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How Narcolepsy Works · Stuff You Should Know

0:01
Speaker 1: Welcome to Stuff. You should know a production of My
0:03
Speaker 1: Heart Radios How Stuff Works. Hey you, and welcome to
0:12
Speaker 1: the podcast. I'm Josh Clark, and there's Charles W. Chuck
0:15
Speaker 1: Bryan over there, and uh, I still know Jerry Chuck
0:20
Speaker 1: wake up. Huh, We're gonna get some mail for that.
0:25
Speaker 1: Right off of the bath, I feel quite refreshed. So, Chuck,
0:29
Speaker 1: you might have an earcolepsy. Then if you just fell asleep,
0:32
Speaker 1: were you able to resist that urge to sleep just now? No?
0:36
Speaker 1: As soon as I heard, Hey, welcome to the podcast,
0:39
Speaker 1: I went lights out. I think that happens to a
0:42
Speaker 1: lot of people. Have you ever known anyone with narcolepsy?
0:47
Speaker 1: I haven't. The closest I've I've come to that is
0:50
Speaker 1: um watching my own private Idaho. What do you find that? Uh?
0:57
Speaker 1: Sleep inducing? No? No, they is. I think it's remember
1:02
Speaker 1: Phoenix or Keiana Reeves? Has I forgot about that? I
1:05
Speaker 1: thought you were saying it so boring you can't stay awake? No? No, No,
1:10
Speaker 1: that's Cats. Did you see that? No? Don't you remember that?
1:15
Speaker 1: I tried to make myself go to sleep in Cats
1:17
Speaker 1: in the Middle. Now I have not seen the movie. Now, yeah,
1:20
Speaker 1: that's what I was wondering about. After having been on
1:23
Speaker 1: movie crush, I'm now I can't tell what's what anymore.
1:26
Speaker 1: What I said where? Uh So, my great aunt Laura
1:32
Speaker 1: had narcolepsy, which is my paternal grandmother's sister, and uh
1:38
Speaker 1: I only met her a few times. This is from
1:39
Speaker 1: my my dad's side of the like the Mississippi clan.
1:43
Speaker 1: So I think I only I only remember going to
1:46
Speaker 1: Mississippi like once when I was a kid and visiting her,
1:49
Speaker 1: and I just remember my brother and I. This is
1:51
Speaker 1: my only memory of the visit is Scott and I
1:53
Speaker 1: sitting in a room talking with her and her being
1:57
Speaker 1: in the middle of a sentence and then her head
1:59
Speaker 1: falling down and then ten seconds later she would pick
2:03
Speaker 1: her head up and continue that sentence. Wow, like like
2:07
Speaker 1: without missing a beat or was there like uh oh
2:10
Speaker 1: you know that? Was she aware that she had just
2:11
Speaker 1: fallen asleep and woken up. In my memory from being
2:15
Speaker 1: like ten years old, she didn't miss a beat and
2:18
Speaker 1: just finished her sentence like right in the middle of
2:20
Speaker 1: a sentence and didn't mention it. And my brother and
2:22
Speaker 1: I were just like, what is going on here? But
2:25
Speaker 1: your dad didn't prepare you for it. I don't remember.
2:29
Speaker 1: I blocked out, you know, purposely blocked out a lot
2:31
Speaker 1: of my childhood right right, So I don't know, but
2:35
Speaker 1: I hold it into the shuffle. That's the only thing
2:39
Speaker 1: I remember it. It may be a child's memory that
2:42
Speaker 1: is a little trumped up, but um, that's how I
2:45
Speaker 1: remember it. Wow. Man, Well, yeah, I've never known anybody
2:49
Speaker 1: with NARCILEPSI, and um, based on that going into this
2:54
Speaker 1: whole episode, like I was just basically going in like
2:57
Speaker 1: I'm sure most of our listeners are where it's just like, yeah,
3:00
Speaker 1: somebody falls asleep in the middle of the day, they
3:02
Speaker 1: can't help it, and then they wake back up, and
3:05
Speaker 1: who cares basically, you know. But the more that I've
3:09
Speaker 1: researched this some more, I'm like, you know, if it
3:12
Speaker 1: even if it were just that alone, it would be
3:16
Speaker 1: pretty disruptive to your normal life, depending on how often
3:19
Speaker 1: it happened to you, you know, every day. But the
3:22
Speaker 1: fact is it's not just that alone, and there's a
3:25
Speaker 1: lot of extra symptoms to it that make it frightening
3:28
Speaker 1: or terrifying or depressing or just completely disruptive or make
3:31
Speaker 1: it so that you are, um, maybe unable to hold
3:34
Speaker 1: down a job or go to school. There's a it's
3:37
Speaker 1: actually a much um it's a much sadder condition than
3:41
Speaker 1: I think most people think of because it seems innocuous.
3:44
Speaker 1: It's just like, hey, you fall asleep here there, it's fine,
3:47
Speaker 1: you know, and it's not. It's there's a lot more
3:48
Speaker 1: to it than that. Yeah, for sure. UM. I should
3:51
Speaker 1: also mention too that something that should not be confused
3:55
Speaker 1: with narcolepsy is something that Emily's family has. Uh and
3:59
Speaker 1: I saw this when we would go to visit when
4:01
Speaker 1: they lived in Ohio, when he would stay at her
4:03
Speaker 1: parents house. Well, you know, eating, drinking during the day,
4:09
Speaker 1: such that by seven to eight o'clock at night every night,
4:13
Speaker 1: I would Emily and I would look around, We're watching
4:16
Speaker 1: TV and there are four usually three sleeping adults. And uh,
4:22
Speaker 1: I dubbed it the gas leak, which everyone in their
4:24
Speaker 1: family thought was hysterical. Right now, that's just play a
4:29
Speaker 1: little funny. Yeah, that's that's not an earcalepsy at all.
4:32
Speaker 1: That's just you know, at what age does that start happening?
4:36
Speaker 1: Is what I want to know. Because I'm creeping up there,
4:40
Speaker 1: because I can still jam late into the night. I'm
4:43
Speaker 1: still you know, I might be sleepy the next day,
4:45
Speaker 1: but that's my only time when I don't have a
4:49
Speaker 1: five year old, so I used that time. I can
4:53
Speaker 1: stay up still till midnight one in the morning. If
4:55
Speaker 1: I am doing something that's really neat, you must have
4:58
Speaker 1: a lot of testostero and left. I don't think so well.
5:03
Speaker 1: I mean well, no, I mean, um like to have
5:07
Speaker 1: energy after you know, a certain time of day is
5:11
Speaker 1: I think I think you have a lot of test testerone, chuck,
5:14
Speaker 1: I would bet we're going to take you in for
5:15
Speaker 1: a test after this. Well, I feel like it. I
5:18
Speaker 1: feel like it kicks back in. Like I'm sleepy sometimes
5:22
Speaker 1: during the day, but then when the night comes and
5:24
Speaker 1: my daughter's to sleep, I'm like, all right, this is
5:26
Speaker 1: my this is my time to shine. No, that's very
5:28
Speaker 1: fortunate man, that you're not just like this is my
5:30
Speaker 1: time to netflix and chill like you're getting stuff done.
5:33
Speaker 1: I'm envious of you for that because I get a
5:34
Speaker 1: little tired. But I definitely don't have an ourcalepsy. I'm
5:37
Speaker 1: just kind of like I'm somewhere between you and Emily's family.
