Narcolepsy and what it feels like

I’m sharing this because I have suffered from narcolepsy since high school or even before then, and while sleeping is often seen as desirable, for me it has forever been a huge problem, as described in this interview. When I was first tested for narcolepsy they did not have the more sophisticated tests they use now, but in one short “sleep EEG” I experienced every one if the narcolepsy symptoms except cataplexy. Oddly enough, or perhaps not so, I only “melt” to the floor when I belly laugh… but it’s also a “reliable” or at least predictable occurrence. In medical school, when we were joking around and I burst out laughing, I would literally find myself in a heap on the floor, while everyone else remained standing. I did not at the time understand why everyone did not collapse when laughing…It gives literal meaning to the acronym, ROFL, except that I cannot roll, only lie there in sudden weakness. 

I have experienced so much of what ”Claire” describes in this interview, like dreaming before I fall asleep and confusing my dreams with reality. In fact, I frequently have to ask myself, was such and such real, a memory of something that really happened, or did I just dream it? But I have no way of knowing, except by virtue of having to ask myself that question, which usually means that whatever it is was in fact only a dream. Anyhow, this is a long preface to an informative if casual interview. I hope you read it. Please feel free to ask me questions as there is not an ability to comment on the article itself. The second article is about a newer narcolepsy drug, which I have also taken.

https://www.vice.com/en_us/article/pg9zgk/what-its-like-to-have-narcolepsy-and-go-through-life-tired-af

https://www.vice.com/amp/en_us/article/xd7k8n/i-take-nine-grams-of-ghb-every-night-to-treat-my-narcolepsy-882

4 thoughts on “Narcolepsy and what it feels like”

  1. Unfortunately I can’t read the article. Firefox is blocking it for some reason. When I had severe insomnia for what was then unknown reasons, I never, ever dreamed and I honestly don’t remember ever sleeping. I dozed only, and was always conscious of what went on around me. My first dream was a joy. I sleep eight hours now, and I don’t get that constant, nagging exhaustion I used to have.

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  2. and damnit, the last bit too! I never want to go to bed, always want to be asleep on my feet before I even try, and I’ve always hated waking up, hated both transitions. Transitions generally – once I found weed, I hated GETTING high and I hated straightening up, just liked BEING high – so being chronic was irresistible, as few changes as possible. I think all potheads will tell you it’s a sea anchor, slows the waves, keeps you steady.

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  3. can’t read far and I got that too! I’ve had nightmares that don’t stop just because you woke up and I can’t go back to sleep because it’s straight back to it, seems like the whole night if it’s not really. One these last few years is drifting off to sleep and then suddenly panicking that I’m drifting off to sleep behind the wheel! And waking up terrified

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  4. I’ve had some of those things, like once, a definite childhood sleep paralysis incident, classic one, I understand, and also being awake, working at a concentrated but tedious task, terminating telephone cables onto blocks when I noticed a dream going on, some scene, me and other folks – was I chasing a girl? – in the jungle, running through a forest of skinny trees, like bamboo. Sleep apnea also has you falling asleep whenever you’re supposed to sit quietly, THAT I had going on for years. Not finished yet, back to it

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