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
What did you think of Rowan Atkinson’s portrayal of your condition in that remake of rat race?
I would not have fallen asleep while running, I would not have been able to stand up straight while asleep, and I would not have been that awake when I did wake up.
And, while where here, most media portrayals of narcolepsy are not accurate, but I am also not offended at my disorder being played as a joke. However, I’ve never actually watched the whole of Rat Race or Duce Biggalo or any other movies portraying narcoleptics so maybe that had something to do with it.
Spoilers
spoiler
character falls asleep standing up feet away from the prize
So, sounds like not accurate
Yeah, for real. I don’t know if you read what I wrote in another response, but one of the factors that affect me having a sleep attack is the amount of stimulation, and that would be enough endorphins to keep me awake. Now, if I’m not medicated, the cataplexy (weakness in the limbs that comes with my form of N) might get me because of extreme emotions.
Are you asleep right now?
No, if I were actually having a “sleep attack” right now, my text would look like:
Great quennfcvlp cd pains jxpspjhmd
how does this affect how/where you work or gain an income?
Being medicated has been enough to keep me functional. Except for when I’m stressed, didn’t get enough sleep (like coming home late from a recent trip and having to wake up for work in the morning), or when the conditions are just right, I am pretty much “sleep attack” free.
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.
What do they prescribe for this? Stimulants?
Does something set you off? (e.g. getting excited)
What do they prescribe for this? Stimulants?
Stimulants: amphetamines in the morning, and a strong sedative for night time. I am actually taking a lot less amphetamines since losing more weight and getting healthier. I recently started the sedative, which allows me to take even less by making me sleep longer. Narcoleptics go into REM too fast, which means their sleep cycle is over quick, and it goes quickly past the deep sleep stage, which is really beneficial to the body (and negative to get less of it like a narcoleptic does).
Edit: sorry I missed your second question!
Does something set you off? (e.g. getting excited)
I’m nervous talking to people I’m not close with (co-workers), and it happened a couple of times when I was talking to them, and a couple times laughing, but that is just the cataplexy (weakness in the limbs).
My sleep attacks aren’t triggered by emotions but amount of sleep, amount of stimulation, and environmental factors. These three are like a triangle chart and if any two of them are low (or too much in the case of environmental factors), or any one is extremely low without others compensating with high levels, that is what triggers me. And as I said in another comment, I can do things like manipulate my environment (colder temps, more stimulation) to compensate as well.
Is sleep hygiene important in your life? For example, you watch youtube videos close to bedtime?
It probably is, and fixing my poor sleep hygiene would get me better sleep, but I am sleeping enough and medicated enough to get by. However, as it becomes winter where I am, I have to be more careful. I definitely have to get 8+ hours in bed, though.
