(N1 over here aswell! Although mine came from some unfortunate circumstances rather than from birth )
Pleasantly surprised to find an article/blog on narcolepsy on HN.
All of the described experiences sound familiar, except the vivid dreaming while awake. Sleep paralysis, been there, always having dreams when asleep, yup (although for me MOST dreams are also lucid, which can get kind of get tiring, as I feel like I don't get as good of a rest.)
Cataplexy is a side thought now aswell, thanks to medication.
What's "normal"? I don't start dreaming as I fall asleep. Well I might, but I don't remember. I either have "racing mind" and can't actually get to sleep or I ... just fall asleep.
On the other end though I sometimes wake up in a state where I sort of seem to know I'm awake but not really awake yet. I guess that's still dreaming. Sometimes I try to control the dream but it often fails because I actually move my real body and I wake up and I have that "daaang, I wanted to keep dreaming" sensation. But then it's too late.
However, as hard as I try, I can't remember more than the fact that I was in that state even just hours later, never mind now. Except for very few times. Like I still have one specific split second memory of a nightmare I had when I was a kid (like 30 years ago) and woke up from it. But I can't remember anything but some sort of vague "brown paper lunch box head monster" thing.
You might experience mind-wandering "dreams" while in shallow sleep, but they're not true dreams, and this stage is a brief transitory stage into NREM sleep, during which no dreams happen.
I can't speak for normal, only what I experience. In my experience, I rest and close my eyes. Scene change. There may or may not be dreams remembered, and then I wake up.
.. definitely not for me. I just descend into progressive unconsciousness, dreaming starts way later when I'm already out cold for an hour. Not once have they started when I was falling asleep
This is fascinating. Three years ago, after recovering from COVID, along with many long haul symptoms I developed several similar to but still distinct from narcolepsy. Even now as the CFS-like symptoms have mostly faded, the narcoleptic symptoms are still present. Unfortunately I've not been able to get a positive diagnosis of any sort because it's atypical.
There are two main symptoms I experience. First is that, often without any clear provocation, I will become very fatigued and weak. This usually occurs over about 20 minutes, but the initial onset is a distinct event I've come to recognize. It gives many of those same long COVID symptoms: brain fog and drowsiness, weakness to the point of struggling to stand up or keep my head up, uncoordinated movements, and a feeling like I've been up all night and I desperately need to sleep. This often subsides after an hour or two, but it may last several hours.
The second which is perhaps just a more extreme case of the first is a complete inability to wake up. I may be slightly aroused and fade in and out of consciousness, but I have no ability to control this. I typically cannot move during this: everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head. Depending on how conscious I am at any moment, I may realize I'm in this situation, or I might imagine that I'm just really tired or depressed and that's why I can't move. These episodes tend to last many hours, often 8 or more. They can happen as an extension of my random bouts of sleepiness, but often they occur as an extension of my normal sleep, resulting in me not being able to wake up - even when physically aroused by someone else - until well into the evening.
In both cases the sleep is not restful. Instead I often feel it come on again a few hours later, though less extreme.
I'm not diagnosed, but I always have REM before falling asleep. It's how I know I'm about to call sleep when laying in bed. I love the visualizations before bed.
I also routinely take 10m nap between 10-12 every day. Always hit REM then too.
Interestingly enough, in the movie Kill Bill: Vol 1, The Bride (Uma Thurman) does a similar thing as the author does to get out of the cataplectic attack: wiggle her big toe.
Pleasantly surprised to find an article/blog on narcolepsy on HN.
All of the described experiences sound familiar, except the vivid dreaming while awake. Sleep paralysis, been there, always having dreams when asleep, yup (although for me MOST dreams are also lucid, which can get kind of get tiring, as I feel like I don't get as good of a rest.)
Cataplexy is a side thought now aswell, thanks to medication.
On the other end though I sometimes wake up in a state where I sort of seem to know I'm awake but not really awake yet. I guess that's still dreaming. Sometimes I try to control the dream but it often fails because I actually move my real body and I wake up and I have that "daaang, I wanted to keep dreaming" sensation. But then it's too late.
However, as hard as I try, I can't remember more than the fact that I was in that state even just hours later, never mind now. Except for very few times. Like I still have one specific split second memory of a nightmare I had when I was a kid (like 30 years ago) and woke up from it. But I can't remember anything but some sort of vague "brown paper lunch box head monster" thing.
There are two main symptoms I experience. First is that, often without any clear provocation, I will become very fatigued and weak. This usually occurs over about 20 minutes, but the initial onset is a distinct event I've come to recognize. It gives many of those same long COVID symptoms: brain fog and drowsiness, weakness to the point of struggling to stand up or keep my head up, uncoordinated movements, and a feeling like I've been up all night and I desperately need to sleep. This often subsides after an hour or two, but it may last several hours.
The second which is perhaps just a more extreme case of the first is a complete inability to wake up. I may be slightly aroused and fade in and out of consciousness, but I have no ability to control this. I typically cannot move during this: everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head. Depending on how conscious I am at any moment, I may realize I'm in this situation, or I might imagine that I'm just really tired or depressed and that's why I can't move. These episodes tend to last many hours, often 8 or more. They can happen as an extension of my random bouts of sleepiness, but often they occur as an extension of my normal sleep, resulting in me not being able to wake up - even when physically aroused by someone else - until well into the evening.
In both cases the sleep is not restful. Instead I often feel it come on again a few hours later, though less extreme.
I also routinely take 10m nap between 10-12 every day. Always hit REM then too.
Wonder if they’re related?