I am not a hypochondriac. Really, it’s just that there’s frequently something wrong with me, so it seems like I’m a hypochondriac. I like to think of myself as “on top of things.” In this case, I very much have not been on top of things.
I confess that before Narcolepsy was brought up I had only the vaguest of ideas about what it was. Like most people I thought it was a thing that made you fall asleep randomly in the middle of what you were doing, like in the terrible movie “Deuce Bigalow.” As it turns out, while randomly falling asleep would indicate that you likely had Narcolepsy, that isn’t really typical for people with Narcolepsy (PWNs).
Excessive Daytime Sleepiness is the most common symptom and that’s just what it sounds like. They say that if you wanted to experience what the day-to-day reality of a PWN is, you’d have to stay awake 48-72 hours.
I’m tired almost all the time. I usually have about 2 hours a day where I feel properly awake. My ESS is 16. 16 is the average score for Narcolepsy. It’s remarkable that my score is so high considering my sleep hygiene. Dark room, earplugs, same bedtime every night, 8.5-9 hours of sleep, no caffeine, no alcohol, no nicotine, no tv in the bedroom, no books in bed. This sleep hygiene routine has maybe knocked a point or two off the ESS since my college days, when I was more prone to falling asleep driving or talking to people because of my sleep schedule. There are other things that can cause sleepiness, Sleep Apnea and Restless Leg Syndrome being the most common, but I don’t snore, I have a well-defined palate, I don’t kick, and I’ve never had anything like restless leg feelings.
Cataplexy is the second most common symptom. Cataplexy is where you lose control over your muscles when you experience strong emotion. Most commonly and most severely this would mean you would totally collapse when you laughed, but it can be triggered by anger or arousal or excitement and you can just lose control over one muscle group, often your head or jaw or knees.
… This symptom is the one that worries me because, as far as we know, cataplexy is a slam dunk for a diagnosis, if you have cataplexy you have narcolepsy. I fall down a lot, several times a week, but not usually preceded by strong emotions. I’ve always assumed it was because of low blood pressure or vasovagal response, both of which I have, but I also have falls that aren’t like the others and I lose control over my jaw sometimes when I feel very angry, anxious, or laugh. I slur my speech, it’s a bit of a fight to talk, particularly when anxious or angry. I can’t stand up if I cry. And then there’s this other thing.
There’s this thing that happens when I go on roller coasters that everyone I’ve ever gone on roller coasters with gets really bothered when I try to explain it to them. I always sort of simplify and say they make me feel like I’m going to sleep. I don’t know if cataplexy is supposed to make you feel bad, but on roller coasters I get really excited and then it’s like my body falls asleep, like I can’t even see or hold the rail or my head up, and I’d feel like I was asleep but awake. As a person with anxiety, it’s weirdly releasing, and it never lasted til the end of the ride, so I have no problem getting off the rollercoaster. That same thing happens frequently if I am experiencing a great deal of pleasure in the bedroom. I won’t be able to support my weight and if I try I will do that same thing, my whole body will go limp and I won’t be able to see for a few seconds. Recovery is instant, quick, and complete. My understanding is that what I’m describing there sounds exactly like cataplexy.
Hypnogogic Hallucinations and Sleep Paralysis are the last two symptoms. The first describes going into REM immediately when you fall asleep so you have dreams while you think you are awake. The second describes waking up and being unable to move your body because your body thinks you are still asleep.
For me, these symptoms happen concurrently. Yesterday, I fell asleep in the middle of the afternoon, something I try to avoid, and spent an hour trying to wake up out of sleep paralysis and hallucinations. I kept thinking someone was in the house but I couldn’t move, I would wake up and be unable to move and then be half-asleep again — I’d manage to move a little and then fall asleep again and again. I finally moved enough to be able to slap myself hard in the face several times.
There are other things that aren’t symptoms but are associated with Narcolepsy:
- Obesity related to constant hunger from sleep deprivation: Check (Though I usually manage to squeeze into the overweight class)
Other auto-immune conditions: Check (Severe Allergies, Thyroid; Narcolepsy is believed to be an auto-immune condition caused by your immune system killing all the cells in your brain that produce hypocretin)
- Severe virus before onset or worsening of symptoms: Check (I’ve had these symptoms for a long time, but they’ve got worse since my Pneumonia, Flu, Mono trio last year)
- Automatic behavior: Check (I do this a lot when driving long distance)
- Brain fog/memory problems: Check
- Difficulty paying attention: Check
- Depression: Check
- Low Vitamin D: goddamnit Check
On top of that, there are genetic markers that signal your likelihood of having Narcolepsy, and thanks to 23andme, I know that I have a much increased risk because of my genes. In fact, of everything I have increased odds for getting, my chance of getting Narcolepsy is the most increased above average. Followed closely by Parkinson’s, which is, OH GOOD, associated with Narcolepsy too.
So all this points to a not impossible chance that I have Narcolepsy. Really, the amount I’m trying to talk myself out of the possibility of Narcolepsy is probably quite laughable and hardly very skeptic of me. The things is, as much as I’d like to fix my symptoms, if they’re something else that will just go away, it’d be better. People with Narcolepsy have a quality of life approximately the same as those with Parkinson’s or Epilepsy. It’s not exactly a pretty picture. There’s no cure and no guarantee that any of the treatments will work for you.
And the treatments are kind of intense — basically they give you uppers and downers and hope it makes you alert and have better sleep than you would otherwise. One of the most effective drugs? Sodium Salts AKA GHB, the date rape drug. Also almost all treatments both interfere with birth control AND you can’t take while pregnant. Though maybe at some point there’s so much wrong with me that I really shouldn’t inflict that on a new human being anyway.
Anyway, waiting for the diagnosis I am flipping back and forth between wanting them to say I have it so I can get a treatment and really, really not wanting to have Narcolepsy. I guess having something that’s treatable is better than just being tired all the time with no recourse, but I’m not happy about it.
Read: Part 1, How I got Here
Next: Part 3, The Sleep Test (coming soon)