August 22, 2026 • 52 mins
Narcolepsy is one of those amazing rare disorders that everyone thinks they understand – people just fall asleep at random times, even in the middle of doing something. But there’s a lot more to it and – even better – we actually may be able to explain it. Josh and Chuck run it down in this classic episode.
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Speaker 1 (00:00):
Hey, guys, it's me Josh, and for this week's select,
I'm going with our May twenty episode on narcolepsy. It's
one of those sysk esque episodes that covers something we've
all heard of but really know nothing about. And it's
deeply satisfying because it all makes sense and it fits
together once you understand it. Good stuff. I hope you
(00:23):
enjoy it.
Speaker 2 (00:29):
Welcome to Stuff you should know a production of iHeartRadio.
Speaker 1 (00:39):
Hey, and welcome to the podcast. I'm Josh Clark and
there's Charles w Chuck Bryan over there and still have
Jerry Chuck wake up huh and we're going to get
some mail for that.
Speaker 2 (00:53):
Right off of the bath, I feel quite refreshed.
Speaker 1 (00:57):
So, Chuck, you might have narcolepsy? Then if you just
fell asleep, were you able to resist that urge to
sleep just now?
Speaker 3 (01:04):
No.
Speaker 2 (01:05):
As soon as I heard Hey, welcome to the podcast,
I went lights out.
Speaker 1 (01:10):
I think that happens to a lot of people.
Speaker 2 (01:13):
Have you ever known anyone with narcolepsy?
Speaker 1 (01:15):
I haven't. The closest I've I've come to that is
watching my own private Idaho.
Speaker 3 (01:23):
Do you find that sleep inducing?
Speaker 1 (01:27):
No? No, there's a I think Oh, it's River Phoenix
or Keanu Reeves has.
Speaker 2 (01:31):
No, that's right, I forgot about that. I thought you
were saying it's so boring you can't stay awake.
Speaker 1 (01:36):
No, no, No, that's Cats.
Speaker 3 (01:40):
Did you see that?
Speaker 1 (01:42):
No, don't you remember that? I tried to make myself
go to sleep in Cats in the Middle.
Speaker 2 (01:46):
Oh that's right.
Speaker 1 (01:47):
No, I've not seen the movie.
Speaker 2 (01:48):
Now, yeah, that's what I was wondering about.
Speaker 1 (01:50):
After having been on movie crush. Now I can't tell
what's what anymore? What I said where? Uh?
Speaker 2 (01:57):
So my great aunt Laura had narcolepsy, which is my
paternal grandmother's sister, and I only met her a few times.
This is from my dad's side of the like the
Mississippi clan. So I think I only I only remember
going to Mississippi like once when I was a kid
and visiting her, and I just remember my brother and I.
(02:19):
This is my only memory of the visit is Scott
and I sitting in a room talking with her and
her being in the middle of a sentence and then
her head falling down and then ten seconds later she
would pick her head up and continue that sentence.
Speaker 1 (02:34):
Wow, like like without missing a beat or was there
like a oh, you know, was she aware that she
had just fallen asleep and woken up?
Speaker 2 (02:41):
In my memory from being like ten years old, she
didn't miss a beat and just finished her sentence like
right in the middle of a sentence and didn't mention it.
And my brother and I were just like, what is
going on here?
Speaker 1 (02:53):
But your dad didn't prepare you for it.
Speaker 2 (02:56):
I don't remember. I blocked out, you know, purposely blocked
out a lot of my childhood.
Speaker 1 (03:01):
Right right, So I don't know, but that got pulled
it into the shuffle.
Speaker 2 (03:06):
That's the only thing I remember. It may be a
child's memory that is a little trumped up, but that's
how I remember it.
Speaker 1 (03:15):
Wow. Man, Well, yeah, I've never known anybody with narcolepsy,
and based on that going into this whole episode, like
I was just basically going in like I'm sure most
of our listeners are where it's just like, yeah, just
somebody falls asleep in the middle of the day, they
can't help it, and then they wake back up and
who cares basically, you know. But the more that I've
(03:37):
researched this some more, I'm like, you know, if it
even if it were just that alone, it would be
pretty disruptive to your normal life, depending on how often
it happened to you, you know, every day. But the
fact is it's not just that alone, and there's a
lot of extra symptoms to it that make it frightening
or terrifying or depressing or just completely disruptive, or make
(04:00):
it so that you are maybe unable to hold down
a job or go to school. There's a it's actually
a much it's a much sadder condition than I think
most people think of because it seems innocuous. It's just like, hey,
you fall asleep here there, It's fine, you know, and
it's not There's a lot more to it than that.
Speaker 3 (04:18):
Yeah, for sure.
Speaker 2 (04:19):
I should also mention too that something that should not
be confused with narcolepsy is something that Emily's family has.
And I saw this when we would go to visit
when they lived in Ohio, when he would stay at
her parents' house in Bears, Well, you know, eating, drinking
during the day, such that by seven to eight o'clock
(04:40):
at night every night I would Emily and I would
look around, We're watching TV and there are four usually
three sleeping adults. And I dubbed it the gas leak,
which everyone in their family thought was hysterical.
Speaker 1 (04:55):
Right now, that's just played old funny.
Speaker 2 (04:58):
Yeah, that's that's not urcalepsy at all. That's just you know,
at what age does that start happening?
Speaker 3 (05:04):
Is what I want to know. Because I'm creeping up.
Speaker 2 (05:06):
There twenty one, because I can still jam laid into
the night. I'm still you know, I might be sleepy
the next day, but that's my only time when I
don't have a five year old m so I use
that time. I can stay up still till midnight one
in the morning. If I am doing something.
Speaker 1 (05:25):
That's really neat, you must have a lot of testosterone left.
Speaker 3 (05:29):
I don't think so well.
Speaker 1 (05:31):
I mean well, no, I mean like to have energy
after you know, a certain time of day is I
think I think you have a lot of testosterone chuck.
I would bet we're going to take you in for
a test after this.
Speaker 2 (05:45):
Well, I feel like it's money. I feel like it
kicks back in. Like I'm sleepy sometimes during the day,
but then when the night comes and my daughter's asleep,
I'm like, all right, this is my this is my
time to shine.
Speaker 1 (05:56):
No, that's very fortunate man, that you're not just like,
this is my time to Netflix and chill like you're
getting stuff done. I'm envious of you for that because
I get a little tired. But I definitely don't have narcolepsy.
I'm just kind of like I'm somewhere between you and
Emily's family. They guess correct.
Speaker 2 (06:14):
Yeah, So narcolepsy is it's a chronic disorder.
Speaker 3 (06:19):
It's a sleep disorder.
Speaker 2 (06:20):
And I know we've talked a little bit about this
in some of our other sleep disorder episodes, so much
so that I thought we might have actually covered this,
but I quadruple checked and we have not. But it's
characterized by a few things. One of the main tenants
that basically everybody that has narcolepsy has what's called excessive
daytime sleepiness.
Speaker 1 (06:42):
Right, that's what everybody thinks about when you think of narcolepsy.
Somebody just falling asleep. They can't help it, they're just
suddenly out.
Speaker 2 (06:48):
That's right.
Speaker 1 (06:49):
Yeah. They also call those sleep attacks, which is pretty cute.
And no matter what variation of narcolepsy you have, you
have excessive daytime sleepiness dys right.
Speaker 3 (07:03):
That's right. And this is not you know, this is
nothing new.
Speaker 2 (07:07):
We're just now sort of figuring it out a little
bit since the nineties, which we'll get to. But obviously
this has been happening since there have been people. They've
probably been suffering from narcolepsy, you know, a small percentage
of people. But it was first described in eighteen eighty
by a French physician named Jean Baptiste Edouard Guileneo not pair,
(07:32):
how would you have.
Speaker 1 (07:32):
Said it, Jean Baptiste dudoir jeleno is? That? Is it
a skipt to put that little uptick on the end.
Speaker 2 (07:41):
I think that's called an extant algou.
Speaker 1 (07:44):
Right, right, So yeah, that's how I would have said it.
But either way, I think we basically got it across.
He was a French physician from eighteen eighty.
Speaker 2 (07:52):
That's the that's right, yeah. And the origin of the
actual term is from Greek narca, which is or stupor.
Speaker 3 (08:01):
Stupor is one of my favorite.
Speaker 2 (08:02):
Words, and lepsis to attack or to seize.
Speaker 1 (08:06):
Right, So it's an attack of stupor basically is what
they what he meant when he coined that term. And
the reason Jean Baptiste dead war Jellineu came up with
this is because a thirty six year old wine cask
maker came to him and said, Hey, I think there
might be something wrong with me. I fall asleep suddenly
(08:29):
out of nowhere for one to five minutes two hundred
times a day, every day. What do you think? And
Jeleno said, I think I'm gonna make my career on you, buddy.
Speaker 3 (08:41):
I did the math there.
Speaker 2 (08:42):
If you average about two and a half minutes between
the one to five, that's about eight hours of dozing.
Speaker 1 (08:48):
Okay, I'm really glad you said that, Chuck, because this
was something that I had no idea about. But if
you take over a twenty four hour period somebody with
narcolepsy and put their amount of sleep next to somebody
without an ecolepsy over twenty four hours, it's going to
wash out roughly the same. Did you know that?
Speaker 3 (09:10):
I didn't know that.
Speaker 2 (09:11):
But does that mean that this guy dozed eight hours
a day and then stayed up all night or did
he sleep another five hours at night and just slept alit.
Speaker 1 (09:20):
No. So that's one of the one of the key
reasons that there is such a thing as excessive daytime
sleepiness as part of narcolepsy. It's that your sleep is
so disrupted that it's basically spread out over twenty four
hours rather than concentrated over eight hours at night. So
they're up and awake in the middle of the night
for very long periods, just like they fall asleep suddenly
(09:43):
during the day. But if you put all those bouts
of sleep together, even when they're trying at night and
then when they can't help it during the day, it
adds up to about the same that a person without
narcolepsy will sleep. That's my understanding.
Speaker 2 (09:57):
Now that's pretty remarkable.
Speaker 1 (09:59):
It is like the brain's like I'm getting sleep, whether
whether you like it or not. We're making this happen.
At least by twenty four hours, we're going to have
had enough.
Speaker 2 (10:10):
And of course, you know, since this has been you know,
we're talking about the eighteen eighties, there have been a
lot of explanations over the years, everyone from Freud to
you know, I was about to say legitimate doctors that
probably would offend certain people like I like Freud too,
but I.
Speaker 3 (10:24):
Meant, like, you know, never mind.
Speaker 2 (10:28):
Sure, but Freud of course said that sleep is an escape,
and he said, you know, narcolepsy is a lot of
times triggered by really intense emotions.
Speaker 3 (10:39):
So here's what I think.
Speaker 2 (10:41):
It's just an extreme defense mechanism that lets you escape
from those emotions.
Speaker 1 (10:46):
I love it. It's pretty Freudian. It's about as Freudian
an explanation for anything as I've heard. It's just classic. Right,
of course, it's just utterly wrong, but I love I
just think Freud's at ten that explaining the world were
great and valuable in the way that like preserving classic
art is.
Speaker 3 (11:07):
Yeah, I've been to his house.
Speaker 1 (11:09):
What where in Texas? Now?
Speaker 3 (11:11):
Yeah, the Sigmund Freud house in Tyler, Texas.
Speaker 1 (11:15):
There are a lot of Germans in Texas, although I
know he was Austrian.
Speaker 2 (11:19):
Yeah, I mean I believe I saw it in Vienna
if I'm not mistaken.
Speaker 1 (11:22):
That's neat, That is very neat. Was this when you
were backpacking?
Speaker 2 (11:26):
Yeah, of course, Chuck.
Speaker 1 (11:27):
You need to do a memoir of that time in
your life and call it backpacking to Freud's house.
Speaker 2 (11:35):
Okay, okay, So in the book could just be shaped
like a penis.
Speaker 1 (11:40):
Sometimes a book is just a book, Chuck.
Speaker 2 (11:42):
That's right.
