I've Got Narcolepsy: 6 Things Everyone Gets Wrong About It
We're most familiar with narcolepsy as a gag -- people in movies comically passing out without warning at inconvenient times. She fell asleep in her soup! Hilarious! But that's not quite how it works. We spoke to real people with narcolepsy -- Kevin, Mike, Heather, and Lexi -- and discovered that it's even more bizarre and disturbing than the movie-style insta-comas.
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."
"Gimme a nudge when there's a verdict."
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."
In that case, a coma probably would've been preferable.
Not everyone with narcolepsy experiences cataplexy (though about 70 percent of narcoleptics do). The confusion of the two is so ingrained in popular culture that you can have narcolepsy and not even know it.
"I said to the doctor that she had to be wrong because I don't pass out," Kevin says. It's a constant worry that people will get the wrong idea about his condition, because that can have serious consequences: "One of the reasons I don't want my full name on this article is I don't want an employer to Google my name, see the title, and think I'm going to pass out on them," he says. "That's the main thing I want people to take away from this article ... you're not going to just pass out."
We know, we know: You're having your world rocked right now. Hollywood got something wrong!
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."
One of the tricks narcolepsy plays on you is not developing until you're old enough to assume you don't have it.
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?'"
"Don't make us poke you with the 'sciencing' stick."
Why yes, that is also one of the ways governments torture detainees for information. Aside from living out your wildest Big Brother fantasies, you're also wired up like a science experiment.
"The hardest part was having the wires hooked up to me," Lexi says. "They have to stick wires up your nose, and stick things to your finger. It was very intrusive, and having people watching you is weird."
"We need you to relax exactly 37 percent more. You've got 30 seconds."
The doctors essentially look at your brain waves and determine whether your REM cycles are, in medical terms, all kinds of fucked up. Kevin explains, "The way people are supposed to work is 30 minutes heavy, then 30 minutes REM, then 30 minutes light, then repeat. I was going into REM within five to eight minutes of falling asleep."
Now, we don't know much about sleep science (or any other kind of science), but are you sure you're not a mutant whose superpower is instant dreaming? Are you, Kevin?!
Treatment Can Involve Huge Amounts Of Serious Drugs
Once you've got your diagnosis, the wild ride has only begun. Treatment for narcolepsy may involve any or all of the following: stimulants during the day to stay awake, psychiatric medications like antidepressants to control cataplexy, and strong sedatives at night to regulate your sleep, including possibly GHB. Yes, doctors aside from Huxtable can give you the date rape drug. It's so tightly controlled that Mike has to have it shipped in like he's a tweaker on the Deep Web. "You can't just walk up to a pharmacy," he says, "You have to get all your documents and send away for it, and there's this one pharmacy that sends it to you through the mail."
You can't spell "narcolepsy" without "narco".
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 ...
Self-Medication Is A Crapshoot
Kevin could publish a scientific paper on his experimentation with over-the-counter substances, and the results are not what you'd expect. Coffee, for example, is a double-edged sword. It will marginally help in the midst of a sleep attack, but "If I have coffee after a certain point, it makes it harder to wake up in the morning. When I first started having issues waking up, I tried drinking coffee when I went to bed to keep myself in light sleep so I could wake up to my alarm, but that made it worse."
This might be a problem beyond the scope of hot bean juice.
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."
"Woah. How many has she had?"
"None; that's our designated driver."
Aw, thanks Heather! We were worried it was too soon to call ourselves friends, but you clearly didn't. Way to take that first step!
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."
"So, um, nice visit. Say hi to dad for me."
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."
"Yes ... 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."
It Has A Huge Effect On Your Entire Life
We've all had days when we shambled into work like the world's least-threatening zombie after a bad night's sleep, and we don't tend to think of it as a big deal. Have some coffee and suck it up, right? Well, depending on your job, that kind of attitude can put a lot of people at risk. Being sleepy choke-slams your cognitive functioning, to the point where hospitals have been able to reduce the number of medical errors by over one-third merely by forcing their doctors to sleep more. But for someone who has narcolepsy, no amount of sleep is ever enough. Every day is a constant battle not to leave a sponge in someone.
"Double-check this patient, would you? If you do find a sponge, give it here. I could use a pillow."
Just kidding -- without treatment, they would never make it through medical school. "I had several cognitive tests, and they found I had a severe problem with executive functioning, which is the ability to plan things and follow them through, and I failed out of school," Kevin says. "I had a lot of problems being at school two hours away from my doctor. That was the reason for treating the narcolepsy -- so I could go to school." Heather adds, "The big thing is that it's very difficult to think clearly. I think people underestimate how hard it is to function mentally, and it does make things like school very difficult."
Even with treatment, there's only so much that can be done.
"I still have a problem with oversleeping and missing work," Kevin continues. "I have been much better about it, but I did recently get talked to about being late to work." Once you've managed the legitimately herculean task of getting to work, the real struggle begins. "I always try to keep a cup of coffee or some nicotine gum," Kevin continues. "I've never had an issue where it's like 'I'm going to fall asleep right now.' I can deal with that by getting a cup of coffee. It's just really unpleasant."
Even more so when that lady from accounting makes the pot. Ugh.
If you have the kind of job where falling asleep isn't going to turn you or anyone else into a stain on the freeway (and you have a very understanding boss), sometimes you gotta give in to temptation. "I used to go park my car near a park where I felt safe with lots of moms around, and I would sleep in my car between clients," Heather says. "When I was in school, I was a library aide, and I would sleep behind the library desk, and someone would ring a bell and I would pop up like Grover on Sesame Street. I've always found ways to cope with it."
Oh, and before you ask: No, rampant cocaine addiction is not doctor-recommended.
Manna has a newfound appreciation for what little sleep she gets, but that won't stop her from complaining about it on Twitter.
For more insider perspectives, check out 5 Ridiculous Myths You Probably Believe About Schizophrenia and 4 Things You Learn Having A Disease Doctors Can't Diagnose.
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