5:44
Speaker 1: They guess the correct yeah, so uh. An oarcilepsy is Uh,
5:49
Speaker 1: it's a chronic disorder. It's a sleep disorder. And I
5:52
Speaker 1: know we've talked a little bit about this in some
5:55
Speaker 1: of our other sleep disorder episodes, UM, so much so
5:58
Speaker 1: that I thought we might have actually covered this, but
6:00
Speaker 1: a quadruple checked and we have not. But UM, it's
6:04
Speaker 1: characterized by a few things. UM. One of the main
6:07
Speaker 1: tenants that basically everybody that has an eclepsy has what's
6:11
Speaker 1: called excessive daytime sleepiness. Right, that's what everybody thinks about
6:15
Speaker 1: when you think of narclepsy. Somebody just falling asleep. They
6:18
Speaker 1: can't help it, they're just suddenly out, that's right. Yeah.
6:21
Speaker 1: They also call those, um sleep attacks. It's pretty cute. Um.
6:27
Speaker 1: And no matter what variation of narcalepsy you have, you
6:31
Speaker 1: have excessive daytime sleepiness E D yes, right, that's right.
6:35
Speaker 1: And UM, this is not you know, this is nothing new.
6:38
Speaker 1: We're just now sort of figuring it out a little
6:40
Speaker 1: bit since the nineties, which we'll get to. But obviously
6:44
Speaker 1: this has been happening since there have been people, uh
6:47
Speaker 1: they they've probably been suffering from an eclepsy, you know,
6:50
Speaker 1: a small percentage of people. But it was first described
6:54
Speaker 1: in eight eight by a French physician named Jean Baptiste
7:00
Speaker 1: Eduard Guilleneo. Not bad. How would you have said it,
7:05
Speaker 1: Jean Baptiste dwar Jello? Is that is it a skip
7:10
Speaker 1: to put that little uptick on the end? I think
7:13
Speaker 1: that's called an exit agu right right, So yeah, that's
7:18
Speaker 1: how I would have said it. But either way, I
7:20
Speaker 1: think we we basically got it across. He was a
7:22
Speaker 1: French physician from eighteen eighty that's the part. Yeah. And
7:26
Speaker 1: the origin of the actual term is from Greek narca,
7:31
Speaker 1: which is numbness or stupor. Stupor is one of my
7:33
Speaker 1: favorite words, and leipsis to attack or two seize, right,
7:38
Speaker 1: So it's an attack of stupor basically is what they
7:42
Speaker 1: what he meant when he coined that term. And um,
7:46
Speaker 1: the reason Jean Baptiste dead Ward Jello came up with
7:50
Speaker 1: this is because the thirty six year old wine castmaker
7:54
Speaker 1: came to him and said, Hey, I think there might
7:57
Speaker 1: be something wrong with me. I follow as suddenly out
8:00
Speaker 1: of nowhere for one to five minutes, two hundred times
8:04
Speaker 1: a day every day. What do you think, Jelano said,
8:10
Speaker 1: I think I'm gonna make my career on you. Buddy,
8:12
Speaker 1: I did the math there. If you average about two
8:15
Speaker 1: and a half minutes between the one to five, that's
8:17
Speaker 1: about eight hours of dozing. Okay. I'm really glad you
8:22
Speaker 1: said that, Chuck, because this was something that I had
8:24
Speaker 1: no idea about. But if you take over a twenty
8:28
Speaker 1: four hour period somebody with narcolepsy and put their amount
8:33
Speaker 1: of sleep next to somebody without an ourcalepsy over twenty
8:37
Speaker 1: four hours, it's gonna wash out roughly the same. Did
8:40
Speaker 1: you know that. I didn't know that. But does that
8:43
Speaker 1: mean that this guy dozed eight hours a day and
8:46
Speaker 1: then stayed up all night or did he sleep another
8:49
Speaker 1: five hours at night and just slept a lot. No.
8:52
Speaker 1: So that's one of the one of the key reasons
8:55
Speaker 1: that there is such thing as excessive daytime sleepiness as
8:57
Speaker 1: part of narcolepsy. It's that your sleep is so disrupted
9:01
Speaker 1: that it's basically spread out over twenty four hours rather
9:04
Speaker 1: than concentrated over you know, eight hours at night. So
9:08
Speaker 1: they're up and awake in the middle of the night
9:11
Speaker 1: for very long periods, just like they fall asleep suddenly
9:14
Speaker 1: during the day. But if you put all those bouts
9:17
Speaker 1: of sleep together, even when they're trying at night, and
9:20
Speaker 1: then when they can't help it during the day, it
9:22
Speaker 1: adds up to about the same that a person without
9:25
Speaker 1: narcolepsy will sleep. That's my understanding. Now, that's pretty remarkable.
9:31
Speaker 1: Like the brains like, I'm getting sleep, whether whether you
9:34
Speaker 1: like it or not, we're making this happen. At least
9:38
Speaker 1: by twenty four hours, we're gonna have had enough. Uh.
9:41
Speaker 1: And of course, you know, since this has been you know,
9:44
Speaker 1: we're talking about the eighties, there's been a lot of
9:46
Speaker 1: explanations over the years, everyone from Freud to you know,
9:50
Speaker 1: it's about say, legitimate doctors that probably would have been
9:53
Speaker 1: certain people like Freud. I like Freud too, but I
9:56
Speaker 1: meant like, you know, um, never mind. Sure. But Freud
10:02
Speaker 1: of course said that sleep is an escape, and he said,
10:06
Speaker 1: you know, narcolepsy is a lot of times triggered by
10:09
Speaker 1: really intense emotions. So here's what I think. It's just
10:13
Speaker 1: an extreme defense mechanism that lets you escape from those emotions.
10:17
Speaker 1: I love it. It's pretty Freudian. It's about as Freudian
10:22
Speaker 1: an explanation for anything as I've heard. It's just classic right,
10:26
Speaker 1: of course, it's just utterly wrong. But I love. I
10:30
Speaker 1: just think Freud's attempts at explaining the world were great,
10:33
Speaker 1: invaluable in the way that like preserving classic art is. Yeah,
10:38
Speaker 1: I've been to his house. What where in Texas now? Yeah,
10:43
Speaker 1: the Sigmund Freud house and in uh Tyler, Texas. There
10:47
Speaker 1: are a lot of Germans in Texas. Although I know
10:49
Speaker 1: he was Austrian. Yeah, I mean I believe I saw
10:52
Speaker 1: it in Vienna if I'm not mistaken. That's neat, that
10:55
Speaker 1: is very neat. Was this when you're backpacking? Yeah, of
10:58
Speaker 1: course you need to do him. M are of that
11:01
Speaker 1: time in your life and call it backpacking to Freud's house. Okay, okay,
11:08
Speaker 1: so in the book could just be shaped like a penis.
11:12
Speaker 1: Sometimes a book is just a book, that's right. So
11:15
Speaker 1: Freud missed the mark a little bit, but still again
11:18
Speaker 1: it's worth mentioning, just like appreciating art. It wasn't until
11:22
Speaker 1: the sixties where they're like, okay, I think we're starting
11:25
Speaker 1: to get some real clues here. And that was when
11:27
Speaker 1: they first established that people with narcilepsy enter r e
11:33
Speaker 1: M sleep during these bouts of narcalepsy, which you are
11:37
Speaker 1: not supposed to do under normal sleep. Patterns which we
11:41
Speaker 1: talked about many many times before. Like you said, when
11:43
Speaker 1: you fall asleep, it should take you a little while
11:46
Speaker 1: to enter R E M sleep. That's a deeper phase
11:49
Speaker 1: of your sleep pattern. Right with with um narcilepsy, they're
11:53
Speaker 1: out and into R E M sleep so quickly. That
11:57
Speaker 1: A different way to characterize it that that ECLEPSI researchers
12:01
Speaker 1: put it is that R E M activity it intrudes
12:05
Speaker 1: into wakefulness. The line between being awake and being in
12:10
Speaker 1: deep R E M sleep is that blurred for people
12:14
Speaker 1: with narcolepsy. Yeah, And I feel like I've occasionally, in
12:18
Speaker 1: a really intense power nap had a dream, but that's
12:22
Speaker 1: only when it's and I don't get to nap anymore.
