When most people think of narcolepsy, they have a bit of a theatrical take on it: an affected person falling asleep mid-bite at dinner or while giving a presentation at work. While narcolepsy kinda, sorta works like that, that’s far from the whole story. With that in mind, here are some things you probably don’t know about the disorder, which affects around 12,000 Australians:
1. Falling asleep mid-sentence doesn’t usually happen.
That’s the extreme form of the condition. “It’s not that you’re walking down the street and just fall over asleep,” says DR W. Christopher Winter, author of The Sleep Solution. “It’s more that you might be out at a restaurant and have an urge to sleep that’s so overwhelming, that you leave immediately and go to your car to sleep.”
Another way to think of it is that people without narcolepsy have a very stable period of wakefulness throughout the day, while those with it do not. “They feel sleepy beyond what you can even imagine,” says Winter. “It can be terribly debilitating.”
2. There are two different kinds of narcolepsy.
The difference all comes down to whether or not you have something called cataplexy. “Cataplexy is when you’re experiencing a lot of emotion, whether you’re upset or having a great time, and you lose muscle tone and become somewhat paralyzed,” Dr. Winter says. “Type 1 narcolepsy has cataplexy and type 2 doesn’t.” Cataplexy can be misdiagnosed as a seizure or passing out, but the difference is that you stay aware of everything as opposed to losing consciousness. It can also only affect only a few muscles, like in the hands or feet as opposed to your entire body.
Another distinction is that people with type 1 narcolepsy have low levels of a brain hormone called hypocretin, while people with type 2 do not. The lack of sufficient hypocretin is considered one of the causes of type 1 narcolepsy (and is the reason for cataplexy). Recent research tends to focus on the brain-chemical component of narcolepsy, leading more experts to see it as an autoimmune disease rather than a sleep disorder.
3. Many people with the condition don’t know it.
“Around 50% of people with it are undiagnosed,” Dr. Winter says. One reason why: It’s easy to write it off as something else, like a different sleep disorder, or just to assume everyone else feels as exhausted as they do. All this low energy can make someone with narcolepsy feel pretty badly about themselves, according to Dr. Winter. You wonder why you just can’t get as much done as other people or wind up feeling lazy on a daily basis.
“It’s also really isolating because you’d always rather be sleeping, which is why it can be linked to depression,” Dr. Winter adds.
4. The signs can be subtle.
It’s important to talk to your doctor if you think you have narcolepsy, but what does that look like? “Excessive daytime sleepiness is the big one,” says Dr. Winter. “Do you have a significant drive to sleep in unusual circumstances?” Other signs are that you wake up but are unable to move, a condition called sleep paralysis. Experiencing hallucinations as you fall asleep or wake up is an other symptom.
5. There’s no cure.
Luckily, there are medications that can help how you feel. “Most patients with narcolepsy take drugs to improve the quality of their sleep at night as well as feel more awake during the day,” says Dr. Winter. “Your doctor will be able to come up with the right combination to try for your treatment plan.”