Selects: How Narcolepsy Works

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or wherever you get your podcasts. If you're a bookshelf and you're for you page or equally important to your personality, welcome home. Pro Society is a weekly podcast that's part book club, part group chat for anyone who thinks pride and prejudice and love island deserve the same level of discourse.

Each week, we're connecting the dots between books, the internet, and pop culture. With your favorite writers, booktop creators and plenty of overthought opinions. Yeah, I'm so excited. Listen to Pro Society on the iHeart Radio app, Apple Podcasts, or wherever you get your podcasts. Hey guys, it's me Josh and for this week's Select, I'm going with our May 2020 episode

on Narcolepsy. It's one of those S.Y.S.K.S.C. episodes that covers something we've all heard of, but really known nothing about, and it's deeply satisfying, because it all makes sense and it fits together once you understand it. Good stuff.

I hope you enjoy it. Welcome to Stuff You Should Know, a production of iHeart Radio. Hey, and welcome to the podcast, I'm Josh Clark, and there's Charles W. Chuck Brown. Ryan over there, and Bill Mochier, Chuck Wake up. We're going to get some mail for that right off of the bat.

I feel quite refreshed. So Chuck, you might have narcolepsy then. If you just fell asleep, were you able to resist that urge to sleep just now? No, as soon as I heard, hey, welcome to the podcast, I went lights out. I think that happens to a lot of people.

Have you ever known anyone with narcolepsy? I haven't. The closest I've come to that is watching my own private Idaho. What do you find that sleep-inducing? No, no, there's, I think it's all right.

It's River Phoenix, or Keanu Reeves, has no privacy. I forgot about that. I thought you were saying it's so boring, you can't stay awake. No, no. No, that's cats.

Did you see that?

“No, don't you remember that I tried to make myself go to sleep and cats in the middle of that?”

Oh, that's right. No, I've not seen the movie now. Yeah, that's why I was wondering about it. After having been on movie crush, I now I can't tell what's what anymore. What I said was where.

So my great Aunt Laura had narcolepsy, which is my paternal grandmother sister. And I only met her a few times. This is from my dad's side of the Mississippi clan. So I think I only remember going to Mississippi once when I was a kid and visiting her. And I just remember my brother and I, this is my only memory of that visit, is Scott and

I sitting in a room talking with her and her being in the middle of a sentence and then her head falling down and then 10 seconds later, she would pick her head up and continue that sentence. Wow, like without missing a beat or was there like, oh, you know, did was she aware that she had just fallen asleep and woke her up?

In my memory from being like 10 years old, she didn't miss a beat and just finished her sentence like right in the middle of a sentence and didn't mention it. And my brother and I were just like, what is going on here? What you did didn't prepare you for it? I don't remember.

I blocked out, you know, purposely blocked out a lot of my childhood. Right. I'm sure.

“So I don't know, but I guess that's the only thing I remember it may be a child's memory”

that is a little trumped up, but that's how I remember it. Wow, man.

Well, yeah, I've never known anybody with narcolepsy and based on that, going into this

whole episode, like I was just basically going in like, I'm sure most of our listeners

can't help it and then they wake back up and who cares, basically, you know?

The more that I've researched this, the more I'm like, you know, even if it were just that alone, it would be pretty disruptive to your normal life depending on how often it happened to you, you know, every day. But the fact is, it's not just that alone. And there's a lot of extra symptoms to it that make it frightening or terrifying or depressing

or just completely disruptive or make it so that you are maybe unable to hold down a job or go to school. There's a, it's actually a much, it's a much satter condition than I think most people think of because it seems innocuous. It's just like, yeah, you fall asleep here there, it's fine, you know, and it's not.

It's, there's a lot more to it than that. Yeah, for sure, I should also mention to that something that should not be confused with narcolepsy is something that Emily's family has and I saw this when we would go to visit when they lived in Ohio when he would stay at her parent's house. You didn't bear it.

Well, you know, eating drinking during the day such that by 7 to 8 o'clock at night, every night, I would Emily and I would look around for watching TV and there are four usually three sleeping adults and I dubbed it the gas leak, which everyone in their family thought was hysterical. Right.

Now that's just played old funny. Yeah, that's, that's not narcolepsy at all. It's just, you know, at what age does that start happening is what I want to know, because I'm creeping up there. 21.

'Cause I can still jam late into the night. I'm still, you know, I might be sleeping the next day, but that's my only time when I don't have a five year old. So I used that time. I can stay up still till midnight one in the morning if I am doing something.

That's really neat.

“You must have a lot of testosterone left.”

I don't think so. Well, I mean, well, no, I mean, like to have energy after, you know, a certain time of day is, I think, I think you have a lot of testosterone check. I would bet, we're going to take you in for a test after this. Well, I feel like it's in one day.

I feel like it kicks back in, like I'm sleepy, sometimes during the day, but then when the night comes and my daughter's asleep, I'm like, all right, this is my time to shine. Now, that's very fortunate, man, that you're not just like, this is my time to Netflix and chill. You're getting stuff done.