12:25
Speaker 1: But that's when I've just been so tired that I
12:28
Speaker 1: just napped and fall asleep like immediately. That's neat. I
12:32
Speaker 1: bet you do you feel refreshed when you wake up?
12:34
Speaker 1: M hmm. I tend to nap longer when I would nap,
12:37
Speaker 1: so I wouldn't do the When I say power nap,
12:40
Speaker 1: I don't mean the twenty minute disco nap. I mean
12:42
Speaker 1: you really power power through for a couple of hours, right,
12:46
Speaker 1: I thought you were recounting some of your cocaine using
12:48
Speaker 1: days no, no, no, I got you. So that was
12:52
Speaker 1: in the sixties. So they say, okay, R E M
12:54
Speaker 1: and and uh narc eilepsy they go together like chocolate
12:57
Speaker 1: and peanut butter. Right, we're onto something here. But finally
13:01
Speaker 1: in the nineties they're like really have started to figure
13:04
Speaker 1: it out, and they've zeroed in on the hypothalamus and
13:07
Speaker 1: specifically a small cluster of cells in the rear of
13:11
Speaker 1: the hypothalamus that we'll talk about later. And if you
13:15
Speaker 1: learn about that and as far as narcolepsy goes, you
13:18
Speaker 1: can find it pretty convincing that we have begun at
13:21
Speaker 1: least to finally truly understand the cause of narcolepsy. Yeah,
13:25
Speaker 1: I totally agree. It's they make a great case. So
13:29
Speaker 1: if you want to talk to some initial stats. It
13:32
Speaker 1: occurs in all ethnic groups. Uh, it has equal incidence
13:36
Speaker 1: uh on the gender spectrum. Evidently. Yeah, that's interesting. And yeah,
13:41
Speaker 1: because usually you would see it tilted one way or
13:44
Speaker 1: the other. Yeah, for sure. Um. And then as far
13:48
Speaker 1: as how often you're going to see this, it's in
13:51
Speaker 1: about point oh three to point one six percent of
13:55
Speaker 1: gin pop or about one and two thousand people. Yeah,
13:59
Speaker 1: which makes it which classifies it as a rare disease, which,
14:02
Speaker 1: by the way, shout out to, among several others, Rare
14:06
Speaker 1: Diseases dot Org for their take on narcalypsy. It was
14:11
Speaker 1: very instructive. Is it a disease or a disorder? Geez?
14:16
Speaker 1: I think because there's a um a brain dysfunction, that
14:20
Speaker 1: it would be characterized as a disease, wouldn't you. I
14:24
Speaker 1: don't know. I still don't know the difference after all
14:25
Speaker 1: these years. So it was I mean, when it was
14:29
Speaker 1: considered an R. E. M. Sleep disorder and maybe it's
14:32
Speaker 1: still is. It was considered a paras omnia like sleep
14:35
Speaker 1: walking or whatever, So that would have been considered a
14:37
Speaker 1: disorder them. But I think it's a disease. Now, Okay, Okay,
14:42
Speaker 1: you want to take a break and come back and
14:44
Speaker 1: talk about what anarcalypsy is. Okay, we'll be right back. Everybody. Okay,
15:18
Speaker 1: we're back. And it turns out, Chuck, that there are
15:21
Speaker 1: two types of narcilepsy, And just from all of the
15:25
Speaker 1: research that we've done over the years on interesting health stuff,
15:29
Speaker 1: this smells a lot to me like something that's going
15:32
Speaker 1: to be broken out into its own thing over time. Yeah,
15:35
Speaker 1: I agree, because we've seen that happen time and time again. Um.
15:39
Speaker 1: We have narcilepsy type two, which is what we were
15:42
Speaker 1: talking about, the sort of the more like when you
15:45
Speaker 1: think of n earcilepsy, this is probably what you're thinking
15:47
Speaker 1: of Aunt Laura falling asleep during the middle of a sentence, right.
15:52
Speaker 1: And it's type two because it's um by far less
15:56
Speaker 1: prevalent than type one. And type one is narcolepsy like
16:01
Speaker 1: you'd think of with the daytime excessive daytime sleepiness. But
16:06
Speaker 1: on top of that, there's something called cataplexy too. And
16:09
Speaker 1: cataplexy can exist on its own. It's the just sudden
16:13
Speaker 1: loss of voluntary muscle function, like you can't keep your
16:16
Speaker 1: head up because your neck muscles just went limp, or
16:19
Speaker 1: your arms go limp or something like that. And cataplexy
16:24
Speaker 1: can exist on its own. It can exist in conjunction
16:26
Speaker 1: with other diseases to or disorders. Um, but it very
16:31
Speaker 1: frequently coexists with narcolepsy. And one of the hallmarks of
16:35
Speaker 1: it from what I understand, because it gets it gets
16:38
Speaker 1: kind of confusing and I couldn't fully find this out, Chuck,
16:42
Speaker 1: but I I think that it can exist in a
16:47
Speaker 1: person with narcolepsy in conjunction with a sleep attack or
16:52
Speaker 1: separately to where you just suddenly like can't hold your
16:56
Speaker 1: head up anymore. The key is you're still conscious. Just
17:00
Speaker 1: oh my god, I just turned into an illiterate seventh grader.
17:05
Speaker 1: You're still conscious. You just you might look like you
17:08
Speaker 1: have just fainted or something like that, depending on the
17:11
Speaker 1: severity of the cataplexic attack. Yeah, it's almost like a
17:14
Speaker 1: fainting goat, right, Yes, very much like that, Almost exactly
17:19
Speaker 1: like that, because remember with the feinting goats, they would
17:23
Speaker 1: basically just fall over because they were startled. I think
17:26
Speaker 1: pretty much the same thing with catoplexy and humans, although
17:28
Speaker 1: it seems to be more associated with positive emotions. Yeah,
17:31
Speaker 1: it's so interesting. Um yeah, we're gonna get into that.
17:34
Speaker 1: There are four symptoms of narcolepsy, which we're going to
17:38
Speaker 1: break down in a second. But they are excessive daytime
17:42
Speaker 1: sleepiness like we've talked about. There is the cataplexy, their
17:47
Speaker 1: sleep sleep paralysis, and then hipnagogic hallucinations and um, if
17:54
Speaker 1: you have narcolepsy, you well there's about ants that you
18:00
Speaker 1: have all four and I don't think there's any rhyme
18:03
Speaker 1: or reason which ones you do have. But like we said,
18:08
Speaker 1: everybody has the excessive daytime sleepiness. And they're also talking
18:11
Speaker 1: about a fifth beatle. I was gonna say that Clarence
18:17
Speaker 1: was that his name? Yeah? Or a Pooh said he
18:21
Speaker 1: was too. The fifth symptom, which is disturbed nocturnal sleep,
18:26
Speaker 1: which about of the patients have, but they haven't. I
18:29
Speaker 1: think that'll end up in there at some point. And
18:31
Speaker 1: technically there may be a sixth one to um, which
18:34
Speaker 1: is called automatic behavior. Where have you ever been like
18:37
Speaker 1: driving and you're suddenly like five exits further than you
18:41
Speaker 1: thought you were, and you realize you just zoned out
18:44
Speaker 1: and we're just driving just fine, but you were, You're
18:47
Speaker 1: you're basically on autopilot. I don't know. I mean, is
18:51
Speaker 1: that like the same as just daydreaming or maybe I
18:54
Speaker 1: think so. But there's like no recollection of anything. You
18:57
Speaker 1: didn't note any landmarks that you just pa uster. Let's
19:00
Speaker 1: say you're gardening or something like that, you don't you
19:02
Speaker 1: don't remember finishing digging the hole with a trowel. It's
19:06
Speaker 1: it's you've just completed a task that you have no
19:10
Speaker 1: memory of. Of undertaking. I don't think that happens. Okay,
19:15
Speaker 1: so that's what's happened to me before. But that's a
19:17
Speaker 1: symptom of of UM. It's an additional symptom. It's not
19:21
Speaker 1: a classic symptom, but they're starting to figure out that
19:23
Speaker 1: it does. It is a symptom of narcolepsy. Yes, so
19:26
Speaker 1: you're like, I just I went in my garage one
19:27
Speaker 1: day and I had built a penny farthing. No memory
19:31
Speaker 1: of that how it got there. So it usually starts
19:35
Speaker 1: out in adolescence, which surprised me. I did not know that,
19:40
Speaker 1: just maybe because my Laura characterized it as something you
19:43
Speaker 1: got later in life. But they do worsen with age,
19:46
Speaker 1: so maybe that does make sense after all. And sometimes
19:49
Speaker 1: your symptoms can be very steady. Sometimes it can be
19:53
Speaker 1: months or years in between changes, and sometimes the symptoms
19:57
Speaker 1: change a lot too very quickly. Right, um. But the
20:01
Speaker 1: symptom that, again a hundred percent of UM people with
20:04
Speaker 1: narcilepsy have is excessive daytime sleepiness. And in almost every
20:09
Speaker 1: case of narcolepsy, that is the first symptom that starts.
