How Narcolepsy Works

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 I've come to that is um watching my own private Idaho. What do you find that? Uh? Sleep inducing? No? No, they is. I think it's remember Phoenix or Keiana Reeves? Has I forgot about that? I thought you were saying it 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 in Cats

in the Middle. Now I have not seen the movie. Now, yeah, that's what I was wondering about. After having been on movie crush, I'm now I can't tell what's what anymore. What I said where? Uh So, my great aunt Laura had narcolepsy, which is my paternal grandmother's sister, and uh I only met her a few times. This is from my my dad's side of the like the Mississippi clan.

So I think I only I only remember going to Mississippi like once when I was a kid and visiting her, and I just remember my brother and I. This is my only memory of the 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 ten seconds later she would pick her head up and continue that sentence. Wow, like like without missing a beat or was there like uh oh you know that? Was she aware that she had just

fallen asleep and woken up. In my memory from being like ten 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? But your dad didn't prepare you for it. I don't remember. I blocked out, you know, purposely blocked out a lot of my childhood right right, So I don't know, but I hold it into the shuffle. That's the only thing

I remember it. It may be a child's memory that is a little trumped up, but um, that's how I remember it. Wow. Man, Well, yeah, I've never known anybody with NARCILEPSI, and um, based on that going into this whole episode, like I was just basically going in like I'm sure most of our listeners are where it's just like, yeah, somebody falls asleep in the middle of the day, they can't help it, and then they wake back up, and

who cares basically, you know. But the more that I've researched this some more, I'm like, you know, if it 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, um, maybe unable to hold

down a job or go to school. There's a it's actually a much um it's a much sadder condition than I think most people think of because it seems innocuous. It's just like, hey, 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. UM. I should also mention too that something that should not be confused

with narcolepsy is something that Emily's family has. Uh and I saw this when we would go to visit when they lived in Ohio, when he would stay at her parents house. Well, you know, eating, drinking during the day, such that by seven to eight o'clock at night every night, I would Emily and I would look around, We're watching TV and there are four usually three sleeping adults. And uh, I dubbed it the gas leak, which everyone in their family thought was hysterical. Right now, that's just play a

little funny. Yeah, that's that's not an earcalepsy at all. That's just you know, at what age does that start happening? Is what I want to know. Because I'm creeping up there, because I can still jam late into the night. I'm still you know, I might be sleepy 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 testostero and left. I don't think so well. I mean well, no, I mean, um like to have energy after you know, a certain time of day is I think I think you have a lot of test testerone, chuck, I would bet we're going to take you in for a test after this. Well, I feel like it. 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 to sleep, I'm like, all right, this is

my this is my time to shine. No, that's very fortunate man, that you're not just like this is my time to netflix and chill like you're getting stuff done. I'm envious of you for that because I get a little tired. But I definitely don't have an ourcalepsy. I'm just kind of like I'm somewhere between you and Emily's family. They guess the correct yeah, so uh. An oarcilepsy is Uh,

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, UM, so much so that I thought we might have actually covered this, but a quadruple checked and we have not. But UM, it's characterized by a few things. UM. One of the main tenants that basically everybody that has an eclepsy has what's called excessive daytime sleepiness. Right, that's what everybody thinks about

when you think of narclepsy. Somebody just falling asleep. They can't help it, they're just suddenly out, that's right. Yeah. They also call those, um sleep attacks. It's pretty cute. Um. And no matter what variation of narcalepsy you have, you have excessive daytime sleepiness E D yes, right, that's right. And UM, this is not you know, this is nothing new. We're just now sort of figuring it out a little

bit since the nineties, which we'll get to. But obviously this has been happening since there have been people, uh they they've probably been suffering from an eclepsy, you know, a small percentage of people. But it was first described in eight eight by a French physician named Jean Baptiste Eduard Guilleneo. Not bad. How would you have said it, Jean Baptiste dwar Jello? Is that is it a skip to put that little uptick on the end? I think that's called an exit agu right right, So yeah, that's

