Sleep’s Choice: Living with Narcolepsy

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Date:
Friday, October 12, 2012

why these cells disappear; it’s possibly an autoimmune reaction – mixed up signals, mistaken attacks on myself. 

What is known is that these hypocretin cells are somehow integral to the proper functioning of the sleep/wake cycle.  Without them, the boundaries between waking, sleeping, and dreaming, are… well, confused.  This confusion has led to a number of curious and sometimes dangerous situations for me – times when I’m partially awake and partially dreaming, times when my brain and body are in conflicting parts of the cycle.  Scary places of hallucination and muscle paralysis that most people, thankfully, never experience.  Oddly enough, all this confusion was brought on by a microscopic loss of cells I’d never known I’d had, never mind lost.  And even odder that all this loss bears one name – “narcolepsy.” 

The sleepiness of narcolepsy, technically called “excessive daytime sleepiness,” means that, even with the best medication available – amphetamines and other wake-promoting drugs, my brain still demands to be shut down multiple times a day.  People who don’t have narcolepsy constantly “know how I feel” and I nod my head in agreement, like a plastic bobble-head doll.  Yet it’s been said that an average person would have to stay awake for 48 to 72 hours straight before they would feel the same violent call to sleep I experience daily.  

Sleepiness is similar to hunger and thirst – all three are involuntary commands intended to provoke certain responses.  Hunger and thirst are the body’s signals to eat or drink something.  Sleepiness is the body’s command to sleep.  These are not unpleasant sensations at first, just subtle reminders to give your body what it needs.

Imagine being hungry but denied food for 48 to 72 hours.  I’ve never gone so long without eating, but I would expect that the experience would reach dark places of mental and physical anguish.  If I spoke to someone who hadn’t eaten in 48 to 72 hours – I wouldn’t say, “I know how you feel” because I missed breakfast yesterday.  

For me, sleepiness is like starvation.  When I feel as if I