20:13
Speaker 1: You almost never start with the other ones. It's that
20:15
Speaker 1: one first, And that's exactly what you think of where
20:19
Speaker 1: somebody just falls asleep and they're out for a few
20:23
Speaker 1: seconds to a few minutes, depending And it's not going
20:26
Speaker 1: to be the same amount of time every time. They're
20:28
Speaker 1: not going to have the same number of sleep attacks
20:31
Speaker 1: every time. A lot of it has to do with
20:34
Speaker 1: just how tired they are, like how poorly they slept
20:37
Speaker 1: the night before. That's going to make them more susceptible
20:39
Speaker 1: to sleep attacks during the day. And this is not
20:42
Speaker 1: the same as hitting the wall at three o'clock because
20:45
Speaker 1: you ate lunch and all of your coffee from the
20:47
Speaker 1: morning war off. I mean, it bears some resemblance to it,
20:51
Speaker 1: but this is it is irresistible. Um, this urge to
20:56
Speaker 1: sleep or just sleep, it just comes on. So that's
20:59
Speaker 1: that's a that's the main characteristic of an ecalepsy. But
21:03
Speaker 1: anybody who's kind of dozed off, like sitting in a
21:06
Speaker 1: comfortable chair when it was you know, a little warmer
21:09
Speaker 1: than normal at work or something like that, right like
21:12
Speaker 1: that is a it's it bears a resemblance to that
21:15
Speaker 1: specific symptom of narcolepsy. It's the other ones that you
21:18
Speaker 1: have in conjunction with that that really make an ecolepsy
21:21
Speaker 1: like its own disorder. Have you ever slept at any
21:26
Speaker 1: job you've ever had? It doesn't sound like me, but
21:34
Speaker 1: probably I'm sure. I'm sure I have you know here there?
21:38
Speaker 1: Why you well? I mean when I worked the midnight
21:41
Speaker 1: to seven am shift at the Golden Pantry and Athens,
21:44
Speaker 1: I had a regular routine of sleeping. Yeah, because you're
21:49
Speaker 1: allowed to close up the store and mop and do
21:50
Speaker 1: things for like an hour. So I would close up
21:53
Speaker 1: the store, go back in the back, and uh, lay
21:56
Speaker 1: down on a a little palette I made on top
21:59
Speaker 1: of a free r n. Did you get some good sleep?
22:04
Speaker 1: I would? It was pretty hard sleep, and I will
22:06
Speaker 1: admit that. Uh. When I had a baby, I took
22:11
Speaker 1: a nap or two right here in our own office.
22:15
Speaker 1: Oh nice, what can you tell me? Where is it
22:17
Speaker 1: still a secret? In one of the private telephone rooms. Oh,
22:21
Speaker 1: that would be a good place to take a nap,
22:24
Speaker 1: if you've ever gone in there and seen a pillow.
22:26
Speaker 1: Then in the camp stove, sleep machine, open bag of marshmell.
22:34
Speaker 1: Isn't a stick now? I took a couple of cat
22:37
Speaker 1: naps here at work, and uh, such that I was like,
22:41
Speaker 1: you know what, some countries and companies embrace this and
22:45
Speaker 1: there's a lot of value to to knocking out for
22:48
Speaker 1: twenty or thirty minutes during the work day. Is that
22:51
Speaker 1: what that one hr email they sent out was all about? Maybe?
22:54
Speaker 1: Did you try to convince them of that? Did you
22:57
Speaker 1: go to them and say, you know, some countries really
23:00
Speaker 1: race this. Why don't you guys be more more continental?
23:04
Speaker 1: At least don't fire me? Right? Yeah? So yeah, so
23:08
Speaker 1: this is this is akin to that, you know, falling asleep.
23:13
Speaker 1: But the key here is that it's unplanned, and with
23:16
Speaker 1: narcilepsy it is straight up irresistible, you know, like when
23:19
Speaker 1: you sit up and you like open your eyes a
23:21
Speaker 1: little bit, You're like, well, I can't fall asleep. I
23:22
Speaker 1: gotta I gotta stay a week because I'm being paid
23:25
Speaker 1: right now. Like if you have narcalypsy, you can't do that.
23:27
Speaker 1: You just fall asleep and you're out. And the other
23:31
Speaker 1: key is you feel really good and freshed right after
23:35
Speaker 1: one of those sleep attacks, yeah, which is uh, it's
23:38
Speaker 1: it's weird to think that ten seconds of that can
23:41
Speaker 1: refresh you. I know, it is very weird, but that's
23:45
Speaker 1: part of it for sure. So cataplexy, which we've talked
23:48
Speaker 1: about the fainting goat like thing. Um you mentioned positive
23:52
Speaker 1: emotions can trigger it, um, being surprised, laughter, elation, sometimes
23:59
Speaker 1: anger which is not pause sative, but intense emotions like
24:02
Speaker 1: that can triggered this. And it can be everything from
24:06
Speaker 1: like you said, your head just sort of nodding down
24:08
Speaker 1: to full on just collapsing, yeah, which is called a
24:12
Speaker 1: drop attack, which are kind of dangerous. You can get
24:15
Speaker 1: banged up pretty bad because this is not necessarily you
24:19
Speaker 1: falling asleep or fainting or as a matter of fact,
24:21
Speaker 1: it's not that. Yeah, you're up, your totally conscious, you are, Um,
24:27
Speaker 1: you just can't control your muscles all of a sudden
24:29
Speaker 1: for a very short period of time. Yeah. And interestingly,
24:33
Speaker 1: and which is a good news, which is good news
24:36
Speaker 1: is that as you get older, um, cataplexy amount actually improve. Yeah,
24:41
Speaker 1: that is good news because taking a fall in the
24:44
Speaker 1: hallway at you know, eighty years old is much different
24:46
Speaker 1: than an eighteen for sure. Um, let's see. Oh, there's
24:51
Speaker 1: also sleep paralysis, which we did an entire episode one. Um,
24:55
Speaker 1: it's not fun. It frequently is accompanied by hallucinations, with
25:00
Speaker 1: which is another symptom we'll talk about next. But sleep
25:02
Speaker 1: paralysis was first described by a physician who had a
25:06
Speaker 1: patient that presented with narcolepsy, and this guy figured out
25:10
Speaker 1: there was such a thing as sleep paralysis. But it's basically,
25:13
Speaker 1: when you're falling asleep or waking up, there's a there's
25:16
Speaker 1: a like a few fleeting moments where you can't move
25:20
Speaker 1: at all. You're paralyzed, and it's not pleasant one bit.