how I would have said it. But either way, I think we we basically got it across. He was a French physician from eighteen eighty that's the part. Yeah. And the origin of the actual term is from Greek narca, which is numbness or stupor. Stupor is one of my favorite words, and leipsis to attack or two seize, right, So it's an attack of stupor basically is what they

what he meant when he coined that term. And um, the reason Jean Baptiste dead Ward Jello came up with this is because the thirty six year old wine castmaker came to him and said, Hey, I think there might be something wrong with me. I follow as suddenly out of nowhere for one to five minutes, two hundred times a day every day. What do you think, Jelano said, I think I'm gonna make my career on you. Buddy,

I did the math there. If you 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 twenty four hour period somebody with narcolepsy and put their amount of sleep next to somebody without an ourcalepsy over twenty four hours, it's gonna wash out roughly the same. Did

you know that. I didn't know that. But does that mean that this guy dozed eight hours a day and then stayed up all night or did he sleep another five hours at night and just slept a lot. No. So that's one of the one of the key reasons that there is such thing as excessive daytime sleepiness as part of narcolepsy. It's that your sleep is so disrupted that it's basically spread out over twenty four hours rather

than concentrated over you know, 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 narcolepsy will sleep. That's my understanding. Now, that's pretty remarkable.

Like the brains like, I'm getting sleep, whether whether you like it or not, we're making this happen. At least by twenty four hours, we're gonna have had enough. Uh. And of course, you know, since this has been you know, we're talking about the eighties, there's been a lot of explanations over the years, everyone from Freud to you know, it's about say, legitimate doctors that probably would have been certain people like Freud. I like Freud too, but I

meant like, you know, um, never mind. Sure. But Freud of course said that sleep is an escape, and he said, you know, narcolepsy 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 as Freudian an explanation for anything as I've heard. It's just classic right,

of course, it's just utterly wrong. But I love. I just think Freud's attempts at explaining the world were great, invaluable in the way that like preserving classic art is. Yeah, I've been to his house. What where in Texas now? Yeah, the Sigmund Freud house and in uh 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're backpacking? Yeah, of

course you need to do him. M are of that time in your life and call it backpacking to Freud's house. Okay, okay, so in the book could just be shaped like a penis. Sometimes a book is just a book, that's right. So Freud missed the mark a little bit, but still again it's worth mentioning, just like appreciating art. It wasn't until the sixties 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 narcilepsy enter r e M sleep during these bouts of narcalepsy, 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 R E M sleep. That's a deeper phase of your sleep pattern. Right with with um narcilepsy, they're

out and into R E M sleep so quickly. That A different way to characterize it that that ECLEPSI researchers put it is that R E M activity it intrudes into wakefulness. The line between being awake and being in deep R E M 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 and I don't get to nap anymore. But that's when I've just been so tired that I

just napped and fall asleep like immediately. That's neat. I bet you do you feel refreshed when you wake up? M hmm. 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 twenty minute disco nap. I mean you really power power through for a couple of hours, right, I thought you were recounting some of your cocaine using days no, no, no, I got you. So that was

in the sixties. So they say, okay, R E M and and uh narc eilepsy they go together like chocolate and peanut butter. Right, we're onto something here. But finally in the nineties 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. So if you want to talk to some initial stats. It occurs in all ethnic groups. Uh, it has equal incidence uh 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. Um. And then as far as how often you're going to see this, it's in about point oh three to point one six percent of

gin pop or about one and two thousand people. Yeah, which makes it which classifies it as a rare disease, which, by the way, shout out to, among several others, Rare Diseases dot Org for their take on narcalypsy. It was very instructive. Is it a disease or a disorder? Geez? I think because there's a um a brain dysfunction, that it would be characterized as a 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 R. E. M. Sleep disorder and maybe it's still is. It was considered a paras omnia like sleep walking or whatever, So that would have been considered a disorder them. But I think it's a disease. Now, Okay, Okay, you want to take a break and come back and talk about what anarcalypsy is. Okay, we'll be right back. Everybody. Okay,

we're back. And it turns out, Chuck, that there are two types of narcilepsy, And just from all of the research that we've done over the years on interesting health stuff, this smells a lot to me like something that's going to be broken out into its own thing over time. Yeah,

