Selects: How Narcolepsy Works

Stuff You Should Know

This episode of Stuff You Should Know explores narcolepsy, a misunderstood sleep disorder characterized by excessive daytime sleepiness and

Key takeaways

  • Narcolepsy is not simply about falling asleep during the day; it involves a range of debilitating symptoms including cataplexy, hallucinations, and sleep paralysis.

Main topics

  • Narcolepsy symptoms
  • Excessive daytime sleepiness (EDS)

Notable quotes

'I only remember going to Mississippi like once when I was a kid and visiting her. And I just remember my brother and I sitting in a room talking with her and her being in the middle of a sentence and then her head falling down. And then 10 seconds later, she would pick her head up and continue that sentence.'

Conclusion

Narcolepsy is far more complex and debilitating than commonly perceived. While excessive daytime

Transcript preview

Speaker 8 (0:00) This is an iHeart Podcast. Guaranteed human. I survived nine months in captivity, and I've spent my life exploring how other people survive what should have destroyed them. I'm Elizabeth Smart, and these are The Survivor Files. Every week, I'm with survivors who lived through the unthinkable, abducted, stalked, controlled, and nearly silenced. These are stories about what it takes to make it out alive. Listen to The Survivor Files with Elizabeth Smart on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 6 (0:36) On the new podcast, Solita, we share the messy reality of traveling alone as a woman. I can wait four hours for the next bus, or this random dude is offering me a ride on his motorcycle. I chose option B. I'm Julie Pinheiro, and I travel by myself because it's a rare space where I can say yes without asking anyone else first. I'm on a mission to reclaim the word solita, trading the pity for possibility. Listen to Solita on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 5 (1:11) If Speaker 6 (1:12) your bookshelf Speaker 5 (1:12) and your For You page are equally important to your personality, welcome home. Pro Society is a weekly podcast that's part book club, part group chat for anyone who thinks Pride and Prejudice and Love Island deserve the same level of discourse. Each week, we're connecting the dots between books, the internet, and pop culture with your favorite writers, book talk creators, and plenty of overthought opinions. Yeah, Speaker 7 (1:34) I'm obsessed. I'm obsessed. Listen Speaker 5 (1:36) to Pro Society on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 2 (1:42) Hey, guys. It's me, Josh. And for this week's Select, I'm going with our May 2020 episode on narcolepsy. It's one of those S-Y-S-K-esque episodes. that covers something we've all heard of but really know nothing about. And it's deeply satisfying because it all makes sense and it fits together once you understand it. Good stuff. I hope you enjoy it. Speaker 4 (2:11) Welcome to Stuff You Should Know, a production of iHeartRadio. Welcome Speaker 2 (2:22) to the podcast. I'm Josh Clark. And there's Charles W. Chuck Bryan over there. And I still know Jerry. Chuck, wake up. Huh? We're going to get some mail for that right off of the bat. I feel quite refreshed. So, Chuck, you might have narcolepsy then. If you just fell asleep, were you able to resist that urge to sleep just now? Speaker 3 (2:46) No. As soon as I heard, hey, welcome to the podcast, I went lights out. Speaker 2 (2:51) I think that happens to a lot of people. Have you ever known anyone with narcolepsy? I haven't. The closest I've come to that is watching my own private Idaho. Speaker 3 (3:03) What? What, did you find that sleep-inducing? Speaker 2 (3:09) No, no, there's a, I think, I don't Speaker 3 (3:11) know Speaker 2 (3:11) if it's River Phoenix or Keanu Reeves has narcolepsy. Speaker 3 (3:14) No, that's right. I forgot about that. I thought you were saying it's so boring you can't stay awake. Speaker 2 (3:18) No, no. No, that's cats. Speaker 3 (3:22) Did you see that? Speaker 2 (3:24) No, don't you remember that I tried to make myself go to sleep in Cats? Oh, that's right. I have not seen the movie, no. Speaker 3 (3:30) Yeah, that's what I was wondering about. Speaker 2 (3:32) After having been on Movie Crush, now I can't tell what's what anymore, what I said where. Speaker 3 (3:38) So my great-aunt Laura had narcolepsy, which is my paternal grandmother's sister. Speaker 1 (3:47) And Speaker 3 (3:47) I only met her a few times. This is from my dad's side of the Mississippi clan. So I Speaker 1 (3:54) think Speaker 3 (3:55) I only— I only remember going to Mississippi like once when I was a kid and visiting her. And I just remember my brother and I, this is my only memory of the visit, is Scott and I sitting in a room talking with her and her being in the middle of a sentence and then her head falling down. And then 10 seconds later, she would pick her head up and continue that