25:24
Speaker 1: So if you are having a sleep attack and you're
25:27
Speaker 1: coming in and out of sleep, you know, a bunch
25:30
Speaker 1: of times a day, and you feel paralyzed as you're
25:32
Speaker 1: coming in and out of sleep, um, and you don't
25:35
Speaker 1: know what's going on, it can make the whole narcoleptic
25:38
Speaker 1: norcalyptic experience a lot more terrifying. Yeah, as well. Hallucinations, Um,
25:45
Speaker 1: these can come at the onset of sleep or at
25:48
Speaker 1: the end of sleep. Um. They can be really scary.
25:51
Speaker 1: Sometimes it could just be hearing a noise. What was
25:54
Speaker 1: the one thing we talked about the time where we
25:56
Speaker 1: you hear a loud noise, explode head that's exploding head. Somehow,
26:03
Speaker 1: all this seems to be related somehow, right, Yeah, I
26:08
Speaker 1: think so. Yeah, I think a lot of it has
26:10
Speaker 1: to do with the neurons that we'll talk about in
26:12
Speaker 1: a little bit. So, Um, the hallucinations, when they happen
26:16
Speaker 1: when you're waking up, they're called hypno pompic, and when
26:21
Speaker 1: you're falling asleep, those are the hypnagogic that we mentioned earlier. Yeah,
26:25
Speaker 1: and again they very frequently accompany sleep paralysis, and that
26:28
Speaker 1: like you can't move and you're hallucinating a demon standing
26:31
Speaker 1: on your chest, right, that's why you can't move. And
26:35
Speaker 1: again this is happening to you many many times a
26:38
Speaker 1: day against your will, and it's it makes it unpleasant.
26:43
Speaker 1: And then there's also something called disrupted nighttime sleep, which
26:47
Speaker 1: is basically the exact polar opposite of excessive daytime sleepiness,
26:52
Speaker 1: where during the night, when everybody else is asleep and
26:54
Speaker 1: when you wish you were sleeping, you might be wide awake.
26:58
Speaker 1: So that again your sleep pattern is not concentrated into
27:01
Speaker 1: eight hours at night, it's spread out in about eight
27:04
Speaker 1: hours throughout a twenty four hour period. That's right. So
27:09
Speaker 1: we talked a lot about, um, the various sort of
27:12
Speaker 1: explanations for this over the years, UM, what they thought
27:16
Speaker 1: was going on, and that it wasn't until the nineteen
27:19
Speaker 1: nineties that they kind of zeroed in on what they
27:21
Speaker 1: think is going on now, which to me and you
27:23
Speaker 1: holds a lot of promise. Um. But was the year
27:28
Speaker 1: that they finally discovered and isolated the chemical in the
27:32
Speaker 1: brain that seems to be the cause of all this,
27:34
Speaker 1: and it's called hypocretan. Hippocretan. I want to say, hypocretan,
27:41
Speaker 1: How do too? So let's do, okay, hypocretan. Yeah, So
27:46
Speaker 1: they isolated that and there we have our um cousins,
27:50
Speaker 1: the rats to thank for this, because they did a
27:52
Speaker 1: lot of rats tests and figured out from those tests
27:55
Speaker 1: just how um how this whole thing works. But what
27:59
Speaker 1: they figured out out is that hypocretan has some has
28:05
Speaker 1: a few different functions, but its main function is maintaining
28:08
Speaker 1: wakefulness in US humans. And it is a it's a peptide.
28:13
Speaker 1: It also has another name, Chuck called orexin, and it's
28:16
Speaker 1: the exact same neurochemical. But it would just happen to
28:20
Speaker 1: be discovered independently by two different groups at about the
28:23
Speaker 1: same time, so it has two names. Still they haven't
28:26
Speaker 1: settled on one. But it basically goes around and says, hey, saratonin,
28:30
Speaker 1: you're looking good. Here's a little boost. Hey, Nora epinephrin,
28:34
Speaker 1: you're looking great yourself. Here's another little boost. And so
28:36
Speaker 1: all of these neurochemicals that keep us awake and alert
28:40
Speaker 1: get a boost from hypocretan so that they can do
28:45
Speaker 1: their job better. And what they found is that people
28:48
Speaker 1: with type one narcolepsy UM have about nine fewer of
28:56
Speaker 1: this very specialized cluster of neurons in the brain that
28:59
Speaker 1: are responsible for producing all of the hypocretan in our bodies. Yeah,
29:04
Speaker 1: that's case closed, right basically. Yeah, I think the only
29:08
Speaker 1: thing left to explain is two fold. One, exactly why
29:13
Speaker 1: the hypocretan is is um the hype the neurons that
29:17
Speaker 1: produce hypocreting are so diminished. And it seems like they've
29:21
Speaker 1: basically explained that one and then to what to do
29:23
Speaker 1: about it. That's the big one. Yeah, and we should
29:25
Speaker 1: mention too that UM, there are about eighty six million,
29:29
Speaker 1: I'm sorry billion neurons in the brain and only about
29:33
Speaker 1: between a hundred and two hundred thousand neurons produce hypocretan.
29:36
Speaker 1: So it is a very specialized cluster of neural cells. Yeah,
29:41
Speaker 1: but it also makes it really vulnerable too, and they're
29:44
Speaker 1: all in one space in the rear of the hypothalamus.
29:47
Speaker 1: So it's really weird that evolution was like, that's fine,
29:51
Speaker 1: this is a really really really important chemical, um, but
29:54
Speaker 1: we're just gonna localize it right here in this one
29:57
Speaker 1: spot to just a hundred thousand neurons. Yeah. And it's
30:00
Speaker 1: also really weird that if you only have type two narcolepsy,
30:05
Speaker 1: you don't show any decrease in hypocretan right right when
30:10
Speaker 1: that's just the one where you have sleep attacks and
30:12
Speaker 1: not cataplexy. And it is really weird. And that's why
30:16
Speaker 1: I was saying, like, I wonder if that's going to
30:18
Speaker 1: be broken out eventually in the future into its own
30:20
Speaker 1: disorder or disease. But the current thinking for that is
30:25
Speaker 1: is that that is a less pronounced or less advanced
30:30
Speaker 1: case of type one narcolepsy to where you're probably going
30:35
Speaker 1: to eventually get cataplexy, or you may never get cataplexy,
30:39
Speaker 1: but your your case of narcolepsy just stopped progressing at
30:44
Speaker 1: something point. That's what they think currently. UM. A lot
30:48
Speaker 1: of the sleepiness of narcolepsy. This, you know, it's a
30:52
Speaker 1: theory at least from researchers, is that it's a consequence
30:55
Speaker 1: of sleep state instability. Uh. And that's something I know
30:59
Speaker 1: we talked about before, that that threshold between being awake
31:03
Speaker 1: and being asleep and those lines getting blurred and crossing over.
31:07
Speaker 1: And I guess that must have been sleep paralysis that
31:10
Speaker 1: we talked about that. I think so because that's, um,
31:13
Speaker 1: that is like an example of like wait, that is
31:17
Speaker 1: like wakefulness intruding on R E M sleep. It's almost
31:21
Speaker 1: like the opposite of narcolepsy, people experiencing sleep paralysis without narcolepsy.
31:27
Speaker 1: It's kind of like that, but it it's it's ultimately
31:30
Speaker 1: that it's a consequence of your brain no longer able
31:34
Speaker 1: to being able to hold the switch down between the
31:39
Speaker 1: on off switch between sleep and wakefulness. Right. So it's
31:43
Speaker 1: like hypocritin is the thumb that holds the on off
31:48
Speaker 1: switch in place. Without it, that switches kind of hair trigger,
31:53
Speaker 1: so that um, it's just kind of can shift back
31:56
Speaker 1: and forth between on and off really easily and really quickly. Um.
