Narcolepsy Update: My Current Blend Of Days And Nights

I was awake for four hours last night, from 2 AM to 6 AM. This is fairly typical. It's usually when I see the sun start to peek in around the curtains that I'm able to drift off again. Now it's early afternoon. I've done a bit of laundry, read a few posts on Steemit, left a few comments, folded some laundry and done a sinkful of dishes. Whew! I've been awake for nearly four hours and it's time for my first nap.

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Grandpa getting sleepy. He was a dedicated napper as well.

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These naps can be complete adventures. REM sleep sets in while I'm still marginally awake. When I start hearing voices and having thoughts that seem to come "from outside" I know it's time to lie down. Eventually I might settle into a pocket of true, deep sleep, but these blackout periods are mixed with hallucinations that can feel like they go on for hours and days. Time distorts with all the fluidity of a heavy drug trip. The naps usually end with a prolonged period of sleep paralysis, where I desperately feel like I need to get up but I'm unable to move my body. Turning to face the clock is a Herculean task, but I'm desperate to know: what time is it? How much have I missed? Eventually I'm able to kick my legs a little and turn my head.

I might have slept as little as 20 minutes, or as much as three hours. But it always feels like I'm waking into a different world from the one where I fell asleep. And it takes a few hours to shake off the nap-hangover, too.

A couple things that I've learned about narcolepsy really made this condition start to make sense:

First, there is a hormone called hypocretin (or orexin) which regulates alertness. Narcoleptics seem to lack the cells that produce this hormone, or have suffered damage to those cells. The jury's out on whether this is a genetic condition or the result of an autoimmune attack. Either way, the results are the same. A narcoleptic's brain typically contains as little hypocretin as a normal brain has after going 48 to 72 hours without sleep.

I could never understand how my friends could pull an all-nighter, and I've never stayed up all night myself. It's because I always feel as if I've gone two to three nights without sleep already. I feel this way as soon as I get up in the morning.

Second, being narcoleptic doesn't mean that we're sleeping all the time. It means that the sleep we have is scattered. Where a "normal" person gets to consolidate their sleep between 11 PM and 7 AM, say, and then have the rest of the day to work and function, the narcoleptic brain jumps back and forth several times in a 24 hours cycle. Worse, narcoleptic sleep starts with that REM sleep and contains a lot more of it. And REM sleep is not restful sleep.

The chart below is the best graphic example I've ever found of this comparison.

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Image Credit

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I treasure my pockets of true alertness. On a good day I might get a few. 10 AM to noon is pretty sharp, and 8 PM to 11 PM, and that 3 AM to 6 AM window where I get most of my reading done. These are like sparkling little islands scattered across grey seas of foggy hallucination. Looking back at the jobs I've had, it's hard to understand how I held them for so long.

Sometimes I'll try to skip the naps, but they always come for me in the end. Several times I've had the experience of writing a piece at the computer, blinking, and discovering the clock at the bottom of the screen has advanced several hours. And then it turns out the work I thought I did was part of the dream.

I've held off medicating for a few reasons. First, going through the American medical-industrial complex would cost a fortune: preliminary checkups, specailists, sleep studies, etc. Even when I did have insurance, the deductibles and co-pays would have added up to thousands of dollars. All this to obtain a prescription for Methamphetamine (meth!) or Modafinil, a drug the military uses to keep their fighter pilots awake, at up to $800 for a month's supply. Even if I had the money or the insurance to afford these chemicals, I'm not sure I'd want to become dependent on them.

Coffee gets me going in the morning but for some reason alcohol is the only thing that perks me up in the evening, but I try not to rely too heavily on that because I suspect it makes the whole cycle worse. (Sleep hangovers are bad enough without booze hangovers to go with them.) Pipe tobacco is good for a low-level boost in concentration when I need it, as well.

Meanwhile I'm grateful to have built a life where I can survive on a handful of alert hours every day, at least for the time being. It's a shame I never got to live my dream of being a commercial pilot, but the dreams I do have are pretty wild in their own way.

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My previous posts on Narcolepsy:

Sleep Attacks And The Many Faces of Narcolepsy was one of my earliest posts, with a couple links to more information at the bottom.

Nap Spotting For Narcoleptics And Those Who Love Them is a more lighthearted take on some of the sleep experiences we undergo.

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Falling Asleep is another great resource on narcolepsy and sleep disorders.