May 28, 2020 • 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.
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Episode Transcript
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Speaker 1 (00:01):
Welcome to Stuff. You should know a production of My
Heart Radios How Stuff Works. Hey you, and welcome to
the podcast. I'm Josh Clark, and there's Charles W. Chuck
Bryan over there, and uh, I still know Jerry Chuck
wake up. Huh, We're gonna get some mail for that.
(00:25):
Right off of the bath, I feel quite refreshed. So, Chuck,
you might have an earcolepsy. Then if you just fell asleep,
were you able to resist that urge to sleep just now? No?
As soon as I heard, Hey, welcome to the podcast,
I went lights out. I think that happens to a
lot of people. Have you ever known anyone with narcolepsy?
(00:47):
I haven't. The closest I've I've come to that is
um watching my own private Idaho. What do you find that? Uh?
Sleep inducing? No? No, they is. I think it's remember
Phoenix or Keiana Reeves? Has I forgot about that? I
thought you were saying it so boring you can't stay awake? No? No, No,
(01:10):
that's Cats. Did you see that? No? Don't you remember that?
I tried to make myself go to sleep in Cats
in the Middle. Now I have not seen the movie. Now, yeah,
that's what I was wondering about. After having been on
movie crush, I'm now I can't tell what's what anymore.
What I said where? Uh So, my great aunt Laura
(01:32):
had narcolepsy, which is my paternal grandmother's sister, and uh
I only met her a few times. This is from
my my dad's side of the like the Mississippi clan.
So I think I only I only remember going to
Mississippi like once when I was a kid and visiting her,
and I just remember my brother and I. This is
my only memory of the visit is Scott and I
(01:53):
sitting in a room talking with her and her being
in the middle of a sentence and then her head
falling down and then ten seconds later she would pick
her head up and continue that sentence. Wow, like like
without missing a beat or was there like uh oh
you know that? Was she aware that she had just
fallen asleep and woken up. In my memory from being
(02:15):
like ten years old, she didn't miss a beat and
just finished her sentence like right in the middle of
a sentence and didn't mention it. And my brother and
I were just like, what is going on here? But
your dad didn't prepare you for it. I don't remember.
I blocked out, you know, purposely blocked out a lot
of my childhood right right, So I don't know, but
I hold it into the shuffle. That's the only thing
(02:39):
I remember it. It may be a child's memory that
is a little trumped up, but um, that's how I
remember it. Wow. Man, Well, yeah, I've never known anybody
with NARCILEPSI, and um, based on that going into this
whole episode, like I was just basically going in like
I'm sure most of our listeners are where it's just like, yeah,
(03:00):
somebody falls asleep in the middle of the day, they
can't help it, and then they wake back up, and
who cares basically, you know. But the more that I've
researched this some more, I'm like, you know, if it
even if it were just that alone, it would be
pretty disruptive to your normal life, depending on how often
it happened to you, you know, every day. But the
(03:22):
fact is it's not just that alone, and there's a
lot of extra symptoms to it that make it frightening
or terrifying or depressing or just completely disruptive or make
it so that you are, um, maybe unable to hold
down a job or go to school. There's a it's
actually a much um it's a much sadder condition than
I think most people think of because it seems innocuous.
(03:44):
It's just like, hey, you fall asleep here there, it's fine,
you know, and it's not. It's there's a lot more
to it than that. Yeah, for sure. UM. I should
also mention too that something that should not be confused
with narcolepsy is something that Emily's family has. Uh and
I saw this when we would go to visit when
they lived in Ohio, when he would stay at her
parents house. Well, you know, eating, drinking during the day,
(04:09):
such that by seven to eight o'clock at night every night,
I would Emily and I would look around, We're watching
TV and there are four usually three sleeping adults. And uh,
I dubbed it the gas leak, which everyone in their
family thought was hysterical. Right now, that's just play a
little funny. Yeah, that's that's not an earcalepsy at all.
(04:32):
That's just you know, at what age does that start happening?
Is what I want to know. Because I'm creeping up there,
because I can still jam late into the night. I'm
still you know, I might be sleepy the next day,
but that's my only time when I don't have a
five year old, so I used that time. I can
(04:53):
stay up still till midnight one in the morning. If
I am doing something that's really neat, you must have
a lot of testostero and left. I don't think so well.
I mean well, no, I mean, um like to have
energy after you know, a certain time of day is
I think I think you have a lot of test testerone, chuck,
(05:14):
I would bet we're going to take you in for
a test after this. Well, I feel like it. I
feel like it kicks back in. Like I'm sleepy sometimes
during the day, but then when the night comes and
my daughter's to sleep, I'm like, all right, this is
my this is my time to shine. No, that's very
fortunate man, that you're not just like this is my
time to netflix and chill like you're getting stuff done.
I'm envious of you for that because I get a
(05:34):
little tired. But I definitely don't have an ourcalepsy. I'm
just kind of like I'm somewhere between you and Emily's family.
They guess the correct yeah, so uh. An oarcilepsy is Uh,
it's a chronic disorder. It's a sleep disorder. And I
know we've talked a little bit about this in some
(05:55):
of our other sleep disorder episodes, UM, so much so
that I thought we might have actually covered this, but
a quadruple checked and we have not. But UM, it's
characterized by a few things. UM. One of the main
tenants that basically everybody that has an eclepsy has what's
called excessive daytime sleepiness. Right, that's what everybody thinks about
(06:15):
when you think of narclepsy. Somebody just falling asleep. They
can't help it, they're just suddenly out, that's right. Yeah.
They also call those, um sleep attacks. It's pretty cute. Um.
And no matter what variation of narcalepsy you have, you
have excessive daytime sleepiness E D yes, right, that's right.
And UM, this is not you know, this is nothing new.
(06:38):
We're just now sort of figuring it out a little
bit since the nineties, which we'll get to. But obviously
this has been happening since there have been people, uh
they they've probably been suffering from an eclepsy, you know,
a small percentage of people. But it was first described
in eight eight by a French physician named Jean Baptiste
(07:00):
Eduard Guilleneo. Not bad. How would you have said it,
Jean Baptiste dwar Jello? Is that is it a skip
to put that little uptick on the end? I think
that's called an exit agu right right, So yeah, that's
how I would have said it. But either way, I
(07:20):
think we we basically got it across. He was a
French physician from eighteen eighty that's the part. Yeah. And
the origin of the actual term is from Greek narca,
which is numbness or stupor. Stupor is one of my
favorite words, and leipsis to attack or two seize, right,
So it's an attack of stupor basically is what they
(07:42):
what he meant when he coined that term. And um,
the reason Jean Baptiste dead Ward Jello came up with
this is because the thirty six year old wine castmaker
came to him and said, Hey, I think there might
be something wrong with me. I follow as suddenly out
of nowhere for one to five minutes, two hundred times
(08:04):
a day every day. What do you think, Jelano said,
I think I'm gonna make my career on you. Buddy,
I did the math there. If you average about two
and a half minutes between the one to five, that's
about eight hours of dozing. Okay. I'm really glad you
said that, Chuck, because this was something that I had
no idea about. But if you take over a twenty
(08:28):
four hour period somebody with narcolepsy and put their amount
of sleep next to somebody without an ourcalepsy over twenty
four hours, it's gonna wash out roughly the same. Did
you know that. I didn't know that. But does that
mean that this guy dozed eight hours a day and
then stayed up all night or did he sleep another
(08:49):
five hours at night and just slept a lot. No.
So that's one of the one of the key reasons
that there is such thing as excessive daytime sleepiness as
part of narcolepsy. It's that your sleep is so disrupted
that it's basically spread out over twenty four hours rather
than concentrated over you know, eight hours at night. So
they're up and awake in the middle of the night
(09:11):
for very long periods, just like they fall asleep suddenly
during the day. But if you put all those bouts
of sleep together, even when they're trying at night, and
then when they can't help it during the day, it
adds up to about the same that a person without
narcolepsy will sleep. That's my understanding. Now, that's pretty remarkable.
(09:31):
Like the brains like, I'm getting sleep, whether whether you
like it or not, we're making this happen. At least
by twenty four hours, we're gonna have had enough. Uh.
And of course, you know, since this has been you know,
we're talking about the eighties, there's been a lot of
explanations over the years, everyone from Freud to you know,
it's about say, legitimate doctors that probably would have been
(09:53):
certain people like Freud. I like Freud too, but I
meant like, you know, um, never mind. Sure. But Freud
of course said that sleep is an escape, and he said,
you know, narcolepsy is a lot of times triggered by
really intense emotions. So here's what I think. It's just
an extreme defense mechanism that lets you escape from those emotions.
(10:17):
I love it. It's pretty Freudian. It's about as Freudian
an explanation for anything as I've heard. It's just classic right,
of course, it's just utterly wrong. But I love. I
just think Freud's attempts at explaining the world were great,
invaluable in the way that like preserving classic art is. Yeah,
(10:38):
I've been to his house. What where in Texas now? Yeah,
the Sigmund Freud house and in uh Tyler, Texas. There
are a lot of Germans in Texas. Although I know
he was Austrian. Yeah, I mean I believe I saw
it in Vienna if I'm not mistaken. That's neat, that
is very neat. Was this when you're backpacking? Yeah, of
course you need to do him. M are of that
(11:01):
time in your life and call it backpacking to Freud's house. Okay, okay,
so in the book could just be shaped like a penis.
Sometimes a book is just a book, that's right. So
Freud missed the mark a little bit, but still again
it's worth mentioning, just like appreciating art. It wasn't until
(11:22):
the sixties where they're like, okay, I think we're starting
to get some real clues here. And that was when
they first established that people with narcilepsy enter r e
M sleep during these bouts of narcalepsy, which you are
not supposed to do under normal sleep. Patterns which we
talked about many many times before. Like you said, when
(11:43):
you fall asleep, it should take you a little while
to enter R E M sleep. That's a deeper phase
of your sleep pattern. Right with with um narcilepsy, they're
out and into R E M sleep so quickly. That
A different way to characterize it that that ECLEPSI researchers
put it is that R E M activity it intrudes
(12:05):
into wakefulness. The line between being awake and being in
deep R E M sleep is that blurred for people
with narcolepsy. Yeah, And I feel like I've occasionally, in
a really intense power nap had a dream, but that's
only when it's and I don't get to nap anymore.