Speaker 1 (11:43):
So Freud missed the mark a little bit, but still
again it's worth mentioning, just like appreciating art. It wasn't
until the sixties where they're like, okay, I think we're
starting to get some real clues here. And that was
when they first established that people with narcolepsy enter r
EM sleep during these bouts of narcolepsy, which you are
(12:05):
not supposed to do under normal sleep patterns, which we
talked about many many times before. Like you said, when
you fall asleep, it should take you a little while
to enter r EM sleep. That's a deeper phase of
your sleep pattern. Right with narcolepsy, they're out and into
r EM sleep so quickly that A different way to
(12:26):
characterize it that narcolepsy researchers put it is that ore
em activity it intrudes into wakefulness. The line between being
awake and being in deep RAM sleep is that blurred
for people with narcolepsy.
Speaker 2 (12:44):
Yeah, And I feel like I've occasionally, in a really
intense power nap had a dream, but that's only when
it's and I don't get to nap anymore. But that's
when I've just been so tired that I just nap
and fall asleep like immediately.
Speaker 1 (12:59):
That's neat. How about you? Do you feel refreshed when
you wake up.
Speaker 2 (13:03):
I tend to nap longer when I would nap, so
I wouldn't do the When I say power nap, I
don't mean the twenty minute disco nap.
Speaker 3 (13:10):
I mean you really power through for a couple of hours.
Speaker 1 (13:13):
Right, I thought you were recounting some of your cocaine
using days.
Speaker 3 (13:17):
No, no, no, I gotcha.
Speaker 1 (13:19):
So that was in the sixties. So they say, okay,
rim and narcolepsy they go together like chocolate and peanut butter. Right,
we're onto something here. But finally in the nineties they're like,
really have started to figure it out, and they've zeroed
in on the hypothalamus and specifically a small cluster of
cells in the rear of the hypothalamus that we'll talk
(13:41):
about later. And if you learn about that, and as
far as narcolepsy goes, you can find it pretty convincing
that we have begun at least to finally truly understand
the cause of narcolepsy.
Speaker 2 (13:53):
Yeah, I totally agree. It's they make a great case.
Speaker 3 (13:57):
Yeah, So if you want to talk to.
Speaker 2 (13:58):
Some initial stats, it occurs in all ethnic groups, It
has equal incidents on the gender spectrum.
Speaker 3 (14:07):
Evidently.
Speaker 1 (14:07):
Yeah, that's interesting.
Speaker 2 (14:09):
And yeah, because usually you would see it tilted one
way or the other.
Speaker 1 (14:13):
Yeah, for sure.
Speaker 2 (14:15):
And then as far as how often you're going to
see this, it's in about zero point three two point
one six percent of gen pop or about one in
two thousand people.
Speaker 1 (14:27):
Yeah, which makes it which classifies it as a rare disease, which,
by the way, shout out to, among several others, Rare
Diseases dot org for their take on narcolepsy, It was
very instructive.
Speaker 2 (14:40):
Is it a disease or a disorder or is it
a fine line?
Speaker 1 (14:44):
Geez? I think because there's a brain dysfunction that it
would be characterized as a disease, wouldn't you.
Speaker 3 (14:52):
I don't know.
Speaker 2 (14:52):
I still don't know the difference after all these years.
Speaker 1 (14:55):
So it was I mean, when it was considered an
ram sleep disor maybe it still is. It was considered
a parasomnia like sleepwalking or whatever, so that would have
been considered a disorder them. But I think it's a disease. Now, Okay, okay,
you want to take a break and come back and
talk about what narcolepsy is. Yes, okay, well we'll be
(15:17):
right back, everybody. Okay, we're back, and it turns out, Chuck,
(15:49):
that there are two types of narcolepsy, And just from
all of the research that we've done over the years
on interesting health stuff, this smells a lot to me
like something that's going to be broken out into its
own thing over time.
Speaker 2 (16:03):
Yeah, I agree, because we've seen that happen time and
time again. We have narcolepsy Type two, which is what
we were talking about, the sort of the more like
when you think of narcolepsy, this is probably what you're
thinking of Aunt Laura falling asleep during the middle of
a sentence.
Speaker 1 (16:20):
Right, And it's type two because it's by far less
prevalent than type one. And type one is narcolepsy like
you'd think of with the daytime excessive daytime sleepiness. But
on top of that, there's something called cataplexy too, and
cataplexy can exist on its own. It's the just sudden
(16:42):
loss of voluntary muscle function, like you can't keep your
head up because your neck muscles just went limp, or
your arms go limp, or something like that. And cataplexy
can exist on its own. It can exist in conjunction
with other diseases to or disorders, but It very frequently
coexists with narcolepsy, and one of the hallmarks of it
(17:04):
from what I understand, because it gets kind of confusing
and I couldn't fully find this out, Chuck, but I
think that it can exist in a person with narcolepsy
in conjunction with a sleep attack or separately to where
you just suddenly like can't hold your head up anymore.
(17:26):
The key is you're still conscious. Conscious. Oh my god,
I just turned into an illiterate seventh grader. You're still conscious.
You might look like you have just fainted or something
like that, depending on the severity of the cataplexic attack.
Speaker 2 (17:42):
Yeah, it's almost like a fainting goat, right.
Speaker 1 (17:44):
Yes, very much like that, Almost exactly like that, because
remember with the fainting goats, they would basically just fall
over because they were startled.
Speaker 2 (17:54):
Yeah.
Speaker 1 (17:54):
I think pretty much the same thing with cataplexy in humans,
although it seems to be more associated with positive emotions.
Speaker 3 (18:00):
That's so interesting. Yeah, we're going to get into that.
Speaker 2 (18:02):
There are four symptoms of narcolepsy, which we're going to
break down in a second. But they are excessive daytime sleepiness,
like we've talked about, there is the cataplexy, their sleep
sleep paralysis, and then hypnagogic hallucinations, and if you have narcolepsy,
(18:25):
you well, there's about a twenty to twenty five percent
chance that you have all four. And I don't think
there's any rhyme or reason which ones you do have.
But like we said, everybody has the excessive daytime sleepiness.
And they're also talking about a fifth beetle.
Speaker 1 (18:43):
I was going to say that too, Clarence was that
his name? Yeah? Or a Pooh said he was too.
Speaker 2 (18:51):
The fifth symptom, which is disturbed nocturnal sleep, which about
fifty percent of the patients have, but they haven't.
Speaker 3 (18:57):
I think that'll end up in there at some point.
Speaker 1 (19:00):
And technically there may be a sixth one too, which
is called automatic behavior. Where have you ever been like
driving and you're suddenly like five exits further than you
thought you were and you realize you just zoned out
and were just driving just fine, but you were you're
you're basically on autopilot.
Speaker 2 (19:18):
I don't know, I mean, is that like the same
as just daydreaming?
Speaker 1 (19:21):
Or maybe I think so. But there's like no recollection
of anything. You didn't note any landmarks that you just passed.
Or let's say you're gardening or something like that, you
don't you don't remember finishing digging the hole with a trowel.
It's it's you've just completed a task that you have
no memory of undertaking.
Speaker 3 (19:41):
I don't think that happens.
Speaker 1 (19:43):
Okay, so that's that's happened to me before. But that's
a symptom of It's an additional symptom. It's not a
classic symptom. But they're starting to figure out that it
is a symptom of narcolepsy.
Speaker 2 (19:53):
Yes, so you're like, I just I went in my
garage one day and I had built a penny farthing, right,
no memory of that how it got there. So it
usually starts out in adolescence, which surprised me.
Speaker 3 (20:06):
I did not know.
Speaker 2 (20:07):
That, just maybe because my aunt Laura characterized it as
something you got later in life. But they do worsen
with age, so maybe that does make sense after all.
And sometimes your symptoms can be very steady. Sometimes it
can be months or years in between changes, and sometimes
the symptoms change a lot very quickly.
Speaker 1 (20:27):
Right, But the symptom that again, one hundred percent of
people with narcolepsy have is excessive daytime sleepiness. In almost
every case of narcolepsy, that is the first symptom that starts.
You almost never start with the other ones. It's that
one first. And that's exactly what you think of where
(20:48):
somebody just falls asleep and they're out for a few
seconds to a few minutes, depending And it's not going
to be the same amount of time every time. They're
not going to have the same number of sleep attacks
every time. A lot of it has to do with
just how tired they are, like how poorly they slept
the night before. Yeah, that's going to make them more
susceptible to sleep attacks during the day. And this is
(21:10):
not the same as hitting the wall at three o'clock
because you ate lunch and all of your coffee from
the morning wore off. Yeah, I mean, it bears some
resemblance to it, but this is it is irresistible, this
urge to sleep or just sleep, it just comes on.
So that's a that's the main characteristic of narcolepsy. But
(21:32):
anybody who's kind of dozed off, like sitting in a
comfortable chair when it was you know, a little warmer
than normal at work, or something like that. Right, like
that is it bears a resemblance to that specific symptom
of narcolepsy. It's the other ones that you have in
conjunction with that that really make a narcolepsy like its
own disorder.
Speaker 2 (21:52):
Have you ever slept at any job you've ever had?
Speaker 1 (22:00):
It doesn't sound like me, but probably, I'm sure. I'm
sure I have you here or there? Why you well?
Speaker 2 (22:08):
I mean when I worked the midnight to seven am
shift at the Golden Pantry in Athens, I had a
regular routine of sleeping.
Speaker 3 (22:16):
Yeah, because you were.
Speaker 2 (22:17):
Allowed to close up the store and mop and do
things for like an hour. So I would close up
the store, go back in the back and lay down
on a little palette I made on top of a freezer.
Speaker 1 (22:29):
Nice, did you get some good sleep?
Speaker 3 (22:32):
I would?
Speaker 2 (22:33):
It was pretty hard sleep, And I will admit that
when I had a baby, I took a nap or
two right here in our own office.
Speaker 1 (22:43):
Oh, nice, can you tell me where is it still?
A secret?
Speaker 2 (22:47):
In one of the private telephone rooms.
Speaker 1 (22:50):
Oh, that would be a good place to take a nap.
Speaker 2 (22:52):
If you've ever gone in there and seen a pillow.
Then in the campstove, the sleep machine. Yeah, an open
bag of marshmallow isn't a stick.
Speaker 1 (23:04):
No.
Speaker 2 (23:04):
I took a couple of cat naps here at work
and such that. I was like, you know what, some
countries and companies embrace this, and there's a lot of
value to knocking out for twenty or thirty minutes during
a workday.
Speaker 1 (23:19):
Is that what that one hr email they sent out
was all about?
Speaker 2 (23:22):
Maybe?
Speaker 1 (23:23):
Did you try to convince them of that? Did you
go to them and say, you know, some countries really
embrace this. Why don't you guys be more more continental?
Speaker 3 (23:32):
At least don't fire me?
Speaker 1 (23:34):
Right? Yeah? So yeah, so this is this is a
kin to that, you know, falling asleep, But the key
here is that it's unplanned and with narclepsy it is
straight up irresistible, you know, like when you sit up
and you like open your eyes a little bit, You're like, wow,
I can't fall asleep. I I gotta stay awake because
I'm being paid right now. Like, if you have narclepsy,
(23:55):
you can't do that. You just fall asleep and you're out.
And the other key is you feel really good and
freshed right after one of those sleep attacks, yeah.
Speaker 2 (24:05):
Which is it's weird to think that ten seconds of
that can refresh you.
Speaker 1 (24:11):
I know, it is very weird, but that's part of
it for sure.
Speaker 2 (24:15):
So cataplexy, which we've talked about, the fainting goat like
thing you mentioned. Positive emotions can trigger it, being surprised, laughter, elation,
sometimes anger, which is not positive, but intense emotions like
that can trigger this. And it can be everything from
like you said, your head just sort of nodding down
(24:37):
to full on just collapsing, yeah.
Speaker 1 (24:40):
Which is called a drop attack, which are kind of dangerous.
