Zombie Research Institute
Personal observations of myself and other zombies I know.
Narcolepsy isn't what you imagine. Only a fraction of us have full-on collapsing cataplexy. You can more easily find us sleeping at our desks in the afternoon. (Gluten for breakfast starts the process, gluten for lunch clogs everything up.) Sleep attacks are just like real naps only more so because your orexin levels dip lower. And it's sinister because it's cumulative- you become sleepier as you age.
The main symptoms of narcolepsy are an irresistable urge to sleep and quick onset of REM. If you fall asleep sitting up and have dreams during short naps - you're probably overdosing your orexin system and having narcoleptic attacks. (see this video)
I'm pretty sure most narcoleptics are diagnosed with something else. Mostly alcoholism, depression and bipolar. Almost all of us report a variation of this frustrating experience with the medical profession. The hallucinators get labeled psychotic. Try to navigate your way out of that. "Yes I am depressed, having panic attacks and seeing purple chickens, but other than that I don't feel crazy." Ha.
I also believe the converse is true- that most alcoholism, depression and bipolar is misdiagnosed narcolepsy.
As far as my narcolepsy, I never really had stress induced sleep attacks. In high-stress situations I get paralyzed and incapable of movement, but don't collapse or sleep. I remember my parents screaming at me "What is wrong with you? Why aren't you saying anything?" when we were fighting during high school. (By the way, the answer is I'm having a panic attack and you're not helping.) I always panicked when speaking in front of an audience and my vision constricted until I couldn't see.
My nap attacks are definitely meal related. About an hour after eating gluten. This was very apparent when I cheated on the Atkins diet. I always felt like I was being anesthetized. Just fading away against my will. I could always feel my attacks coming- would get nauseous and find a place to sit, although usually I already sat at a desk in the afternoons. I had fluttery eyelids, loss of muscle control and sleep paralysis during classes, meetings and conversations if I couldn't make an excuse to get away. I did almost fall asleep driving a few times (after lunch parties at work, go figure, cake was involved.), but I smoke when I drive so usually I was okay.
I did have recurring dreams about cataplexy though. Falling asleep at the wheel of a car. That was disturbing.
I had lots of recurring dreams. One of them for over 20 years.
I also had a very specific visual experience while falling asleep. Kind of a psychedelic screensaver in black and sepia with a bright yellow/white center. I would have rings of light and dark that would start from the outside and move towards the middle. Like the ripples of a pond in reverse. The pattern would change depending on my drug status. Like on Ritalin I got the intersection of two ripple patterns but no centers. Very strange.
(I am now convinced this is a manifestation of an
inflamed trigeminal nerve, like a migraine aura.)
I was always cold
to the touch. If I covered my feet and legs, I would fall
asleep. When we argued my husband used to threaten to put a blanket
What I suspect happened to me is I killed off enough orexin cells that the leftover antibodies floated around for 10 years until they clogged up my cortex too. Yes, I was already way past narcolepsy when the doctor told me it doesn't progress...
(Actually the dementia is probably caused by excessive insulin in the brain, but it is still a predictable outcome.)
The dementia I had was really deviously comforting. Way better than obsession. I couldn't remember that I couldn't remember anything. It was impossible to worry because I'd forget what was bothering me. I really didn't mind that the grocery store was completely foreign to me. It was kind of like a scavenger hunt. Never knew what I might find. My big issue was I couldn't drive. That was a constant impediment.
This is how I described my condition at the time:
My startle response was out of control. Even when my husband would drive I was incredibly nervous. It was really bad at night, the headlights and taillights would make distances hard to judge and I always thought a collision was imminent. I constantly made that gaspy air-sucking sound that makes drivers crazy.
After about a week on the gluten-free diet my internal voice/narrative restarted. I didn't even notice it was gone.
It's been ruminating about gluten and orexin ever since. Go figure.
I do not recall having any complex visual hallucinations while awake. Not even at my sickest. But hallucinations are signs of REM switchover dysfunction and I had those symptoms very,very young and maybe I didn't know the difference. I started sleepwalking at age 5.
Part 2: My Affective disorders