I'm envious of you for that, because I get a little tired, but I definitely don't have narcolepsy. I'm just kind of like, I'm somewhere between you and Emily's family. They guess, they're correct. Yeah, so narcolepsy is, it's a chronic disorder, it's a sleep disorder.

And I know we've talked a little bit about this in some of our other sleep disorder episodes, so that I thought we might have actually covered this, but I quadruple checked and we have not.

But it's characterized by a few things, one of the main tenets, the basically everybody

that has narcolepsy, has what's called excessive daytime sleepiness. Right.

“That's what everybody thinks about when you think of narcolepsy.”

Somebody's just falling asleep, they can't help it, they're just suddenly out. That's right. Yeah, they also call those sleep attacks, that's pretty cute. No matter what variation of narcolepsy you have, you have excessive daytime sleepiness EDS.

Right. That's right. And this is nothing new. We're just now sort of figuring it out a little bit since the 90s, which we'll get to.

But obviously, this has been happening since there have been people. They've probably been suffering from narcolepsy, you know, a small percentage of people.

It was first described in 1880 by a French physician named Jean-Baptiste Edward Guilinéau.

Not bad? How would you have said it? Jean-Baptiste Edward Guilinéau. Is it a little uptick on the end? I think that's called an exintogu.

Right. Right.

“So yeah, that's how I would have said it.”

But either way, I think we basically got it across through as a French physician from 1880. That's right. That's right. Yeah. And the origin of the actual term is from Greek, Narka, which is numbness or stupor, stupors,

one of my favorite words, and lepsis to attack or to seize. Right. So it's an attack of stupor, basically, is what he meant when he coined that term. And the reason Jean-Baptiste Edward Guilinéau came up with this is because of 36-year-old wine cast maker came to him and said, "Hey, I think there might be something wrong with

me.

What do you think?"

“And Guilinéau said, "I think I'm going to make my career on you, buddy."”

I did the math there a few average about two and a half minutes between the one to five. That's about eight hours of dozing. Okay. I'm really glad you said that Chuck, because this was something that I had no idea about. But if you take over a 24-hour period, somebody with Narka Lepsy and put their amount of sleep

next to somebody without Narka Lepsy, over 24 hours, it's going to wash out to roughly the same. Did you know that? I didn't know that. But does that mean that this guy does eight hours a day and then stayed up all night

or did he sleep in there five hours at night and just slept a lot? No. So that's one of the key reasons that there is such thing as excessive daytime sleepiness as part of Narka Lepsy.

It's that your sleep is so disrupted that it's basically spread out over 24 hours rather

than concentrated over eight hours at night. So they're up and awake in the middle of the night for very long periods, just like they fall asleep suddenly during the day. But if you put all those bouts of sleep together, even when they're trying at night and then when they can't help it during the day, it adds up to about the same that a person

without Narka Lepsy will sleep. That's my understanding. Now, that's pretty remarkable in this. Like the brains like, I'm getting sleep whether, whether you like it or not, we're making this happen at least by 24 hours we're going to have had enough.

And of course, you know, since this has been, you know, we're talking about the 1880s. There have been a lot of explanations over the years. Everyone from Freud to, you know, is about to say legitimate doctors have probably had been certain people. I like Freud.

I like Freud too, but I'm meant like, you know, never mind, sure.

But Freud, of course, said that sleep is an escape, and he said, you know, Narka Lepsy is a lot of times triggered by really intense emotions.

“So here's what I think it's just an extreme defense mechanism that lets you escape from”

those emotions. I love it. It's pretty Freudian. It's about his Freudian and explanation for anything as I've heard. It's just classic, right?

So of course, it's just utterly wrong, but I just think Freud's attempts at explaining the world were great and valuable in the way that like preserving classic art is. Yeah. I've been to his house. What?

Where? In Texas? Yeah. That's like when Freud house and in the Tyler Texas. There are a lot of Germans in Texas, although I know he was Austrian.

Yeah. I mean, I believe I saw it in Vienna if I'm not mistaken. That's neat. That is very neat. Was this when you were backpacking?

Yeah. Of course.

“You need to do a memoir of that time in your life and call it backpacking to Freud's”

house. Okay. Okay. So in the book, it'd just be shaped like a penis. Right.

Sometimes a book is just a book. That's right. So Freud missed the mark a little bit, but still it's, again, it's worth mentioning, just like appreciating art. It wasn't until the 60s where they're like, okay, I think we're starting to get some real

clues here.

And that was when they first established that people with narcolepsy enter REM sleep during

these bouts of narcolepsy, which you are not supposed to do. Under normal sleep patterns, which we talked about many, many times before, like you said, when you fall asleep, it should take you a little while to enter REM sleep. That's a deeper phase of your sleep pattern. With narcolepsy, they're out and into REM sleep so quickly that a different way to characterize

it that narcolepsy researchers put it is that REM activity, it intrudes into wakefulness, the line between being awake and being in deep REM sleep is that blurred for people with narcolepsy. Yeah, and I feel like I've occasionally in a really intense power nap had a dream, but that's only when it's, I don't get to nap anymore, but that's when I've just been so tired

that I just nap and fall asleep like immediately. That's neat. About you, do you feel refreshed when you wake up? I tend to nap longer when I would nap, so I wouldn't do the, when I say power nap, I don't mean the 20 minute disco nap. I mean, you really pout power through for a couple of hours.

