The sad part is he has felt quite embarrassed by all this growing up. These are not dangerous situations, but it just feels awkward for a teenager. He also talks and walk in his sleep. Even worse is that no one believed him when he suggested he might have narcolepsy. Our mom is a doctor but figured he was just tired like all young, growing boys. It took a brain scan to get it sorted.

He's been prescribed Ritalin or something similar, but manages without.

One thing I have experienced is lying in bed and being unable to move, and I can't tell why. it seems like I'm just not trying to move, which I think is the feeling that distinguishes it from paralysis.

What I have found is I can open my eyes and move them around. Through this I discovered an exercise that helps. If I focus on the ceiling in the far left side of the room then switch to focusing on the far right, after about 5 to 10 if those switches, the rest of my body can move without issues. Whatever it was that felt like I was just being lazy simply vanishes.

My brain is weirdly configured. I have had MRIs, catscans, ultrasounds on though my eye (which is as it sounds,close your eye, pour some goopvon it, then waggle a gadget over the goop)

Some of those were before I had Touretts like symptoms turn up. All I really know at this point is there isn't a tumor in there. I have a feeling some of my doctors would have placed money on finding one.

I also had a thing where they covered me in electrodes and timed how long it took me to fall asleep, then immediately woke me up again to repeat the process

Separately I was diagnosed with ADHD and put on methylphenidate only to find it had no effect on anything (was like taking nothing at all). Now on Dexamphetamine with some benefits.

The dramatic difference in how it feels to do something that previously seemed to require insurmountable effort has made me wonder if laziness is not actually a real thing. Those who have not experienced it may feel like you should just put your head down and do the task at hand, but the way the ability or inability to do that seems to switch on and off like a switch really doesn't make it seem like a factor of willpower.

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.

Any neurologist will tell you that your first night’s rest in a new location will be of a lower quality and depth than at your home. Despite knowing that, sleep studies are performed at the hospital in a room so uncomfortable that it makes the Holiday Inn feel like the Ritz. You’re then hooked up to a dozen different monitoring devices and asked to sleep in an uncomfortable bed with a camera observing your most vulnerable position. You should have no trouble falling asleep!

The second day is peppered with six attempts at napping within a short window, and if you enter REM within a threshold, you’re official diagnosed as narcoleptic. Otherwise you get a consolation prize of “idiopathic hypersomina” i.e. “sleepy person syndrome.” This methodology only selects for the most severe cases of narcolepsy, and as a result, allows insurance companies to gate-keep expensive medication.

I’ve read that a patient’s suspicion of narcolepsy and their final diagnosis is estimated around 8 to 15 years! IMO there is a subconscious characterization of known-unknown diseases as personal failing of the patient’s virtue. Convincing your parents, teachers, and doctors that you’re not just lazy is near impossible until the symptoms become too frequent to explain away. It also stands that doctors cannot be perceived as lacking critical information, therefore it is Not Allowed for their patients to be fatigued unless they’ve earned it, or put through the gauntlet that is our medical system.

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.

I absolutely don't have narcolepsy - quite the opposite, I tend towards insomnia unless I practice fairly strict sleep hygiene. But, this "symptom" is a common and enjoyable part of falling asleep to me. I think it's common for a lot of people, near sleep, to have a dreamlike state, and it's possible to make interesting connections that you wouldn't make while awake. Often, but far from always, nonsensical. Sometimes deeply meaningful. I've solved maths equations that I was stuck in this state, or rather, I've seen the final connection I was missing to be able to solve it. Salvador Dali was famous for using this technique to come up with ideas, taking a nap while holding something that would fall from his hand and wake him to aid in remembering the connections.

Far, far be it from me to tell someone that what they experience as a symptom of a disease isn't. But I don't think that this particular symptom is abnormal, or only experienced by narcoleptics, and I do think there's a risk for the sufferers of any disease, to attribute many of the weird, sometimes confusing parts of simply being a haphazardly evolved animal created by evolutionary pressure as aspects of their disease. As a migraine sufferer, I do that too with any headache or weird aura effect. But sometimes a headache is just a headache. Sometimes a dreamlike state is just a dreamlike state.

TL;DR: Narcolepsy is an autoimmune disorder caused by the destruction of the approximately 70,000 neurons that are responsible for producing the neurotransmitter orexin. [2]

A key piece of evidence was data analysis that showed a correlation between seasonal flu epidemic in China and subsequent new narcolepsy diagnoses. [1]

[1]: https://med.stanford.edu/news/all-news/2011/08/study-draws-c...

[2]: https://med.stanford.edu/news/all-news/2022/09/emmanuel-mign...

[3]: https://med.stanford.edu/content/dam/sm/narcolepsy/documents...

> Whenever you are in the throws of a cataplectic attack, lying motionless and completely helpless, focus all your energy into "finding" the tip of your index finger (either one will do). Now, just try to wiggle it around in a small circle. [--] The wrist and forearm will follow, then the whole arm, and soon you'll unlock the rest of your body.

