Risla_Amahendir

As I understand it, current understandings of narcolepsy hold that cataplexy occurs when there is a complete or near-complete loss of the hypocretin neurons, but narcolepsy without cataplexy involves only partial loss of these neurons. As such, it stands to reason that for most patients the onset of cataplexy occurs after the onset of other symptoms. Perhaps it's not well known if that is the case, but do you know offhand if that's true?

I ask because in my own case, I developed cataplexy very early (possibly after a bad flu?)--I very clearly remember having it when I was four or five years old (eg I remember sitting on my bed thinking that everyone must drop things when they laugh. Not true, it turns out!) and it is pretty clear both from my own memories and outside reports that I have had it since then. However, I didn't obviously develop any of the other symptoms of narcolepsy (EDS, hallucinations until I was nineteen or twenty. This seems to run counter to the idea that all of my hypocretin neurons must have been lost by the time I developed cataplexy, since at that point other symptoms would have developed as well. Do you know if there are other attested cases like mine, and, if so, if there are any hypotheses about what is going on with this? It may be a factor that my case is clearly familial (my mother also has it [although her narcolepsy onset was pretty typical], as does some aunt or uncle on her side that I never met).

Weird question: is there anything you're angry about?

Yeah, I definitely hear you on that. Unfortunately, this is stuff that occasionally makes people faint, and since people are categorically terrible about believing people when they talk about their medical conditions, they assume that our cataplexy, which is a very specific and distinctive thing, is the same thing as fainting even though they're really very different.

Yeah, sleep apnea is much more likely to cause the stereotypical "narcolepsy" symptoms than narcolepsy is; as you almost certainly know, basically nobody with narcolepsy actually falls asleep randomly, we are merely beset by sleep attacks that make you feel like your brain is melting and we get cataplexy (which I suspect is the source of the stereotypes).

Whoa, I've never met anyone else with the same disgust trigger! That's the worst one for me; I once "fainted" as a child (I was awake the whole time, just paralyzed) when my mom had to have her blood drawn, and I can never take notes in my classes when we're covering brain functions (I'm a linguistics student) because I can't even move my hands to pick up my pen. I've taken to referring to the specific emotional state that causes that kind of cataplexy as 'squeamishness', since, like you, it is specifically triggered by anatomical stuff and not other varieties of disgust.

School is still a struggle for me, I'm afraid, but I have so far managed to maintain a relatively high GPA and grad school is still in my sights, so I guess it is at least not so overwhelming as to interfere with my goals.

Well, the existence of a seven-year age gap (I'm 23) seems to make twinhood a bit implausible, aside from some weird time travel scenarios. :p

But there are certainly a lot of weird cultural attitudes going on that affect people with similar afflictions similarly, so I am not remotely surprised that you've encountered the same things I have; this just points to the existence of systemic ways in which people with assorted medical conditions are disbelieved, rather than individual quirks on the parts of everyone who thinks they know better than us.