I thought you were recounting some of your cocaine using days. No, no, no. I gotcha. So that was in the 60s, so they say, okay, REM and narcolepsy, they go together like chocolate and peanut butter, right?

But finally in the 90s, they're like really have started to figure it out and they've

zeroed in on the hypothalamus, and specifically a small cluster of cells in the rear of the hypothalamus that we'll talk about later. And if you learn about that and as far as narcolepsy goes, you can find it pretty convincing that we have begun at least to finally truly understand the cause of narcolepsy. Yeah, I totally agree, it's, they make a great case.

“Yeah, so if you want to talk to some initial stats, it occurs in all ethnic groups, it has”

equal incidents on the gender spectrum, evidently. Yeah, that's interesting. And yeah, because usually you would see it tilted one way or the other. Yeah, for sure.

And then as far as how often you're going to see this, it's in about 0.03 to 0.16% of

the gen pop or about 1 in 2,000 people. Yeah, which makes it, which classifies it as a rare disease, which by the way shout out to among several others, rare diseases.org for their take on narcolepsy was very instructive. Is it a disease or a disorder, or is it a fine line? Geez, I think because there's a brain dysfunction that it would be characterizes the disease.

Wouldn't you? I don't know, I still don't know the difference after all these years. So it was, I mean, when it was considered an REM sleep disorder, and maybe it still is, it was considered a parasomnia, like walking or whatever, so that would have been considered a disorder then, but I think it's a disease now.

Okay. Okay.

“If you want to take a break and come back and talk about what narcolepsy is?”

Yes. Okay.

We'll be right back, everybody.

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or a community of readers who love to think a little too much, you're in the right place. Listen to Pro's Society on the iHeart Radio app, Apple Podcasts, or wherever you get your podcasts. See you between the pages. OK, we're back, and it turns out Chuck that there are two types of narcolepsy, and just from all of the research that we've done over the years on interesting health stuff,

over time.

“Yeah, I agree, because we've seen that happen time and time again.”

We have narcolepsy type two, which is what we were talking about, sort of the more like when you think of narcolepsy, this is probably what you're thinking of at Laura falling and sleep during the middle of a sentence. Right, and it's type two because it's by far less prevalent than type one. And type one is narcolepsy like you think of with the daytime excessive daytime sleepiness.

But on top of that, there's something called cataplexi, too. And cataplexi can exist on its own. It's the just sudden loss of voluntary muscle function, like you can't keep your head up because your neck muscles just went limp, or your arms go limp, or something like that. And cataplexi can exist on its own.

It can exist in conjunction with other diseases, two or disorders. But it very frequently co-exist with narcolepsy. And one of the hallmarks of it from what I understand it, because it gets kind of confusing. And I couldn't fully find this out Chuck.

“But I think that it can exist in a person with narcolepsy, in conjunction with a sleep”

attack or separately to where you just suddenly like can't hold your head up anymore. The key is you're still conscious, conscious, oh my gosh, I just turned into an illiterate seventh grader, you're still conscious, you just, you might look like you've just fainted or something like that, depending on the severity of the cataplexic attack. Yeah, it's almost like a fainting goat, right?

Yes, very much like that. Almost exactly like that, because remember what the fainting goats, they would, basically, as fall over because they were startled, I think pretty much the same thing with cataplexi and humans, although it seems to be more associated with positive emotions. Yeah, it's so interesting.

Yeah, we're going to get into that. There are four symptoms of narcolepsy, which we're going to break down in a second. But they are excessive daytime sleepiness, like we've talked about. There is the cataplexi, there's sleep paralysis, and then hypnagogic hallucinations.

And if you have narcolepsy, you, well, there's about a 20 to 25 percent chance that you

have all four. And I don't think there's any rhyme or reason which ones you do have. But like we said, everybody has the excessive daytime sleepiness, and they're also talking about a fifth beetle. No, I was going to say that too.

Clarence? Was that his name? Yeah. Or I'll post that he was, too. The fifth symptom, which is disturbed, not turnl sleep, which about 50 percent of the patients

have.

“I think that will end up in there at some point.”

And technically, there may be a sixth one, too, which is called automatic behavior, where have you ever been like driving, and you're suddenly like five exits further than you thought you were, and you realize you just zoned out, and we're just driving just fine.

But you were, you were basically an autopilot?

I don't know, I mean, is that like the same as just daydreaming or maybe, I think so, but there's like no recollection of anything, you didn't note any landmarks that you just passed, or let's say you're gardening or something like that, you don't, you don't remember finishing digging the hole with the trial, it's, it's, you've just completed a task that you have, have no memory of, of undertaking.