32:01
Speaker 1: And so without that hypocrite and that's that you can
32:05
Speaker 1: just kind of go in between wakefulness and R E
32:07
Speaker 1: M sleep with no transition and just at the drop
32:10
Speaker 1: of a hat basically, so they think that that's it,
32:13
Speaker 1: that it is a a lack of hypocriting that is
32:17
Speaker 1: responsible at least for type one narcilepsy, which is narcilepsy
32:22
Speaker 1: with cataplexy. Should we take the break now? Sure? All right,
32:27
Speaker 1: let's take a break because we're going to get into
32:30
Speaker 1: our third act here with a very what I think
32:33
Speaker 1: is the most interesting part of all this, which is
32:36
Speaker 1: what it has to do with your genes and your
32:38
Speaker 1: immune system right after this. All right, so I promised
33:12
Speaker 1: talk of genes in your immune system. This is super
33:17
Speaker 1: interesting to me because I feel like they're really zero
33:19
Speaker 1: zeroing in on what's going on here with this research. Dude,
33:24
Speaker 1: how many episodes have we done on stuff like this
33:27
Speaker 1: where we're like, they think maybe this or studies are
33:30
Speaker 1: started coming. We have caught this at like peak ripeness
33:36
Speaker 1: right before everybody knows that it's just so plain and
33:38
Speaker 1: obvious and it's been talked about so much, but right
33:41
Speaker 1: after all of these important advanced advancements in the study
33:46
Speaker 1: of it have really kind of come together and gelled.
33:48
Speaker 1: I mean, it is perfectly fresh. Yeah, it is uh
33:53
Speaker 1: a very rare satisfying feeling. I feel satisfied myself, so there.
33:59
Speaker 1: They think there's a genetic basis for narcilepsy, but the
34:03
Speaker 1: genes that are involved in our ecclepsy really aren't involved
34:06
Speaker 1: with sleep. It's about your immune system. Um, so how
34:10
Speaker 1: it goes is a little something like this there, alright, man,
34:18
Speaker 1: there are genes that code for these T cell receptors
34:20
Speaker 1: and the h l A gen human lucacite antigen, and
34:25
Speaker 1: not everyone has this variant, but if you do, you're
34:28
Speaker 1: gonna have about a greater chance of having anarcilepsy. Yeah,
34:33
Speaker 1: that variant of the h l A gene very important.
34:36
Speaker 1: That's a big increase, Yeah, is for real because a
34:40
Speaker 1: lot of those will show like the relative increase, it
34:43
Speaker 1: increases your risk, you know, but if you look at
34:46
Speaker 1: the absolute increase, it's like well that you know, you
34:49
Speaker 1: have you know, one point five times the chance or
34:53
Speaker 1: something like that times likely or is definitely a huge increase.
34:58
Speaker 1: For sure. My hat is all to that one. Yeah.
35:01
Speaker 1: But so what they're thinking is that it's actually the
35:04
Speaker 1: basis of narcolepsy is an autoimmune disease, and that is
35:07
Speaker 1: what's killing off your immune system, is killing off those
35:10
Speaker 1: hypocreting producing neurons. Yes, yes, just like crones irritable bowel
35:17
Speaker 1: syndrome or rheumatoid arthritis. It's your body turning on itself.
35:23
Speaker 1: It's mistaken, so it attacks itself. Your immune system attacks
35:26
Speaker 1: your own body. And in this case, in the case
35:29
Speaker 1: of an ecalepsy, they think that something about those hypocriting
35:35
Speaker 1: um hypocreting producing neurons I guess are producing something that
35:39
Speaker 1: seems like an antigen to your body. If you have
35:43
Speaker 1: that specific variant of that hl A Jean and attacks them,
35:48
Speaker 1: kills off those neurons. You don't have any hypocreting any longer,
35:51
Speaker 1: and so you can't maintain wakefulness, and so sleep and
35:55
Speaker 1: wakefulness just toggle back and forth throughout your day. Are
35:59
Speaker 1: you gonna drop this stropped a caucus bomb? I think
36:01
Speaker 1: you should. I think I understand it. But just after
36:07
Speaker 1: the onset of narcolepsy, it looks like you have an
36:10
Speaker 1: increased level of antibodies against streptocaucus and that's like strep throat,
36:15
Speaker 1: and there are other infections involved, and so they've also
36:19
Speaker 1: tied that to the time of year. Uh A. Narcolepsy
36:21
Speaker 1: usually begins in late spring and early summer, which would
36:25
Speaker 1: kind of make sense that there's an autoimmunitat going on
36:27
Speaker 1: against those neurons triggered by strep throat or some other
36:31
Speaker 1: kind of infection you get during the winter. Yeah, like
36:34
Speaker 1: your immune system just goes bonkers because it's strap and
36:37
Speaker 1: it's like what else, what else can I go after?
36:39
Speaker 1: I'm really primed and pumped, And for some reason it
36:41
Speaker 1: goes after your hypocretan producing neurons in your hypothalamus. That's nuts.
36:46
Speaker 1: So your immune response is triggered by an actual infection,
36:49
Speaker 1: they think, and the reason why they think this, and
36:52
Speaker 1: it greatly pains me to to to reveal this, I know.
36:57
Speaker 1: But there is a vaccine called endem Ricks that is
37:01
Speaker 1: no longer available anywhere in the world. But it was
37:04
Speaker 1: hot and heavy as a vaccine against H one N
37:07
Speaker 1: one swine flu, and it was a really potent vaccine
37:11
Speaker 1: against H one N one swine flu, and some European
37:14
Speaker 1: Northern European countries during the two thousand nine to two
37:18
Speaker 1: thousand eleven swine flu pandemic chose to use this to
37:22
Speaker 1: inoculate their population with right. Well, there were reports that
37:28
Speaker 1: have been backed up by studies, not just in um Finland,
37:32
Speaker 1: which was a big place where this happened. But in
37:34
Speaker 1: other places like the UK did studies to that found
37:37
Speaker 1: the same results that there was a link between pandemics
37:43
Speaker 1: and narcolepsy, that the pandemics triggered that immune response that
37:48
Speaker 1: ultimately led to the immune system attacking the hypo cretan
37:53
Speaker 1: producing neurons, so that H one N one vaccine brought
37:57
Speaker 1: on a life long chronic case of narcolepsy. Yeah, I
38:02
Speaker 1: thought that was hard to say, what not? Yeah, it
38:05
Speaker 1: really was. I really really hate saying stuff like that,
38:08
Speaker 1: I know, but you know what, you gotta we gotta
38:11
Speaker 1: preach the science, and the science appears valid. Here dozens
38:16
Speaker 1: of kids and um Finland developed narcolepsy, and I think
38:20
Speaker 1: the new rate of cases of narcilepsy and kids increased
38:24
Speaker 1: eight to twelvefold. And you know, I think out of
38:30
Speaker 1: the fifty four kids who are diagnosed with narcolepsy, fifty
38:33
Speaker 1: of them had had the vaccine. So yeah, and I mean,
38:36
Speaker 1: these like these numbers are really really small, but if
38:39
Speaker 1: you think about it, so four kids apparently in two
38:43
Speaker 1: thousand and ten would have been diagnosed with narcolepsy had
38:48
Speaker 1: that pandemic not happened in that or that particular vaccine
38:51
Speaker 1: not been administered, but because it was, the number was
38:55
Speaker 1: fifty four, not four. So even though the numbers again
38:59
Speaker 1: absolutely are rather small percentage wise, there, that's an enormous,
39:04
Speaker 1: a mind boggling increase in the number of NARCOLEPSI diagnoses. Yeah,
39:10
Speaker 1: and it was linked directly to that vaccine and they
39:14
Speaker 1: I keep saying that, and they caught it and it
39:17
Speaker 1: is no longer being given anywhere. It was never available
39:21
Speaker 1: in the United States. So, uh, Finland just sort of
39:25
Speaker 1: got the brunt of it. It seems like, yeah, Finland,
39:27
Speaker 1: the UK had a bunch um. Their rate was one
39:32
Speaker 1: case of diagnosed and narcolepsy for every fifty five thousand
39:36
Speaker 1: UM inoculations and children I think six months to eighteen UM,
39:41
Speaker 1: but that washed out to like sixteen sixteen people UM,
39:46
Speaker 1: which still I mean, if you're one of those people,
39:48
Speaker 1: you're like, well, son of a gun, that really sucks.
