Narcolepsy: Part One

Walter The Sleeper

My senior year of high school I developed a strange problem in physics class. I would become bored and drowsy. I would lose my ability to follow everything that was said, but I would be able to copy down anything written on the board. I started having blank spots in my memory, not black outs so much as grey outs. I would know that I’d been sitting at the desk copying things on the board, but I would have almost no memory of it. I would be left only with dubiously legible notes that I didn’t even remember writing. Fortunately for my physics grades, the advanced physics teacher encouraged us to collaborate on homework so I could reliably get all the help I needed. This trend of getting other students to explain material in physics classes I slept through continued into my freshman year of college. (Thank you Aftaab, Saugat, Niraj, Rutledge, Sam, Ben, Paul, and anyone else who helped fill in the blank spots).

I had developed the first symptoms of narcolepsy: inappropriate sleepiness and automatic behavior. I was just starting to lose the ability to stay awake in situation of passivity or disassociation. In response I developed reduced my attention span. If reading a book would put me to sleep, I had to alternate between that and something more engaging. Fortunately the internet is well suited for someone who needs a constant flow of novel information, videos, music, or pictures. My google reader has 209 subscriptions to various feeds. My taste in books shifted to accommodate my inability to handle long dry works. I was physically unable to read The Silmarillion, which I read in eighth grade. I started reading a particular flavor of non-linear works including the works of Milorad Pavic, Samuel R. Delany, the group of Italian writers called Wu Ming (formerly Luther Blissett), Mark Z. DanielewskiJohn Gardner, and the short stories of Jorge Luis Borges.

By sophomore year of college I discovered that my only hope to get through class lay in consuming caffeine whenever I felt myself dozing off. Unfortunately the quantities of caffeine necessary to wake me up increased any social anxiety I might have well out of the normal spectrum of human experience. If I was awake in class, I was likely to be a nervous wreck and unable to speak. Foolishly I went to the counseling center, now famous for their malpractice. They wanted to medicate me, and proscribed SSRIs and Beta-Blockers. The SSRIs had no clear affect, but the Beta-Blocker, a depressant, made my sleepiness even worse. When I voiced my concerns to the counseling center, they told me I just needed more sleep. I stopped taking them. The SSRIs probably also accidentally treated my cataplexy, the most unmistakeable symptom of narcolepsy. By the second half of junior year of college, having dropped the SSRIs, my cataplexy was becoming apparent. I started experiencing curious weakness in my knees at humorous moments. My excessive sleepiness was obvious to everyone and become a running joke. Though, to be honest, I rarely mind jokes about falling asleep or being tired and make half of them myself.

I feel a little bad including this picture out of context. They were making fun of me, but in a very friendly way.

I learned later that other students in my study abroad program in Mongolia actually suggested that I have narcolepsy in a discussion they had while I was napping. No bothered to mention this theory to me, but I got the impression that they neither understood narcolepsy well nor were they particularly invested in the theory. When I told them later, one student assumed that I was using narcolepsy as an excuse for bad sleeping habits and spent a program reunion joking about how I must have convinced some doctors I had a real illness so I could get stimulants and an excuse. I didn’t realize till later that he was serious. For the record, I do find being accused of faking insulting.

I finally figured it out the summer of 2011. My summer job was demanding enough that my excessive tiredness was impossible to hide. My brother suggested that it was narcolepsy, but I still believed that narcolepsy envolved falling over. Nevertheless I looked it up on Wikipedia, and halfway through the article the truth dawned on me. The symptoms, previously disconnected and inexplicable, from cataleptic hallucinations to the periodic lethargy, where suddenly illuminated as part of a larger whole. To be honest it was a relief to finally understand.

Naturally it was a week before I could see a doctor and over a month before I could get tested in a sleep lab. I had stuff glued all over my head so they could track my sleep cycles by braves waves and muscle movement. It was really uncomfortable. This is when I discovered that I could nap on command, even if I didn’t really want to sleep. I napped for twenty minutes every hour and spent every waking moment groggy and disoriented. I had dreams in which I remember being bored of sleeping so much.

Photo on 2011-08-23 at 09.27

But, when the tests came back I got good news. The fact that I was able to fall asleep in under a minute on command and go into REM in under 8 minutes (usually takes about half an hour) meant that my sleep cycles were too weird to be normal. I finally had a diagnosis, an explanation, and treatment. So things were looking up.

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