But that's when I've just been so tired that I
(12:28):
just napped and fall asleep like immediately. That's neat. I
bet you do you feel refreshed when you wake up?
M hmm. I tend to nap longer when I would nap,
so I wouldn't do the When I say power nap,
I don't mean the twenty minute disco nap. I mean
you really power power through for a couple of hours, right,
I thought you were recounting some of your cocaine using
(12:48):
days no, no, no, I got you. So that was
in the sixties. So they say, okay, R E M
and and uh narc eilepsy they go together like chocolate
and peanut butter. Right, we're onto something here. But finally
in the nineties they're like really have started to figure
it out, and they've zeroed in on the hypothalamus and
specifically a small cluster of cells in the rear of
(13:11):
the hypothalamus that we'll talk about later. And if you
learn about that and as far as narcolepsy goes, you
can find it pretty convincing that we have begun at
least to finally truly understand the cause of narcolepsy. Yeah,
I totally agree. It's they make a great case. So
if you want to talk to some initial stats. It
(13:32):
occurs in all ethnic groups. Uh, it has equal incidence
uh on the gender spectrum. Evidently. Yeah, that's interesting. And yeah,
because usually you would see it tilted one way or
the other. Yeah, for sure. Um. And then as far
as how often you're going to see this, it's in
about point oh three to point one six percent of
(13:55):
gin pop or about one and two thousand people. Yeah,
which makes it which classifies it as a rare disease, which,
by the way, shout out to, among several others, Rare
Diseases dot Org for their take on narcalypsy. It was
very instructive. Is it a disease or a disorder? Geez?
(14:16):
I think because there's a um a brain dysfunction, that
it would be characterized as a disease, wouldn't you. I
don't know. I still don't know the difference after all
these years. So it was I mean, when it was
considered an R. E. M. Sleep disorder and maybe it's
still is. It was considered a paras omnia like sleep
walking or whatever, So that would have been considered a
(14:37):
disorder them. But I think it's a disease. Now, Okay, Okay,
you want to take a break and come back and
talk about what anarcalypsy is. Okay, we'll be right back. Everybody. Okay,
(15:18):
we're back. And it turns out, Chuck, that there are
two types of narcilepsy, And just from all of the
research that we've done over the years on interesting health stuff,
this smells a lot to me like something that's going
to be broken out into its own thing over time. Yeah,
I agree, because we've seen that happen time and time again. Um.
(15:39):
We have narcilepsy type two, which is what we were
talking about, the sort of the more like when you
think of n earcilepsy, this is probably what you're thinking
of Aunt Laura falling asleep during the middle of a sentence, right.
And it's type two because it's um by far less
prevalent than type one. And type one is narcolepsy like
(16:01):
you'd think of with the daytime excessive daytime sleepiness. But
on top of that, there's something called cataplexy too. And
cataplexy can exist on its own. It's the just sudden
loss of voluntary muscle function, like you can't keep your
head up because your neck muscles just went limp, or
your arms go limp or something like that. And cataplexy
(16:24):
can exist on its own. It can exist in conjunction
with other diseases to or disorders. Um, but it very
frequently coexists with narcolepsy. And one of the hallmarks of
it from what I understand, because it gets it gets
kind of confusing and I couldn't fully find this out, Chuck,
but I I think that it can exist in a
(16:47):
person with narcolepsy in conjunction with a sleep attack or
separately to where you just suddenly like can't hold your
head up anymore. The key is you're still conscious. Just
oh my god, I just turned into an illiterate seventh grader.
You're still conscious. You just you might look like you
(17:08):
have just fainted or something like that, depending on the
severity of the cataplexic attack. Yeah, it's almost like a
fainting goat, right, Yes, very much like that, Almost exactly
like that, because remember with the feinting goats, they would
basically just fall over because they were startled. I think
pretty much the same thing with catoplexy and humans, although
(17:28):
it seems to be more associated with positive emotions. Yeah,
it's so interesting. Um yeah, we're gonna get into that.
There are four symptoms of narcolepsy, which we're going to
break down in a second. But they are excessive daytime
sleepiness like we've talked about. There is the cataplexy, their
sleep sleep paralysis, and then hipnagogic hallucinations and um, if
(17:54):
you have narcolepsy, you well there's about ants that you
have all four and I don't think there's any rhyme
or reason which ones you do have. But like we said,
everybody has the excessive daytime sleepiness. And they're also talking
about a fifth beatle. I was gonna say that Clarence
(18:17):
was that his name? Yeah? Or a Pooh said he
was too. The fifth symptom, which is disturbed nocturnal sleep,
which about of the patients have, but they haven't. I
think that'll end up in there at some point. And
technically there may be a sixth one to um, which
is called automatic behavior. Where have you ever been like
(18:37):
driving and you're suddenly like five exits further than you
thought you were, and you realize you just zoned out
and we're just driving just fine, but you were, You're
you're basically on autopilot. I don't know. I mean, is
that like the same as just daydreaming or maybe I
think so. But there's like no recollection of anything. You
(18:57):
didn't note any landmarks that you just pa uster. Let's
say you're gardening or something like that, you don't you
don't remember finishing digging the hole with a trowel. It's
it's you've just completed a task that you have no
memory of. Of undertaking. I don't think that happens. Okay,
so that's what's happened to me before. But that's a
symptom of of UM. It's an additional symptom. It's not
(19:21):
a classic symptom, but they're starting to figure out that
it does. It is a symptom of narcolepsy. Yes, so
you're like, I just I went in my garage one
day and I had built a penny farthing. No memory
of that how it got there. So it usually starts
out in adolescence, which surprised me. I did not know that,
just maybe because my Laura characterized it as something you
(19:43):
got later in life. But they do worsen with age,
so maybe that does make sense after all. And sometimes
your symptoms can be very steady. Sometimes it can be
months or years in between changes, and sometimes the symptoms
change a lot too very quickly. Right, um. But the
symptom that, again a hundred percent of UM people with
(20:04):
narcilepsy have is excessive daytime sleepiness. And in almost every
case of narcolepsy, that is the first symptom that starts.
You almost never start with the other ones. It's that
one first, And that's exactly what you think of where
somebody just falls asleep and they're out for a few
seconds to a few minutes, depending And it's not going
(20:26):
to be the same amount of time every time. They're
not going to have the same number of sleep attacks
every time. A lot of it has to do with
just how tired they are, like how poorly they slept
the night before. That's going to make them more susceptible
to sleep attacks during the day. And this is not
the same as hitting the wall at three o'clock because
you ate lunch and all of your coffee from the
(20:47):
morning war off. I mean, it bears some resemblance to it,
but this is it is irresistible. Um, this urge to
sleep or just sleep, it just comes on. So that's
that's a that's the main characteristic of an ecalepsy. But
anybody who's kind of dozed off, like sitting in a
comfortable chair when it was you know, a little warmer
(21:09):
than normal at work or something like that, right like
that is a it's it bears a resemblance to that
specific symptom of narcolepsy. It's the other ones that you
have in conjunction with that that really make an ecolepsy
like its own disorder. Have you ever slept at any
job you've ever had? It doesn't sound like me, but
(21:34):
probably I'm sure. I'm sure I have you know here there?
Why you well? I mean when I worked the midnight
to seven am shift at the Golden Pantry and Athens,
I had a regular routine of sleeping. Yeah, because you're
allowed to close up the store and mop and do
things for like an hour. So I would close up
the store, go back in the back, and uh, lay
(21:56):
down on a a little palette I made on top
of a free r n. Did you get some good sleep?
I would? It was pretty hard sleep, and I will
admit that. Uh. When I had a baby, I took
a nap or two right here in our own office.
Oh nice, what can you tell me? Where is it
(22:17):
still a secret? In one of the private telephone rooms. Oh,
that would be a good place to take a nap,
if you've ever gone in there and seen a pillow.
Then in the camp stove, sleep machine, open bag of marshmell.
Isn't a stick now? I took a couple of cat
(22:37):
naps here at work, and uh, such that I was like,
you know what, some countries and companies embrace this and
there's a lot of value to to knocking out for
twenty or thirty minutes during the work day. Is that
what that one hr email they sent out was all about? Maybe?
Did you try to convince them of that? Did you
go to them and say, you know, some countries really
(23:00):
race this. Why don't you guys be more more continental?
At least don't fire me? Right? Yeah? So yeah, so
this is this is akin to that, you know, falling asleep.
But the key here is that it's unplanned, and with
narcilepsy it is straight up irresistible, you know, like when
you sit up and you like open your eyes a
(23:21):
little bit, You're like, well, I can't fall asleep. I
gotta I gotta stay a week because I'm being paid
right now. Like if you have narcalypsy, you can't do that.
You just fall asleep and you're out. And the other
key is you feel really good and freshed right after
one of those sleep attacks, yeah, which is uh, it's
it's weird to think that ten seconds of that can
(23:41):
refresh you. I know, it is very weird, but that's
part of it for sure. So cataplexy, which we've talked
about the fainting goat like thing. Um you mentioned positive
emotions can trigger it, um, being surprised, laughter, elation, sometimes
anger which is not pause sative, but intense emotions like
(24:02):
that can triggered this. And it can be everything from
like you said, your head just sort of nodding down
to full on just collapsing, yeah, which is called a
drop attack, which are kind of dangerous. You can get
banged up pretty bad because this is not necessarily you
falling asleep or fainting or as a matter of fact,
it's not that. Yeah, you're up, your totally conscious, you are, Um,
(24:27):
you just can't control your muscles all of a sudden
for a very short period of time. Yeah. And interestingly,
and which is a good news, which is good news
is that as you get older, um, cataplexy amount actually improve. Yeah,
that is good news because taking a fall in the
hallway at you know, eighty years old is much different
than an eighteen for sure. Um, let's see. Oh, there's
(24:51):
also sleep paralysis, which we did an entire episode one. Um,
it's not fun. It frequently is accompanied by hallucinations, with
which is another symptom we'll talk about next. But sleep
paralysis was first described by a physician who had a
patient that presented with narcolepsy, and this guy figured out
there was such a thing as sleep paralysis. But it's basically,
(25:13):
when you're falling asleep or waking up, there's a there's
a like a few fleeting moments where you can't move
at all. You're paralyzed, and it's not pleasant one bit.