39:52
Speaker 1: But here's the key, and this is really really important,
39:54
Speaker 1: and this is how we will be able to still
39:57
Speaker 1: use a vaccine that is viable and po and works
40:00
Speaker 1: against swine flu without giving somebody anarcilepsy. And that is
40:05
Speaker 1: personalized UM drugs based on gene tests UM DNA tests,
40:12
Speaker 1: Because of those fifty kids in Finland that received the
40:17
Speaker 1: vaccine in two thousand ten that developed narcolepsy, every single
40:21
Speaker 1: one of them carried that specific variant of the h
40:24
Speaker 1: l a gene that is tied to narcolepsy. So if
40:27
Speaker 1: you just did a simple DNA test, which hopefully will
40:30
Speaker 1: be widespread in just a few years, you'd say, oh, no,
40:33
Speaker 1: I'm glad we did this. You can't have pandemics, you
40:36
Speaker 1: might get an arcilepsy, or basically there's a percent chance
40:39
Speaker 1: you're gonna get an ecolepsy. Um, we'll give you this
40:41
Speaker 1: other vaccine instead that that has been shown not to
40:44
Speaker 1: produce narcilepsy and people like you. That's right, and you
40:47
Speaker 1: can refer to our episode on personalized medicine. Yes, right,
40:51
Speaker 1: we should do a follow up on that one. Yeah,
40:53
Speaker 1: I agree, So that on the list for six years
40:56
Speaker 1: from now. So basically, you've got these gene that pre
41:00
Speaker 1: predispose you to um your immune system mistakenly attacking that
41:05
Speaker 1: part of your hypothalamus. There has to be some sort
41:08
Speaker 1: of trigger, either an infection or pandemics, um something like that. Typically,
41:14
Speaker 1: an infection was stripped and then there seemed to be
41:16
Speaker 1: two age windows where you're particularly vulnerable around fifteen and
41:20
Speaker 1: around thirty six. They have no idea about any of that.
41:24
Speaker 1: They just have they're starting to put this data together. Yeah,
41:28
Speaker 1: I bet you they'll figure that out too, agreed. I
41:31
Speaker 1: really feel like narcolepsy is going to be like totally
41:34
Speaker 1: incompletely figured out in the next decade. I couldnot be
41:37
Speaker 1: more jazzed about it, really. Yeah. Love science just figuring
41:42
Speaker 1: things out, you know, just just doggedly, you know, working
41:46
Speaker 1: in building on you know, somebody else's work. It's just
41:50
Speaker 1: it's a beautiful thing when it's done right. Agreed. So,
41:54
Speaker 1: if you are going to be diagnosed with narcolepsi, there
41:57
Speaker 1: are a couple of tests that they're going to give you.
41:59
Speaker 1: What is called an overnight uh Polly som no Graham,
42:04
Speaker 1: that's right, a p s g uh. And that is
42:07
Speaker 1: a test when you uh, it's one of those tests.
42:10
Speaker 1: It's like a sleep studies when you go in and
42:12
Speaker 1: sleep for them basically, and yeah, and they measure a
42:17
Speaker 1: lot of things. They measure your brain waves, uh, they
42:20
Speaker 1: measure your heart rate, eye movements, limb movements, muscle tone, respiration.
42:24
Speaker 1: Get a lot of info there and then they'll say,
42:26
Speaker 1: now you're gonna this is gonna be followed by the
42:28
Speaker 1: multiple sleep latency test, which also sounds kind of fun
42:33
Speaker 1: because that measures how quickly you fall asleep for a
42:36
Speaker 1: nap every couple of hours during the day. I know,
42:39
Speaker 1: when you have to go in for when you're like,
42:40
Speaker 1: I gotta go to a doctor's appointment. Somebody goes, oh, sorry,
42:43
Speaker 1: you go no, No, it's great, It's gonna be the
42:45
Speaker 1: greatest day of my life. Yeah, those rooms make me sleepy. Um.
42:49
Speaker 1: I could see some people being like, I can't go
42:51
Speaker 1: sleep in a room, but I was well known as
42:54
Speaker 1: a child for falling asleep in like a dentist chair
42:57
Speaker 1: waiting for waiting for the dentist to come in. Um
43:00
Speaker 1: or in a in a waiting room for are not
43:03
Speaker 1: a waiting room, but in the exam room for a doctor.
43:05
Speaker 1: I still get sleepy. And those just super clean, super cool,
43:09
Speaker 1: quiet rooms with fluorescent lighting. It just zaps me. Yeah,
43:15
Speaker 1: that's very odd, very odd. So, uh, four or five
43:20
Speaker 1: knap opportunities during the day, they're gonna see how fast
43:23
Speaker 1: you fall asleep, and if you followup, if you have narcalepsy,
43:26
Speaker 1: you're gonna fall asleep super easy UM compared to someone
43:29
Speaker 1: without an earcalepsy. Right, so that's that's a pretty big giveaway. UM.
43:33
Speaker 1: If they're still like, I don't know, this is all this,
43:35
Speaker 1: You know, this person patient history that we've taken in
43:38
Speaker 1: these tests are inconclusive, they might test your cerebro spinal
43:42
Speaker 1: fluid because UM hypocretan levels are very easily tested through that. No,
43:49
Speaker 1: not nearly as fun, because they're gonna go through the
43:51
Speaker 1: base of your skull, that hole in your skull where
43:54
Speaker 1: your spinal cord. Yeah, I know. I hope that that
43:58
Speaker 1: never befalls either one of us into anyone who's ever
44:00
Speaker 1: had to go through that. We are very very sorry. UM.
44:04
Speaker 1: But that also is looking like a place where they're
44:07
Speaker 1: trying to figure out how to cure UH an ecolepsy,
44:10
Speaker 1: because as it stands right now, if you're diagnosed with narcilepsy,
44:14
Speaker 1: you've just been given a lifelong chronic diagnosis. You know,
44:19
Speaker 1: there there's no cure for an eclepsy as it stands
44:22
Speaker 1: right now, but there are treatments and from everything I read,
44:26
Speaker 1: if you are actively treating your narcolepsy UM through a
44:30
Speaker 1: doctor usually with prescriptions and also like behavioral modification, not
44:35
Speaker 1: like you know, hooking you up to a car battery
44:37
Speaker 1: and changing your behavior like that, more like making sure
44:41
Speaker 1: you stick to like a good sleep pattern. Um, you
44:45
Speaker 1: can very much keep your symptoms in check for sure.