You can get banged up pretty bad because this is
not necessarily you falling asleep or fainting or as a
matter of fact, it's not that Yeah, you're up, you're away,
so totally conscious you are. You just can't control your
muscles all of a sudden for a very short period
of time.
Speaker 3 (25:00):
Yeah.
Speaker 2 (25:00):
And interestingly, and which is a good news which is
good news, is that as you get older, cataplexy amount
actually improve.
Speaker 1 (25:09):
Yeah, that is good news because.
Speaker 2 (25:11):
Taking a fall in the hallway at you know, eighty
years old is much different than at eighteen.
Speaker 1 (25:16):
For sure. Let's see. Oh, there's also sleep paralysis, which
we did an entire episode on Yeah, it's not fun.
It frequently is accompanied by hallucinations, which is another symptom
we'll talk about next. But sleep paralysis was first described
by a physician who had a patient that presented with narcolepsy,
(25:37):
and this guy figured out there was such a thing
as sleep paralysis. But it's basically when you're falling asleep
or waking up, there's a there's a like a few
fleeting moments where you can't move at all. You're paralyzed. Yeah,
and it's not pleasant one bit. So if you are
having a sleep attack and you're coming in and out
of sleep, you know, a bunch of times a day,
(25:59):
and you feel so paralyzed as you're coming in and
out of sleep and you don't know what's going on,
it can make the whole narcoleptic experience a lot more terrifying.
Speaker 2 (26:11):
Yeah, as well, hallucinations. These can come at the onset
of sleep or at the end of sleep. They can
be really scary. Sometimes it could just be hearing a noise.
What was the one thing we talked about at the time,
where you hear a loud noise exploding head. That's right,
exploding head. Somehow, all this seems to be related somehow.
Speaker 1 (26:34):
Oh yeah, right, yeah, I think so. Yeah. I think
a lot of it has to do with the neurons
that we'll talk about in a little bit.
Speaker 2 (26:41):
So the hallucinations, when they happen when you're waking up,
they're called hypnopompic, and when you're falling asleep, those are
the hypnagogic that we mentioned earlier.
Speaker 1 (26:53):
Yeah, and again they very frequently accompany sleep paralysis, and
that like you can't move and you're hallucinating. A demon's
standing on your chest, right, and that's why you can't move.
And again this is happening to you many many times
a day against your will, and it makes it unpleasant.
And then there's also something called disrupted nighttime sleep, which
(27:15):
is basically the exact polar opposite of excessive daytime sleepiness,
where during the night, when everybody else is asleep and
when you wish you were sleeping, you might be wide awake,
so that again your sleep pattern is not concentrated into
eight hours at night, it's spread out in about eight
hours throughout a twenty four hour period.
Speaker 3 (27:36):
That's right.
Speaker 2 (27:37):
So we talked a lot about the various sort of
explanations for this over the years what they thought was
going on, and that it wasn't until the nineteen nineties
that they kind of zeroed in on what they think
is going on now, which to me and you holds
a lot of promise. But nineteen ninety eight was the
year that they finally discovered and isolated the chemical in
(28:00):
the brain that seems to be the cause of all this,
and it's called hypocretan.
Speaker 3 (28:06):
Hippocretan.
Speaker 1 (28:08):
I want to say, hypocretan.
Speaker 3 (28:10):
How do you too, So let's do, okay, hypocretan.
Speaker 1 (28:14):
Yeah, So they isolated that, and there we have our cousins,
the rats, to thank for this, because they did a
lot of rats tests and figured out from those tests
just how how this whole thing works. But what they
figured out is that hypocretan has some it has a
few different functions, but its main function is maintaining wakefulness
(28:38):
in US humans and it is a it's a peptide.
It also has another name, Chuck called erexin, and it's
the exact same neurochemical, but it would just happen to
be discovered independently by two different groups at about the
same time, so it has two names. Still, they haven't
settled on one. But it basically goes around and says, hey, serotonin,
(28:58):
you're looking good, here's a little boost. Hey, neuro epinephrine,
you're looking great yourself. Here's another little boost. And so
all of these neurochemicals that keep us awake and alert
get a boost from hypocretin so that they can do
their job better. And what they found is that people
with type one narcolepsy have about ninety to ninety five
(29:22):
percent fewer of this very specialized cluster of neurons in
the brain that are responsible for producing all of the
hypocretin in our bodies.
Speaker 2 (29:32):
Yeah, that's case closed, right, basically.
Speaker 1 (29:35):
Yeah, I think the only thing left to explain is
twofold one, exactly why the hypocretin is the neurons that
produce hypocretin are so diminished. And it seems like they've
basically explained that one and then two what to do
about it? That's the big one.
Speaker 2 (29:53):
Yeah, and we should mention too that there are about
eighty six million, i'm sorry billion neurons in the brain
and only about between one hundred and two hundred thousand
neurons produce hypocretin. So it is a very specialized cluster
of neural cells.
Speaker 1 (30:09):
Yeah, but it also makes it really vulnerable too, and
they're all in one space in the rear of the hypothalamus,
So it's really weird that evolution was like, that's fine,
this is a really really really important chemical, but we're
just gonna localize it right here in this one spot
to just one hundred thousand neurons.
Speaker 2 (30:28):
Yeah. And it's also really weird that if you only
have type two narcolepsy, you don't show any decrease in hypocretin.
Speaker 1 (30:37):
Right right, that's just the one where you have sleep
attacks and not cataplexy, And it is really weird. And
that's why I was saying, like, I wonder if that's
going to be broken out eventually in the future into
its own disorder or disease. But the current thinking for
that is that that is a less pronounced or less
advanced case of type one and narcolepsy to where you're
(31:03):
probably going to eventually get cataplexy, or you may never
get cataplexy, but your your case of narcolepsy just stopped
progressing at something point. That's what they think currently.
Speaker 2 (31:16):
A lot of the sleepiness of narcolepsy. This you know,
it's a theory at least from researchers, is that it's
a consequence of sleep state instability.
Speaker 3 (31:26):
And that's something I know we.
Speaker 2 (31:28):
Talked about before, that that threshold between being awake and
being asleep and those lines getting blurred and crossing over,
and then I guess that must have been sleep paralysis
that we talked about that.
Speaker 1 (31:40):
I think so, because that's that is like an example
of like way that is like wakefulness intruding on ore
em sleep. It's almost like the opposite of narcolepsy. People
experiencing sleep paralysis without narcolepsy. It's kind of like that,
but it's it's ultimately that it's a consequence of your
(32:00):
brain no longer able to being able to hold the
switch down between the on off switch between sleep and wakefulness. Right,
So it's like hypocriten is the thumb that holds the
on off switch in place. Without it, that switch is
kind of hair trigger, so that it just kind of
(32:24):
can shift back and forth between on and off really
easily and really quickly. And so without that hypocriton, that's
that you can just kind of go in between wakefulness
and r EM sleep with no transition and just at
the drop of the hat basically, so they think that
that's it, that it is a lack of hypocriten that
(32:44):
is responsible at least for type one narcolepsy, which is
narcoleepsy with cataplexy.
Speaker 3 (32:52):
Should we take the break now?
Speaker 1 (32:54):
Sure?
Speaker 2 (32:55):
All right, let's take a break because we're going to
get into our third act here with a very what
I think is the most interesting part of all this,
which is what it has to do with your genes
and your immune system right after this, all right, so
(33:40):
I promise talk of genes and your immune system. This
is super interesting to me because I feel like they're
really zeroing in on what's going on here with this research.
Speaker 1 (33:52):
Dude, how many episodes have we done on stuff like
this where we're like, they think maybe this or studies
or stuff. Right, we have caught this at like peak
ripeness right before everybody knows that it's just so plain
and obvious and it's been talked about so much, but
right after all of these important advanced advancements in the
(34:14):
study of it have really kind of come together in jelled.
I mean, it is perfectly fresh.
Speaker 2 (34:19):
Yeah, it is a very rare satisfying feeling.
Speaker 1 (34:24):
I feel satisfied myself.
Speaker 2 (34:26):
So there they think there's a genetic basis for narcolepsy,
but the genes that are involved in narcolepsy really aren't
involved with sleep. It's about your immune system. So how
it goes is a little something like this. There, all right, man,
there are genes that code for these T cell receptors
(34:49):
and the h LA gene human leukocyte antigen. And not
everyone has this variant, but if you do, you're gonna
have about a twenty five percent greater chance of having narcolepsy.
Speaker 1 (35:01):
Yeah, that variant of the HLA gene very important.
Speaker 3 (35:04):
That's a big increase.
Speaker 1 (35:06):
Yeah, twenty five is for real because a lot of
those they'll show like the relative increase, it increases your risk,
you know, eighty percent, But if you look at the
absolute increase, it's like, well that you know, you have
you know, one point five times the chance or something
like that, twenty five times likely or is definitely a
huge increase. For sure. My hat is off to that one.
Speaker 3 (35:29):
Yeah.
Speaker 2 (35:29):
But so what they're thinking is that it's actually the
basis of narcolepsy is an autoimmune disease, and that is
what's killing off your immune system, is killing off those
hypocrete and producing neurons.
Speaker 1 (35:41):
Yes, yes, just like crones, irritable bowel syndrome, or rheumatoid arthritis,
it's your body turning on itself. It's mistaken, so it
attacks itself. Your immune system attacks your own body, and
in this case, in the case of narcolepsy, they think
that something about those hypocritin hypocretin producing neurons, I guess
(36:06):
are producing something that seems like an antigen to your body.
If you have that specific variant of that HLA gene
and it attacks them, kills off those neurons, you don't
have any hypocretan any longer, and so you can't maintain wakefulness,
and so sleep and wakefulness just toggle back and forth
throughout your day.
Speaker 2 (36:27):
Are you going to drop the streptococcus bomb?
Speaker 1 (36:29):
I think you should.
Speaker 3 (36:32):
I think I understand it.
Speaker 2 (36:34):
But just after the onset of narcolepsy, it looks like
you have an increased level of antibodies against streptococcus. And
that's like strep throat and there are other infections involved,
and so they've also tied that to the time of year.
Narcolepsy usually begins in late spring and early summer, which
would kind of make sense that there's an autoimmunitac going
(36:56):
on against those neurons, triggered by strep throat or some
other kind of infection you get during the winter.
Speaker 1 (37:02):
Yeah, Like your immune system just goes bonkers because of
STRAP and it's like, what else, what else can I
go after? I'm really prime to pumped, And for some
reason it goes after your hypocrete in producing neurons in
your hypothalamus.
Speaker 2 (37:14):
That's nuts.
Speaker 1 (37:15):
So your immune response is triggered by an actual infection,
they think, and the reason why they think this, and
it greatly pains me to reveal this, I know. But
there is a vaccine called Pandemics that is no longer
available anywhere in the world, but it was hot and
heavy as a vaccine against H one N one swine flu,
(37:37):
and it was a really potent vaccine against H one
N one swine flu, and some European Northern European countries
during the two thousand and nine to twenty eleven swine
flu pandemic chose to use this to inoculate their population
with right. Yeah, Well, there were reports that have been
backed up by studies, not just in Finland, which was
(38:01):
a big place where this happened, but in other places
like the UK did studies too that found the same results,
that there was a link between pandemics and narcolepsy, that
the pandemics triggered that immune response that ultimately led to
the immune system attacking the hypocretan producing neurons, so that
(38:23):
H one N one vaccine brought on a lifelong chronic
case of narcolepsy.
Speaker 3 (38:30):
Yeah, I thought that was hard to say.
Speaker 1 (38:32):
What, Yeah, it really was. I really really hate saying
stuff like that.
Speaker 2 (38:37):
I know, but you know what you gotta. We got
to preach the science, and the science appears valid here, agreed. Yeah,
dozens of kids in Finland developed narcolepsy, and I think
the new rate of cases of narcolepsy and kids increased
eight to twelvefold. And you know, I think out of
(38:58):
the fifty four kids who were diagnosed with narcolepsy, fifty
of them and had the vaccine, so fifty four.