So if you are having a sleep attack and you're
coming in and out of sleep, you know, a bunch
of times a day, and you feel paralyzed as you're
coming in and out of sleep, um, and you don't
(25:35):
know what's going on, it can make the whole narcoleptic
norcalyptic experience a lot more terrifying. Yeah, as well. Hallucinations, Um,
these can come at the onset of sleep or at
the end of sleep. Um. They can be really scary.
Sometimes it could just be hearing a noise. What was
the one thing we talked about the time where we
(25:56):
you hear a loud noise, explode head that's exploding head. Somehow,
all this seems to be related somehow, right, Yeah, I
think so. Yeah, I think a lot of it has
to do with the neurons that we'll talk about in
a little bit. So, Um, the hallucinations, when they happen
when you're waking up, they're called hypno pompic, and when
(26:21):
you're falling asleep, those are the hypnagogic that we mentioned earlier. Yeah,
and again they very frequently accompany sleep paralysis, and that
like you can't move and you're hallucinating a demon standing
on your chest, right, that's why you can't move. And
again this is happening to you many many times a
day against your will, and it's it makes it unpleasant.
(26:43):
And then there's also something called disrupted nighttime sleep, which
is basically the exact polar opposite of excessive daytime sleepiness,
where during the night, when everybody else is asleep and
when you wish you were sleeping, you might be wide awake.
So that again your sleep pattern is not concentrated into
eight hours at night, it's spread out in about eight
(27:04):
hours throughout a twenty four hour period. That's right. So
we talked a lot about, um, the various sort of
explanations for this over the years, UM, what they thought
was going on, and that it wasn't until the nineteen
nineties that they kind of zeroed in on what they
think is going on now, which to me and you
holds a lot of promise. Um. But was the year
(27:28):
that they finally discovered and isolated the chemical in the
brain that seems to be the cause of all this,
and it's called hypocretan. Hippocretan. I want to say, hypocretan,
How do too? So let's do, okay, hypocretan. Yeah, So
they isolated that and there we have our um cousins,
(27:50):
the rats to thank for this, because they did a
lot of rats tests and figured out from those tests
just how um how this whole thing works. But what
they figured out out is that hypocretan has some has
a few different functions, but its main function is maintaining
wakefulness in US humans. And it is a it's a peptide.
(28:13):
It also has another name, Chuck called orexin, and it's
the exact same neurochemical. But it would just happen to
be discovered independently by two different groups at about the
same time, so it has two names. Still they haven't
settled on one. But it basically goes around and says, hey, saratonin,
you're looking good. Here's a little boost. Hey, Nora epinephrin,
(28:34):
you're looking great yourself. Here's another little boost. And so
all of these neurochemicals that keep us awake and alert
get a boost from hypocretan so that they can do
their job better. And what they found is that people
with type one narcolepsy UM have about nine fewer of
(28:56):
this very specialized cluster of neurons in the brain that
are responsible for producing all of the hypocretan in our bodies. Yeah,
that's case closed, right basically. Yeah, I think the only
thing left to explain is two fold. One, exactly why
the hypocretan is is um the hype the neurons that
(29:17):
produce hypocreting are so diminished. And it seems like they've
basically explained that one and then to what to do
about it. That's the big one. Yeah, and we should
mention too that UM, there are about eighty six million,
I'm sorry billion neurons in the brain and only about
between a hundred and two hundred thousand neurons produce hypocretan.
So it is a very specialized cluster of neural cells. Yeah,
(29:41):
but it also makes it really vulnerable too, and they're
all in one space in the rear of the hypothalamus.
So it's really weird that evolution was like, that's fine,
this is a really really really important chemical, um, but
we're just gonna localize it right here in this one
spot to just a hundred thousand neurons. Yeah. And it's
also really weird that if you only have type two narcolepsy,
(30:05):
you don't show any decrease in hypocretan right right when
that's just the one where you have sleep attacks and
not cataplexy. And it is really weird. And that's why
I was saying, like, I wonder if that's going to
be broken out eventually in the future into its own
disorder or disease. But the current thinking for that is
is that that is a less pronounced or less advanced
(30:30):
case of type one narcolepsy to where you're probably going
to eventually get cataplexy, or you may never get cataplexy,
but your your case of narcolepsy just stopped progressing at
something point. That's what they think currently. UM. A lot
of the sleepiness of narcolepsy. This, you know, it's a
(30:52):
theory at least from researchers, is that it's a consequence
of sleep state instability. Uh. And that's something I know
we talked about before, that that threshold between being awake
and being asleep and those lines getting blurred and crossing over.
And I guess that must have been sleep paralysis that
we talked about that. I think so because that's, um,
(31:13):
that is like an example of like wait, that is
like wakefulness intruding on R E M sleep. It's almost
like the opposite of narcolepsy, people experiencing sleep paralysis without narcolepsy.
It's kind of like that, but it it's it's ultimately
that it's a consequence of your brain no longer able
(31:34):
to being able to hold the switch down between the
on off switch between sleep and wakefulness. Right. So it's
like hypocritin is the thumb that holds the on off
switch in place. Without it, that switches kind of hair trigger,
so that um, it's just kind of can shift back
(31:56):
and forth between on and off really easily and really quickly. Um.
And so without that hypocrite and that's that you can
just kind of go in between wakefulness and R E
M sleep with no transition and just at the drop
of a hat basically, so they think that that's it,
that it is a a lack of hypocriting that is
(32:17):
responsible at least for type one narcilepsy, which is narcilepsy
with cataplexy. Should we take the break now? Sure? All right,
let's take a break because we're going to get into
our third act here with a very what I think
is the most interesting part of all this, which is
what it has to do with your genes and your
(32:38):
immune system right after this. All right, so I promised
(33:12):
talk of genes in your immune system. This is super
interesting to me because I feel like they're really zero
zeroing in on what's going on here with this research. Dude,
how many episodes have we done on stuff like this
where we're like, they think maybe this or studies are
started coming. We have caught this at like peak ripeness
(33:36):
right before everybody knows that it's just so plain and
obvious and it's been talked about so much, but right
after all of these important advanced advancements in the study
of it have really kind of come together and gelled.
I mean, it is perfectly fresh. Yeah, it is uh
a very rare satisfying feeling. I feel satisfied myself, so there.
(33:59):
They think there's a genetic basis for narcilepsy, but the
genes that are involved in our ecclepsy really aren't involved
with sleep. It's about your immune system. Um, so how
it goes is a little something like this there, alright, man,
there are genes that code for these T cell receptors
(34:20):
and the h l A gen human lucacite antigen, and
not everyone has this variant, but if you do, you're
gonna have about a greater chance of having anarcilepsy. Yeah,
that variant of the h l A gene very important.
That's a big increase, Yeah, is for real because a
(34:40):
lot of those will show like the relative increase, it
increases your risk, you know, but if you look at
the absolute increase, it's like well that you know, you
have you know, one point five times the chance or
something like that times likely or is definitely a huge increase.
For sure. My hat is all to that one. Yeah.
(35:01):
But so what they're thinking is that it's actually the
basis of narcolepsy is an autoimmune disease, and that is
what's killing off your immune system, is killing off those
hypocreting producing neurons. Yes, yes, just like crones irritable bowel
syndrome or rheumatoid arthritis. It's your body turning on itself.
(35:23):
It's mistaken, so it attacks itself. Your immune system attacks
your own body. And in this case, in the case
of an ecalepsy, they think that something about those hypocriting
um hypocreting producing neurons I guess are producing something that
seems like an antigen to your body. If you have
(35:43):
that specific variant of that hl A Jean and attacks them,
kills off those neurons. You don't have any hypocreting any longer,
and so you can't maintain wakefulness, and so sleep and
wakefulness just toggle back and forth throughout your day. Are
you gonna drop this stropped a caucus bomb? I think
you should. I think I understand it. But just after
(36:07):
the onset of narcolepsy, it looks like you have an
increased level of antibodies against streptocaucus and that's like strep throat,
and there are other infections involved, and so they've also
tied that to the time of year. Uh A. Narcolepsy
usually begins in late spring and early summer, which would
kind of make sense that there's an autoimmunitat going on
(36:27):
against those neurons triggered by strep throat or some other
kind of infection you get during the winter. Yeah, like
your immune system just goes bonkers because it's strap and
it's like what else, what else can I go after?
I'm really primed and pumped, And for some reason it
goes after your hypocretan producing neurons in your hypothalamus. That's nuts.
So your immune response is triggered by an actual infection,
(36:49):
they think, and the reason why they think this, and
it greatly pains me to to to reveal this, I know.
But there is a vaccine called endem Ricks that is
no longer available anywhere in the world. But it was
hot and heavy as a vaccine against H one N
one swine flu, and it was a really potent vaccine
(37:11):
against H one N one swine flu, and some European
Northern European countries during the two thousand nine to two
thousand eleven swine flu pandemic chose to use this to
inoculate their population with right. Well, there were reports that
have been backed up by studies, not just in um Finland,
(37:32):
which was a big place where this happened. But in
other places like the UK did studies to that found
the same results that there was a link between pandemics
and narcolepsy, that the pandemics triggered that immune response that
ultimately led to the immune system attacking the hypo cretan
(37:53):
producing neurons, so that H one N one vaccine brought
on a life long chronic case of narcolepsy. Yeah, I
thought that was hard to say, what not? Yeah, it
really was. I really really hate saying stuff like that,
I know, but you know what, you gotta we gotta
preach the science, and the science appears valid. Here dozens
(38:16):
of kids and um Finland developed narcolepsy, and I think
the new rate of cases of narcilepsy and kids increased
eight to twelvefold. And you know, I think out of
the fifty four kids who are diagnosed with narcolepsy, fifty
of them had had the vaccine. So yeah, and I mean,
(38:36):
these like these numbers are really really small, but if
you think about it, so four kids apparently in two
thousand and ten would have been diagnosed with narcolepsy had
that pandemic not happened in that or that particular vaccine
not been administered, but because it was, the number was
fifty four, not four. So even though the numbers again
(38:59):
absolutely are rather small percentage wise, there, that's an enormous,
a mind boggling increase in the number of NARCOLEPSI diagnoses. Yeah,
and it was linked directly to that vaccine and they
I keep saying that, and they caught it and it
is no longer being given anywhere. It was never available
(39:21):
in the United States. So, uh, Finland just sort of
got the brunt of it. It seems like, yeah, Finland,
the UK had a bunch um. Their rate was one
case of diagnosed and narcolepsy for every fifty five thousand
UM inoculations and children I think six months to eighteen UM,
(39:41):
but that washed out to like sixteen sixteen people UM,
which still I mean, if you're one of those people,
you're like, well, son of a gun, that really sucks.