I agree, because we've seen that happen time and time again. Um. We have narcilepsy type two, which is what we were talking about, the sort of the more like when you think of n earcilepsy, this is probably what you're thinking of Aunt Laura falling asleep during the middle of a sentence, right. And it's type two because it's um by far less prevalent than type one. And type one is narcolepsy like you'd think of with the daytime excessive daytime sleepiness. But

on top of that, there's something called cataplexy too. And cataplexy 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 cataplexy can exist on its own. It can exist in conjunction with other diseases to or disorders. Um, but it very

frequently coexists with narcolepsy. And one of the hallmarks of it from what I understand, because it gets it gets kind of confusing and I couldn't fully find this out, Chuck, but I 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. Just oh my god, I just turned into an illiterate seventh grader.

You're still conscious. You just you might look like you have 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 with the feinting goats, they would basically just fall over because they were startled. I think pretty much the same thing with catoplexy and humans, although it seems to be more associated with positive emotions. Yeah,

it's so interesting. Um yeah, we're gonna 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 cataplexy, their sleep sleep paralysis, and then hipnagogic hallucinations and um, if you have narcolepsy, you well there's about ants 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 beatle. I was gonna say that Clarence was that his name? Yeah? Or a Pooh said he was too. The fifth symptom, which is disturbed nocturnal sleep, which about of the patients have, but they haven't. I think that'll end up in there at some point. And technically there may be a sixth one to um, 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're you're basically on 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 pa uster. Let's say you're gardening or something like that, you don't you don't remember finishing digging the hole with a trowel. It's it's you've just completed a task that you have no memory of. Of undertaking. I don't think that happens. Okay, so that's what's happened to me before. But that's a symptom of of UM. It's an additional symptom. It's not a classic symptom, but they're starting to figure out that

it does. 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 farthing. No memory of that how it got there. So it usually starts out in adolescence, which surprised me. I did not know that, just maybe because my Laura characterized it as something you got later in life. But they do worsen with age, so 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 too very quickly. Right, um. But the symptom that, again a hundred percent of UM people with narcilepsy have is excessive daytime sleepiness. And in 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 time. 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. I mean, it bears some resemblance to it, but this is it is irresistible. Um, this urge to sleep or just sleep, it just comes on. So that's

that's a that's the main characteristic of an ecalepsy. 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 a it's 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 an ecolepsy like its 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 you know here there? Why you well? I mean when I worked the midnight to seven am shift at the Golden Pantry and Athens, I had a regular routine of sleeping. Yeah, because you're 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 uh, lay down on a a little palette I made on top of a free r n. Did you get some good sleep? I would? It was pretty hard sleep, and I will

admit that. Uh. 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, open bag of marshmell.

Isn't a stick now? I took a couple of cat naps here at work, and uh, such that I was like, you know what, some countries and companies embrace this and there's a lot of value to to knocking out for twenty or thirty minutes during the 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 race this. Why don't you guys be more more continental?

At least don't fire me? Right? Yeah? So yeah, so this is this is akin to that, you know, falling asleep. But the key here is that it's unplanned, and with narcilepsy 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 gotta I gotta stay a week because I'm being paid right now. Like if you have narcalypsy, you can't do that.