This happens to me often, but I've never thought of it as a symptom of anything. In fact, when I'm just on the edge of sleeping, I can sometimes switch back and forth between "normal thinking" and "dream thinking". I often try to remember my dream thoughts when I switch back to normal mode, but it is nearly impossible - they evaporate or are somehow incompatible with normal thinking.

> whenever I'm asleep I always dream, and I start dreaming the instant I fall asleep

This happens to me frequently as well (but not "always") and is basically another aspect of the phenomenon described above.

The author also describes dreaming while awake, and specifically just before sleep. Surely this is something that happens to everyone, no? My mind goes crazy when I'm about to fall asleep, and that's how I normally know I'm going to be asleep in the next minute or two. Typically I'll start thinking about strange interconnected things and people, objects and voices will randomly appear in my consciousness. Is this honestly not normal? Isn't that just what happens when you drift off to sleep?

I too have a mixture of full narcolepsy and cataplexy attacks - but more cataplexy like the article.

I am conscious I just can’t move, I also feel a sinking feeling before it starts so I get just a few seconds warning which can help a little. My partner knows my distinctive “uh oh” I always utter before I leave for a bit.

When it happens I am in a new space and I see a new colour, it’s similar to purple but also with a lot of black mixed in, it’s not one solid colour but it morphed and swirls like those animated Gaussian noise functions. Initially it was scary but I feel like I know this place now, I can hear everyone, but I cannot move or respond or feel anything, I enjoy the serenity of being there now, it’s a little chill out zone, gifted to me.

I also dream while I’m awake, but I know it’s happening (visual and audio hallucinations) because the transitions are instant and very high res (it feels like reality, it’s never been blurry like the poster says) and since I know it’s a dream I have full control, I can modify it willingly (I enjoy adding waterfalls everywhere for some reason, and also moving about in a flying car) it’s not a conscious driven narrative I came to that conclusion because things still happen that surprise me or I mispredict events that then am able to understand why they happen with logic, which I think is very weird, my subconscious is able to build a dream so elaborate that it can surprise my consciousness with unexpected events? Isn’t that mind blowing?

It has a lot of downsides though, I can collapse any time without much warning, sometimes 1-2 seconds. it can happen during business meetings, crossing the street, balancing on places you really don’t want to fall, and no driving of course.

I take medication which helps a little but gives me terrible headaches and other unpleasant side effects.

This was the primary effect I got from theta wave binaural beats. Superimposed but at same time not easily accessible as a memory even though it was happening at the moment. Like with a regular dream once a bit of the dream was recalled the rest of it would come back to memory.

Still one experiment that seemed interesting was that a drop of Methelyne Blue reverted all fatigue (nearing a state of Narcoleptic slumber) but didnt work too well with continued experiments after a week or two.

What is bizarre is that its onset of action was ONE SECOND. That should tell you all you need to know, but this isnt medical advice.

I also routinely take 10m nap between 10-12 every day. Always hit REM then too.

What if he fell facedown on something like a blanket and couldn’t breathe??

Amazing, this is the exact method I found independently to escape sleep paralysis, which thankfully only happens before or after sleeping for me.

Wonder if they’re related?

But hallucinations while semi sleep are wild, idk if it is normal, i haven't really considered before

I knew they were dreams because they felt like dreams, yet they were happening at the wrong time. I actually thought I was going crazy and dying, so I didn’t tell anyone for a year or so. Haha.

Before it happened I would get sort of a cold sweat and—bizarrely—nauseating pain in my shoulders and elbows, then I’d fall into a chilling state of weakness or outright paralysis. I’d have a few moments to realize this awful thing was happening, then try to get myself into a sustainable position and tell whoever I was speaking to that I’d be incapacitated for a minute or two.

It felt absolutely awful. The pain in my bones was unbearable, and the visions I’d have would often give me nightmares later on.

One of the strange qualities of the dreams was that I’d often see “nothing” very vividly. Like looking into a black hole, but rather than seeing nothing, I could clearly perceive that absence. Much like you can feel the absence of heat as cold, I could sense the absence of light, but as much more than just “darkness”. It was a confusingly massive, horrifying, eternal thing that wanted to swallow everything around it.

One of the “nothings” I’d see was death itself, who would visit me only to terrify me and threaten me that it could take my family and friends away. Sometimes it would bring my dead friends to me.

Yep, I was pretty sure I was going insane. I’d try to snap out of it by screaming or running, but I couldn’t move or speak or anything. I can still recall all of it in what seems like vivid detail. I have some memories where I can tell my brain is doing some clever back-filling, but these ones seem to have a special place reserved. I suspect a lot of the dreams were traumatic (sometimes I’d shake and cry for a few minutes after because it seemed so real) and there’s some evidence that truly horrifying things really do stick around in clear detail, longer than typical memories.

For some reason it all pretty much stopped around age 25. I still get the odd sinking feeling and all the ensuing terror, but I don’t get as weak and no dreams come. The bone pains happen too, but it’s thankfully pretty mild.

Narcolepsy is definitely weird. I’m a bit surprised the author never realized it, haha. I had no idea I had ADHD until close to my 40s though, so maybe I shouldn’t be too surprised.