most of their
Speaker 5: biggest points were all focused on addressing the treatment gap
Speaker 5: and integrating the treatment of epilepsy into a primary care setting,
Speaker 5: since so much of the world doesn't have access to
Speaker 5: these specialized neurologists and epileptologists. So I think that that
Speaker 5: is kind of one of the things that I'm most
Speaker 5: excited for going forward, is just getting this knowledge to
Speaker 5: a place where it's more applicable to people who are
Speaker 5: already living with this. So that's epilepsy erin.
Speaker 4: It's such I mean, we covered so much ground, Aaron, But.
Speaker 5: But I know nothing.
Speaker 4: I know nothing. Oh my gosh, I know. I mean
Speaker 4: I know a lot more, the same, same, but not everything.
Speaker 4: And I feel like that's how we could sum up
Speaker 4: epilepsy and seizures in general.
Speaker 5: It's so true.
Speaker 4: Wow. Wow. Well, speaking of learning more, let's all do it.
Speaker 4: Let's talk about sources. So I had several. I'm going
Speaker 4: to shout out just one, and that is the book
Speaker 4: that I already mentioned, called The Falling Sickness by Ao
Speaker 4: Say Temkin. And I also want to shout out a
Speaker 4: book that I have not read but is on my list,
Speaker 4: has been for a really long time, and is supposed
Speaker 4: to be an incredible work of nonfiction called The Spirit
Speaker 4: Catches You and You Fall Down by Anne Fataman. And
Speaker 4: these will both be on our website. Both be on
Speaker 4: our list, as well as a bunch of papers that
Speaker 4: I also drew from.
Speaker 5: I also had quite a number of papers with so
Speaker 5: much more detail. For those of you who want that
Speaker 5: nitty gritty, I promise you I have it. Some of
Speaker 5: the papers that I really loved were one that was
Speaker 5: kind of pretty basic, but it was titled the Epidemiology
Speaker 5: of Epilepsy. It was published in Neuroepidemiology in twenty twenty.
Speaker 5: You can't get more effective than that. There was also
Speaker 5: a really interesting one that has a lot more detail
Speaker 5: on how we think epilepsy develops over time that was
Speaker 5: published in Nature Reviews Neuroscience in twenty nineteen. And then
Speaker 5: I've got details on ketogenic diet if you want more
Speaker 5: of that, more on where we stand with the pharmacology
Speaker 5: of epilepsy, and then of course a link as well
Speaker 5: to the World Health Organization brief that I mentioned. All
Speaker 5: of these are on our website this podcast will Kill
Speaker 5: You dot com under the episodes tap, along with the
Speaker 5: sources from every other one of our episodes.
Speaker 4: Thank you again to Luise for being willing to share
Speaker 4: your story with us with everyone.
Speaker 5: Thank you also to Leana Skilacci for help with our
Speaker 5: audio mixing for this episode.
Speaker 4: And thank you to Bloodmobile for providing the music for
Speaker 4: this episode and all of our episodes.
Speaker 5: And thank you to Exactly Right Network.
Speaker 4: And thank you to you listeners. So many, thank you,
Speaker 4: so many, thank you, but we don't want to forget
Speaker 4: about you. You allow us to make this podcast happen.
Speaker 5: Seriously, we love it. Thanks for listening. A special shout
Speaker 5: out to our patrons. It means so much to have
Speaker 5: your support.
Speaker 4: It really does. Big topic over, We're done for the season.
Speaker 4: We're done for the season. Just kidding, Okay everyone, Well,
Speaker 4: we'll be back in a couple of weeks of the
Speaker 4: new episode. Until then, wash your hands
Speaker 5: You filthy animals.