You just fall asleep and you're out. And the other key is you feel really good and freshed right after one of those sleep attacks, yeah, which is uh, it's it's weird to think that ten seconds of that can refresh you. I know, it is very weird, but that's part of it for sure. So cataplexy, which we've talked

about the fainting goat like thing. Um you mentioned positive emotions can trigger it, um, being surprised, laughter, elation, sometimes anger which is not pause sative, but intense emotions like that can triggered 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 get banged up pretty bad because this is not necessarily you falling asleep or fainting or as a matter of fact, it's not that. Yeah, you're up, your totally conscious, you are, Um, you just can't control your muscles 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, um, cataplexy amount actually improve. Yeah, that is good news because taking a fall in the hallway at you know, eighty years old is much different than an eighteen for sure. Um, let's see. Oh, there's also sleep paralysis, which we did an entire episode one. Um, it's not fun. It frequently is accompanied by hallucinations, with

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 as sleep paralysis. But it's basically, when you're falling asleep or waking up, there's a there's a like 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 as you're coming in and out of sleep, um, and you don't know what's going on, it can make the whole narcoleptic norcalyptic experience a lot more terrifying. Yeah, as well. Hallucinations, Um, these can come at the onset of sleep or at the end of sleep. Um. They can be really scary.

Sometimes it could just be hearing a noise. What was the one thing we talked about the time where we you hear a loud noise, explode head that's exploding head. Somehow, all this seems to be related somehow, right, Yeah, I think so. Yeah, I think a lot of it has to do with the neurons that we'll talk about in a little bit. So, Um, the hallucinations, when they happen when you're waking up, they're called hypno pompic, and when

you're falling asleep, those are the hypnagogic 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's 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, where 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 twenty four hour period. That's right. So we talked a lot about, um, the various sort of explanations for this over the years, UM, what they thought was going on, and that it wasn't until the nineteen nineties that they kind of zeroed in on what they think is going on now, which to me and you holds a lot of promise. Um. But 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 hypocretan. Hippocretan. I want to say, hypocretan, How do too? So let's do, okay, hypocretan. Yeah, So they isolated that and there we have our um cousins, the rats to thank for this, because they did a lot of rats tests and figured out from those tests just how um how this whole thing works. But what they figured out out is that hypocretan has some has a few different functions, but its main function is maintaining wakefulness in US humans. And it is a it's a peptide.

It also has another name, Chuck called orexin, 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, saratonin, you're looking good. Here's a little boost. Hey, Nora epinephrin,

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 hypocretan so that they can do their job better. And what they found is that people with type one narcolepsy UM have about nine fewer of this very specialized cluster of neurons in the brain that are responsible for producing all of the hypocretan in our bodies. Yeah, that's case closed, right basically. Yeah, I think the only

thing left to explain is two fold. One, exactly why the hypocretan is is um the hype the neurons that produce hypocreting are so diminished. And it seems like they've basically explained that one and then to what to do about it. That's the big one. Yeah, and we should mention too that UM, there are about eighty six million, I'm sorry billion neurons in the brain and only about between a hundred and two hundred thousand neurons produce hypocretan.

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 hypothalamus. So it's really weird that evolution was like, that's fine, this is a really really really important chemical, um, but we're just gonna localize it right here in this one

spot to just a hundred thousand neurons. Yeah. And it's also really weird that if you only have type two narcolepsy, you don't show any decrease in hypocretan right right when that's just the one where you have sleep attacks and not cataplexy. 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 is that that is a less pronounced or less advanced case of type one narcolepsy to where you're probably going to eventually get cataplexy, or you may never get cataplexy, but your your case of narcolepsy just stopped progressing at something point. That's what they think currently. UM. 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. Uh. And that's something I know we talked about before, that that threshold between being awake and being asleep and those lines getting blurred and crossing over. And I guess that must have been sleep paralysis that we talked about that. I think so because that's, um, that is like an example of like wait, that is like wakefulness intruding on R E M sleep. It's almost like the opposite of narcolepsy, people experiencing sleep paralysis without narcolepsy.