I don't think that happens. Okay, so that's, it's happened to me before, but that's a symptom of, it's an additional syndrome, it's not a classic symptom, but they're starting to figure out that it is a symptom of narcolepsy, yes. So you're like, I just, I went in my garage one day, and I had built a penny-far thing.

Right. No memory of that. I would got there. So it usually starts out in adolescence, which surprised me, I did not know that I, just maybe because my, Laura characterized it as something, you got later in life, but they do

worsen with age, and maybe that does make sense after all. And sometimes your symptoms can be very steady, sometimes it can be months or years in between changes, and sometimes the symptoms change a lot to very quickly. Right. But the symptom that, again, a hundred percent of people with narcolepsy have is excessive

daytime sleepiness, and almost every case of narcolepsy, that is the first symptom that starts.

You almost never start with the other ones, it's that one first.

And that's exactly what you think of where somebody just falls asleep and they're out for a few seconds to a few minutes depending, and it's not going to be the same amount of time every time, they're not going to have the same number of sleep attacks every

A lot of it has to do with just how tired they are, like how poorly they slept the

“night before, that's going to make them more susceptible to sleep attacks during the day.”

And this is not the same as hitting the wall at three o'clock, because you ate lunch and all of your coffee from the morning war off. Yeah. Some resemblance to it, but this is, it is irresistible this urge to sleep or just sleep. It just comes on.

So that's, that's, that's the main characteristic of narcolepsy, but anybody who's kind of dozed off like sitting in a comfortable chair when it was, you know, a little warmer than normal at work or something like that, right? Like that is, it bears a resemblance to that specific symptom of narcolepsy. It's the other ones that you have in conjunction with that that really make narcolepsy

like, it's own disorder.

Have you ever slept at any job you've ever had?

It doesn't sound like me, but probably, I'm sure I'm sure I have at, you know, here there. Why you? Well, I mean, when I worked the midnight to 7 a.m. shift at the golden pantry in Athens, I had a regular routine of sleeping, yeah, because you were allowed to close up the store

and mop and do things for like an hour. So I would close up the store, go back in the back and lay down on a little pallet I made on top of a freezer. Nice. Did you get some good sleep?

I would. It was pretty hard sleep, and I will admit that when I had a baby, I took a nap or two right here in our own office. Oh, nice. What can you tell me where is it still a secret?

In one of the private telephone rooms, oh, that would be a good place to take a nap.

“If you've ever gone in there and seen a pillow, then in the camp stove, sleep machine?”

Yeah, there's no open bag of marshmallows and a stick. No, I took a couple of cat naps here at work, and such that I was like, you know what, some countries and companies embrace this, and there's a lot of value to knocking out for 20 or 30 minutes during a work day. Is that what that one HR email they sent out was all about?

Maybe. Did you try to convince them of that? Did you go to them and say, you know, some countries really embrace this? Why don't you guys be more continental? At least don't fire me.

Right. Yeah. So, yeah, so this is a kind of that, you know, falling asleep, but the key here is that it's unplanned and with narcolepsy, it is straight up irresistible. You know, like when you sit up and you like open your eyes a little bit, you're like, well,

I can't fall asleep. I got to say a wake because I'm being paid right now, like if you have narcolepsy, you can't do that.

“You just fall asleep and you're out and the other key is you feel really good and fresh”

right after one of those sleep attacks. Yeah, which is, it's weird to think that 10 seconds of that can refresh you. I know. It is very weird, but that's part of it for sure. So cataplexi, which we talked about, the fainting goat like thing, you mentioned positive

emotions can trigger it. Being surprised, laughter, elation, sometimes anger, which is not positive, but intense emotions like that can trigger this, and it can be everything from like you said your head just sort of nodding down to full on just collapsing. Yeah, which is called a drop attack, which are kind of dangerous.

You can banged up pretty bad because this is not necessarily you falling asleep or fainting or as a matter of fact, it's not that you're up your way. You're still totally conscious. You are, you just can't control your muscles at all of a sudden for a very short period of time.

Yeah, and interestingly, and which is a good news, which is good news is that as you get older cataplexi, you might actually improve. Yeah, that is good news, because taking a fall in the hallway at 80 years old is much different than at 18. For sure, let's see, oh, there's also sleep paralysis, which we did an entire episode

on. Yeah. It's not fun, it frequently is accompanied by hallucinations, which is another symptom we'll talk about next.

But sleep paralysis was first described by a physician who had a patient that presented

with narcolepsy, and this guy figured out there was such a thing. It's sleep paralysis, but it's basically when you're falling asleep or waking up, there's a few fleeting moments where you can't move at all. You're paralyzed, and it's not pleasant one bit. So if you are having a sleep attack and you're coming in and out of sleep, you know, a bunch

of times a day, and you feel paralyzed is you're coming in and out of sleep, and you don't

Yeah, as well hallucinations, these can come at the onset of sleep or at the end of sleep. They can be really scary, sometimes it could just be hearing a noise.