sentence. Speaker 2 (4:16) Wow. Like without missing a beat or was there like a, you know, was she aware that she had just fallen asleep and woken up? Speaker 3 (4:23) In my memory from being like 10 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? Wait, your Speaker 2 (4:36) dad didn't prepare you for it? Speaker 3 (4:37) I don't remember. I blocked out, you know, purposely blocked out a lot of my childhood. Speaker 2 (4:43) Right, for sure. So I don't know. And that got folded into the shuffle. Speaker 3 (4:48) That's the only thing I remember. It may be a child's memory that is a little trumped up, but that's Speaker 2 (4:55) how I remember it. Wow, man. Well, yeah, I've never known anybody with narcolepsy. And based on that, going into this whole episode, like I was just basically going in like I'm sure most of our listeners are, where it's just like, yeah, just somebody falls asleep in the middle of the day. They can't help it. And then they wake back up and. Who cares, basically, you know? But the more that I've researched this, the more I'm like, you know, even if it were just that alone, it would be pretty disruptive to your normal life, depending on how often it happened to you, you know, every day. But the fact is, it's not just that alone. And there's a lot of extra symptoms to it that make it frightening or terrifying or depressing or just completely disruptive or make it so that you are maybe unable to hold down a job or go to school. It's actually a much sadder condition than I think most people think of because it seems innocuous. It's just like, hey, you fall asleep here or there. It's fine. And it's not. There's a lot more to it than that. Speaker 3 (6:00) Yeah, for sure. I should also mention, too, that something that should not be confused with narcolepsy is something that Emily's family has. And I saw this when we would go to visit when they lived in Ohio, when he would stay at her parents' house. Eating too much turkey? Well, you know, eating, drinking during the day such that by 7 to 8 o'clock at night, every night, Emily and I would look around. We're watching TV, and there are four. Usually three sleeping adults. And I dubbed it the gas leak, which everyone in their family thought was hysterical. Speaker 2 (6:37) Right. Now that's just plain old funny. Speaker 3 (6:40) Yeah, that's not narcolepsy at all. That's just, you know, at what age does that start happening is what I want to know because I'm creeping up there. 21. 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. Speaker 1 (7:01) So Speaker 3 (7:01) I use that time. I can stay up still till midnight, one in the morning if I am doing something. Speaker 2 (7:07) That's really neat. You must have a lot of testosterone left. Speaker 3 (7:10) I don't think so. Speaker 2 (7:12) Well, I mean, like to have energy after, you know, a certain time of day is, I think you have a lot of testosterone, Chuck. I would bet. We're going to take you in for a test after this. Well, Speaker 3 (7:27) I feel like it kicks back in. Like I'm sleepy sometimes during the day, but then when the night comes and my daughter's asleep, I'm like, all right, this is my time to shine. Speaker 2 (7:38) No, that's very fortunate, man, that you're not just like, this is my time to Netflix and chill. Like, you're getting stuff done. I'm envious of you for that because I get a little tired. But I definitely don't have narcolepsy. I'm just kind of like, I'm somewhere between you and Emily's family. They get asleep, right. Speaker 3 (7:55) Yeah, so narcolepsy is a chronic disorder. It's a sleep disorder. And I know we've talked a little bit about this in some of our other sleep disorder episodes, so much so that I thought we might have actually covered this, but I quadruple checked, and we have not. But it's characterized by a few things. One of the main tenants, that basically everybody that has narcolepsy has what's called excessive daytime sleepiness. Right. Speaker 2 (8:24) That's what everybody thinks about when you think of narcolepsy. Somebody just falling asleep. They can't help it. They're just suddenly out. Speaker 3 (8:30) That's right. Speaker 2 (8:31) Yeah. They also call those sleep attacks, which is pretty cute. And no matter what variation of narcolepsy you have, you have excessive daytime sleepiness, EDS, right? Speaker 3 (8:45) That's right. This is nothing new. We're just now sort of figuring it out a little bit since the 90s, which we'll get to. But obviously, this has been happening since there have been people. They've probably been suffering from narcolepsy, you know, a small percentage of people. But it was first described in 1880 by a French physician named Jean-Baptiste-Edouard Guilaineux. Speaker 2 (9:13) Not bad. How Speaker 3 (9:14) would you have said it? Speaker 2 (9:15) Jean-Baptiste Edouard Geleneau. Geleneau? You have to put that little uptick on the end. I think that's called an accent