It's kind of like that, but it it's it's ultimately that it's a consequence of your brain no longer able to being able to hold the switch down between the on off switch between sleep and wakefulness. Right. So it's like hypocritin is the thumb that holds the on off switch in place. Without it, that switches 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 hypocrite and that's that you can just kind of go in between wakefulness and R E M sleep with no transition and just at the drop of a hat basically, so they think that that's it, that it is a a lack of hypocriting that is responsible at least for type one narcilepsy, which is narcilepsy

with cataplexy. Should we take the break now? Sure? All right, let's take a break 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. All right, so I promised talk of genes in your immune system. This is super interesting to me because I feel like they're really zero

zeroing in on what's going on here with this research. Dude, how many episodes have we done on stuff like this where we're like, they think maybe this or studies are started coming. We have caught this at like peak ripeness right 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 and gelled. I mean, it is perfectly fresh. Yeah, it is uh

a very rare satisfying feeling. I feel satisfied myself, so there. They think there's a genetic basis for narcilepsy, but the genes that are involved in our ecclepsy really aren't involved with sleep. It's about your immune system. Um, so how it goes is a little something like this there, alright, man, there are genes that code for these T cell receptors and the h l A gen human lucacite antigen, and not everyone has this variant, but if you do, you're

gonna have about a greater chance of having anarcilepsy. Yeah, that variant of the h l A gene very important. That's a big increase, Yeah, is for real because a lot of those will show like the relative increase, it increases your risk, you know, but if you look at the absolute increase, it's like well that you know, you have you know, one point five times the chance or something like that times likely or is definitely a huge increase. For sure. My hat is all 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 hypocreting producing neurons. Yes, yes, just like crones 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 an ecalepsy, they think that something about those hypocriting um hypocreting producing neurons I guess are producing something that seems like an antigen to your body. If you have that specific variant of that hl A Jean and attacks them, kills off those neurons. You don't have any hypocreting any longer, and so you can't maintain wakefulness, and so sleep and wakefulness just toggle back and forth throughout your day. Are

you gonna drop this stropped a caucus 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 streptocaucus and that's like strep throat, and there are other infections involved, and so they've also

tied that to the time of year. Uh A. Narcolepsy usually begins in late spring and early summer, which would kind of make sense that there's an autoimmunitat going on against those neurons triggered by strep throat or some other kind of infection you get during the winter. Yeah, like your immune system just goes bonkers because it's strap and 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 hypocretan 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 to to reveal this, I know. But there is a vaccine called endem Ricks that is

no longer available anywhere in the world. But it was hot and heavy as a vaccine against H one N one swine flu, and it was a really potent vaccine against H one N one swine flu, and some European Northern European countries during the two thousand nine to two thousand eleven swine flu pandemic chose to use this to inoculate their population with right. Well, there were reports that have been backed up by studies, not just in um 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 pandemics and narcolepsy, that the pandemics triggered that immune response that ultimately led to the immune system attacking the hypo cretan producing neurons, so that H one N one vaccine brought on a life long chronic case of narcolepsy. Yeah, I thought that was hard to say, what not? Yeah, it

really was. I really really hate saying stuff like that, I know, but you know what, you gotta we gotta preach the science, and the science appears valid. Here dozens of kids and um Finland developed narcolepsy, and I think the new rate of cases of narcilepsy and kids increased eight to twelvefold. And you know, I think out of the fifty four kids who are diagnosed with narcolepsy, fifty

of them had had the vaccine. So yeah, and I mean, these like these numbers are really really small, but if you think about it, so four kids apparently in two thousand and ten would have been diagnosed with narcolepsy had that pandemic not happened in that or that particular vaccine not been administered, but because it was, the number was fifty four, not four. So even though the numbers again absolutely are rather small percentage wise, there, that's an enormous,

a mind boggling increase in the number of NARCOLEPSI diagnoses. Yeah, and it was linked directly to that vaccine and they I keep saying that, and they caught it and it is no longer being given anywhere. It was never available in the United States. So, uh, Finland just sort of got the brunt of it. It seems like, yeah, Finland,