“What was the one thing we talked about at the time where we, you hear loud noise?”

Slowening head. That's right. Exploding head. Somehow, all this seems to be related somehow. Oh yeah.

Right? Yeah. I think a lot of it has to do with the neurons that we'll talk about in a little bit. So the hallucinations when they happen when you're waking up, they're called hypnopumpic, and when you're falling asleep, those are the hypnogogic that we mentioned earlier.

Yeah, and again, they very frequently accompany sleep paralysis and that like, you can't move and you're hallucinating a demon standing on your chest. Right. That's why you can't move. And again, this is happening to you many, many times a day against your will, and it makes

it unpleasant.

And then there's also something called disrupted nighttime sleep, which is basically

the exact polar opposite of excessive daytime sleepiness, or during the night when everybody else is asleep and when you wish you were sleeping, you might be wide awake. So that again, your sleep pattern is not concentrated into eight hours at night. It's spread out in about eight hours throughout a 24 hour period. That's right.

So we talked a lot about the various sort of explanations for this over the years. What they thought was going on, and that it wasn't until the 1990s that they kind of zeroed in and what they think is going on now, which to me, and you holds a lot of promise. But 1998 was the year that they finally discovered and isolated the chemical in the brain that seems to be the cause of all this, and it's called hypocreatin.

Hypocreatin? I want to say hypocreatin. How do you do? So let's do. Okay.

Let's. Hypocreatin. Yeah. So they isolated that, and we have our cousins the rats to thank for this, because they did a lot of rats tests and figured out from those tests just how this whole thing works, but what

they figured out is that hypocreatin has a few different functions, but its main function is maintaining wakefulness in us humans. And it is a peptide. It also has another name chart called Erexin, and it's the exact same neurochemical. But it would just happen to be discovered independently by two different groups at about the

same time. So it has two names still. They haven't settled on one. But it basically goes around and says, hey, serotonin, you're looking good. Here's a little boost.

Hey, nor epinephrine, you're looking great yourself. Here's another little boost. And so all of these neurochemicals that keep us awake and alert get a boost from hypocreatin so that they can do their job better. And what they found is that people with type one narcolepsy have about 90 to 95% fewer

of this very specialized cluster of neurons in the brain that are responsible for producing all of the hypocreatin in our bodies. Yeah, that's case closed, right?

“Basically, yeah, I think the only thing left to explain is too full.”

One exactly why the hypocreatin is the neurons that produce hypocreatin are so diminished and it seems like they basically explain that one and then too, what to do about it. That's the big one.

Yeah, and we should mention too that there are about 86 million, I'm sorry, billion neurons

in the brain and only about between 100 and 200,000 neurons produce hypocreatin. So it is a very specialized cluster of neural cells. Yeah, but it also makes it really vulnerable too and they're all in one space in the rear of the hypotheralamus. So it's really weird that evolution was like, well, it's fine.

This is a really, really, really important chemical, but we're just going to localize it right here in this one spot to just 100,000 neurons. Yeah, and it's also really weird that if you only have type two narcolepsy, you don't show any decrease in hypocreatin. Right, right, that's just the one where you have sleep attacks and not cataplexi.

“And it is really weird and that's why I was saying, like, I wonder if that's going to”

be broken out eventually in the future into its own disorder or disease, but the current thinking for that is that that is a less pronounced or less advanced case of type 1 narcolepsy

to where you're probably going to eventually get cataplexi or you may never get cataplexi,

Right.

That's what they think currently.

A lot of the sleepiness of narcolepsy, this, you know, it's a theory, at least, from researchers, is that it's a consequence of sleep state instability, and that's something that we've talked about before that threshold between being awake and being asleep in those lines getting blurred and crossing over. And I guess it must have been sleep paralysis that we talked about that.

“I think so, because that is, like, an example of, like, that is, like, wakefulness intruding”

on REM sleep. It's almost like the opposite of narcolepsy, people experiencing sleep paralysis without narcolepsy. It's going to like that.

But it's, it's, it's ultimately that.

It's a consequence of your brain no longer able to, um, being able to hold the switch down between the on-off switch between sleep and wakefulness, right? So it's like hypocritant is the, the thumb that holds the on-off switch in place without it. That switch is kind of hair trigger so that, um, it's just kind of, can shift back and forth

between on and off really easily and really quickly. Um, and so, without that hypocritant, that's, that you can just kind of go in between wakefulness and REM sleep with no transition and just at the drop of the hat, basically. So they think that that's it, that it is a, a lack of hypocritant that is responsible at least for type one narcolepsy, which is narcolepsy with cataplexi.

Do we take the break now?

Alright, let's take a break, uh, because we're going to get into our third act here with

“a very, what I think is the most interesting part of all this, which is what it has to”

do with your genes and your immune system right after this. If your service lads on, trust the text with the train that's us. 270 hours with zero complaining, they train under the hood, they train down in the pit. 270 hours means they're training's legit. It's the smart choice for smart folk and care for their steed.

