Latest / Stuff You Should Know / Selects: How Narcolepsy Works

Transcript

Selects: How Narcolepsy Works · Stuff You Should Know

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