the UK had a bunch um. Their rate was one case of diagnosed and narcolepsy for every fifty five thousand UM inoculations and children I think six months to eighteen UM, but that washed out to like sixteen sixteen people UM, 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 po and works

against swine flu without giving somebody anarcilepsy. And that is personalized UM drugs based on gene tests UM DNA tests, Because of those fifty kids in Finland that received the vaccine in two thousand ten that developed narcolepsy, every single one of them carried that specific variant of the h l a 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 an arcilepsy, or basically there's a percent chance you're gonna get an ecolepsy. Um, we'll give you this other vaccine instead that that has been shown not to produce narcilepsy 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 gene that pre predispose you to um your immune system mistakenly attacking that part of your hypothalamus. There has to be some sort of trigger, either an infection or pandemics, um something like that. Typically, an infection was stripped and then there seemed to be two age windows where you're particularly vulnerable around fifteen and around thirty six. They have no idea about any of that.

They just have they're starting to put this data together. Yeah, I bet you they'll figure that out too, agreed. I really feel like narcolepsy is going to be like totally incompletely figured out in the next decade. I couldnot be more jazzed about it, really. Yeah. Love science just figuring things out, you know, just just doggedly, you know, working in building on you know, somebody else's work. It's just

it's a beautiful thing when it's done right. Agreed. So, if you are going to be diagnosed with narcolepsi, there are a couple of tests that they're going to give you. What is called an overnight uh Polly som no Graham, that's right, a p s g uh. And that is a test when you uh, it's one of those tests. It's like a sleep studies when you go in and sleep for them basically, and yeah, and they measure a

lot of things. They measure your brain waves, uh, they measure your heart rate, eye movements, limb movements, muscle tone, respiration. Get a lot of info there and then they'll say, now you're gonna this is gonna 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 gotta go to a doctor's appointment. Somebody goes, oh, sorry, you go no, No, it's great, It's gonna be the greatest day of my life. Yeah, those rooms make me sleepy. Um. I could see some people being like, I can't go sleep in a room, but I was well known as a child for falling asleep in like a dentist chair waiting for waiting for the dentist to come in. Um or in a in a waiting room for are 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. It just zaps me. Yeah, that's very odd, very odd. So, uh, four or five knap opportunities during the day, they're gonna see how fast you fall asleep, and if you followup, if you have narcalepsy, you're gonna fall asleep super easy UM compared to someone

without an earcalepsy. Right, so that's that's a pretty big giveaway. UM. 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 cerebro spinal fluid because UM hypocretan levels are very easily tested through that. No, not nearly as fun, because they're gonna go through the base of your skull, that hole in your skull where

your spinal cord. Yeah, I know. I hope that that never befalls either one of us into anyone who's ever had to go through that. We are very very sorry. UM. But that also is looking like a place where they're trying to figure out how to cure UH an ecolepsy, because as it stands right now, if you're diagnosed with narcilepsy,

you've just been given a lifelong chronic diagnosis. You know, there there's no cure for an eclepsy as it stands right now, but there are treatments and from everything I read, if you are actively treating your narcolepsy UM through a doctor usually with prescriptions and also like behavioral modification, not like you know, hooking you up to a car battery and changing your behavior like that, more like making sure

you stick to like a good sleep pattern. Um, you can very much keep your symptoms in check for sure. It doesn't have to ruin your life. The trouble is is that it's very frequently misdiagnosed and it's underdiagnosed, and they think it's because it's occurs UM with so many co morbidities like depression, where the doctors like, well, sure you're falling asleep all day because you're just sitting around on the couch, because you don't have any low energy

because you're depressed. Really, it's possible that you you have developed depression because of the narcilepsy. UM. They haven't figured out if they're co morbid or if the if one causes the other, but they're pretty sure that an arc eilepsy causes the depression. Yeah, you're probably going to get a prescription for something um it maybe or it's probably likely to be a daphanel these days. When we talked about that in Our is Science Phasing out sleep episode, Yeah,