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welcome home. This is Pro's Society, the weekly podcast that's Partbook Club, part group chat for thought daughters, pop culture obsessives, and anyone who thinks pride and prejudice and love island deserve the same level of discourse. I'm Eli Rallow, and every week, we're connecting the dots between books,

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This is super interesting to me because I feel like they're really zeroing in on

what's going on here with this research.

“Dude, how many episodes have we done on stuff like this?”

We're like, they think maybe this or studies or stuff, right? Coming, we have caught this at like peak ripeness. But before everybody knows that it's just so plain and obvious and it's been talked about so much, but right after all of these important advanced advancements in the study of it have really kind of come together in jailed.

I mean, it is perfectly fresh. Yeah, it is a very rare satisfying feeling. I feel satisfied myself.

So they think there's a genetic basis for narcolepsy,

but the genes that are involved in narcolepsy really aren't involved with sleep. It's about your immune system. So how it goes is a little something like this. All right, man. There are genes that code for these T cell receptors and the HLA gene,

human, leukocyte antigen, and not everyone has this variant, but if you do, you're going to have about a 25% greater chance of having narcolepsy. Yeah, that variant of the HLA gene. Very important. That's a big increase.

Yeah, 25% for real. Because a lot of those, they'll show like the relative increase. It increases your risk, you know, 80%, but if you look at the absolute increase, it's like, well, you know, you have 1.5 times the chance or something like that. 25 times likely or is definitely a huge increase for sure.

My hat is off to that one. Yeah, but so what they're thinking is that it's actually the basis of narcolepsy is an autoimmune disease and that is what's killing off. Your immune system is killing off those hypercureatin producing neurons. Yes, yes, just like Crohn's irritable bowel syndrome or rheumatoid arthritis,

it's your body turning on itself. It's mistaken, so it attacks itself. Your immune system attacks your own body and in this case, in the case of narcolepsy, they think that something about those hypercureatin producing neurons, I guess are producing something that seems like an antigen to your body if you have that

specific variant of that HLA gene and it attacks them, kills off those neurons. You don't have any hypercureatin any longer and so you can't maintain wakefulness. And so sleep and wakefulness just toggle back and forth throughout your day. Are you going to drop the streptococcus bomb? I think you should.

“I think I understand it, but just after the onset of narcolepsy,”

it looks like you have an increased level of antibodies against streptococcus and that's like streptwrote and their other infections involved. And so they've also tied that to the time of year. Narcolepsy usually begins in late spring and early summer, which would kind of make sense that there's an autoimmune attack going on against those neurons triggered by streptwrote

or some other kind of infection you get during the winter. Yeah, like your immune system just goes bonkers because it's strept. It's like what else? What else can I go after? I'm really primed and pumped. And for some reason it goes after your hypocreatin producing neurons in your hypothalamus. That's nuts.

So your immune response is triggered by an actual infection they think. And the reason why they think this, and it greatly pains me to reveal this, I know. But there is a vaccine called pandemorex that is no longer available anywhere in the world. But it was hot and heavy as a vaccine against H1N1 swine flu. And it was a really potent vaccine against H1N1 swine flu.

And some European northern European countries during the 2009-2011 swine flu pandemic

“chose to use this to enoculate their population with, right?”

Yeah. Well, there were reports that have been backed up by studies not just in Finland, which was a big place where this happened, but in other places like the UK did studies to that found the same results that there was a link between pandemorex and narcolepsy

that the pandemorex triggered that immune response that ultimately led to the immune system attacking

the hypocreatin producing neurons. So that H1N1 vaccine brought on a lifelong chronic case of narcolepsy. Yeah, that was hard to say, but yeah, it really was. I really, really hate saying stuff like that. I know, but you know what?

Like three, yeah, dozens of kids in Finland develop narcolepsy and I think the new rate

“of cases of narcolepsy and kids increased 8 to 12 fold and, you know, I think out of the 54”

kids who were diagnosed with narcolepsy 50 of them had the vaccine. So 50 out of 54. Yeah, and I mean, these, like these numbers are really, really small, but if you think about it, so four kids apparently in 2010 would have been diagnosed with narcolepsy, right? Had that pandemic not happened in that, or that particular vaccine not been administered, but because it was, the number was 54, not four. So even though the numbers, again,

absolutely are rather small, percentage wise, that's an enormous, a mind-boggling increase in the number of narcolepsy diagnoses. Yeah, and it was linked directly to that vaccine. Yeah, and they caught it. Yeah, and they caught it. I keep saying that.

And they caught it and it is no longer being given anywhere. It was never available in the United

States. Yeah. So Finland just sort of got the brunt of it. It seems like. Yeah, Finland, the UK had a bunch, their rate was one case of diagnosed narcolepsy for every

“55,000 inoculations in children, I think, six months to 18, but that washed out to like 16 people.”