d'agout. Right. Right. So, yeah, that's how I would have said it. But either way, I think we basically got it across. He was a French physician from 1880. That's the important part. Speaker 3 (9:36) Yeah, and the origin of the actual term is... From Greek, narka, which is numbness or stupor. Stupor is one of my favorite words. And lepsis, to attack or to seize. Speaker 2 (9:48) Right. So it's an attack of stupor, basically, is what he meant when he coined that term. And the reason Jean-Baptiste Edouard Joleneau came up with this is because a 36-year-old wine cask maker came to him and said, hey, I think there might be something wrong with me. I fall asleep suddenly out of nowhere for one to five minutes, 200 times a day, every day. What do you think? And Jelano said, I think I'm going to make my career on you, buddy. Speaker 3 (10:22) 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. Speaker 2 (10:30) 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 24-hour period somebody with narcolepsy and put their amount of sleep next to somebody without narcolepsy, over 24 hours, it's going to wash out to roughly the same. Did you know that? I Speaker 3 (10:52) didn't know that, but does that mean that this guy— Dozed eight hours a day and then stayed up all night? Or did he sleep another five hours at night and just slept a lot? Speaker 2 (11:01) No. So that's 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 24 hours rather than concentrated over, you know, eight hours at night. So they're up and awake in the middle of the night for very long periods, just like they fall asleep suddenly during the day. But if you put all those bouts of sleep together, even when they're trying at night and then when they can't help it during the day, it adds up to about the same that a person without narcolepsy will sleep. That's my understanding. Speaker 3 (11:39) No, that's pretty remarkable. It Speaker 2 (11:41) is. Like the brain's like, I'm getting sleep whether you like it or not. We're making this happen. At least by 24 hours, we're going to have had enough. Speaker 3 (11:51) And, of course, you know, since this has been, you know, we're talking about the 1880s, there have been a lot of explanations over the years. Everyone from Freud to, you know, I was about to say legitimate doctors that probably would offend certain people. I like Freud. I like Freud, too, but I meant like, you know, Speaker 2 (12:08) never Speaker 3 (12:08) 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. Speaker 2 (12:27) I love it. Why not? 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. I just think Freud's attempts at explaining the world were great and valuable in the way that preserving classic art is. Speaker 3 (12:48) Yeah, I've been to his house. Speaker 2 (12:50) What? Where? Speaker 3 (12:51) In Texas? Yeah, the Sigmund Freud house in Tyler, Texas. There Speaker 2 (12:58) are a lot of Germans in Texas, although I know he was Austrian. Speaker 3 (13:01) Yeah, I mean, I believe I saw it in Vienna, if I'm not mistaken. Speaker 2 (13:04) That's neat. That is very neat. Was this when you were backpacking? Speaker 3 (13:07) Yeah. Speaker 2 (13:08) Of course. Chuck, you need to do a memoir of that time in your life and call it Backpacking to Freud's House. Speaker 3 (13:16) Okay? Okay. Okay. Speaker 2 (13:18) And the book could just be shaped like a penis. Sometimes a book is just a book, Chuck. That's Speaker 3 (13:25) right. Speaker 2 (13:25) So Freud missed the mark a little bit, but still, again, it's worth mentioning, just like appreciating art. It wasn't until the 60s where they're like, okay, I think we're starting to get some real clues here. And that was when they first established that people with narcolepsy enter REM sleep during these bouts of narcolepsy, which you are not supposed to do. Under normal sleep patterns. which we talked about many, many times before, like you said, when you fall asleep, it should take you a little while to enter REM sleep. That's a deeper phase of your sleep pattern, right? With narcolepsy, they're out and into REM sleep so quickly that a different way to characterize it that narcolepsy researchers put it is that REM activity, it intrudes into wakefulness. The line between... Being awake and being in deep REM sleep is that blurred for people with narcolepsy. Speaker 3 (14:25) Yeah, and I feel like I've occasionally in a really intense power nap had a dream, but that's only when it's, and I don't get to nap anymore, but that's when I've just been so tired that I just nap and fall asleep like immediately. Speaker 2 (14:41) That's neat. I'll bet you, do you feel refreshed when you wake up? Speaker 3 (14:45) 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 20-minute disco nap. I mean, you really power through for a couple of hours. Speaker 2 (14:55) Right. I thought you were recounting some of your cocaine-using days. No, no, no. I