we've done a bunch of sleep once. I forgot about that one riddling you might get uh, you know, it says you know, in the old days meth amphetamins. But they still prescribe a variation of speed for I'm not sure if it's an ecailepsy, but I know an individual that I was diagnosed with. I guess just it's dream daytime sleepiness. Not they're in chores fast enough, No, no for falling 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 was. When was that? When were they prescribed? That was at nineties last year? Oh? Really, I'm surprised because from what I saw, Madafanil is like, no, don't need anything else, just take me daffanel. You don't get addicted to it. There are very few side effects. Um, it's supposed to just be like a wonder drug basically.

Mm hmmm. I don't. Anytime I hear that, I get dubious, right, I think that's pretty pretty smart. Actually, Um, they might also prescribe you anidepressant like an ss r i um, which inhibits reuptake a serotonin, which means you have more serotonin in your brain, which would make sense because what hypocretan does is boost your levels of serotonin and other neurochemicals.

So this is kind of going around down that problem and just making you have more serotonin than before, which apparently helps maintain r E M sleep the barrier between that and wakefulness a lot better. Yeah. And then the final thing, which is really interesting and promising, is they did the sort of logical thing, which is, hey, maybe we can just get some more hypocreting in your body, because if that's the problem, why don't we just do that? So they cut out fat hauled legs of it for

you at the doctor's office. Uh. There are different methods. Cell transplantation, which is just implanting cells. Uh, maybe implantation of the gene like gene therapy. Maybe just giving it through your nose or injecting it into your body, That's what I'm saying, or interest sisternally chuck, which is again through the base of the skull in the back of your head where your spinal cord goes into your up to your brain. They and inject into your cerebro spinal

fluid like that too. It's 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 off and on throughout this thing about your quality of life with narcolepsy. Um, it's obviously a serious thing. There can besides just like holding a job and um, socially and not being depressed because you don't want to hang out with people because you may be embarrassed by it. Uh. There's also like the very real

chance of accidents. Um. Some people are not allowed to drive, some people are allowed to drive. It kind of depends on I guess your your diagnosis. Uh. School is tricky. Work can be tricky. Although they do UM 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 um you're at work, you can say, hey, employer, I need them, I need a place to take a nap, and they'll say, okay, that's great, let's say right in here, and they're like, oh my god, Chuck's in there, right, Chuck. The there's I mean it gets even sadder though, like there there are people who who um die by suicide

from uh narcolepsy. There was a girl named Katie Clack who got pandem riics and developed narcolepsy as a result, and she ended up taking her life, um because she just it just completely derailed things for um. She was in no way, shape or form prepared for it, although

I don't know that anybody's prepared for it. And then also, like you were saying, an accident can happen, and from what I read, um, the risk of death and injury among people with narcolepsy is almost twice that of the general population through things like car accidents or you know, cooking or going up a ladder or something like that. If you suddenly developed cataplexy or a sleep attack or something that's that's a bad time to fall asleep or

lose control of your muscles. You know. Well, and at the very least you're gonna 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, well that's it for ourclepsy. Hopefully we'll have it all figured out, and when we revisit it in five or ten years will 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 listener, mate, I'm gonna call this soul Train feedback. That 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 gating 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 Tybee MLK Human Rights Committee. Nice Tybee Island. I guess down in Georgia. I don't know, I guess so I hope. So that's great. Thanks a lot, Julia, I much appreciated. Agreed.

If you want to get in touch with this like Julia did. Give us props, or just say hey, you guys are doing this too much, or be quiet. Well, we never will, but you can still say it. You can send us an email to stuff podcast did i heeart radio dot com. Stuff you Should Know is a production of I Heart Radios How stuff Works. For more podcasts for my heart Radio, visit the I Heart Radio app, Apple Podcasts, or wherever you listen to your favorite shows. H