There Can Be Horrifying Hallucinations, Dreams, and Sleep Paralysis
Because the disorder involves abnormal sleep cycles — put simply, REM shows up when it shouldn’t — you experience a lot of weirdness. This can manifest in extremely vivid dreams, sleep paralysis, or hypnagogic hallucinations, which is when those vivid dreams barge their way into the real world when you’re not quite fully awake.
“It’s really, really crazy vivid,” Lexi says, “Like one time, I saw my mom standing right in front of me and I was like, ‘Okay, I’m not sure why you’re here at 3 a.m.’ and then she just walked through the wall.”
Heather had the same one for years: “I would stare at the wall, which was white, and it would swell like a marshmallow into my mouth and down my throat until it was choking me.”
Think that sounds horrifying? What would you do if you woke up to find dozens of hyper-evolved pigs circling your bed? Kevin knows exactly what he would do: “One time, I had been dreaming about pigs and evolution and screwing up the pig’s evolutionary cycle to get ahead, and when my father woke me up, there were pigs running around the room with spears on their backs. I run and jump in the shower as soon as I can before the pigs can come in and stab me with the spears, but as soon as I came out of the shower I realized, oh, that was just a dream.”
This shit really messes with your waking life. Sure, it’s not hard to tell yourself that the murderous pig-men weren’t real, but what about something more mundane? The dreams and hallucinations are so vivid that“sometimes I’ll have to think hard about whether something really happened or if I dreamed it,” Kevin says.“It can be conversations I had a week ago.”
There’s also sleep paralysis, which you’ve likely experienced yourself once or twice. But if not: “You’re fully awake, but you can’t move, you can’t speak,” Lexi says. “It’s pretty terrifying. It can last anywhere from one to 20 minutes.” Heather adds, “A normal, healthy person might have sleep paralysis a few times in their lives, but I might have 15-20 episodes of sleep paralysis in a single night. It sucks, a lot.”
Self-Medication Is A Crapshoot
On the other hand, alcohol — which normally turns people from the life of the party into a cinder block — helps Kevin for the same reason it doesn’t help you. “Alcohol limits your REM sleep,” he says. “I used to drink heavily the nights before I had to wake up early. That wasn’t always a reliable way to wake up, but it was very helpful … I have made mistakes sometimes and overslept because of drinking, but on a typical day, sleeping pills are the best, alcohol seems to help a bit more, and coffee after a certain time won’t necessarily make me an insomniac, but it does make it harder to wake up.” In fact, if you’re looking for insomnia, try Nyquil. “That’s the one thing that will always 100 percent trigger it,” Mike says. “If I take it at night, I just won’t sleep.”
It gets weirder. Since cataplexy is primarily triggered by strong emotions, it’s important for sufferers who experience it to avoid feeling too much. One time, Heather says, “I got mad at my ex, and I stomped up the stairs and immediately face-planted.” But in cataplexy’s defense, who could possibly stay mad after that? Heather also says, “I can’t go out with my friends when we get drunk, because they’re too funny.”
Treatment Can Involve Huge Amounts Of Serious Drugs
Scientists also noticed that people who have narcolepsy tend to smoke cigarettes at a much higher rate than the general population. They found that low levels of nicotine increase REM sleep, which makes sufferers less tired during the day. But there are drawbacks: Cigarettes pose a special set of risks to people who have narcolepsy, such as them lighting themselves on fire when they fall asleep while smoking. That’s why some compromise by using nicotine patches. “I use a 7-mg nicotine patch every day,” Lexi says, adding “I have tried so many medicines, [and they]did nothing for me.”
You know what they say, nicotine: You either die a hero, or live long enough to see yourself become the villain, or live even longer than that and become kind of a hero again? That being said …
Diagnosis Is A Bizarre Process Full Of Scientific Naptime
For those of you now wondering if you might have narcolepsy, which is probably everybody who skipped their morning coffee before reading this, it’s entirely possible. It’s a hugely under-diagnosed condition.
“The thing about narcolepsy is that it develops very gradually, which makes it harder to notice,” Kevin says. Adds Mike: “I found out I was narcoleptic because I was having issues with sleep and I talked to my counselor, who said I should get a sleep study done. There was no doctor who said, ‘I think you might have narcolepsy.’ It was six months working with a psychiatrist and other doctors before somebody put me in a sleep study and I was diagnosed immediately.”
This “sleep study” business they’re talking about is exactly what it sounds like: basically, a medically supervised nap. Sounds like the best test in the world, right? Not exactly:
“I went to the doctor’s office at 7 the night before and went to bed, and stayed there the entire day to do the nap test,” Kevin says. “Every two hours, I would take a 30-minute nap … There was a room next door, and they’d have a camera. When I was doing the night portion, I wasn’t allowed to sleep during the day, so they’d have that camera, and if I started to look like I was dozing off, they’d come over the intercom and say ‘Hey, you staying awake?'”
Some People Don’t Pass Out
For nonfictional people, narcolepsy is characterized by what’s called “excessive daytime sleepiness.” It’s the sudden, overwhelming desire to take a nap, no matter how much sleep you’ve gotten.
“The sleep attacks, it’s not what people think,” Heather says. “It’s a lot more controllable than that. You can tell when it’s coming … If you’ve ever like, during exam weeks, sometimes people will stay up two nights in a row — one night wouldn’t do it — to the point that you feel you cannot keep your eyes open anymore, or when you’re driving in a car and it’s really monotonous, that kind of drowsiness … You can continue and struggle to fight against it, but you’re really fighting a losing battle.”
To Hollywood’s credit, the “falling asleep at inconvenient times” part isn’t a total fabrication. “You don’t necessarily just fall asleep, but it is so hard to resist that there is some falling asleep in weird places,” Lexi says. “I fell asleep at the vet once.”
What leads to misconceptions like the classic soup scuba gag is a completely different but associated phenomenon called cataplexy, which is characterized by sudden muscle weakness. When someone is suffering a cataplexy attack, it might appear that they’ve fainted, but they’re actually still awake.
“[People] think I’m in a coma or something, but I’m awake and aware of what’s going on,” Heather says. That can lead to some wacky misunderstandings: “There was one time I was taken in [to the ER]and there were two nurses rolling me over and saying, ‘I’ll get a rectal while you do the catheter.’ I was stuffed like a turkey from both ends.”