Speaker 1 (39:04):
Yeah, And I mean these like, these numbers are really
really small, but if you think about it, so four
kids apparently in twenty ten would have been diagnosed with narcolepsy,
had that pandemic not happened in that or that particular
vaccine not been administered, but because it was, the number
was fifty four, not four. So even though the numbers
(39:27):
again absolutely are rather small percentage wise, that's an enormous,
a mind boggling increase in the number of narcolepsy diagnoses. Yeah,
and it was linked directly to that vaccine and they
I keep saying.
Speaker 2 (39:43):
That, and they caught it and it is no longer
being given anywhere. It was never available in the United States.
So Finland just sort of got the brunt of it.
Speaker 1 (39:54):
It seems like, yeah, Finland, the UK had a bunch.
Their rate was one case of diagnosed narcolepsy for every
fifty five thousand inoculations in children I think six months
to eighteen, but that washed out to like sixteen sixteen people,
(40:14):
which still I mean, if you're one of those people,
you're like, well, son of a gun, that really sucks.
But here's the key, and this is really really important,
and this is how we will be able to still
use a vaccine that is viable and potent and works
against swine flu without giving somebody narcolepsy. And that is
personalized drugs based on gene tests DNA tests. Because of
(40:42):
those fifty kids in Finland that receive the vaccine in
twenty ten that developed narcolepsy, every single one of them
carried that specific variant of the HLA gene that is
tied to narcolepsy. So if you just did a simple
DNA test, which hopefully will be widespread in just a
few years, you'd say, oh, no, I'm glad we did this.
(41:02):
You can't have pandemics, you might get narcolepsy, or basically
there's one hundred percent chance you're going to get narcolepsy.
We'll give you this other vaccine instead that has been
shown not to produce narcolepsy and people like you.
Speaker 2 (41:14):
That's right, and you can refer to our episode on
personalized medicine.
Speaker 1 (41:19):
Yes, right, we should do a follow up on that one.
Speaker 3 (41:22):
Yeah, I agree, So that on the list for six
years from now.
Speaker 1 (41:25):
So basically, you've got these genes that predispose you to
your immune system mistakenly attacking that part of your hypothalamus.
There has to be some sort of trigger, either an
infection or pandemics something like that. Typically, an infection was
stripped and then there seem to be two age windows
(41:45):
where you're particularly vulnerable around fifteen and around thirty six.
They have no idea about any of that. They just
have they're starting to put this data together.
Speaker 2 (41:56):
Yeah, I bet you they'll figure that out too, agreed.
Speaker 1 (41:59):
I really feel like narcolepsy is going to be like
totally and completely figured out in the next decade. I
cannot be more jazzed about it, really. Yeah. No, love science,
just figuring things out, you know, just doggedly, you know,
working and building on you know, somebody else's work. It's
just it's a beautiful thing when it's done right.
Speaker 2 (42:20):
Agreed. So, if you are going to be diagnosed with narcolepsy,
there are a couple of tests that they're going to
give you. One is called an overnight polysom no gram
that's right, a PSGH.
Speaker 3 (42:35):
And that is a test when you it's one of
those tests.
Speaker 2 (42:38):
It's like a sleep study, is when you go in
and sleep for them basically, and yeah, and they measure
a lot of things. They measure your brain waves, they
measure your heart rate, eye movements, limb movements, muscle tone, respiration,
get a lot of info there, and then they'll say now,
you're gonna This is gonna be followed by the multiple
sleep latency test, which also sounds kind of fun because
(43:02):
that measures how quickly you fall asleep for a nap
every couple of hours during the day.
Speaker 1 (43:07):
I know, when you have to go in for one,
You're like, I got to go to a doctor's appointment,
and he goes, oh, sorry, you go no, No, it's great.
It's going to be the greatest day of my life.
Speaker 3 (43:15):
Yeah, those rooms make me sleepy.
Speaker 2 (43:17):
I could see some people being like, oh, I can't
go sleep in a room. But I was well known
as a child for falling asleep in like a dentist
chair waiting waiting for the dentists to come in, or
in a waiting room for or not a waiting room,
but in the exam room for a doctor. I still
get sleepy in those just super clean, super cool, quiet
(43:39):
rooms with fluorescent lighting. It just zaps me.
Speaker 1 (43:42):
Yeah, that's very odd.
Speaker 2 (43:47):
So four or five nap opportunities during the day, they're
going to see how fast you fall asleep. And if
you fall as if you have narcolepsy, you're going to
fall asleep super easy compared to someone without narcolepsy.
Speaker 1 (43:59):
Right, so that's the that's a pretty big giveaway. If
they're still like, I don't know, this is all this,
you know, this patient history that we've taken and these
tests are inconclusive. They might test your cerebrospinal fluid because
hypocretan levels are very easily tested through that as fun. No,
not nearly as fun, because they're going to go through
(44:20):
the base of your skull, that hole in your skull
where your spinal cord.
Speaker 2 (44:23):
Oh yeah, I don't know.
Speaker 1 (44:25):
I know. I hope that that never befalls either one
of us and to anyone who's ever had to go
through that, we are very very sorry. Yeah, but that
also is looking like a place where they're trying to
figure out how to cure narcolepsy, because as it stands
right now, if you're diagnosed with narcolepsy, you've just been
given a lifelong chronic diagnosis. Yep, there's no cure for
(44:49):
narcolepsy as it stands right now, but there are treatments,
and from everything I read, if you are actively treating
your narcolepsy through a doctor, usually with prescriptions and also
like behavioral modification, not like you know, hooking you up
to a car battery and changing your behavior like that
more like making sure you stick to like a good
(45:11):
sleep pattern. You can very much keep your symptoms in
check for sure. It doesn't have to ruin your life.
The trouble is is that it's very frequently misdiagnosed and
it's underdiagnosed, and they think it's because it's it occurs
with so many comorbidities like depression, where the doctor's like, well,
(45:32):
sure you're falling asleep all day because you're just sitting
around on the couch, because you don't have any low
energy because you're depressed. Really, it's possible that you have
to developed depression because of the narcolepsy. They haven't figured
out if they're comorbid or if the if one causes
the other, but they're pretty sure that the narcilepsy causes
the depression.
Speaker 2 (45:53):
Yeah, you're probably going to get a prescription for something
it maybe or it's probably likely to be medaphanil these days.
Speaker 1 (46:01):
And we talked about that in Our is Science Phasing
Out Sleep episode.
Speaker 2 (46:05):
Yeah, we've done a bunch of sleep once. I forgot
about that one. Riddlin you might get you know, it
says in you know in the old days methamphetamines, but
they still prescribe a variation of speed for I'm not
sure if it's an earcolepsy, but I know an individual
that I was diagnosed with. I guess just extreme daytime sleepiness.
Speaker 1 (46:30):
They're in chores fast enough, no no.
Speaker 2 (46:33):
For falling or get just feeling really really sleepy during
the day, and did the sleep study and all that,
and they were prescribed kind of whatever the version of
speed is these days.
Speaker 1 (46:43):
Was when was that? When were they prescribed that? Was
at bout in the nineties last year? Oh really, I'm
surprised because from what I saw, medaphanil is like, Nope,
don't need anything else. Just take medafinil. You don't get
addicted to it. There are very few side effects. It's
supposed to just be like a wonder drug.
Speaker 2 (47:00):
Basically, anytime I hear that, I get dubious.
Speaker 1 (47:07):
Right, I think that's pretty smart. Actually, they might also
prescribe you antidepressant like an SSRI, which inhibits re uptake
a serotonin, which means you have more serotonin in your brain,
which would make sense because what hypocretin does is boost
your levels of serotonin and other neurochemicals, So this is
kind of going around that problem and just making you
(47:30):
have more serotonin than before, which apparently helps maintain ram
sleep the barrier between that and wakefulness a lot better.
Speaker 2 (47:42):
Yeah. And then the final thing, which is really interesting
and promising is they did the sort of logical thing,
which is, hey, maybe we can just get some more
hypocretin in your body, because if that's the problem, why
don't we just do that?
Speaker 1 (47:55):
So they cut out fat hauled legs of it for
you at the doctor's office.
Speaker 2 (48:00):
There are different methods cell transplantation, which is just implanting cells,
maybe implantation of the gene like gene therapy, maybe just
giving it through your nose or injecting it into your body.
Speaker 1 (48:15):
That's what I'm saying of core all work interest sisternally chuck,
which is again through the base of the skull in
the back of your head where your spinal cord goes
up to your brain. They can inject into your cerebrospinal
fluid like that too. Probably the least fun of all
of them, but they are They're on the case, basically,
(48:37):
is what that means.
Speaker 2 (48:39):
Yeah, And you know, we've talked sort of off and
on throughout this thing about your quality of life with narcolepsy.
It's obviously a serious thing. There can be besides just
like holding a job and socially and not being depressed
because you don't want to hang out with people because
you may be embarrassed by it. There's also so like
(49:00):
the very real chance of accidents. Some people are not
allowed to drive, some people are allowed to drive. It
kind of depends on I guess your diagnosis.
Speaker 3 (49:12):
School is tricky.
Speaker 2 (49:13):
Work can be tricky, although they do they do with
the Americans with Disabilities Act. They provide for letting people
take naps and stuff like that, which is kind of cool.
Speaker 1 (49:23):
It is. Yeah, if you have narcolepsy and you're at work,
you can say, hey, employer, I need some I need
a place to take a nap, and they'll say, okay,
that's great.
Speaker 2 (49:32):
We'll say right in here, and they're like, oh my god, Chuck's.
Speaker 1 (49:34):
In there, right Chuck. So there's I mean, it gets
even tighter though, Like there are people who who die
by suicide from narcolepsy. There's a girl named Katie Klak
who got pandemics and developed narcolepsy as a result, and
(49:54):
she ended up taking her life because she just it
just completely derailed things for she was in no way,
shape or form prepared for it, although I don't know
that anybody's prepared for it. And then also, like you
were saying, an accident can happen, and from what I read,
the risk of death and injury among people with narcolepsy
(50:15):
is almost twice that of the general population. Man through
things like car accidents or you know, cooking or going
up a ladder or something like that. If you suddenly
developed cataplexy or a sleep attack or something that's a
bad time to fall asleep or lose control of your muscles.
Speaker 2 (50:32):
You know, well, and at the very least you're gonna
have to really arrange your life to accommodate for this stuff.
Speaker 1 (50:38):
Right, you know. But again, if you are managing your symptoms,
you can lead a pretty normal life. I think it's
just a question of like getting diagnosed correctly. Yeah, yeah,
well that's it for narcolepsy. Hopefully we'll have it all
figured out and when we revisit it in five or
ten years, will be like, it was all right, everything.
Speaker 2 (51:00):
Was correct, It was all right.
Speaker 1 (51:03):
And since I said it was all right, it's time
for listener.
Speaker 3 (51:06):
Man, I'm going to call this soul Train feedback.
Speaker 1 (51:12):
Nice.
Speaker 2 (51:12):
That was a fun show, And this is from Julia. Hello, guys,
we really enjoyed your Soul Train episode. You did a
great job capturing the feeling and cultural significance of the show.
You depicted a brilliant, flawed Don Cornelius without negating his
profound contribution. There was a monthly black teenage magazine named
(51:33):
right on. This publication gave names to the dances and dancers.
We would read the ink off of the pages. Being
black in America then and now we watch mainstream America
love the culture while devaluing the people and criminalizing the young.
Thank you for this episode, and that is from Julia Pierce,
(51:54):
the president of the Tybee MLK Human Rights Committee.
Speaker 1 (51:58):
Nice Tybee Island. I guess in Georgia.
Speaker 3 (52:01):
I don't know, I guess so I hope.
Speaker 1 (52:02):
So that's great. Thanks a lot, Julia, much appreciated.
Speaker 2 (52:06):
Agreed.
Speaker 1 (52:07):
If you want to get in touch with us like
Julia did, give us props or just say hey, you
guys are doing this too much, or be quiet. We
never will but you can still say it. You can
send us an email to Stuff Podcast at iHeartRadio dot com.
Speaker 2 (52:25):
Stuff you Should Know is a production of iHeartRadio.
