Sleep Attacks and the Many Faces of Narcolepsy

I've been falling asleep several times a day for my entire life. It was a problem all through high school, when I'd have to fight to keep my eyes open through those early afternoon classes. I remember the droning voice of one particular chemistry teacher, and the feeling of the tiles against my cheek as I sat in my chosen seat at the edge of the room where I rested my head against the wall. In my senior year, when I had a little more control over my schedule, I'd leave a period open towards the end of the day, when I'd head to a favorite library carrel and snooze until I was awoken by school bell.

There were problems as far back as elementary school, too. I was so happy when the teacher told us all to put our heads down on our desks. I'd withdraw into the comforting dark cave formed by my own arms, and breathe the close bleach smell of the sterilized laminate desk. Five minutes of bliss!

Photo from pexels.com, since a picture of me sleeping wouldn't attract many readers.

Apparently I was always able to keep this problem under wraps. No one ever disciplined me for it, or suggested I had a medical problem.

Whenever I heard about narcolepsy, this stereotype came to mind: the sudden collapse out of nowhere, someone walking down the street and then snoring on the sidewalk a moment later. Or someone at the dinner table, going face-first into a plate of spaghetti. The media usually makes this condition into a joke.

I never collapsed. I always figured I was just lazy. When I got tired during the day, I blamed myself for a lack of discipline. I felt pretty bad about it.

When I stumbled across the work of Julie Flygare, her book Wide Awake and Dreaming blew all my preconceptions out of the water. It turns out I'm not alone. One in 2000 people suffer from narcolepsy. And it comes in lots of forms.

That sudden, full-body collapse we've seen on TV is actually a symptom of cataplexy. This is a form of narcolepsy, and the condition is no joke. These collapses are usually triggered by strong emotions, so that someone experiencing a sudden scare or hearing a funny joke will find themselves waking up minutes later and wondering what happened. It means that driving a car or operating heavy machinery is out of the question for them, and it obviously has a tremendous impact on their quality of life. I'm grateful this isn't the case with me. I do get tired driving and take lots of naps in my car, but I'm always able to pull over and park someplace safe, first.

Fortunately cataplexy is something only a small proportion of narcolepsy sufferers experience. Most of us are just plagued by constant feelings of sleepiness. We have a shortage of the cells in our brains which produce the hormones that regulate wakefulness. No one really knows why these cells die off or disappear, but recent research suggests it has something to do with an autoimmune attack. The one thing that is clear is that there's no way of getting these cells back. And the impact on hormone levels can mirror those of extreme sleep deprivation, or even torture. A narcolepsy sufferer goes through the day with the same balance of sleep hormones that an ordinary person has after 48 to 72 hours of wakefulness.

Maybe that's why I've never pulled an all-nighter in my whole life. I always feel like I've been up for days.

Reality as a whole takes on a foggy, dream-like quality for us. We go straight into episodes of REM sleep, hearing voices and sometimes seeing things that are dredged up from our subconscious.

Weeks can go by where I never feel like I've fully woken up. Meanwhile, nighttime sleep is fragmented and interrupted. It's frustrating to be lying awake for hours at night knowing I'm going to feel terrible in the morning. At this point I've learned that there's nothing to be done about it, so the middle of the night's when I get most of my reading done.

That's probably enough on the subject for now, since I'm sure I'll be sharing lots more on the subject in the future. It's just been on my mind today. I've been pretty fired up about posting on Steemit. I've got some good posts on books and music queued up in the word-mill, and a couple of short stories I'm trying to polish off. But I've already fallen asleep in front of this keyboard twice, today. I've got nothing done and it's already 5 PM.

Do you get tired a lot? Have any of you been diagnosed with narcolepsy?

You can read about Julie Flygare and some of the tremendous work she's done for narcolepsy sufferers at http://julieflygare.com/

And here's a pretty good intro to the disorder: https://rarediseases.org/rare-diseases/narcolepsy/