44:48
Speaker 1: It doesn't have to ruin your life. The trouble is
44:50
Speaker 1: is that it's very frequently misdiagnosed and it's underdiagnosed, and
44:55
Speaker 1: they think it's because it's occurs UM with so many
44:59
Speaker 1: co morbidities like depression, where the doctors like, well, sure
45:04
Speaker 1: you're falling asleep all day because you're just sitting around
45:07
Speaker 1: on the couch, because you don't have any low energy
45:09
Speaker 1: because you're depressed. Really, it's possible that you you have
45:13
Speaker 1: developed depression because of the narcilepsy. UM. They haven't figured
45:17
Speaker 1: out if they're co morbid or if the if one
45:20
Speaker 1: causes the other, but they're pretty sure that an arc
45:22
Speaker 1: eilepsy causes the depression. Yeah, you're probably going to get
45:26
Speaker 1: a prescription for something um it maybe or it's probably
45:30
Speaker 1: likely to be a daphanel these days. When we talked
45:34
Speaker 1: about that in Our is Science Phasing out sleep episode, Yeah,
45:37
Speaker 1: we've done a bunch of sleep once. I forgot about
45:39
Speaker 1: that one riddling you might get uh, you know, it
45:42
Speaker 1: says you know, in the old days meth amphetamins. But
45:46
Speaker 1: they still prescribe a variation of speed for I'm not
45:50
Speaker 1: sure if it's an ecailepsy, but I know an individual
45:54
Speaker 1: that I was diagnosed with. I guess just it's dream
46:00
Speaker 1: daytime sleepiness. Not they're in chores fast enough, No, no
46:05
Speaker 1: for falling or get just feeling really really sleepy during
46:08
Speaker 1: the day. And did the sleep study and all that,
46:10
Speaker 1: and they were prescribed kind of whatever the version of
46:13
Speaker 1: speed as these days was. When was that? When were
46:16
Speaker 1: they prescribed? That was at nineties last year? Oh? Really,
46:19
Speaker 1: I'm surprised because from what I saw, Madafanil is like, no,
46:23
Speaker 1: don't need anything else, just take me daffanel. You don't
46:25
Speaker 1: get addicted to it. There are very few side effects. Um,
46:29
Speaker 1: it's supposed to just be like a wonder drug basically.
46:33
Speaker 1: Mm hmmm. I don't. Anytime I hear that, I get dubious, right,
46:39
Speaker 1: I think that's pretty pretty smart. Actually, Um, they might
46:42
Speaker 1: also prescribe you anidepressant like an ss r i um,
46:47
Speaker 1: which inhibits reuptake a serotonin, which means you have more
46:50
Speaker 1: serotonin in your brain, which would make sense because what
46:53
Speaker 1: hypocretan does is boost your levels of serotonin and other neurochemicals.
46:58
Speaker 1: So this is kind of going around down that problem
47:01
Speaker 1: and just making you have more serotonin than before, which
47:05
Speaker 1: apparently helps maintain r E M sleep the barrier between
47:11
Speaker 1: that and wakefulness a lot better. Yeah. And then the
47:14
Speaker 1: final thing, which is really interesting and promising, is they
47:17
Speaker 1: did the sort of logical thing, which is, hey, maybe
47:20
Speaker 1: we can just get some more hypocreting in your body,
47:23
Speaker 1: because if that's the problem, why don't we just do that?
47:26
Speaker 1: So they cut out fat hauled legs of it for
47:29
Speaker 1: you at the doctor's office. Uh. There are different methods.
47:32
Speaker 1: Cell transplantation, which is just implanting cells. Uh, maybe implantation
47:38
Speaker 1: of the gene like gene therapy. Maybe just giving it
47:43
Speaker 1: through your nose or injecting it into your body, That's
47:46
Speaker 1: what I'm saying, or interest sisternally chuck, which is again
47:52
Speaker 1: through the base of the skull in the back of
47:54
Speaker 1: your head where your spinal cord goes into your up
47:58
Speaker 1: to your brain. They and inject into your cerebro spinal
48:01
Speaker 1: fluid like that too. It's probably the least fun of
48:04
Speaker 1: all of them, but they are they're on the case
48:08
Speaker 1: basically is what that means. Yeah, and you know we've
48:12
Speaker 1: talked sort of off and on throughout this thing about
48:14
Speaker 1: your quality of life with narcolepsy. Um, it's obviously a
48:18
Speaker 1: serious thing. There can besides just like holding a job
48:22
Speaker 1: and um, socially and not being depressed because you don't
48:27
Speaker 1: want to hang out with people because you may be
48:28
Speaker 1: embarrassed by it. Uh. There's also like the very real
48:33
Speaker 1: chance of accidents. Um. Some people are not allowed to drive,
48:37
Speaker 1: some people are allowed to drive. It kind of depends
48:40
Speaker 1: on I guess your your diagnosis. Uh. School is tricky.
48:44
Speaker 1: Work can be tricky. Although they do UM they do
48:48
Speaker 1: with the Americans with Disabilities Act. They provide for letting
48:51
Speaker 1: people take naps and stuff like that, which is kind
48:53
Speaker 1: of cool. It is. Yeah, if you have narcolepsy and
48:57
Speaker 1: um you're at work, you can say, hey, employer, I
48:59
Speaker 1: need them, I need a place to take a nap,
49:02
Speaker 1: and they'll say, okay, that's great, let's say right in here,
49:04
Speaker 1: and they're like, oh my god, Chuck's in there, right, Chuck.
49:10
Speaker 1: The there's I mean it gets even sadder though, like
49:12
Speaker 1: there there are people who who um die by suicide
49:16
Speaker 1: from uh narcolepsy. There was a girl named Katie Clack
49:21
Speaker 1: who got pandem riics and developed narcolepsy as a result,
49:25
Speaker 1: and she ended up taking her life, um because she
49:29
Speaker 1: just it just completely derailed things for um. She was
49:32
Speaker 1: in no way, shape or form prepared for it, although
49:35
Speaker 1: I don't know that anybody's prepared for it. And then also,
49:38
Speaker 1: like you were saying, an accident can happen, and from
49:40
Speaker 1: what I read, um, the risk of death and injury
49:44
Speaker 1: among people with narcolepsy is almost twice that of the
49:48
Speaker 1: general population through things like car accidents or you know,
49:53
Speaker 1: cooking or going up a ladder or something like that.
49:56
Speaker 1: If you suddenly developed cataplexy or a sleep attack or
49:59
Speaker 1: something that's that's a bad time to fall asleep or
50:02
Speaker 1: lose control of your muscles. You know. Well, and at
50:04
Speaker 1: the very least you're gonna have to really arrange your
50:07
Speaker 1: life to accommodate for this stuff, right, you know. But again,
50:11
Speaker 1: if you are managing your symptoms, you can you can
50:15
Speaker 1: lead a pretty normal life. I think it's just a
50:18
Speaker 1: question of like getting diagnosed correctly. Yeah, well that's it
50:23
Speaker 1: for ourclepsy. Hopefully we'll have it all figured out, and
50:26
Speaker 1: when we revisit it in five or ten years will
50:28
Speaker 1: be like it was all right, Everything was correct, it
50:33
Speaker 1: was all right. And since I said it was all right,
50:36
Speaker 1: it's time for listener, mate, I'm gonna call this soul
50:42
Speaker 1: Train feedback. That was a fun show, and this is
50:46
Speaker 1: from Julia. Hello, guys, we really enjoyed your Soul Train episode.
50:51
Speaker 1: You did a great job capturing the feeling and cultural
50:54
Speaker 1: significance of the show. You depicted a brilliant, flawed Don
50:58
Speaker 1: Cornelius without gating his profound contribution. There was a monthly
51:03
Speaker 1: black teenage magazine named right on. This publication gave names
51:07
Speaker 1: to the dances and dancers. We would read the ink
51:11
Speaker 1: off of the pages. Being black in America then and
51:14
Speaker 1: now we watch mainstream America love the culture while devaluing
51:19
Speaker 1: the people and criminalizing the young. Thank you for this episode.
51:23
Speaker 1: And that is from Julia Pierce, the president of the
51:27
Speaker 1: Tybee MLK Human Rights Committee. Nice Tybee Island. I guess
51:31
Speaker 1: down in Georgia. I don't know, I guess so I hope.
51:34
Speaker 1: So that's great. Thanks a lot, Julia, I much appreciated. Agreed.
51:39
Speaker 1: If you want to get in touch with this like
51:40
Speaker 1: Julia did. Give us props, or just say hey, you
51:44
Speaker 1: guys are doing this too much, or be quiet. Well,
51:47
Speaker 1: we never will, but you can still say it. You
51:49
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51:52
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