Speaker 1 (52:28):
For more podcasts my heart Radio, visit the iHeartRadio app,
Apple Podcasts, or wherever you listen to your favorite shows.
Hey, guys, it's me Josh, and for this week's select,
I'm going with our May twenty episode on narcolepsy. It's
one of those sysk esque episodes that covers something we've
all heard of but really know nothing about. And it's
deeply satisfying because it all makes sense and it fits
together once you understand it. Good stuff. I hope you
(00:23):
enjoy it.
Speaker 2 (00:29):
Welcome to Stuff you should know a production of iHeartRadio.
Speaker 1 (00:39):
Hey, and welcome to the podcast. I'm Josh Clark and
there's Charles w Chuck Bryan over there and still have
Jerry Chuck wake up huh and we're going to get
some mail for that.
Speaker 2 (00:53):
Right off of the bath, I feel quite refreshed.
Speaker 1 (00:57):
So, Chuck, you might have narcolepsy? Then if you just
fell asleep, were you able to resist that urge to
sleep just now?
Speaker 3 (01:04):
No.
Speaker 2 (01:05):
As soon as I heard Hey, welcome to the podcast,
I went lights out.
Speaker 1 (01:10):
I think that happens to a lot of people.
Speaker 2 (01:13):
Have you ever known anyone with narcolepsy?
Speaker 1 (01:15):
I haven't. The closest I've I've come to that is
watching my own private Idaho.
Speaker 3 (01:23):
Do you find that sleep inducing?
Speaker 1 (01:27):
No? No, there's a I think Oh, it's River Phoenix
or Keanu Reeves has.
Speaker 2 (01:31):
No, that's right, I forgot about that. I thought you
were saying it's so boring you can't stay awake.
Speaker 1 (01:36):
No, no, No, that's Cats.
Speaker 3 (01:40):
Did you see that?
Speaker 1 (01:42):
No, don't you remember that? I tried to make myself
go to sleep in Cats in the Middle.
Speaker 2 (01:46):
Oh that's right.
Speaker 1 (01:47):
No, I've not seen the movie.
Speaker 2 (01:48):
Now, yeah, that's what I was wondering about.
Speaker 1 (01:50):
After having been on movie crush. Now I can't tell
what's what anymore? What I said where? Uh?
Speaker 2 (01:57):
So my great aunt Laura had narcolepsy, which is my
paternal grandmother's sister, and I only met her a few times.
This is from my dad's side of the like the
Mississippi clan. So I think I only I only remember
going to Mississippi like once when I was a kid
and visiting her, and I just remember my brother and I.
(02:19):
This is my only memory of the visit is Scott
and I sitting in a room talking with her and
her being in the middle of a sentence and then
her head falling down and then ten seconds later she
would pick her head up and continue that sentence.
Speaker 1 (02:34):
Wow, like like without missing a beat or was there
like a oh, you know, was she aware that she
had just fallen asleep and woken up?
Speaker 2 (02:41):
In my memory from being like ten years old, she
didn't miss a beat and just finished her sentence like
right in the middle of a sentence and didn't mention it.
And my brother and I were just like, what is
going on here?
Speaker 1 (02:53):
But your dad didn't prepare you for it.
Speaker 2 (02:56):
I don't remember. I blocked out, you know, purposely blocked
out a lot of my childhood.
Speaker 1 (03:01):
Right right, So I don't know, but that got pulled
it into the shuffle.
Speaker 2 (03:06):
That's the only thing I remember. It may be a
child's memory that is a little trumped up, but that's
how I remember it.
Speaker 1 (03:15):
Wow. Man, Well, yeah, I've never known anybody with narcolepsy,
and based on that going into this whole episode, like
I was just basically going in like I'm sure most
of our listeners are where it's just like, yeah, just
somebody falls asleep in the middle of the day, they
can't help it, and then they wake back up and
who cares basically, you know. But the more that I've
(03:37):
researched this some more, I'm like, you know, if it
even if it were just that alone, it would be
pretty disruptive to your normal life, depending on how often
it happened to you, you know, every day. But the
fact is it's not just that alone, and there's a
lot of extra symptoms to it that make it frightening
or terrifying or depressing or just completely disruptive, or make
(04:00):
it so that you are maybe unable to hold down
a job or go to school. There's a it's actually
a much it's a much sadder condition than I think
most people think of because it seems innocuous. It's just like, hey,
you fall asleep here there, It's fine, you know, and
it's not There's a lot more to it than that.
Speaker 3 (04:18):
Yeah, for sure.
Speaker 2 (04:19):
I should also mention too that something that should not
be confused with narcolepsy is something that Emily's family has.
And I saw this when we would go to visit
when they lived in Ohio, when he would stay at
her parents' house in Bears, Well, you know, eating, drinking
during the day, such that by seven to eight o'clock
(04:40):
at night every night I would Emily and I would
look around, We're watching TV and there are four usually
three sleeping adults. And I dubbed it the gas leak,
which everyone in their family thought was hysterical.
Speaker 1 (04:55):
Right now, that's just played old funny.
Speaker 2 (04:58):
Yeah, that's that's not urcalepsy at all. That's just you know,
at what age does that start happening?
Speaker 3 (05:04):
Is what I want to know. Because I'm creeping up.
Speaker 2 (05:06):
There twenty one, because I can still jam laid into
the night. I'm still you know, I might be sleepy
the next day, but that's my only time when I
don't have a five year old m so I use
that time. I can stay up still till midnight one
in the morning. If I am doing something.
Speaker 1 (05:25):
That's really neat, you must have a lot of testosterone left.
Speaker 3 (05:29):
I don't think so well.
Speaker 1 (05:31):
I mean well, no, I mean like to have energy
after you know, a certain time of day is I
think I think you have a lot of testosterone chuck.
I would bet we're going to take you in for
a test after this.
Speaker 2 (05:45):
Well, I feel like it's money. I feel like it
kicks back in. Like I'm sleepy sometimes during the day,
but then when the night comes and my daughter's asleep,
I'm like, all right, this is my this is my
time to shine.
Speaker 1 (05:56):
No, that's very fortunate man, that you're not just like,
this is my time to Netflix and chill like you're
getting stuff done. I'm envious of you for that because
I get a little tired. But I definitely don't have narcolepsy.
I'm just kind of like I'm somewhere between you and
Emily's family. They guess correct.
Speaker 2 (06:14):
Yeah, So narcolepsy is it's a chronic disorder.
Speaker 3 (06:19):
It's a sleep disorder.
Speaker 2 (06:20):
And I know we've talked a little bit about this
in some of our other sleep disorder episodes, so much
so that I thought we might have actually covered this,
but I quadruple checked and we have not. But it's
characterized by a few things. One of the main tenants
that basically everybody that has narcolepsy has what's called excessive
daytime sleepiness.
Speaker 1 (06:42):
Right, that's what everybody thinks about when you think of narcolepsy.
Somebody just falling asleep. They can't help it, they're just
suddenly out.
Speaker 2 (06:48):
That's right.
Speaker 1 (06:49):
Yeah. They also call those sleep attacks, which is pretty cute.
And no matter what variation of narcolepsy you have, you
have excessive daytime sleepiness dys right.
Speaker 3 (07:03):
That's right. And this is not you know, this is
nothing new.
Speaker 2 (07:07):
We're just now sort of figuring it out a little
bit since the nineties, which we'll get to. But obviously
this has been happening since there have been people. They've
probably been suffering from narcolepsy, you know, a small percentage
of people. But it was first described in eighteen eighty
by a French physician named Jean Baptiste Edouard Guileneo not pair,
(07:32):
how would you have.
Speaker 1 (07:32):
Said it, Jean Baptiste dudoir jeleno is? That? Is it
a skipt to put that little uptick on the end.
Speaker 2 (07:41):
I think that's called an extant algou.
Speaker 1 (07:44):
Right, right, So yeah, that's how I would have said it.
But either way, I think we basically got it across.
He was a French physician from eighteen eighty.
Speaker 2 (07:52):
That's the that's right, yeah. And the origin of the
actual term is from Greek narca, which is or stupor.
Speaker 3 (08:01):
Stupor is one of my favorite.
Speaker 2 (08:02):
Words, and lepsis to attack or to seize.
Speaker 1 (08:06):
Right, So it's an attack of stupor basically is what
they what he meant when he coined that term. And
the reason Jean Baptiste dead war Jellineu came up with
this is because a thirty six year old wine cask
maker came to him and said, Hey, I think there
might be something wrong with me. I fall asleep suddenly
(08:29):
out of nowhere for one to five minutes two hundred
times a day, every day. What do you think? And
Jeleno said, I think I'm gonna make my career on you, buddy.
Speaker 3 (08:41):
I did the math there.
Speaker 2 (08:42):
If you average about two and a half minutes between
the one to five, that's about eight hours of dozing.
Speaker 1 (08:48):
Okay, I'm really glad you said that, Chuck, because this
was something that I had no idea about. But if
you take over a twenty four hour period somebody with
narcolepsy and put their amount of sleep next to somebody
without an ecolepsy over twenty four hours, it's going to
wash out roughly the same. Did you know that?
Speaker 3 (09:10):
I didn't know that.
Speaker 2 (09:11):
But does that mean that this guy dozed eight hours
a day and then stayed up all night or did
he sleep another five hours at night and just slept alit.
Speaker 1 (09:20):
No. So that's one of the one of the key
reasons that there is such a thing as excessive daytime
sleepiness as part of narcolepsy. It's that your sleep is
so disrupted that it's basically spread out over twenty four
hours rather than concentrated over eight hours at night. So
they're up and awake in the middle of the night
for very long periods, just like they fall asleep suddenly
(09:43):
during the day. But if you put all those bouts
of sleep together, even when they're trying at night and
then when they can't help it during the day, it
adds up to about the same that a person without
narcolepsy will sleep. That's my understanding.
Speaker 2 (09:57):
Now that's pretty remarkable.
Speaker 1 (09:59):
It is like the brain's like I'm getting sleep, whether
whether you like it or not. We're making this happen.
At least by twenty four hours, we're going to have
had enough.
Speaker 2 (10:10):
And of course, you know, since this has been you know,
we're talking about the eighteen eighties, there have been a
lot of explanations over the years, everyone from Freud to
you know, I was about to say legitimate doctors that
probably would offend certain people like I like Freud too,
but I.
Speaker 3 (10:24):
Meant, like, you know, never mind.
Speaker 2 (10:28):
Sure, but Freud of course said that sleep is an escape,
and he said, you know, narcolepsy is a lot of
times triggered by really intense emotions.
Speaker 3 (10:39):
So here's what I think.
Speaker 2 (10:41):
It's just an extreme defense mechanism that lets you escape
from those emotions.
Speaker 1 (10:46):
I love it. It's pretty Freudian. It's about as Freudian
an explanation for anything as I've heard. It's just classic. Right,
of course, it's just utterly wrong, but I love I
just think Freud's at ten that explaining the world were
great and valuable in the way that like preserving classic
art is.
Speaker 3 (11:07):
Yeah, I've been to his house.
Speaker 1 (11:09):
What where in Texas? Now?
Speaker 3 (11:11):
Yeah, the Sigmund Freud house in Tyler, Texas.
Speaker 1 (11:15):
There are a lot of Germans in Texas, although I
know he was Austrian.
Speaker 2 (11:19):
Yeah, I mean I believe I saw it in Vienna
if I'm not mistaken.
Speaker 1 (11:22):
That's neat, That is very neat. Was this when you
were backpacking?
Speaker 2 (11:26):
Yeah, of course, Chuck.
Speaker 1 (11:27):
You need to do a memoir of that time in
your life and call it backpacking to Freud's house.
Speaker 2 (11:35):
Okay, okay, So in the book could just be shaped
like a penis.
Speaker 1 (11:40):
Sometimes a book is just a book, Chuck.
Speaker 2 (11:42):
That's right.
