Saturday, March 17, 2012

D is for Dyssomnia

I waltz in a fog, never fully awake, never fully asleep.  I taste sounds and hope the walls don't cave in.
Narcolepsy is life in dreamtime, never fully awake and never fully asleep, coasting through a fog broken by scattered lanterns of full awareness.  A narcoleptic can dream while pretending to be awake.  She can carry on conversations and complete tasks, but her mind fades in and out of the mist of REM sleep.

Excessive sleepiness can overtake her at regular intervals or at random.  She will be alert and suddenly crash.  This does not mean that she falls asleep in her soup, but instead that she becomes so fatigued that she can no longer function normally.  She may need to lie down, or she may go through periods of automatic behavior and not remember how she got from one minute to the next.

If she has cataplexy as a symptom (and not all narcoleptics do), she is careful to guard her emotions.  Laughing, crying, anger, or fear trigger her muscles to respond with anything from dropping whatever is in her hand or a knee giving out to a total body collapse.  She laughs and drops her glass or stumbles on the sidewalk.  She ends up on the floor, surrounded by people who can't figure out what just happened.

Sometimes the narcoleptic swings wildly between excessive sleepiness and insomnia.  The cycles can last for weeks or months at a time.  During insomnia phases, she is alert and productive, but often gets less than four hours of sleep a night no matter what she does.  After a while, the exhaustion phase takes over and she feels the overwhelming urge to sleep as much as possible.  She is too fatigued to function normally so has to force herself to stay awake and accomplish what she needs to.

For most people with narcolepsy, the scariest symptoms are sleep paralysis and hypnogogic hallucinations.  Walls and furniture come alive, floating heads bob around the room, insects crawl through cracks in the ceiling.  The narcoleptic tries to escape, but her body is frozen.  This can happen either on the onset of sleep or upon waking.  The hallucinations very occasionally strike outside of a sleep attack, when the brain slips into REM while the narcoleptic is otherwise awake.

I was diagnosed with narcolepsy ten years ago following a sleep study.  I was in college, and ended up needing to use the university disability support to make it through some of my classes.  Medications ended up either not working well enough or causing severe side effects, so I no longer take them.  My narcolepsy seems to foster heightened creativity, and I have extremely vivid dreams.  I gave my primary protagonist, Sevilen Achara, narcolepsy so I could describe its symptoms properly after seeing so many inaccurate portrayals in entertainment.  It is a life-altering disorder, but not a life-destroying one.

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