But here's the key, and this is really really important,
and this is how we will be able to still
use a vaccine that is viable and po and works
against swine flu without giving somebody anarcilepsy. And that is
(40:05):
personalized UM drugs based on gene tests UM DNA tests,
Because of those fifty kids in Finland that received the
vaccine in two thousand ten that developed narcolepsy, every single
one of them carried that specific variant of the h
l a gene that is tied to narcolepsy. So if
(40:27):
you just did a simple DNA test, which hopefully will
be widespread in just a few years, you'd say, oh, no,
I'm glad we did this. You can't have pandemics, you
might get an arcilepsy, or basically there's a percent chance
you're gonna get an ecolepsy. Um, we'll give you this
other vaccine instead that that has been shown not to
produce narcilepsy and people like you. That's right, and you
can refer to our episode on personalized medicine. Yes, right,
(40:51):
we should do a follow up on that one. Yeah,
I agree, So that on the list for six years
from now. So basically, you've got these gene that pre
predispose you to um your immune system mistakenly attacking that
part of your hypothalamus. There has to be some sort
of trigger, either an infection or pandemics, um something like that. Typically,
(41:14):
an infection was stripped and then there seemed to be
two age windows where you're particularly vulnerable around fifteen and
around thirty six. They have no idea about any of that.
They just have they're starting to put this data together. Yeah,
I bet you they'll figure that out too, agreed. I
really feel like narcolepsy is going to be like totally
(41:34):
incompletely figured out in the next decade. I couldnot be
more jazzed about it, really. Yeah. Love science just figuring
things out, you know, just just doggedly, you know, working
in building on you know, somebody else's work. It's just
it's a beautiful thing when it's done right. Agreed. So,
if you are going to be diagnosed with narcolepsi, there
(41:57):
are a couple of tests that they're going to give you.
What is called an overnight uh Polly som no Graham,
that's right, a p s g uh. And that is
a test when you uh, it's one of those tests.
It's like a sleep studies when you go in and
sleep for them basically, and yeah, and they measure a
(42:17):
lot of things. They measure your brain waves, uh, they
measure your heart rate, eye movements, limb movements, muscle tone, respiration.
Get a lot of info there and then they'll say,
now you're gonna this is gonna be followed by the
multiple sleep latency test, which also sounds kind of fun
because that measures how quickly you fall asleep for a
nap every couple of hours during the day. I know,
(42:39):
when you have to go in for when you're like,
I gotta go to a doctor's appointment. Somebody goes, oh, sorry,
you go no, No, it's great, It's gonna be the
greatest day of my life. Yeah, those rooms make me sleepy. Um.
I could see some people being like, I can't go
sleep in a room, but I was well known as
a child for falling asleep in like a dentist chair
waiting for waiting for the dentist to come in. Um
(43:00):
or in a in a waiting room for are not
a waiting room, but in the exam room for a doctor.
I still get sleepy. And those just super clean, super cool,
quiet rooms with fluorescent lighting. It just zaps me. Yeah,
that's very odd, very odd. So, uh, four or five
knap opportunities during the day, they're gonna see how fast
(43:23):
you fall asleep, and if you followup, if you have narcalepsy,
you're gonna fall asleep super easy UM compared to someone
without an earcalepsy. Right, so that's that's a pretty big giveaway. UM.
If they're still like, I don't know, this is all this,
You know, this person patient history that we've taken in
these tests are inconclusive, they might test your cerebro spinal
fluid because UM hypocretan levels are very easily tested through that. No,
(43:49):
not nearly as fun, because they're gonna go through the
base of your skull, that hole in your skull where
your spinal cord. Yeah, I know. I hope that that
never befalls either one of us into anyone who's ever
had to go through that. We are very very sorry. UM.
But that also is looking like a place where they're
trying to figure out how to cure UH an ecolepsy,
(44:10):
because as it stands right now, if you're diagnosed with narcilepsy,
you've just been given a lifelong chronic diagnosis. You know,
there there's no cure for an eclepsy as it stands
right now, but there are treatments and from everything I read,
if you are actively treating your narcolepsy UM through a
(44:30):
doctor usually with prescriptions and also like behavioral modification, not
like you know, hooking you up to a car battery
and changing your behavior like that, more like making sure
you stick to like a good sleep pattern. Um, you
can very much keep your symptoms in check for sure.
It doesn't have to ruin your life. The trouble is
is that it's very frequently misdiagnosed and it's underdiagnosed, and
(44:55):
they think it's because it's occurs UM with so many
co morbidities like depression, where the doctors like, well, sure
you're falling asleep all day because you're just sitting around
on the couch, because you don't have any low energy
because you're depressed. Really, it's possible that you you have
developed depression because of the narcilepsy. UM. They haven't figured
(45:17):
out if they're co morbid or if the if one
causes the other, but they're pretty sure that an arc
eilepsy causes the depression. Yeah, you're probably going to get
a prescription for something um it maybe or it's probably
likely to be a daphanel these days. When we talked
about that in Our is Science Phasing out sleep episode, Yeah,
we've done a bunch of sleep once. I forgot about
(45:39):
that one riddling you might get uh, you know, it
says you know, in the old days meth amphetamins. But
they still prescribe a variation of speed for I'm not
sure if it's an ecailepsy, but I know an individual
that I was diagnosed with. I guess just it's dream
(46:00):
daytime sleepiness. Not they're in chores fast enough, No, no
for falling or get just feeling really really sleepy during
the day. And did the sleep study and all that,
and they were prescribed kind of whatever the version of
speed as these days was. When was that? When were
they prescribed? That was at nineties last year? Oh? Really,
I'm surprised because from what I saw, Madafanil is like, no,
(46:23):
don't need anything else, just take me daffanel. You don't
get addicted to it. There are very few side effects. Um,
it's supposed to just be like a wonder drug basically.
Mm hmmm. I don't. Anytime I hear that, I get dubious, right,
I think that's pretty pretty smart. Actually, Um, they might
also prescribe you anidepressant like an ss r i um,
(46:47):
which inhibits reuptake a serotonin, which means you have more
serotonin in your brain, which would make sense because what
hypocretan does is boost your levels of serotonin and other neurochemicals.
So this is kind of going around down that problem
and just making you have more serotonin than before, which
apparently helps maintain r E M sleep the barrier between
(47:11):
that and wakefulness a lot better. Yeah. And then the
final thing, which is really interesting and promising, is they
did the sort of logical thing, which is, hey, maybe
we can just get some more hypocreting in your body,
because if that's the problem, why don't we just do that?
So they cut out fat hauled legs of it for
you at the doctor's office. Uh. There are different methods.
(47:32):
Cell transplantation, which is just implanting cells. Uh, maybe implantation
of the gene like gene therapy. Maybe just giving it
through your nose or injecting it into your body, That's
what I'm saying, or interest sisternally chuck, which is again
through the base of the skull in the back of
(47:54):
your head where your spinal cord goes into your up
to your brain. They and inject into your cerebro spinal
fluid like that too. It's probably the least fun of
all of them, but they are they're on the case
basically is what that means. Yeah, and you know we've
talked sort of off and on throughout this thing about
your quality of life with narcolepsy. Um, it's obviously a
(48:18):
serious thing. There can besides just like holding a job
and um, socially and not being depressed because you don't
want to hang out with people because you may be
embarrassed by it. Uh. There's also like the very real
chance of accidents. Um. Some people are not allowed to drive,
some people are allowed to drive. It kind of depends
(48:40):
on I guess your your diagnosis. Uh. School is tricky.
Work can be tricky. Although they do UM they do
with the Americans with Disabilities Act. They provide for letting
people take naps and stuff like that, which is kind
of cool. It is. Yeah, if you have narcolepsy and
um you're at work, you can say, hey, employer, I
need them, I need a place to take a nap,
(49:02):
and they'll say, okay, that's great, let's say right in here,
and they're like, oh my god, Chuck's in there, right, Chuck.
The there's I mean it gets even sadder though, like
there there are people who who um die by suicide
from uh narcolepsy. There was a girl named Katie Clack
who got pandem riics and developed narcolepsy as a result,
(49:25):
and she ended up taking her life, um because she
just it just completely derailed things for um. She was
in no way, shape or form prepared for it, although
I don't know that anybody's prepared for it. And then also,
like you were saying, an accident can happen, and from
what I read, um, the risk of death and injury
among people with narcolepsy is almost twice that of the
(49:48):
general population through things like car accidents or you know,
cooking or going up a ladder or something like that.
If you suddenly developed cataplexy or a sleep attack or
something that's that's a bad time to fall asleep or
lose control of your muscles. You know. Well, and at
the very least you're gonna have to really arrange your
life to accommodate for this stuff, right, you know. But again,
(50:11):
if you are managing your symptoms, you can you can
lead a pretty normal life. I think it's just a
question of like getting diagnosed correctly. Yeah, well that's it
for ourclepsy. Hopefully we'll have it all figured out, and
when we revisit it in five or ten years will
be like it was all right, Everything was correct, it
(50:33):
was all right. And since I said it was all right,
it's time for listener, mate, I'm gonna call this soul
Train feedback. That was a fun show, and this is
from Julia. Hello, guys, we really enjoyed your Soul Train episode.
You did a great job capturing the feeling and cultural
(50:54):
significance of the show. You depicted a brilliant, flawed Don
Cornelius without gating his profound contribution. There was a monthly
black teenage magazine named right on. This publication gave names
to the dances and dancers. We would read the ink
off of the pages. Being black in America then and
(51:14):
now we watch mainstream America love the culture while devaluing
the people and criminalizing the young. Thank you for this episode.
And that is from Julia Pierce, the president of the
Tybee MLK Human Rights Committee. Nice Tybee Island. I guess
down in Georgia. I don't know, I guess so I hope.
So that's great. Thanks a lot, Julia, I much appreciated. Agreed.
(51:39):
If you want to get in touch with this like
Julia did. Give us props, or just say hey, you
guys are doing this too much, or be quiet. Well,
we never will, but you can still say it. You
can send us an email to stuff podcast did i
heeart radio dot com. Stuff you Should Know is a
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(52:01):
podcasts for my heart Radio, visit the I Heart Radio app,
Apple Podcasts, or wherever you listen to your favorite shows.
