Steve Hutchison (foomf) wrote,
Steve Hutchison

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Got a picture up so now I have an image to go with my babblings.

No, the purple image isn't because I'm normally that color in reality.
It's more that it was the best color for hiding the annoyingly patchy skin tone that's come along with a mild case of eczema. Or lupus. Whatever it is, it's an auto immune disease, and the price of being a member of my mother's family. We've all got hyperactive immune systems.
In my case it's not become deadly allergies to bees, or wasps, or cats, roses or strawberries (my mom is allergic to anything she really likes). Rather, it took the form of my immune system attacking the cells in my brainstem that make hypocretin.
The result is Narcolepsy. I've apparently had it most of my life, and it's hereditary.

Another thing for the mom's side of the family to deny and pretend isnt there, like the Gout that we've all had but nobody bothered to admit to having.
"Oh, that's just a sprained toe. Oh, yeah, well it could be gout. Runs in the family."

Grandma has it. Mom has signs of it. Even my uncles had. Cherie seems not to, but she has her own set of problems.

Narcolepsy in a nutshell. Lacking a sleep latency test, any of four factors with no specific nerve damage or other pathology to explain it away:
1) Excessive daytime sleepiness even when not sleep deprived. Difficulty sleeping at night is optional, but frequent, as you get very used to being tired and develop the capacity for overdriving past it, ignoring the 'sleep' signals.
2) Cataplexy. This is when the 'REM' circuit breaker kicks in. The body goes limp. This usually happens when falling asleep, it's not unheard of with non-narcoleptics. The common name is 'night terrors' and it usually involves creepy dreams of beings stepped on or sat on by evil entities. The common image of narcoleptics, laughing or getting excited and falling asleep, like the Argentinian in Moulin Rouge, comes from that fairly common version of the disorder.
3) Third common symptom is when you have dream imagery intruding on waking time. I, for instance, am usually dreaming. It's normally 'in the back of my head' where I can ignore it, but I can tell it's there. Some people also get hallucinations during their waking hours, others are awakened by dreaming loud noises or conversations.

I've had the EDS (symptom 1) for almost forever.
I've had the REM stuff in the back of my head for almost forever.
I didn't know it, but I've also had the cataplexy - because I'll find myself distracted or in a conversation and I'll drop a fork, out of nowhere. I'll get really really angry, and I'll be shaking, but instead of getting stronger, I feel terribly weak, as if I were being tickled.

The clincher, though, was the Sleep Latency test. Did this a few years ago. Had EEG leads glued to my head, and had to go to sleep at 10pm. They verified that I didn't have sleep apnea (actually had only 4 apneas during the night, as opposed to the appx . 14 most people have in a night, and all were quite short. And, my oxygenation actually increased as I slept rather than decreasing.
The clincher was the amount of time I didn't spend in Delta wave sleep, and then the next day... every two hours they ask you to take a nap for 20 minutes and time how long it takes you to fall asleep. Normally people can't do it easily. It takes 10-15 minutes to fall asleep, and then they go into an abbreviated normal sleep pattern.
I, however, took on average 10-30 seconds, discounting the longest one of 2 minutes. And I went almost immediately into REM, each time.

All this for an auto-immune reaction. In the words of Nero Wolfe, "Fooey!"

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