Narcolepsy is weird but I didn't notice

My brother has narcolepsy. It is interesting how it presents itself in different people. I have never seen my brother fall asleep while occupied with something (walking, talking...) but I have seen him fall asleep so many times when he is not. The moment he gets in a car and it starts driving he falls asleep and very deeply. He would fall asleep in class all the time. The first time i really saw his narcolepsy expressed was during a daytime dinner. He had just had a big meal and while we were all sitting and talking, he just kinda nodded off.

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.

I have some of those minor symptoms.

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.

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.

> That particular symptom is called cataplexy, and it's my chief narcoleptic symptom. You lose control of your muscles, either in part of your body or in all of it, and then you can't move for a while. Your mouth and face require muscles to move, so if they're undergoing cataplexy you won't be able to use those either

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

> The effect is pretty mild and the effect usually only happens when I'm in bed and drifting off towards sleep. A few minutes before I'm fully out, while I can still hear and see everything going on around me, I'll start to dream. The dream can be either vivid or fuzzy, but it plays out in just the same manner as when I'm asleep, just kind of superimposed upon my normal waking senses

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.

As a narcoleptic I wish that the diagnosis was more accurate, or at least that the insurance companies were more holistic in their coverage of medication. The multiple sleep latency test hardly qualifies as science and has a terrible false negative rate. It’s also expensive so insurance is reluctant to cover it in the first place, and outright hostile to a second attempt.

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.

Tangential: The story of the discovery of the cause of Narcolepsy is fascinating [1], [2], [3]

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...

(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.

I used to have common sleep paralysis which sounds like the author's experience (sans the "demon", which definitely sounds like an improvement). I don't really remember if I could feel or not. A method I learned online (I've since forgotten where) that works even better than the finger-wiggling method is to try to hyperventilate through just your nose. Not sure exactly what's going on but I have a guess it's tricking your brain into thinking you can't breathe and so it wakes you up quick.

The excessive day time sleepiness (not the Cataplexy nor the sleep paralysis) aspect of Narcolepsy is bizarre and I think misunderstood. I was able with years of experimentation to control the fatigue. There are many variables so I wont go into it.

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.

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.

I hope there's serious research on this to find out if it works for everyone and if not, whether there are alternative strategies:

> 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.