H
Welcome to Stuff. You should know a production of My
Heart Radios How Stuff Works. Hey you, and welcome to
the podcast. I'm Josh Clark, and there's Charles W. Chuck
Bryan over there, and uh, I still know Jerry Chuck
wake up. Huh, We're gonna get some mail for that.
(00:25):
Right off of the bath, I feel quite refreshed. So, Chuck,
you might have an earcolepsy. Then if you just fell asleep,
were you able to resist that urge to sleep just now? No?
As soon as I heard, Hey, welcome to the podcast,
I went lights out. I think that happens to a
lot of people. Have you ever known anyone with narcolepsy?
(00:47):
I haven't. The closest I've I've come to that is
um watching my own private Idaho. What do you find that? Uh?
Sleep inducing? No? No, they is. I think it's remember
Phoenix or Keiana Reeves? Has I forgot about that? I
thought you were saying it so boring you can't stay awake? No? No, No,
(01:10):
that's Cats. Did you see that? No? Don't you remember that?
I tried to make myself go to sleep in Cats
in the Middle. Now I have not seen the movie. Now, yeah,
that's what I was wondering about. After having been on
movie crush, I'm now I can't tell what's what anymore.
What I said where? Uh So, my great aunt Laura
(01:32):
had narcolepsy, which is my paternal grandmother's sister, and uh
I only met her a few times. This is from
my my dad's side of the like the Mississippi clan.
So I think I only I only remember going to
Mississippi like once when I was a kid and visiting her,
and I just remember my brother and I. This is
my only memory of the visit is Scott and I
(01:53):
sitting in a room talking with her and her being
in the middle of a sentence and then her head
falling down and then ten seconds later she would pick
her head up and continue that sentence. Wow, like like
without missing a beat or was there like uh oh
you know that? Was she aware that she had just
fallen asleep and woken up. In my memory from being
(02:15):
like ten years old, she didn't miss a beat and
just finished her sentence like right in the middle of
a sentence and didn't mention it. And my brother and
I were just like, what is going on here? But
your dad didn't prepare you for it. I don't remember.
I blocked out, you know, purposely blocked out a lot
of my childhood right right, So I don't know, but
I hold it into the shuffle. That's the only thing
(02:39):
I remember it. It may be a child's memory that
is a little trumped up, but um, that's how I
remember it. Wow. Man, Well, yeah, I've never known anybody
with NARCILEPSI, and um, based on that going into this
whole episode, like I was just basically going in like
I'm sure most of our listeners are where it's just like, yeah,
(03:00):
somebody falls asleep in the middle of the day, they
can't help it, and then they wake back up, and
who cares basically, you know. But the more that I've
researched this some more, I'm like, you know, if it
even if it were just that alone, it would be
pretty disruptive to your normal life, depending on how often
it happened to you, you know, every day. But the
(03:22):
fact is it's not just that alone, and there's a
lot of extra symptoms to it that make it frightening
or terrifying or depressing or just completely disruptive or make
it so that you are, um, maybe unable to hold
down a job or go to school. There's a it's
actually a much um it's a much sadder condition than
I think most people think of because it seems innocuous.
(03:44):
It's just like, hey, you fall asleep here there, it's fine,
you know, and it's not. It's there's a lot more
to it than that. Yeah, for sure. UM. I should
also mention too that something that should not be confused
with narcolepsy is something that Emily's family has. Uh and
I saw this when we would go to visit when
they lived in Ohio, when he would stay at her
parents house. Well, you know, eating, drinking during the day,
(04:09):
such that by seven to eight o'clock at night every night,
I would Emily and I would look around, We're watching
TV and there are four usually three sleeping adults. And uh,
I dubbed it the gas leak, which everyone in their
family thought was hysterical. Right now, that's just play a
little funny. Yeah, that's that's not an earcalepsy at all.
(04:32):
That's just you know, at what age does that start happening?
Is what I want to know. Because I'm creeping up there,
because I can still jam late into the night. I'm
still you know, I might be sleepy the next day,
but that's my only time when I don't have a
five year old, so I used that time. I can
(04:53):
stay up still till midnight one in the morning. If
I am doing something that's really neat, you must have
a lot of testostero and left. I don't think so well.
I mean well, no, I mean, um like to have
energy after you know, a certain time of day is
I think I think you have a lot of test testerone, chuck,
(05:14):
I would bet we're going to take you in for
a test after this. Well, I feel like it. I
feel like it kicks back in. Like I'm sleepy sometimes
during the day, but then when the night comes and
my daughter's to sleep, I'm like, all right, this is
my this is my time to shine. No, that's very
fortunate man, that you're not just like this is my
time to netflix and chill like you're getting stuff done.
I'm envious of you for that because I get a
(05:34):
little tired. But I definitely don't have an ourcalepsy. I'm
just kind of like I'm somewhere between you and Emily's family.
They guess the correct yeah, so uh. An oarcilepsy is Uh,
it's a chronic disorder. It's a sleep disorder. And I
know we've talked a little bit about this in some
(05:55):
of our other sleep disorder episodes, UM, so much so
that I thought we might have actually covered this, but
a quadruple checked and we have not. But UM, it's
characterized by a few things. UM. One of the main
tenants that basically everybody that has an eclepsy has what's
called excessive daytime sleepiness. Right, that's what everybody thinks about
(06:15):
when you think of narclepsy. Somebody just falling asleep. They
can't help it, they're just suddenly out, that's right. Yeah.
They also call those, um sleep attacks. It's pretty cute. Um.
And no matter what variation of narcalepsy you have, you
have excessive daytime sleepiness E D yes, right, that's right.
And UM, this is not you know, this is nothing new.
(06:38):
We're just now sort of figuring it out a little
bit since the nineties, which we'll get to. But obviously
this has been happening since there have been people, uh
they they've probably been suffering from an eclepsy, you know,
a small percentage of people. But it was first described
in eight eight by a French physician named Jean Baptiste
(07:00):
Eduard Guilleneo. Not bad. How would you have said it,
Jean Baptiste dwar Jello? Is that is it a skip
to put that little uptick on the end? I think
that's called an exit agu right right, So yeah, that's
how I would have said it. But either way, I
(07:20):
think we we basically got it across. He was a
French physician from eighteen eighty that's the part. Yeah. And
the origin of the actual term is from Greek narca,
which is numbness or stupor. Stupor is one of my
favorite words, and leipsis to attack or two seize, right,
So it's an attack of stupor basically is what they
(07:42):
what he meant when he coined that term. And um,
the reason Jean Baptiste dead Ward Jello came up with
this is because the thirty six year old wine castmaker
came to him and said, Hey, I think there might
be something wrong with me. I follow as suddenly out
of nowhere for one to five minutes, two hundred times
(08:04):
a day every day. What do you think, Jelano said,
I think I'm gonna make my career on you. Buddy,
I did the math there. If you average about two
and a half minutes between the one to five, that's
about eight hours of dozing. Okay. I'm really glad you
said that, Chuck, because this was something that I had
no idea about. But if you take over a twenty
(08:28):
four hour period somebody with narcolepsy and put their amount
of sleep next to somebody without an ourcalepsy over twenty
four hours, it's gonna wash out roughly the same. Did
you know that. I didn't know that. But does that
mean that this guy dozed eight hours a day and
then stayed up all night or did he sleep another
(08:49):
five hours at night and just slept a lot. No.
So that's one of the one of the key reasons
that there is such thing as excessive daytime sleepiness as
part of narcolepsy. It's that your sleep is so disrupted
that it's basically spread out over twenty four hours rather
than concentrated over you know, eight hours at night. So
they're up and awake in the middle of the night
(09:11):
for very long periods, just like they fall asleep suddenly
during the day. But if you put all those bouts
of sleep together, even when they're trying at night, and
then when they can't help it during the day, it
adds up to about the same that a person without
narcolepsy will sleep. That's my understanding. Now, that's pretty remarkable.
(09:31):
Like the brains like, I'm getting sleep, whether whether you
like it or not, we're making this happen. At least
by twenty four hours, we're gonna have had enough. Uh.
And of course, you know, since this has been you know,
we're talking about the eighties, there's been a lot of
explanations over the years, everyone from Freud to you know,
it's about say, legitimate doctors that probably would have been
(09:53):
certain people like Freud. I like Freud too, but I
meant like, you know, um, never mind. Sure. But Freud
of course said that sleep is an escape, and he said,
you know, narcolepsy is a lot of times triggered by
really intense emotions. So here's what I think. It's just
an extreme defense mechanism that lets you escape from those emotions.
(10:17):
I love it. It's pretty Freudian. It's about as Freudian
an explanation for anything as I've heard. It's just classic right,
of course, it's just utterly wrong. But I love. I
just think Freud's attempts at explaining the world were great,
invaluable in the way that like preserving classic art is. Yeah,
(10:38):
I've been to his house. What where in Texas now? Yeah,
the Sigmund Freud house and in uh Tyler, Texas. There
are a lot of Germans in Texas. Although I know
he was Austrian. Yeah, I mean I believe I saw
it in Vienna if I'm not mistaken. That's neat, that
is very neat. Was this when you're backpacking? Yeah, of
course you need to do him. M are of that
(11:01):
time in your life and call it backpacking to Freud's house. Okay, okay,
so in the book could just be shaped like a penis.
Sometimes a book is just a book, that's right. So
Freud missed the mark a little bit, but still again
it's worth mentioning, just like appreciating art. It wasn't until
(11:22):
the sixties where they're like, okay, I think we're starting
to get some real clues here. And that was when
they first established that people with narcilepsy enter r e
M sleep during these bouts of narcalepsy, which you are
not supposed to do under normal sleep. Patterns which we
talked about many many times before. Like you said, when
(11:43):
you fall asleep, it should take you a little while
to enter R E M sleep. That's a deeper phase
of your sleep pattern. Right with with um narcilepsy, they're
out and into R E M sleep so quickly. That
A different way to characterize it that that ECLEPSI researchers
put it is that R E M activity it intrudes
(12:05):
into wakefulness. The line between being awake and being in
deep R E M sleep is that blurred for people
with narcolepsy. Yeah, And I feel like I've occasionally, in
a really intense power nap had a dream, but that's
only when it's and I don't get to nap anymore.
But that's when I've just been so tired that I
(12:28):
just napped and fall asleep like immediately. That's neat. I
bet you do you feel refreshed when you wake up?