Speaker 1 (11:43):
So Freud missed the mark a little bit, but still
again it's worth mentioning, just like appreciating art. It wasn't
until the sixties where they're like, okay, I think we're
starting to get some real clues here. And that was
when they first established that people with narcolepsy enter r
EM sleep during these bouts of narcolepsy, which you are
(12:05):
not supposed to do under normal sleep patterns, which we
talked about many many times before. Like you said, when
you fall asleep, it should take you a little while
to enter r EM sleep. That's a deeper phase of
your sleep pattern. Right with narcolepsy, they're out and into
r EM sleep so quickly that A different way to
(12:26):
characterize it that narcolepsy researchers put it is that ore
em activity it intrudes into wakefulness. The line between being
awake and being in deep RAM sleep is that blurred
for people with narcolepsy.
Speaker 2 (12:44):
Yeah, And I feel like I've occasionally, in a really
intense power nap had a dream, but that's only when
it's and I don't get to nap anymore. But that's
when I've just been so tired that I just nap
and fall asleep like immediately.
Speaker 1 (12:59):
That's neat. How about you? Do you feel refreshed when
you wake up.
Speaker 2 (13:03):
I tend to nap longer when I would nap, so
I wouldn't do the When I say power nap, I
don't mean the twenty minute disco nap.
Speaker 3 (13:10):
I mean you really power through for a couple of hours.
Speaker 1 (13:13):
Right, I thought you were recounting some of your cocaine
using days.
Speaker 3 (13:17):
No, no, no, I gotcha.
Speaker 1 (13:19):
So that was in the sixties. So they say, okay,
rim and narcolepsy they go together like chocolate and peanut butter. Right,
we're onto something here. But finally in the nineties they're like,
really have started to figure it out, and they've zeroed
in on the hypothalamus and specifically a small cluster of
cells in the rear of the hypothalamus that we'll talk
(13:41):
about later. And if you learn about that, and as
far as narcolepsy goes, you can find it pretty convincing
that we have begun at least to finally truly understand
the cause of narcolepsy.
Speaker 2 (13:53):
Yeah, I totally agree. It's they make a great case.
Speaker 3 (13:57):
Yeah, So if you want to talk to.
Speaker 2 (13:58):
Some initial stats, it occurs in all ethnic groups, It
has equal incidents on the gender spectrum.
Speaker 3 (14:07):
Evidently.
Speaker 1 (14:07):
Yeah, that's interesting.
Speaker 2 (14:09):
And yeah, because usually you would see it tilted one
way or the other.
Speaker 1 (14:13):
Yeah, for sure.
Speaker 2 (14:15):
And then as far as how often you're going to
see this, it's in about zero point three two point
one six percent of gen pop or about one in
two thousand people.
Speaker 1 (14:27):
Yeah, which makes it which classifies it as a rare disease, which,
by the way, shout out to, among several others, Rare
Diseases dot org for their take on narcolepsy, It was
very instructive.
Speaker 2 (14:40):
Is it a disease or a disorder or is it
a fine line?
Speaker 1 (14:44):
Geez? I think because there's a brain dysfunction that it
would be characterized as a disease, wouldn't you.
Speaker 3 (14:52):
I don't know.
Speaker 2 (14:52):
I still don't know the difference after all these years.
Speaker 1 (14:55):
So it was I mean, when it was considered an
ram sleep disor maybe it still is. It was considered
a parasomnia like sleepwalking or whatever, so that would have
been considered a disorder them. But I think it's a disease. Now, Okay, okay,
you want to take a break and come back and
talk about what narcolepsy is. Yes, okay, well we'll be
(15:17):
right back, everybody. Okay, we're back, and it turns out, Chuck,
(15:49):
that there are two types of narcolepsy, And just from
all of the research that we've done over the years
on interesting health stuff, this smells a lot to me
like something that's going to be broken out into its
own thing over time.
Speaker 2 (16:03):
Yeah, I agree, because we've seen that happen time and
time again. We have narcolepsy Type two, which is what
we were talking about, the sort of the more like
when you think of narcolepsy, this is probably what you're
thinking of Aunt Laura falling asleep during the middle of
a sentence.
Speaker 1 (16:20):
Right, And it's type two because it's by far less
prevalent than type one. And type one is narcolepsy like
you'd think of with the daytime excessive daytime sleepiness. But
on top of that, there's something called cataplexy too, and
cataplexy can exist on its own. It's the just sudden
(16:42):
loss of voluntary muscle function, like you can't keep your
head up because your neck muscles just went limp, or
your arms go limp, or something like that. And cataplexy
can exist on its own. It can exist in conjunction
with other diseases to or disorders, but It very frequently
coexists with narcolepsy, and one of the hallmarks of it
(17:04):
from what I understand, because it gets kind of confusing
and I couldn't fully find this out, Chuck, but I
think that it can exist in a person with narcolepsy
in conjunction with a sleep attack or separately to where
you just suddenly like can't hold your head up anymore.
(17:26):
The key is you're still conscious. Conscious. Oh my god,
I just turned into an illiterate seventh grader. You're still conscious.
You might look like you have just fainted or something
like that, depending on the severity of the cataplexic attack.
Speaker 2 (17:42):
Yeah, it's almost like a fainting goat, right.
Speaker 1 (17:44):
Yes, very much like that, Almost exactly like that, because
remember with the fainting goats, they would basically just fall
over because they were startled.
Speaker 2 (17:54):
Yeah.
Speaker 1 (17:54):
I think pretty much the same thing with cataplexy in humans,
although it seems to be more associated with positive emotions.
Speaker 3 (18:00):
That's so interesting. Yeah, we're going to get into that.
Speaker 2 (18:02):
There are four symptoms of narcolepsy, which we're going to
break down in a second. But they are excessive daytime sleepiness,
like we've talked about, there is the cataplexy, their sleep
sleep paralysis, and then hypnagogic hallucinations, and if you have narcolepsy,
(18:25):
you well, there's about a twenty to twenty five percent
chance that you have all four. And I don't think
there's any rhyme or reason which ones you do have.
But like we said, everybody has the excessive daytime sleepiness.
And they're also talking about a fifth beetle.
Speaker 1 (18:43):
I was going to say that too, Clarence was that
his name? Yeah? Or a Pooh said he was too.
Speaker 2 (18:51):
The fifth symptom, which is disturbed nocturnal sleep, which about
fifty percent of the patients have, but they haven't.
Speaker 3 (18:57):
I think that'll end up in there at some point.
Speaker 1 (19:00):
And technically there may be a sixth one too, which
is called automatic behavior. Where have you ever been like
driving and you're suddenly like five exits further than you
thought you were and you realize you just zoned out
and were just driving just fine, but you were you're
you're basically on autopilot.
Speaker 2 (19:18):
I don't know, I mean, is that like the same
as just daydreaming?
Speaker 1 (19:21):
Or maybe I think so. But there's like no recollection
of anything. You didn't note any landmarks that you just passed.
Or let's say you're gardening or something like that, you
don't you don't remember finishing digging the hole with a trowel.
It's it's you've just completed a task that you have
no memory of undertaking.
Speaker 3 (19:41):
I don't think that happens.
Speaker 1 (19:43):
Okay, so that's that's happened to me before. But that's
a symptom of It's an additional symptom. It's not a
classic symptom. But they're starting to figure out that it
is a symptom of narcolepsy.
Speaker 2 (19:53):
Yes, so you're like, I just I went in my
garage one day and I had built a penny farthing, right,
no memory of that how it got there. So it
usually starts out in adolescence, which surprised me.
Speaker 3 (20:06):
I did not know.
Speaker 2 (20:07):
That, just maybe because my aunt Laura characterized it as
something you got later in life. But they do worsen
with age, so maybe that does make sense after all.
And sometimes your symptoms can be very steady. Sometimes it
can be months or years in between changes, and sometimes
the symptoms change a lot very quickly.
Speaker 1 (20:27):
Right, But the symptom that again, one hundred percent of
people with narcolepsy have is excessive daytime sleepiness. In almost
every case of narcolepsy, that is the first symptom that starts.
You almost never start with the other ones. It's that
one first. And that's exactly what you think of where
(20:48):
somebody just falls asleep and they're out for a few
seconds to a few minutes, depending And it's not going
to be the same amount of time every time. They're
not going to have the same number of sleep attacks
every time. A lot of it has to do with
just how tired they are, like how poorly they slept
the night before. Yeah, that's going to make them more
susceptible to sleep attacks during the day. And this is
(21:10):
not the same as hitting the wall at three o'clock
because you ate lunch and all of your coffee from
the morning wore off. Yeah, I mean, it bears some
resemblance to it, but this is it is irresistible, this
urge to sleep or just sleep, it just comes on.
So that's a that's the main characteristic of narcolepsy. But
(21:32):
anybody who's kind of dozed off, like sitting in a
comfortable chair when it was you know, a little warmer
than normal at work, or something like that. Right, like
that is it bears a resemblance to that specific symptom
of narcolepsy. It's the other ones that you have in
conjunction with that that really make a narcolepsy like its
own disorder.
Speaker 2 (21:52):
Have you ever slept at any job you've ever had?
Speaker 1 (22:00):
It doesn't sound like me, but probably, I'm sure. I'm
sure I have you here or there? Why you well?
Speaker 2 (22:08):
I mean when I worked the midnight to seven am
shift at the Golden Pantry in Athens, I had a
regular routine of sleeping.
Speaker 3 (22:16):
Yeah, because you were.
Speaker 2 (22:17):
Allowed to close up the store and mop and do
things for like an hour. So I would close up
the store, go back in the back and lay down
on a little palette I made on top of a freezer.
Speaker 1 (22:29):
Nice, did you get some good sleep?
Speaker 3 (22:32):
I would?
Speaker 2 (22:33):
It was pretty hard sleep, And I will admit that
when I had a baby, I took a nap or
two right here in our own office.
Speaker 1 (22:43):
Oh, nice, can you tell me where is it still?
A secret?
Speaker 2 (22:47):
In one of the private telephone rooms.
Speaker 1 (22:50):
Oh, that would be a good place to take a nap.
Speaker 2 (22:52):
If you've ever gone in there and seen a pillow.
Then in the campstove, the sleep machine. Yeah, an open
bag of marshmallow isn't a stick.
Speaker 1 (23:04):
No.
Speaker 2 (23:04):
I took a couple of cat naps here at work
and such that. I was like, you know what, some
countries and companies embrace this, and there's a lot of
value to knocking out for twenty or thirty minutes during
a workday.
Speaker 1 (23:19):
Is that what that one hr email they sent out
was all about?
Speaker 2 (23:22):
Maybe?
Speaker 1 (23:23):
Did you try to convince them of that? Did you
go to them and say, you know, some countries really
embrace this. Why don't you guys be more more continental?
Speaker 3 (23:32):
At least don't fire me?
Speaker 1 (23:34):
Right? Yeah? So yeah, so this is this is a
kin to that, you know, falling asleep, But the key
here is that it's unplanned and with narclepsy it is
straight up irresistible, you know, like when you sit up
and you like open your eyes a little bit, You're like, wow,
I can't fall asleep. I I gotta stay awake because
I'm being paid right now. Like, if you have narclepsy,
(23:55):
you can't do that. You just fall asleep and you're out.
And the other key is you feel really good and
freshed right after one of those sleep attacks, yeah.
Speaker 2 (24:05):
Which is it's weird to think that ten seconds of
that can refresh you.
Speaker 1 (24:11):
I know, it is very weird, but that's part of
it for sure.
Speaker 2 (24:15):
So cataplexy, which we've talked about, the fainting goat like
thing you mentioned. Positive emotions can trigger it, being surprised, laughter, elation,
sometimes anger, which is not positive, but intense emotions like
that can trigger this. And it can be everything from
like you said, your head just sort of nodding down
(24:37):
to full on just collapsing, yeah.
Speaker 1 (24:40):
Which is called a drop attack, which are kind of dangerous.
You can get banged up pretty bad because this is
not necessarily you falling asleep or fainting or as a
matter of fact, it's not that Yeah, you're up, you're away,
so totally conscious you are. You just can't control your
muscles all of a sudden for a very short period
of time.
Speaker 3 (25:00):
Yeah.