Which still, I mean, if you're one of those people, you're like, well, son of a gun, that really sucks. But here's the key. And this is really, really important. And this is how we will be able to still use a vaccine that is viable and potent and works against swine flu without giving somebody narcolepsy. And that is personalized drugs based on gene tests. Yes, DNA tests. Because of those 50 kids in Finland that received the vaccine in 2010 that developed narcolepsy,

every single one of them carried that specific variant of the HLA gene that is tied to narcolepsy. So if you just did a simple DNA test, which hopefully will be widespread in just a few years, you'd say, oh, no, I'm glad we did this. You can't have pandemics. You might get narcolepsy.

Or basically, there's 100% chance you're going to get narcolepsy. We'll give you this other

vaccine instead that has been shown not to produce narcolepsy and people like you. That's right. And you can refer to our episode on personalized medicine. Yes. Right. We should do a follow-up on that one. Yeah, I agree. So that on the list for six years from now. So basically, you've got these genes that predispose you to your immune system mistakenly attacking that part of your hypothalamus. There has to be some sort of trigger, either an infection or pandemics,

something like that, typically an infection was stripped. And then there seem to be two age windows where you're particularly vulnerable around 15 and around 36. They have no idea about any of that. They just have, they're starting to put the state together. Yeah, I bet you'll figure that out too. Agreed. I really feel like narcolepsy is going to be like totally and completely figured out in the next decade. I cannot be more jazzed about it. Really? Yeah. No, the love site is just figuring

things out. You know, just doggedly, working and building on somebody else's work. It's a beautiful thing when it's done, right? Agreed. So if you are going to be diagnosed with narcolepsy, there are a couple of tests that they're going to give you. One is called an overnight polysom no gram. That's right, a PSG. And that is a test when you... It's one of those tests. It's

like a sleep study, is when you go in and sleep for them, basically. And sleep for me, baby.

Yeah, and they measure a lot of things. They measure your brain waves. They measure your heart rate. I movements, limb movements, muscle tone, respiration. Get a lot of info there. And then they'll say, now you're going to... This is going to be followed by the multiple sleep latency test, which also sounds kind of fun, because that measures how quickly you fall asleep for a nap

“every couple of hours during the day. I know, when you have to go in for when you're”

like, I got to go to a doctor's appointment, so it goes, oh, sorry. You can go, no, no, it's great. It's going to be the greatest day of my life. Yeah, those rooms make me sleepy. I can see some people being like, oh, I can't go sleep in a room. But I was well known as a child for following a sleep in like a dentist chair, waiting for the dentist to come in, or in a waiting room for, or not a waiting room, but in the exam room for a doctor,

I still get sleepy, and those just super clean, super cool, quiet rooms with fluorescent lighting.

during the day, they're going to see how fast you fall asleep. And if you fall asleep,

“if you have narcolepsy, you're going to fall asleep super easy, compared to someone”

without narcolepsy. Right, so that's a pretty big giveaway. If they're still like, I don't know, this is all this, you know, this person patient history that we've taken in these tests are inconclusive. They might test your cerebral spinal fluid, because hypocreatin levels are very easily tested through that. Not as fun. No, not nearly as fun, because they're going to go through the base of your skull, that hole in your skull where your spinal cord. Yeah.

Yeah, I know. I hope that that never befalls either one of us and anyone who's ever

had to go through that, we are very, very sorry. Yeah. But that also is looking like a place where they're trying to figure out how to cure narcolepsy. Because as it stands right now, if you're diagnosed with narcolepsy, you're just been given a lifelong chronic diagnosis.

“Yep. There's no cure for narcolepsy as it stands right now. But there are treatments.”

And from everything I read, if you are actively treating your narcolepsy through a doctor usually with prescriptions and also like behavioral modification, not like, you know, hooking you up to a car battery, changing your behavior like that, more like making sure you stick to like a good sleep pattern. Right. You can very much keep your symptoms in check for sure. It doesn't have to ruin your life. The trouble is that it's very frequently misdiagnosed and it's under diagnosed.

And they think it's because it occurs with so many co-morbidities like depression, where the doctor's like, well, sure you're falling asleep all day because you're just sitting around in the couch because you don't have any low energy, because you're depressed. Really, it's possible that you have developed depression because of the narcolepsy. Yeah. They haven't figured out if they're co-morbid or if the wine causes the other, but they're

pretty sure that the narcolepsy causes the depression. Yeah, you're probably going to get a prescription for something. Or it's probably likely to be a death in ill these days. When we talked about that, nar is science phasing out sleep episode. Yeah, we've done a bunch of sleep ones I forgot about that one. Riddle in, you might get, you know, it says in, you know, in the old days, methamphetamines, but they still prescribe a variation of speed for, I'm not sure

if it's narcolepsy, but I know an individual that was diagnosed with, I guess, just extreme daytime sleepiness. Not very sure as fast enough. Now, no, for falling a, or get just feeling really, really sleepy during the day and did the sleep study and all that. And they were prescribed

“kind of whatever the version of speed as these days. When was that, when were they prescribed that?”