M hmm. I tend to nap longer when I would nap,
so I wouldn't do the When I say power nap,
I don't mean the twenty minute disco nap. I mean
you really power power through for a couple of hours, right,
I thought you were recounting some of your cocaine using
(12:48):
days no, no, no, I got you. So that was
in the sixties. So they say, okay, R E M
and and uh narc eilepsy they go together like chocolate
and peanut butter. Right, we're onto something here. But finally
in the nineties they're like really have started to figure
it out, and they've zeroed in on the hypothalamus and
specifically a small cluster of cells in the rear of
(13:11):
the hypothalamus that we'll talk about later. And if you
learn about that and as far as narcolepsy goes, you
can find it pretty convincing that we have begun at
least to finally truly understand the cause of narcolepsy. Yeah,
I totally agree. It's they make a great case. So
if you want to talk to some initial stats. It
(13:32):
occurs in all ethnic groups. Uh, it has equal incidence
uh on the gender spectrum. Evidently. Yeah, that's interesting. And yeah,
because usually you would see it tilted one way or
the other. Yeah, for sure. Um. And then as far
as how often you're going to see this, it's in
about point oh three to point one six percent of
(13:55):
gin pop or about one and two thousand people. Yeah,
which makes it which classifies it as a rare disease, which,
by the way, shout out to, among several others, Rare
Diseases dot Org for their take on narcalypsy. It was
very instructive. Is it a disease or a disorder? Geez?
(14:16):
I think because there's a um a brain dysfunction, that
it would be characterized as a disease, wouldn't you. I
don't know. I still don't know the difference after all
these years. So it was I mean, when it was
considered an R. E. M. Sleep disorder and maybe it's
still is. It was considered a paras omnia like sleep
walking or whatever, So that would have been considered a
(14:37):
disorder them. But I think it's a disease. Now, Okay, Okay,
you want to take a break and come back and
talk about what anarcalypsy is. Okay, we'll be right back. Everybody. Okay,
(15:18):
we're back. And it turns out, Chuck, that there are
two types of narcilepsy, And just from all of the
research that we've done over the years on interesting health stuff,
this smells a lot to me like something that's going
to be broken out into its own thing over time. Yeah,
I agree, because we've seen that happen time and time again. Um.
(15:39):
We have narcilepsy type two, which is what we were
talking about, the sort of the more like when you
think of n earcilepsy, this is probably what you're thinking
of Aunt Laura falling asleep during the middle of a sentence, right.
And it's type two because it's um by far less
prevalent than type one. And type one is narcolepsy like
(16:01):
you'd think of with the daytime excessive daytime sleepiness. But
on top of that, there's something called cataplexy too. And
cataplexy can exist on its own. It's the just sudden
loss of voluntary muscle function, like you can't keep your
head up because your neck muscles just went limp, or
your arms go limp or something like that. And cataplexy
(16:24):
can exist on its own. It can exist in conjunction
with other diseases to or disorders. Um, but it very
frequently coexists with narcolepsy. And one of the hallmarks of
it from what I understand, because it gets it gets
kind of confusing and I couldn't fully find this out, Chuck,
but I I think that it can exist in a
(16:47):
person with narcolepsy in conjunction with a sleep attack or
separately to where you just suddenly like can't hold your
head up anymore. The key is you're still conscious. Just
oh my god, I just turned into an illiterate seventh grader.
You're still conscious. You just you might look like you
(17:08):
have just fainted or something like that, depending on the
severity of the cataplexic attack. Yeah, it's almost like a
fainting goat, right, Yes, very much like that, Almost exactly
like that, because remember with the feinting goats, they would
basically just fall over because they were startled. I think
pretty much the same thing with catoplexy and humans, although
(17:28):
it seems to be more associated with positive emotions. Yeah,
it's so interesting. Um yeah, we're gonna get into that.
There are four symptoms of narcolepsy, which we're going to
break down in a second. But they are excessive daytime
sleepiness like we've talked about. There is the cataplexy, their
sleep sleep paralysis, and then hipnagogic hallucinations and um, if
(17:54):
you have narcolepsy, you well there's about ants that you
have all four and I don't think there's any rhyme
or reason which ones you do have. But like we said,
everybody has the excessive daytime sleepiness. And they're also talking
about a fifth beatle. I was gonna say that Clarence
(18:17):
was that his name? Yeah? Or a Pooh said he
was too. The fifth symptom, which is disturbed nocturnal sleep,
which about of the patients have, but they haven't. I
think that'll end up in there at some point. And
technically there may be a sixth one to um, which
is called automatic behavior. Where have you ever been like
(18:37):
driving and you're suddenly like five exits further than you
thought you were, and you realize you just zoned out
and we're just driving just fine, but you were, You're
you're basically on autopilot. I don't know. I mean, is
that like the same as just daydreaming or maybe I
think so. But there's like no recollection of anything. You
(18:57):
didn't note any landmarks that you just pa uster. Let's
say you're gardening or something like that, you don't you
don't remember finishing digging the hole with a trowel. It's
it's you've just completed a task that you have no
memory of. Of undertaking. I don't think that happens. Okay,
so that's what's happened to me before. But that's a
symptom of of UM. It's an additional symptom. It's not
(19:21):
a classic symptom, but they're starting to figure out that
it does. It is a symptom of narcolepsy. Yes, so
you're like, I just I went in my garage one
day and I had built a penny farthing. No memory
of that how it got there. So it usually starts
out in adolescence, which surprised me. I did not know that,
just maybe because my Laura characterized it as something you
(19:43):
got later in life. But they do worsen with age,
so maybe that does make sense after all. And sometimes
your symptoms can be very steady. Sometimes it can be
months or years in between changes, and sometimes the symptoms
change a lot too very quickly. Right, um. But the
symptom that, again a hundred percent of UM people with
(20:04):
narcilepsy have is excessive daytime sleepiness. And in almost every
case of narcolepsy, that is the first symptom that starts.
You almost never start with the other ones. It's that
one first, And that's exactly what you think of where
somebody just falls asleep and they're out for a few
seconds to a few minutes, depending And it's not going
(20:26):
to be the same amount of time every time. They're
not going to have the same number of sleep attacks
every time. A lot of it has to do with
just how tired they are, like how poorly they slept
the night before. That's going to make them more susceptible
to sleep attacks during the day. And this is not
the same as hitting the wall at three o'clock because
you ate lunch and all of your coffee from the
(20:47):
morning war off. I mean, it bears some resemblance to it,
but this is it is irresistible. Um, this urge to
sleep or just sleep, it just comes on. So that's
that's a that's the main characteristic of an ecalepsy. But
anybody who's kind of dozed off, like sitting in a
comfortable chair when it was you know, a little warmer
(21:09):
than normal at work or something like that, right like
that is a it's it bears a resemblance to that
specific symptom of narcolepsy. It's the other ones that you
have in conjunction with that that really make an ecolepsy
like its own disorder. Have you ever slept at any
job you've ever had? It doesn't sound like me, but
(21:34):
probably I'm sure. I'm sure I have you know here there?
Why you well? I mean when I worked the midnight
to seven am shift at the Golden Pantry and Athens,
I had a regular routine of sleeping. Yeah, because you're
allowed to close up the store and mop and do
things for like an hour. So I would close up
the store, go back in the back, and uh, lay
(21:56):
down on a a little palette I made on top
of a free r n. Did you get some good sleep?
I would? It was pretty hard sleep, and I will
admit that. Uh. When I had a baby, I took
a nap or two right here in our own office.
Oh nice, what can you tell me? Where is it
(22:17):
still a secret? In one of the private telephone rooms. Oh,
that would be a good place to take a nap,
if you've ever gone in there and seen a pillow.
Then in the camp stove, sleep machine, open bag of marshmell.
Isn't a stick now? I took a couple of cat
(22:37):
naps here at work, and uh, such that I was like,
you know what, some countries and companies embrace this and
there's a lot of value to to knocking out for
twenty or thirty minutes during the work day. Is that
what that one hr email they sent out was all about? Maybe?
Did you try to convince them of that? Did you
go to them and say, you know, some countries really
(23:00):
race this. Why don't you guys be more more continental?
At least don't fire me? Right? Yeah? So yeah, so
this is this is akin to that, you know, falling asleep.
But the key here is that it's unplanned, and with
narcilepsy it is straight up irresistible, you know, like when
you sit up and you like open your eyes a
(23:21):
little bit, You're like, well, I can't fall asleep. I
gotta I gotta stay a week because I'm being paid
right now. Like if you have narcalypsy, you can't do that.
You just fall asleep and you're out. And the other
key is you feel really good and freshed right after
one of those sleep attacks, yeah, which is uh, it's
it's weird to think that ten seconds of that can
(23:41):
refresh you. I know, it is very weird, but that's
part of it for sure. So cataplexy, which we've talked
about the fainting goat like thing. Um you mentioned positive
emotions can trigger it, um, being surprised, laughter, elation, sometimes
anger which is not pause sative, but intense emotions like
(24:02):
that can triggered this. And it can be everything from
like you said, your head just sort of nodding down
to full on just collapsing, yeah, which is called a
drop attack, which are kind of dangerous. You can get
banged up pretty bad because this is not necessarily you
falling asleep or fainting or as a matter of fact,
it's not that. Yeah, you're up, your totally conscious, you are, Um,
(24:27):
you just can't control your muscles all of a sudden
for a very short period of time. Yeah. And interestingly,
and which is a good news, which is good news
is that as you get older, um, cataplexy amount actually improve. Yeah,
that is good news because taking a fall in the
hallway at you know, eighty years old is much different
than an eighteen for sure. Um, let's see. Oh, there's
(24:51):
also sleep paralysis, which we did an entire episode one. Um,
it's not fun. It frequently is accompanied by hallucinations, with
which is another symptom we'll talk about next. But sleep
paralysis was first described by a physician who had a
patient that presented with narcolepsy, and this guy figured out
there was such a thing as sleep paralysis. But it's basically,
(25:13):
when you're falling asleep or waking up, there's a there's
a like a few fleeting moments where you can't move
at all. You're paralyzed, and it's not pleasant one bit.
So if you are having a sleep attack and you're
coming in and out of sleep, you know, a bunch
of times a day, and you feel paralyzed as you're
coming in and out of sleep, um, and you don't
(25:35):
know what's going on, it can make the whole narcoleptic
norcalyptic experience a lot more terrifying. Yeah, as well. Hallucinations, Um,
these can come at the onset of sleep or at
the end of sleep. Um. They can be really scary.