Speaker 2 (25:00):
And interestingly, and which is a good news which is
good news, is that as you get older, cataplexy amount
actually improve.
Speaker 1 (25:09):
Yeah, that is good news because.
Speaker 2 (25:11):
Taking a fall in the hallway at you know, eighty
years old is much different than at eighteen.
Speaker 1 (25:16):
For sure. Let's see. Oh, there's also sleep paralysis, which
we did an entire episode on Yeah, it's not fun.
It frequently is accompanied by hallucinations, which is another symptom
we'll talk about next. But sleep paralysis was first described
by a physician who had a patient that presented with narcolepsy,
(25:37):
and this guy figured out there was such a thing
as sleep paralysis. But it's basically when you're falling asleep
or waking up, there's a there's a like a few
fleeting moments where you can't move at all. You're paralyzed. Yeah,
and it's not pleasant one bit. So if you are
having a sleep attack and you're coming in and out
of sleep, you know, a bunch of times a day,
(25:59):
and you feel so paralyzed as you're coming in and
out of sleep and you don't know what's going on,
it can make the whole narcoleptic experience a lot more terrifying.
Speaker 2 (26:11):
Yeah, as well, hallucinations. These can come at the onset
of sleep or at the end of sleep. They can
be really scary. Sometimes it could just be hearing a noise.
What was the one thing we talked about at the time,
where you hear a loud noise exploding head. That's right,
exploding head. Somehow, all this seems to be related somehow.
Speaker 1 (26:34):
Oh yeah, right, yeah, I think so. Yeah. I think
a lot of it has to do with the neurons
that we'll talk about in a little bit.
Speaker 2 (26:41):
So the hallucinations, when they happen when you're waking up,
they're called hypnopompic, and when you're falling asleep, those are
the hypnagogic that we mentioned earlier.
Speaker 1 (26:53):
Yeah, and again they very frequently accompany sleep paralysis, and
that like you can't move and you're hallucinating. A demon's
standing on your chest, right, and that's why you can't move.
And again this is happening to you many many times
a day against your will, and it makes it unpleasant.
And then there's also something called disrupted nighttime sleep, which
(27:15):
is basically the exact polar opposite of excessive daytime sleepiness,
where during the night, when everybody else is asleep and
when you wish you were sleeping, you might be wide awake,
so that again your sleep pattern is not concentrated into
eight hours at night, it's spread out in about eight
hours throughout a twenty four hour period.
Speaker 3 (27:36):
That's right.
Speaker 2 (27:37):
So we talked a lot about the various sort of
explanations for this over the years what they thought was
going on, and that it wasn't until the nineteen nineties
that they kind of zeroed in on what they think
is going on now, which to me and you holds
a lot of promise. But nineteen ninety eight was the
year that they finally discovered and isolated the chemical in
(28:00):
the brain that seems to be the cause of all this,
and it's called hypocretan.
Speaker 3 (28:06):
Hippocretan.
Speaker 1 (28:08):
I want to say, hypocretan.
Speaker 3 (28:10):
How do you too, So let's do, okay, hypocretan.
Speaker 1 (28:14):
Yeah, So they isolated that, and there we have our cousins,
the rats, to thank for this, because they did a
lot of rats tests and figured out from those tests
just how how this whole thing works. But what they
figured out is that hypocretan has some it has a
few different functions, but its main function is maintaining wakefulness
(28:38):
in US humans and it is a it's a peptide.
It also has another name, Chuck called erexin, and it's
the exact same neurochemical, but it would just happen to
be discovered independently by two different groups at about the
same time, so it has two names. Still, they haven't
settled on one. But it basically goes around and says, hey, serotonin,
(28:58):
you're looking good, here's a little boost. Hey, neuro epinephrine,
you're looking great yourself. Here's another little boost. And so
all of these neurochemicals that keep us awake and alert
get a boost from hypocretin so that they can do
their job better. And what they found is that people
with type one narcolepsy have about ninety to ninety five
(29:22):
percent fewer of this very specialized cluster of neurons in
the brain that are responsible for producing all of the
hypocretin in our bodies.
Speaker 2 (29:32):
Yeah, that's case closed, right, basically.
Speaker 1 (29:35):
Yeah, I think the only thing left to explain is
twofold one, exactly why the hypocretin is the neurons that
produce hypocretin are so diminished. And it seems like they've
basically explained that one and then two what to do
about it? That's the big one.
Speaker 2 (29:53):
Yeah, and we should mention too that there are about
eighty six million, i'm sorry billion neurons in the brain
and only about between one hundred and two hundred thousand
neurons produce hypocretin. So it is a very specialized cluster
of neural cells.
Speaker 1 (30:09):
Yeah, but it also makes it really vulnerable too, and
they're all in one space in the rear of the hypothalamus,
So it's really weird that evolution was like, that's fine,
this is a really really really important chemical, but we're
just gonna localize it right here in this one spot
to just one hundred thousand neurons.
Speaker 2 (30:28):
Yeah. And it's also really weird that if you only
have type two narcolepsy, you don't show any decrease in hypocretin.
Speaker 1 (30:37):
Right right, that's just the one where you have sleep
attacks and not cataplexy, And it is really weird. And
that's why I was saying, like, I wonder if that's
going to be broken out eventually in the future into
its own disorder or disease. But the current thinking for
that is that that is a less pronounced or less
advanced case of type one and narcolepsy to where you're
(31:03):
probably going to eventually get cataplexy, or you may never
get cataplexy, but your your case of narcolepsy just stopped
progressing at something point. That's what they think currently.
Speaker 2 (31:16):
A lot of the sleepiness of narcolepsy. This you know,
it's a theory at least from researchers, is that it's
a consequence of sleep state instability.
Speaker 3 (31:26):
And that's something I know we.
Speaker 2 (31:28):
Talked about before, that that threshold between being awake and
being asleep and those lines getting blurred and crossing over,
and then I guess that must have been sleep paralysis
that we talked about that.
Speaker 1 (31:40):
I think so, because that's that is like an example
of like way that is like wakefulness intruding on ore
em sleep. It's almost like the opposite of narcolepsy. People
experiencing sleep paralysis without narcolepsy. It's kind of like that,
but it's it's ultimately that it's a consequence of your
(32:00):
brain no longer able to being able to hold the
switch down between the on off switch between sleep and wakefulness. Right,
So it's like hypocriten is the thumb that holds the
on off switch in place. Without it, that switch is
kind of hair trigger, so that it just kind of
(32:24):
can shift back and forth between on and off really
easily and really quickly. And so without that hypocriton, that's
that you can just kind of go in between wakefulness
and r EM sleep with no transition and just at
the drop of the hat basically, so they think that
that's it, that it is a lack of hypocriten that
(32:44):
is responsible at least for type one narcolepsy, which is
narcoleepsy with cataplexy.
Speaker 3 (32:52):
Should we take the break now?
Speaker 1 (32:54):
Sure?
Speaker 2 (32:55):
All right, let's take a break because we're going to
get into our third act here with a very what
I think is the most interesting part of all this,
which is what it has to do with your genes
and your immune system right after this, all right, so
(33:40):
I promise talk of genes and your immune system. This
is super interesting to me because I feel like they're
really zeroing in on what's going on here with this research.
Speaker 1 (33:52):
Dude, how many episodes have we done on stuff like
this where we're like, they think maybe this or studies
or stuff. Right, we have caught this at like peak
ripeness right before everybody knows that it's just so plain
and obvious and it's been talked about so much, but
right after all of these important advanced advancements in the
(34:14):
study of it have really kind of come together in jelled.
I mean, it is perfectly fresh.
Speaker 2 (34:19):
Yeah, it is a very rare satisfying feeling.
Speaker 1 (34:24):
I feel satisfied myself.
Speaker 2 (34:26):
So there they think there's a genetic basis for narcolepsy,
but the genes that are involved in narcolepsy really aren't
involved with sleep. It's about your immune system. So how
it goes is a little something like this. There, all right, man,
there are genes that code for these T cell receptors
(34:49):
and the h LA gene human leukocyte antigen. And not
everyone has this variant, but if you do, you're gonna
have about a twenty five percent greater chance of having narcolepsy.
Speaker 1 (35:01):
Yeah, that variant of the HLA gene very important.
Speaker 3 (35:04):
That's a big increase.
Speaker 1 (35:06):
Yeah, twenty five is for real because a lot of
those they'll show like the relative increase, it increases your risk,
you know, eighty percent, But if you look at the
absolute increase, it's like, well that you know, you have
you know, one point five times the chance or something
like that, twenty five times likely or is definitely a
huge increase. For sure. My hat is off to that one.
Speaker 3 (35:29):
Yeah.
Speaker 2 (35:29):
But so what they're thinking is that it's actually the
basis of narcolepsy is an autoimmune disease, and that is
what's killing off your immune system, is killing off those
hypocrete and producing neurons.
Speaker 1 (35:41):
Yes, yes, just like crones, irritable bowel syndrome, or rheumatoid arthritis,
it's your body turning on itself. It's mistaken, so it
attacks itself. Your immune system attacks your own body, and
in this case, in the case of narcolepsy, they think
that something about those hypocritin hypocretin producing neurons, I guess
(36:06):
are producing something that seems like an antigen to your body.
If you have that specific variant of that HLA gene
and it attacks them, kills off those neurons, you don't
have any hypocretan any longer, and so you can't maintain wakefulness,
and so sleep and wakefulness just toggle back and forth
throughout your day.
Speaker 2 (36:27):
Are you going to drop the streptococcus bomb?
Speaker 1 (36:29):
I think you should.
Speaker 3 (36:32):
I think I understand it.
Speaker 2 (36:34):
But just after the onset of narcolepsy, it looks like
you have an increased level of antibodies against streptococcus. And
that's like strep throat and there are other infections involved,
and so they've also tied that to the time of year.
Narcolepsy usually begins in late spring and early summer, which
would kind of make sense that there's an autoimmunitac going
(36:56):
on against those neurons, triggered by strep throat or some
other kind of infection you get during the winter.
Speaker 1 (37:02):
Yeah, Like your immune system just goes bonkers because of
STRAP and it's like, what else, what else can I
go after? I'm really prime to pumped, And for some
reason it goes after your hypocrete in producing neurons in
your hypothalamus.
Speaker 2 (37:14):
That's nuts.
Speaker 1 (37:15):
So your immune response is triggered by an actual infection,
they think, and the reason why they think this, and
it greatly pains me to reveal this, I know. But
there is a vaccine called Pandemics that is no longer
available anywhere in the world, but it was hot and
heavy as a vaccine against H one N one swine flu,
(37:37):
and it was a really potent vaccine against H one
N one swine flu, and some European Northern European countries
during the two thousand and nine to twenty eleven swine
flu pandemic chose to use this to inoculate their population
with right. Yeah, Well, there were reports that have been
backed up by studies, not just in Finland, which was
(38:01):
a big place where this happened, but in other places
like the UK did studies too that found the same results,
that there was a link between pandemics and narcolepsy, that
the pandemics triggered that immune response that ultimately led to
the immune system attacking the hypocretan producing neurons, so that
(38:23):
H one N one vaccine brought on a lifelong chronic
case of narcolepsy.
Speaker 3 (38:30):
Yeah, I thought that was hard to say.
Speaker 1 (38:32):
What, Yeah, it really was. I really really hate saying
stuff like that.
Speaker 2 (38:37):
I know, but you know what you gotta. We got
to preach the science, and the science appears valid here, agreed. Yeah,
dozens of kids in Finland developed narcolepsy, and I think
the new rate of cases of narcolepsy and kids increased
eight to twelvefold. And you know, I think out of
(38:58):
the fifty four kids who were diagnosed with narcolepsy, fifty
of them and had the vaccine, so fifty four.
Speaker 1 (39:04):
Yeah, And I mean these like, these numbers are really
really small, but if you think about it, so four
kids apparently in twenty ten would have been diagnosed with narcolepsy,
had that pandemic not happened in that or that particular
vaccine not been administered, but because it was, the number
was fifty four, not four. So even though the numbers
(39:27):
again absolutely are rather small percentage wise, that's an enormous,
a mind boggling increase in the number of narcolepsy diagnoses. Yeah,
and it was linked directly to that vaccine and they
I keep saying.
