Narcolepsy is a neurological disorder that affects the brain’s ability to regulate sleep-wake cycles normally.
It’s a widely misunderstood condition which can be frustrating and isolating for those of us who live with it.
Here’s 15 things you only know if you have narcolepsy.
1. There’s narcolepsy and then there’s Hollywood narcolepsy
The cartoonish depictions in Deuce Bigalow: Male Gigolo and Rat Race have caused widespread misperceptions of narcolepsy.
Unlike on-screen portrayals, it is incredibly rare for someone with narcolepsy to go from fully alert to fast asleep at the drop of a hat.
2. People misinterpret your symptoms
You’ve been asked if you stay out late partying all the time, have a drug problem, or if you’re simply lazy and lack motivation.
3. Sleepiness and tiredness are not the same thing
Sleepiness isn’t just lack of energy, it’s having trouble keeping your eyes open, being unable to concentrate, and having the strong urge to nod off.
It feels like you’ve been awake for 24-48 hours.
4. Your naps are a necessity, not a luxury
Don’t call them catnaps. Cats take naps because they want to – we take naps because we have to.
5. You sometimes cannot move or speak while falling asleep or waking up
These episodes, called sleep paralysis, only last a few seconds or minutes but are sometimes frightening and always annoying.
6. The ghostly figure in your bedroom isn’t paranormal, it’s parasomnia
Visual, auditory, tactile, or other sensory hallucinations can accompany sleep paralysis.
In the past, these experiences were interpreted as everything from demonic spirits to aliens.
7. You do things without remembering doing them
This is called automatic behavior and can happen when you’re sleepy and performing ‘second nature’ activities like cleaning.
Unfortunately you’re not doing these things well.
This is why your lecture notes look like they were written by a drunk tortoise and how your glasses ended up in the frige.
8. Narcolepsy and insomnia aren’t opposite conditions
People with narcolepsy don’t sleep more than the average person.
Many of us experience difficulties staying asleep due to problems like vivid dreams, periodic leg movements, or even insomnia.
9. Laughing can be scary
Around 70% of us experience cataplexy, a sudden, temporary loss of muscle tone brought on by strong emotional reactions like fear or laughter.
This results in anything from a mild drooping of the eyelids to collapsing on the floor.
We’re not asleep but fully conscious and unable to move or speak. It can be terrifying.
10. Narcolepsy is not a behavioral disorder and cannot be fixed with diet and exercise
The most common form of narcolepsy, narcolepsy with cataplexy, is caused by the destruction of brain cells that produce the wakefulness-promoting neurotransmitter hypocretin.
So please stop asking if we’ve tried transcendental meditative cardio pilates or low-carbohydrate gluten-free sugar-free detox cleanses.
11. Your brain fog gives London a run for its money
Constant sleepiness leads to brain fog – the feeling of being in a daze, forgetfulness, lack of focus, difficulty thinking, blurred vision, and confusion.
12. The medications might help with some of the symptoms, but they aren’t a cure
Doctors prescribe meds to improve daytime alertness, nighttime sleep, and reduce cataplexy attacks.
However, these drugs can have undesirable side effects and some people also develop tolerance with long-term use.
13. Narcolepsy varies from person to person
Some people have all the symptoms I’ve mentioned above, some only have one or two.
14. Getting the right diagnosis isn’t easy
It takes an average of three to five years for people with narcolepsy to be properly diagnosed.
Many people are first misdiagnosed with things like stress, depression and epilepsy.
15. Narcolepsy isn’t very rare
Narcolepsy affects about one in every 2,000 people, so by most definitions it barely qualifies as a rare disease.
But I think we’re pretty darn special, so that ought to count for something.