Sometimes it could just be hearing a noise. What was
the one thing we talked about the time where we
(25:56):
you hear a loud noise, explode head that's exploding head. Somehow,
all this seems to be related somehow, right, Yeah, I
think so. Yeah, I think a lot of it has
to do with the neurons that we'll talk about in
a little bit. So, Um, the hallucinations, when they happen
when you're waking up, they're called hypno pompic, and when
(26:21):
you're falling asleep, those are the hypnagogic that we mentioned earlier. Yeah,
and again they very frequently accompany sleep paralysis, and that
like you can't move and you're hallucinating a demon standing
on your chest, right, that's why you can't move. And
again this is happening to you many many times a
day against your will, and it's it makes it unpleasant.
(26:43):
And then there's also something called disrupted nighttime sleep, which
is basically the exact polar opposite of excessive daytime sleepiness,
where during the night, when everybody else is asleep and
when you wish you were sleeping, you might be wide awake.
So that again your sleep pattern is not concentrated into
eight hours at night, it's spread out in about eight
(27:04):
hours throughout a twenty four hour period. That's right. So
we talked a lot about, um, the various sort of
explanations for this over the years, UM, what they thought
was going on, and that it wasn't until the nineteen
nineties that they kind of zeroed in on what they
think is going on now, which to me and you
holds a lot of promise. Um. But was the year
(27:28):
that they finally discovered and isolated the chemical in the
brain that seems to be the cause of all this,
and it's called hypocretan. Hippocretan. I want to say, hypocretan,
How do too? So let's do, okay, hypocretan. Yeah, So
they isolated that and there we have our um cousins,
(27:50):
the rats to thank for this, because they did a
lot of rats tests and figured out from those tests
just how um how this whole thing works. But what
they figured out out is that hypocretan has some has
a few different functions, but its main function is maintaining
wakefulness in US humans. And it is a it's a peptide.
(28:13):
It also has another name, Chuck called orexin, and it's
the exact same neurochemical. But it would just happen to
be discovered independently by two different groups at about the
same time, so it has two names. Still they haven't
settled on one. But it basically goes around and says, hey, saratonin,
you're looking good. Here's a little boost. Hey, Nora epinephrin,
(28:34):
you're looking great yourself. Here's another little boost. And so
all of these neurochemicals that keep us awake and alert
get a boost from hypocretan so that they can do
their job better. And what they found is that people
with type one narcolepsy UM have about nine fewer of
(28:56):
this very specialized cluster of neurons in the brain that
are responsible for producing all of the hypocretan in our bodies. Yeah,
that's case closed, right basically. Yeah, I think the only
thing left to explain is two fold. One, exactly why
the hypocretan is is um the hype the neurons that
(29:17):
produce hypocreting are so diminished. And it seems like they've
basically explained that one and then to what to do
about it. That's the big one. Yeah, and we should
mention too that UM, there are about eighty six million,
I'm sorry billion neurons in the brain and only about
between a hundred and two hundred thousand neurons produce hypocretan.
So it is a very specialized cluster of neural cells. Yeah,
(29:41):
but it also makes it really vulnerable too, and they're
all in one space in the rear of the hypothalamus.
So it's really weird that evolution was like, that's fine,
this is a really really really important chemical, um, but
we're just gonna localize it right here in this one
spot to just a hundred thousand neurons. Yeah. And it's
also really weird that if you only have type two narcolepsy,
(30:05):
you don't show any decrease in hypocretan right right when
that's just the one where you have sleep attacks and
not cataplexy. And it is really weird. And that's why
I was saying, like, I wonder if that's going to
be broken out eventually in the future into its own
disorder or disease. But the current thinking for that is
is that that is a less pronounced or less advanced
(30:30):
case of type one narcolepsy to where you're probably going
to eventually get cataplexy, or you may never get cataplexy,
but your your case of narcolepsy just stopped progressing at
something point. That's what they think currently. UM. A lot
of the sleepiness of narcolepsy. This, you know, it's a
(30:52):
theory at least from researchers, is that it's a consequence
of sleep state instability. Uh. And that's something I know
we talked about before, that that threshold between being awake
and being asleep and those lines getting blurred and crossing over.
And I guess that must have been sleep paralysis that
we talked about that. I think so because that's, um,
(31:13):
that is like an example of like wait, that is
like wakefulness intruding on R E M sleep. It's almost
like the opposite of narcolepsy, people experiencing sleep paralysis without narcolepsy.
It's kind of like that, but it it's it's ultimately
that it's a consequence of your brain no longer able
(31:34):
to being able to hold the switch down between the
on off switch between sleep and wakefulness. Right. So it's
like hypocritin is the thumb that holds the on off
switch in place. Without it, that switches kind of hair trigger,
so that um, it's just kind of can shift back
(31:56):
and forth between on and off really easily and really quickly. Um.
And so without that hypocrite and that's that you can
just kind of go in between wakefulness and R E
M sleep with no transition and just at the drop
of a hat basically, so they think that that's it,
that it is a a lack of hypocriting that is
(32:17):
responsible at least for type one narcilepsy, which is narcilepsy
with cataplexy. Should we take the break now? Sure? All right,
let's take a break because we're going to get into
our third act here with a very what I think
is the most interesting part of all this, which is
what it has to do with your genes and your
(32:38):
immune system right after this. All right, so I promised
(33:12):
talk of genes in your immune system. This is super
interesting to me because I feel like they're really zero
zeroing in on what's going on here with this research. Dude,
how many episodes have we done on stuff like this
where we're like, they think maybe this or studies are
started coming. We have caught this at like peak ripeness
(33:36):
right before everybody knows that it's just so plain and
obvious and it's been talked about so much, but right
after all of these important advanced advancements in the study
of it have really kind of come together and gelled.
I mean, it is perfectly fresh. Yeah, it is uh
a very rare satisfying feeling. I feel satisfied myself, so there.
(33:59):
They think there's a genetic basis for narcilepsy, but the
genes that are involved in our ecclepsy really aren't involved
with sleep. It's about your immune system. Um, so how
it goes is a little something like this there, alright, man,
there are genes that code for these T cell receptors
(34:20):
and the h l A gen human lucacite antigen, and
not everyone has this variant, but if you do, you're
gonna have about a greater chance of having anarcilepsy. Yeah,
that variant of the h l A gene very important.
That's a big increase, Yeah, is for real because a
(34:40):
lot of those will show like the relative increase, it
increases your risk, you know, but if you look at
the absolute increase, it's like well that you know, you
have you know, one point five times the chance or
something like that times likely or is definitely a huge increase.
For sure. My hat is all to that one. Yeah.
(35:01):
But so what they're thinking is that it's actually the
basis of narcolepsy is an autoimmune disease, and that is
what's killing off your immune system, is killing off those
hypocreting producing neurons. Yes, yes, just like crones irritable bowel
syndrome or rheumatoid arthritis. It's your body turning on itself.
(35:23):
It's mistaken, so it attacks itself. Your immune system attacks
your own body. And in this case, in the case
of an ecalepsy, they think that something about those hypocriting
um hypocreting producing neurons I guess are producing something that
seems like an antigen to your body. If you have
(35:43):
that specific variant of that hl A Jean and attacks them,
kills off those neurons. You don't have any hypocreting any longer,
and so you can't maintain wakefulness, and so sleep and
wakefulness just toggle back and forth throughout your day. Are
you gonna drop this stropped a caucus bomb? I think
you should. I think I understand it. But just after
(36:07):
the onset of narcolepsy, it looks like you have an
increased level of antibodies against streptocaucus and that's like strep throat,
and there are other infections involved, and so they've also
tied that to the time of year. Uh A. Narcolepsy
usually begins in late spring and early summer, which would
kind of make sense that there's an autoimmunitat going on
(36:27):
against those neurons triggered by strep throat or some other
kind of infection you get during the winter. Yeah, like
your immune system just goes bonkers because it's strap and
it's like what else, what else can I go after?
I'm really primed and pumped, And for some reason it
goes after your hypocretan producing neurons in your hypothalamus. That's nuts.
So your immune response is triggered by an actual infection,
(36:49):
they think, and the reason why they think this, and
it greatly pains me to to to reveal this, I know.
But there is a vaccine called endem Ricks that is
no longer available anywhere in the world. But it was
hot and heavy as a vaccine against H one N
one swine flu, and it was a really potent vaccine
(37:11):
against H one N one swine flu, and some European
Northern European countries during the two thousand nine to two
thousand eleven swine flu pandemic chose to use this to
inoculate their population with right. Well, there were reports that
have been backed up by studies, not just in um Finland,
(37:32):
which was a big place where this happened. But in
other places like the UK did studies to that found
the same results that there was a link between pandemics
and narcolepsy, that the pandemics triggered that immune response that
ultimately led to the immune system attacking the hypo cretan
(37:53):
producing neurons, so that H one N one vaccine brought
on a life long chronic case of narcolepsy. Yeah, I
thought that was hard to say, what not? Yeah, it
really was. I really really hate saying stuff like that,
I know, but you know what, you gotta we gotta
preach the science, and the science appears valid. Here dozens
(38:16):
of kids and um Finland developed narcolepsy, and I think
the new rate of cases of narcilepsy and kids increased
eight to twelvefold. And you know, I think out of
the fifty four kids who are diagnosed with narcolepsy, fifty
of them had had the vaccine. So yeah, and I mean,
(38:36):
these like these numbers are really really small, but if
you think about it, so four kids apparently in two
thousand and ten would have been diagnosed with narcolepsy had
that pandemic not happened in that or that particular vaccine
not been administered, but because it was, the number was
fifty four, not four. So even though the numbers again
(38:59):
absolutely are rather small percentage wise, there, that's an enormous,
a mind boggling increase in the number of NARCOLEPSI diagnoses. Yeah,
and it was linked directly to that vaccine and they
I keep saying that, and they caught it and it
is no longer being given anywhere. It was never available
(39:21):
in the United States. So, uh, Finland just sort of
got the brunt of it. It seems like, yeah, Finland,
the UK had a bunch um. Their rate was one
case of diagnosed and narcolepsy for every fifty five thousand
UM inoculations and children I think six months to eighteen UM,
(39:41):
but that washed out to like sixteen sixteen people UM,
which still I mean, if you're one of those people,
you're like, well, son of a gun, that really sucks.
