I’m a Narcoleptic, AMA 🥳
I’m a Narcoleptic, AMA 🥳
I have been narcoleptic since high school. I was only diagnosed with it 8 years ago (I am ~40), so I actually lived with it for around ~15 years undiagnosed. In that time, I graduated high school, college, and went into a career.
So, with the preliminaries out of the way, and in a effort to contribute to the AMA comm:
AMA
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When was the last time you drove a motor vehicle?
I only really ask because I had an episode of syncope (which is the manly way to say I fainted) in 2020. When I finally got in to see a neurologist, he was very concerned that nobody else (my GP or cardiologist, for instance) had told me not to drive until either we had an explanation why the syncope and a reasonable expectation it wouldn't happen again unexpectedly, or 6 months had passed without an episode.
I'm only guessing that you don't and/or can't drive, but it would make sense.
I actually am at a level where, as long as I’m medicated, and I’ve gotten enough sleep, I’m fine to drive in most circumstances. I also know my triggers (what makes me feels sleepy), limits (how far can I go, etc), and tells (how I know the sleep attack is oncoming). I also have techniques for undoing my triggers (cold air, for example), and also ways to stimulate the part of my brain that controls that sleepy feeling.
However, when I was diagnosed, my doctor did not tell me that and he well should have because I was not safe and it was a fucking wonder I didn’t kill myself or others. People said I had a guardian angel, but I think it was really just my conscious mind keeping me me from crashing in between struggling against the sleep demon.
Good to hear you're able to drive! Fortunately I didn't have any syncope after that one time, but I do sometimes feel symptoms that might be syncope coming on. And if I get that while driving, I always pull over somewhere and do the machinations to fix it.
Yeah, driving is pretty essential where I live. It sounds like you have coping mechanisms too. So what causes syncope?
"Dysautonomia." Which my doctor hasn't stuck his neck out so far as to say was from COVID, but it was. Heh.
I was an "early adopter" of COVID, so there weren't tests yet when I started having symptoms, so I guess take it with a grain of salt because I don't have a positive test result. But all the weird symptoms I had match up with COVID -- though to be fair it's really wild the range of different things COVID can do to you -- and there were visitors from the London office at my workplace just a few weeks before I had that syncope and subsequently got long-term sick. (I'm in the U.S.)
though to be fair it's really wild the range of different things COVID can do to you
My mom still has problems with brain fog and her sense of taste after having COVID.
Dysautonomia
Wow, that sounds like the disease you have when something’s wrong with your brain and they don’t know what.
Most people with narcolepsy can still drive.