You brush your teeth, put on your pajamas and climb into bed. Someone attaches wires and electrodes to your head, chest and legs. You drift to sleep under the watchful eye of a video camera.
Sounds like something out of a creepy sci-fi film, but really, it’s a sleep study that can help diagnose narcolepsy.
It’s also something you might not know about living with narcolepsy, at least according to Kevin, Lexi, Heather and Mike. They shared their experiences with Cracked, and the result was a list of things they wish people knew about narcolepsy.
- You don’t just pass out
A sleep attack doesn’t always happen in an instant – in other words, it’s not all-of-a-sudden-you’re-asleep. “Excessive daytime sleepiness” is sometimes a better description, and it’s more of an all-of-a-sudden-you’re-sleepy feeling. Heather said she can tell when the sleep attacks are coming. And the sleepiness is hard to fight, according to Lexi.
Close to 70% of people with narcolepsy, though, experience cataplexy. This causes muscle weakness, without warning. So cataplexy might cause sudden collapse, but the person isn’t asleep.
- Diagnosis = Supervised Sleep
Narcolepsy is under-diagnosed. Kevin told Cracked that the condition can develop over time, so it’s not easily noticeable.
That’s where the sleep study I talked about earlier comes in. You can read more about sleep studies here.
- Treatment involves lots and lots of drugs
Stimulants for daytime, antidepressants for cataplexy, sedatives for nighttime… there’s a potentially long list of drugs involved in managing narcolepsy.
Interestingly, nicotine can encourage REM sleep, but smoking can be dangerous for people living with narcolepsy. Lexi uses a nicotine patch.
- Self-medicating is a gamble
What about coffee? Well, it could help ward off a sleep attack, but it also might affect sleep cycles at night.
Kevin said he would drink lots of alcohol on nights before an early morning, because alcohol inhibits REM sleep.
With cataplexy, sometimes it comes down to watching your emotions, as strong emotions can spark a cataplectic attack.
- There are weird dreams and weirder hallucinations
A messed-up sleep cycle can cause sleep paralysis, hallucinations, and dreams you might mistake for reality. Kevin dreamt about pigs only to wake up and see pigs with spears on their backs circling the room. Pretty crazy, right?
Heather said she could experience up to 20 sleep paralysis episodes in one night.
- It affects everything
I’ve pulled my fair share of all-nighters, walking through life the next day under a caffeine-fueled haze, but narcolepsy is a completely different ballgame.
Heather said:
“I think people underestimate how hard it is to function mentally, and it does make things like school very difficult.”