But here's the key, and this is really really important,
and this is how we will be able to still
use a vaccine that is viable and po and works
against swine flu without giving somebody anarcilepsy. And that is
(40:05):
personalized UM drugs based on gene tests UM DNA tests,
Because of those fifty kids in Finland that received the
vaccine in two thousand ten that developed narcolepsy, every single
one of them carried that specific variant of the h
l a gene that is tied to narcolepsy. So if
(40:27):
you just did a simple DNA test, which hopefully will
be widespread in just a few years, you'd say, oh, no,
I'm glad we did this. You can't have pandemics, you
might get an arcilepsy, or basically there's a percent chance
you're gonna get an ecolepsy. Um, we'll give you this
other vaccine instead that that has been shown not to
produce narcilepsy and people like you. That's right, and you
can refer to our episode on personalized medicine. Yes, right,
(40:51):
we should do a follow up on that one. Yeah,
I agree, So that on the list for six years
from now. So basically, you've got these gene that pre
predispose you to um your immune system mistakenly attacking that
part of your hypothalamus. There has to be some sort
of trigger, either an infection or pandemics, um something like that. Typically,
(41:14):
an infection was stripped and then there seemed to be
two age windows where you're particularly vulnerable around fifteen and
around thirty six. They have no idea about any of that.
They just have they're starting to put this data together. Yeah,
I bet you they'll figure that out too, agreed. I
really feel like narcolepsy is going to be like totally
(41:34):
incompletely figured out in the next decade. I couldnot be
more jazzed about it, really. Yeah. Love science just figuring
things out, you know, just just doggedly, you know, working
in building on you know, somebody else's work. It's just
it's a beautiful thing when it's done right. Agreed. So,
if you are going to be diagnosed with narcolepsi, there
(41:57):
are a couple of tests that they're going to give you.
What is called an overnight uh Polly som no Graham,
that's right, a p s g uh. And that is
a test when you uh, it's one of those tests.
It's like a sleep studies when you go in and
sleep for them basically, and yeah, and they measure a
(42:17):
lot of things. They measure your brain waves, uh, they
measure your heart rate, eye movements, limb movements, muscle tone, respiration.
Get a lot of info there and then they'll say,
now you're gonna this is gonna be followed by the
multiple sleep latency test, which also sounds kind of fun
because that measures how quickly you fall asleep for a
nap every couple of hours during the day. I know,
(42:39):
when you have to go in for when you're like,
I gotta go to a doctor's appointment. Somebody goes, oh, sorry,
you go no, No, it's great, It's gonna be the
greatest day of my life. Yeah, those rooms make me sleepy. Um.
I could see some people being like, I can't go
sleep in a room, but I was well known as
a child for falling asleep in like a dentist chair
waiting for waiting for the dentist to come in. Um
(43:00):
or in a in a waiting room for are not
a waiting room, but in the exam room for a doctor.
I still get sleepy. And those just super clean, super cool,
quiet rooms with fluorescent lighting. It just zaps me. Yeah,
that's very odd, very odd. So, uh, four or five
knap opportunities during the day, they're gonna see how fast
(43:23):
you fall asleep, and if you followup, if you have narcalepsy,
you're gonna fall asleep super easy UM compared to someone
without an earcalepsy. Right, so that's that's a pretty big giveaway. UM.
If they're still like, I don't know, this is all this,
You know, this person patient history that we've taken in
these tests are inconclusive, they might test your cerebro spinal
fluid because UM hypocretan levels are very easily tested through that. No,
(43:49):
not nearly as fun, because they're gonna go through the
base of your skull, that hole in your skull where
your spinal cord. Yeah, I know. I hope that that
never befalls either one of us into anyone who's ever
had to go through that. We are very very sorry. UM.
But that also is looking like a place where they're
trying to figure out how to cure UH an ecolepsy,
(44:10):
because as it stands right now, if you're diagnosed with narcilepsy,
you've just been given a lifelong chronic diagnosis. You know,
there there's no cure for an eclepsy as it stands
right now, but there are treatments and from everything I read,
if you are actively treating your narcolepsy UM through a
(44:30):
doctor usually with prescriptions and also like behavioral modification, not
like you know, hooking you up to a car battery
and changing your behavior like that, more like making sure
you stick to like a good sleep pattern. Um, you
can very much keep your symptoms in check for sure.
It doesn't have to ruin your life. The trouble is
is that it's very frequently misdiagnosed and it's underdiagnosed, and
(44:55):
they think it's because it's occurs UM with so many
co morbidities like depression, where the doctors like, well, sure
you're falling asleep all day because you're just sitting around
on the couch, because you don't have any low energy
because you're depressed. Really, it's possible that you you have
developed depression because of the narcilepsy. UM. They haven't figured
(45:17):
out if they're co morbid or if the if one
causes the other, but they're pretty sure that an arc
eilepsy causes the depression. Yeah, you're probably going to get
a prescription for something um it maybe or it's probably
likely to be a daphanel these days. When we talked
about that in Our is Science Phasing out sleep episode, Yeah,
we've done a bunch of sleep once. I forgot about
(45:39):
that one riddling you might get uh, you know, it
says you know, in the old days meth amphetamins. But
they still prescribe a variation of speed for I'm not
sure if it's an ecailepsy, but I know an individual
that I was diagnosed with. I guess just it's dream
(46:00):
daytime sleepiness. Not they're in chores fast enough, No, no
for falling or get just feeling really really sleepy during
the day. And did the sleep study and all that,
and they were prescribed kind of whatever the version of
speed as these days was. When was that? When were
they prescribed? That was at nineties last year? Oh? Really,
I'm surprised because from what I saw, Madafanil is like, no,
(46:23):
don't need anything else, just take me daffanel. You don't
get addicted to it. There are very few side effects. Um,
it's supposed to just be like a wonder drug basically.
Mm hmmm. I don't. Anytime I hear that, I get dubious, right,
I think that's pretty pretty smart. Actually, Um, they might
also prescribe you anidepressant like an ss r i um,
(46:47):
which inhibits reuptake a serotonin, which means you have more
serotonin in your brain, which would make sense because what
hypocretan does is boost your levels of serotonin and other neurochemicals.
So this is kind of going around down that problem
and just making you have more serotonin than before, which
apparently helps maintain r E M sleep the barrier between
(47:11):
that and wakefulness a lot better. Yeah. And then the
final thing, which is really interesting and promising, is they
did the sort of logical thing, which is, hey, maybe
we can just get some more hypocreting in your body,
because if that's the problem, why don't we just do that?
So they cut out fat hauled legs of it for
you at the doctor's office. Uh. There are different methods.
(47:32):
Cell transplantation, which is just implanting cells. Uh, maybe implantation
of the gene like gene therapy. Maybe just giving it
through your nose or injecting it into your body, That's
what I'm saying, or interest sisternally chuck, which is again
through the base of the skull in the back of
(47:54):
your head where your spinal cord goes into your up
to your brain. They and inject into your cerebro spinal
fluid like that too. It's probably the least fun of
all of them, but they are they're on the case
basically is what that means. Yeah, and you know we've
talked sort of off and on throughout this thing about
your quality of life with narcolepsy. Um, it's obviously a
(48:18):
serious thing. There can besides just like holding a job
and um, socially and not being depressed because you don't
want to hang out with people because you may be
embarrassed by it. Uh. There's also like the very real
chance of accidents. Um. Some people are not allowed to drive,
some people are allowed to drive. It kind of depends
(48:40):
on I guess your your diagnosis. Uh. School is tricky.
Work can be tricky. Although they do UM they do
with the Americans with Disabilities Act. They provide for letting
people take naps and stuff like that, which is kind
of cool. It is. Yeah, if you have narcolepsy and
um you're at work, you can say, hey, employer, I
need them, I need a place to take a nap,
(49:02):
and they'll say, okay, that's great, let's say right in here,
and they're like, oh my god, Chuck's in there, right, Chuck.
The there's I mean it gets even sadder though, like
there there are people who who um die by suicide
from uh narcolepsy. There was a girl named Katie Clack
who got pandem riics and developed narcolepsy as a result,
(49:25):
and she ended up taking her life, um because she
just it just completely derailed things for um. She was
in no way, shape or form prepared for it, although
I don't know that anybody's prepared for it. And then also,
like you were saying, an accident can happen, and from
what I read, um, the risk of death and injury
among people with narcolepsy is almost twice that of the
(49:48):
general population through things like car accidents or you know,
cooking or going up a ladder or something like that.
If you suddenly developed cataplexy or a sleep attack or
something that's that's a bad time to fall asleep or
lose control of your muscles. You know. Well, and at
the very least you're gonna have to really arrange your
life to accommodate for this stuff, right, you know. But again,
(50:11):
if you are managing your symptoms, you can you can
lead a pretty normal life. I think it's just a
question of like getting diagnosed correctly. Yeah, well that's it
for ourclepsy. Hopefully we'll have it all figured out, and
when we revisit it in five or ten years will
be like it was all right, Everything was correct, it
(50:33):
was all right. And since I said it was all right,
it's time for listener, mate, I'm gonna call this soul
Train feedback. That was a fun show, and this is
from Julia. Hello, guys, we really enjoyed your Soul Train episode.
You did a great job capturing the feeling and cultural
(50:54):
significance of the show. You depicted a brilliant, flawed Don
Cornelius without gating his profound contribution. There was a monthly
black teenage magazine named right on. This publication gave names
to the dances and dancers. We would read the ink
off of the pages. Being black in America then and
(51:14):
now we watch mainstream America love the culture while devaluing
the people and criminalizing the young. Thank you for this episode.
And that is from Julia Pierce, the president of the
Tybee MLK Human Rights Committee. Nice Tybee Island. I guess
down in Georgia. I don't know, I guess so I hope.
So that's great. Thanks a lot, Julia, I much appreciated. Agreed.
(51:39):
If you want to get in touch with this like
Julia did. Give us props, or just say hey, you
guys are doing this too much, or be quiet. Well,
we never will, but you can still say it. You
can send us an email to stuff podcast did i
heeart radio dot com. Stuff you Should Know is a
production of I Heart Radios How stuff Works. For more
(52:01):
podcasts for my heart Radio, visit the I Heart Radio app,
Apple Podcasts, or wherever you listen to your favorite shows.
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