Was that back in the 90s? Last year. Oh, really. I'm sometimes because from what I saw, madafanil is like, no, don't need anything else, just take madafanil. You don't get addicted to it.

They're very few side effects. It's supposed to just be like a wonder drug, basically.

Any time I hear that, I get dubious. You know, right, I think that's pretty, pretty smart, actually. They might also prescribe you anadepressant like an SSRI, which inhibits re-uptake a serotonin, which means you have more serotonin in your brain, which would make sense because what hypocreaten does is boost your levels of serotonin and other neurochemicals. So this is kind of going around that problem and just making you have more serotonin than before, which apparently helps maintain

REM sleep. The barrier between that and wakefulness a lot better. Yeah, and then the final thing, which is really interesting in promising is they did the sort of logical thing, which is, hey, maybe we can just get some more hypocreaten in your body. Because if that's the problem, why don't we just do that? We thought they could out fat hog legs of it for you at the doctor's office. There are different methods, cell transplantation, which is just implanting cells,

maybe implantation of the gene, like gene therapy, maybe just giving it through your nose or injecting it into your body. So what I'm saying? Or, or work, interest is sternly chuck, which is, again, through the base of the skull and the back of your head, where your spinal cord goes into your up to your brain. They can inject into your cerebral spinal fluid like that, too.

Yeah, probably the least fun of all of them, but they are, they're on the case basically,

is what that means. Yeah, and, you know, we've talked sort of often on throughout the

can besides just like holding a job and socially and not being depressed because you don't want

to hang out with people because you may be embarrassed by it. There's also like the very real chance of accidents. Some people are not allowed to drive. Some people are allowed to drive. It kind of depends on, I guess, your diagnosis. School is tricky. Work can be tricky, although they do, they do with the Americans with Disabilities Act. They provide for letting people take naps and stuff like that, which is kind of cool. It is. Yeah, if you have

narcolepsy and you're at work, you can say, hey, employer, I need some, I need a place to take a nap. And they'll say, okay, that's great. Well, say, right in here, and they're like, oh my god,

Chuck's in there. All right, Chuck. Sorry. There's, I mean, it gets even tighter, though,

like there are people who, who die by suicide from narcolepsy. There's a girl named Katie Clark, who got pandemics and developed narcolepsy as a result. And she ended up taking her life because she just, it's just completely derailed things for. She was in no way shape or form prepared for it, although I don't know of that. Anybody's prepared for it. And then also, like you were saying, an accident can happen. And from what I read, the risk of death in injury

among people with narcolepsy is almost twice that of the general population. Man. Through things like car accidents or, you know, cooking or going up a ladder or something like that, if you suddenly develop cataplexi or sleep attack or something, that's a bad time to fall a sleep or lose control of your muscles, you know. Well, and at the very least, you're going to have to really arrange your life to accommodate for this stuff. Right. You know? But again, if you are

“managing your symptoms, you can, you can lead a pretty normal life. I think it's just a question”

of like getting diagnosed correctly. Yeah. Yeah. Well, that's it for narcolepsy. Hopefully, we'll have it all figured out. And when we revisit it in five or 10 years, we'll be like, it was all right. Everything was correct. It was all right. And since I said it was all right, it's time for listening to me. I'm going to call this soul train feedback. Nice. And it was a fun show. And this is from Julia. Hello, guys. We really enjoyed your soul train episode. You did a great

job capturing the feeling and cultural significance of the show. You depicted a brilliant, flawed, Don Cornelius without negating his profound contribution. There was a monthly black teenage magazine named Right on. This publication gave names to the dances and dancers. We would read the ink off of the pages. Being black in America, then and now, we watch mainstream America love the culture while devaluing the people and criminalizing the young. Thank you for this episode. And that is

from Julia Pierce. The president of the Type-E MLK Human Rights Committee. Nice. Type-E Island, I guess, done in Georgia. I don't know. I guess so. I hope so. That's great. Thanks a lot, Julia.

“Much appreciated. Agreed. If you want to get in touch with us like Julia did, give us props or just say,”

hey, you guys are doing this too much or be quiet. We never will, but you can still say it.

You can send us an email to stuffpodcast. Did I hear radio.com? Stuff you should know is a production of iHeartRadio. For more podcasts, my heart radio visit the iHeartRadio app. Apple podcasts are wherever you listen to your favorite shows. I survived nine months in captivity and I've spent my life exploring how other people survived what should have destroyed them. I'm Elizabeth Smart and these are the survivor files.

Every week, I'm with survivors who live through the unthinkable, abducted, stocked, control, and nearly silenced. These are stories about what it takes to make it out alive. Listen to the survivor files with Elizabeth Smart on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts.

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Pro Society is a weekly podcast that's part book club, park group chat for anyone who thinks pride and prejudice and love island deserve the same level of discourse. Each week, working acting the dots between books, the internet, and pop culture with your favorite writers, booktop creators, and plenty of overthought opinions. Listen to Pro Society on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts. On the new podcast, Solita, we share the

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