Speaker 2 (39:43):
That, and they caught it and it is no longer
being given anywhere. It was never available in the United States.
So Finland just sort of got the brunt of it.
Speaker 1 (39:54):
It seems like, yeah, Finland, the UK had a bunch.
Their rate was one case of diagnosed narcolepsy for every
fifty five thousand inoculations in children I think six months
to eighteen, but that washed out to like sixteen sixteen people,
(40:14):
which still I mean, if you're one of those people,
you're like, well, son of a gun, that really sucks.
But here's the key, and this is really really important,
and this is how we will be able to still
use a vaccine that is viable and potent and works
against swine flu without giving somebody narcolepsy. And that is
personalized drugs based on gene tests DNA tests. Because of
(40:42):
those fifty kids in Finland that receive the vaccine in
twenty ten that developed narcolepsy, every single one of them
carried that specific variant of the HLA gene that is
tied to narcolepsy. So if you just did a simple
DNA test, which hopefully will be widespread in just a
few years, you'd say, oh, no, I'm glad we did this.
(41:02):
You can't have pandemics, you might get narcolepsy, or basically
there's one hundred percent chance you're going to get narcolepsy.
We'll give you this other vaccine instead that has been
shown not to produce narcolepsy and people like you.
Speaker 2 (41:14):
That's right, and you can refer to our episode on
personalized medicine.
Speaker 1 (41:19):
Yes, right, we should do a follow up on that one.
Speaker 3 (41:22):
Yeah, I agree, So that on the list for six
years from now.
Speaker 1 (41:25):
So basically, you've got these genes that predispose you to
your immune system mistakenly attacking that part of your hypothalamus.
There has to be some sort of trigger, either an
infection or pandemics something like that. Typically, an infection was
stripped and then there seem to be two age windows
(41:45):
where you're particularly vulnerable around fifteen and around thirty six.
They have no idea about any of that. They just
have they're starting to put this data together.
Speaker 2 (41:56):
Yeah, I bet you they'll figure that out too, agreed.
Speaker 1 (41:59):
I really feel like narcolepsy is going to be like
totally and completely figured out in the next decade. I
cannot be more jazzed about it, really. Yeah. No, love science,
just figuring things out, you know, just doggedly, you know,
working and building on you know, somebody else's work. It's
just it's a beautiful thing when it's done right.
Speaker 2 (42:20):
Agreed. So, if you are going to be diagnosed with narcolepsy,
there are a couple of tests that they're going to
give you. One is called an overnight polysom no gram
that's right, a PSGH.
Speaker 3 (42:35):
And that is a test when you it's one of
those tests.
Speaker 2 (42:38):
It's like a sleep study, is when you go in
and sleep for them basically, and yeah, and they measure
a lot of things. They measure your brain waves, they
measure your heart rate, eye movements, limb movements, muscle tone, respiration,
get a lot of info there, and then they'll say now,
you're gonna This is gonna be followed by the multiple
sleep latency test, which also sounds kind of fun because
(43:02):
that measures how quickly you fall asleep for a nap
every couple of hours during the day.
Speaker 1 (43:07):
I know, when you have to go in for one,
You're like, I got to go to a doctor's appointment,
and he goes, oh, sorry, you go no, No, it's great.
It's going to be the greatest day of my life.
Speaker 3 (43:15):
Yeah, those rooms make me sleepy.
Speaker 2 (43:17):
I could see some people being like, oh, I can't
go sleep in a room. But I was well known
as a child for falling asleep in like a dentist
chair waiting waiting for the dentists to come in, or
in a waiting room for or not a waiting room,
but in the exam room for a doctor. I still
get sleepy in those just super clean, super cool, quiet
(43:39):
rooms with fluorescent lighting. It just zaps me.
Speaker 1 (43:42):
Yeah, that's very odd.
Speaker 2 (43:47):
So four or five nap opportunities during the day, they're
going to see how fast you fall asleep. And if
you fall as if you have narcolepsy, you're going to
fall asleep super easy compared to someone without narcolepsy.
Speaker 1 (43:59):
Right, so that's the that's a pretty big giveaway. If
they're still like, I don't know, this is all this,
you know, this patient history that we've taken and these
tests are inconclusive. They might test your cerebrospinal fluid because
hypocretan levels are very easily tested through that as fun. No,
not nearly as fun, because they're going to go through
(44:20):
the base of your skull, that hole in your skull
where your spinal cord.
Speaker 2 (44:23):
Oh yeah, I don't know.
Speaker 1 (44:25):
I know. I hope that that never befalls either one
of us and to anyone who's ever had to go
through that, we are very very sorry. Yeah, but that
also is looking like a place where they're trying to
figure out how to cure narcolepsy, because as it stands
right now, if you're diagnosed with narcolepsy, you've just been
given a lifelong chronic diagnosis. Yep, there's no cure for
(44:49):
narcolepsy as it stands right now, but there are treatments,
and from everything I read, if you are actively treating
your narcolepsy through a doctor, usually with prescriptions and also
like behavioral modification, not like you know, hooking you up
to a car battery and changing your behavior like that
more like making sure you stick to like a good
(45:11):
sleep pattern. You can very much keep your symptoms in
check for sure. It doesn't have to ruin your life.
The trouble is is that it's very frequently misdiagnosed and
it's underdiagnosed, and they think it's because it's it occurs
with so many comorbidities like depression, where the doctor's like, well,
(45:32):
sure you're falling asleep all day because you're just sitting
around on the couch, because you don't have any low
energy because you're depressed. Really, it's possible that you have
to developed depression because of the narcolepsy. They haven't figured
out if they're comorbid or if the if one causes
the other, but they're pretty sure that the narcilepsy causes
the depression.
Speaker 2 (45:53):
Yeah, you're probably going to get a prescription for something
it maybe or it's probably likely to be medaphanil these days.
Speaker 1 (46:01):
And we talked about that in Our is Science Phasing
Out Sleep episode.
Speaker 2 (46:05):
Yeah, we've done a bunch of sleep once. I forgot
about that one. Riddlin you might get you know, it
says in you know in the old days methamphetamines, but
they still prescribe a variation of speed for I'm not
sure if it's an earcolepsy, but I know an individual
that I was diagnosed with. I guess just extreme daytime sleepiness.
Speaker 1 (46:30):
They're in chores fast enough, no no.
Speaker 2 (46:33):
For falling or get just feeling really really sleepy during
the day, and did the sleep study and all that,
and they were prescribed kind of whatever the version of
speed is these days.
Speaker 1 (46:43):
Was when was that? When were they prescribed that? Was
at bout in the nineties last year? Oh really, I'm
surprised because from what I saw, medaphanil is like, Nope,
don't need anything else. Just take medafinil. You don't get
addicted to it. There are very few side effects. It's
supposed to just be like a wonder drug.
Speaker 2 (47:00):
Basically, anytime I hear that, I get dubious.
Speaker 1 (47:07):
Right, I think that's pretty smart. Actually, they might also
prescribe you antidepressant like an SSRI, which inhibits re uptake
a serotonin, which means you have more serotonin in your brain,
which would make sense because what hypocretin does is boost
your levels of serotonin and other neurochemicals, So this is
kind of going around that problem and just making you
(47:30):
have more serotonin than before, which apparently helps maintain ram
sleep the barrier between that and wakefulness a lot better.
Speaker 2 (47:42):
Yeah. And then the final thing, which is really interesting
and promising is they did the sort of logical thing,
which is, hey, maybe we can just get some more
hypocretin in your body, because if that's the problem, why
don't we just do that?
Speaker 1 (47:55):
So they cut out fat hauled legs of it for
you at the doctor's office.
Speaker 2 (48:00):
There are different methods cell transplantation, which is just implanting cells,
maybe implantation of the gene like gene therapy, maybe just
giving it through your nose or injecting it into your body.
Speaker 1 (48:15):
That's what I'm saying of core all work interest sisternally chuck,
which is again through the base of the skull in
the back of your head where your spinal cord goes
up to your brain. They can inject into your cerebrospinal
fluid like that too. Probably the least fun of all
of them, but they are They're on the case, basically,
(48:37):
is what that means.
Speaker 2 (48:39):
Yeah, And you know, we've talked sort of off and
on throughout this thing about your quality of life with narcolepsy.
It's obviously a serious thing. There can be besides just
like holding a job and socially and not being depressed
because you don't want to hang out with people because
you may be embarrassed by it. There's also so like
(49:00):
the very real chance of accidents. Some people are not
allowed to drive, some people are allowed to drive. It
kind of depends on I guess your diagnosis.
Speaker 3 (49:12):
School is tricky.
Speaker 2 (49:13):
Work can be tricky, although they do they do with
the Americans with Disabilities Act. They provide for letting people
take naps and stuff like that, which is kind of cool.
Speaker 1 (49:23):
It is. Yeah, if you have narcolepsy and you're at work,
you can say, hey, employer, I need some I need
a place to take a nap, and they'll say, okay,
that's great.
Speaker 2 (49:32):
We'll say right in here, and they're like, oh my god, Chuck's.
Speaker 1 (49:34):
In there, right Chuck. So there's I mean, it gets
even tighter though, Like there are people who who die
by suicide from narcolepsy. There's a girl named Katie Klak
who got pandemics and developed narcolepsy as a result, and
(49:54):
she ended up taking her life because she just it
just completely derailed things for she was in no way,
shape or form prepared for it, although I don't know
that anybody's prepared for it. And then also, like you
were saying, an accident can happen, and from what I read,
the risk of death and injury among people with narcolepsy
(50:15):
is almost twice that of the general population. Man through
things like car accidents or you know, cooking or going
up a ladder or something like that. If you suddenly
developed cataplexy or a sleep attack or something that's a
bad time to fall asleep or lose control of your muscles.
Speaker 2 (50:32):
You know, well, and at the very least you're gonna
have to really arrange your life to accommodate for this stuff.
Speaker 1 (50:38):
Right, you know. But again, if you are managing your symptoms,
you can lead a pretty normal life. I think it's
just a question of like getting diagnosed correctly. Yeah, yeah,
well that's it for narcolepsy. Hopefully we'll have it all
figured out and when we revisit it in five or
ten years, will be like, it was all right, everything.
Speaker 2 (51:00):
Was correct, It was all right.
Speaker 1 (51:03):
And since I said it was all right, it's time
for listener.
Speaker 3 (51:06):
Man, I'm going to call this soul Train feedback.
Speaker 1 (51:12):
Nice.
Speaker 2 (51:12):
That was a fun show, And this is from Julia. Hello, guys,
we really enjoyed your Soul Train episode. You did a
great job capturing the feeling and cultural significance of the show.
You depicted a brilliant, flawed Don Cornelius without negating his
profound contribution. There was a monthly black teenage magazine named
(51:33):
right on. This publication gave names to the dances and dancers.
We would read the ink off of the pages. Being
black in America then and now we watch mainstream America
love the culture while devaluing the people and criminalizing the young.
Thank you for this episode, and that is from Julia Pierce,
(51:54):
the president of the Tybee MLK Human Rights Committee.
Speaker 1 (51:58):
Nice Tybee Island. I guess in Georgia.
Speaker 3 (52:01):
I don't know, I guess so I hope.
Speaker 1 (52:02):
So that's great. Thanks a lot, Julia, much appreciated.
Speaker 2 (52:06):
Agreed.
Speaker 1 (52:07):
If you want to get in touch with us like
Julia did, give us props or just say hey, you
guys are doing this too much, or be quiet. We
never will but you can still say it. You can
send us an email to Stuff Podcast at iHeartRadio dot com.
Speaker 2 (52:25):
Stuff you Should Know is a production of iHeartRadio.
Speaker 1 (52:28):
For more podcasts my heart Radio, visit the iHeartRadio app,
Apple Podcasts, or wherever you listen to your favorite shows.
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