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Narcolepsy is weird but I didn't notice

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Re: Narcolepsy is weird but I didn't notice

#81

Post by crooked-v »

MrJagil wrote: post #19

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 expres…

> but figured he was just tired like all young, growing boys.

I feel like this assumption, at least in the US, is more of a failure of our school system than anything else. There have even been studies that show that teenagers have natural rhythms hours later than the 8 AM start times.

Re: Narcolepsy is weird but I didn't notice

#82

Post by sudosteph »

munchler wrote: post #61

> 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. This happens to me often, but I've never thought of it as a symptom of anything. In fact, when I'm…

+1 here, no narcolepsy diagnosis (do have sleep apnea though), but I also have that exact same awake-dreaming experience semi-frequently, or at least enough that it's not distressing to me for the most part. I also assumed this was a universal sleep experience.

I do vividly remember one experience though, I was riding the bus to high school. It was a very long ride very early in the morning and I started to fall asleep. My head was doing the thing where it would droop suddenly from tiredness. Usually the feeling of suddenly falling like that would wake me up a little and I'd snap my chin back up, but this time I guess I was extra tired so my head stayed drooped down and I continued drifting asleep while mostly upright on the bus. The dreams started, but in one part of the dream I heard someone call my name. I immediately became fully awake again, because I was aware I was on the bus the whole time and had thought someone had called to me and I might need to respond. But there was nobody behind me. Freaked me out a little because I wondered if that was a hallucination, but everything about it just felt like falling asleep. I get hypnic jerks a lot too, so I am used to suddenly coming back out sleep halfway through, and about half the time that happens I can remember bits of dreaming.

Re: Narcolepsy is weird but I didn't notice

#83

Post by onemoresoop »

comboy wrote: post #70
lisper wrote: post #21

Earlier quoted context omitted.

Heh, I often fall asleep reading technical papers. I always thought that was normal, but now, hearing all this, I'm starting to wonder. Maybe narcolepsy is another spectrum disorder.

I have some books that I use as melatonin.

Me too but also use some youtube channels, eg. Monotone voices do that for me as well

Re: Narcolepsy is weird but I didn't notice

#84

Post by dooglius »

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.

Re: Narcolepsy is weird but I didn't notice

#85

Post by MaKey »

RevEng wrote: post #9

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, o…

Did you try not eating late in the evening (= after 6 pm)? In my youth I often felt tired and stapled to the bed in the morning, barely being able to move. The sleep wasn't restful and I always had weird dreams. Turns out that it was due to a combination of eating late and having (then unknown) food intolerances.

I realize your symptoms are different and probably not eating late won't change anything for you, but for the slim chance that it does I wanted to share my experience anyways.

Re: Narcolepsy is weird but I didn't notice

#86

Post by _the_inflator »

larsiusprime wrote: post #66
exhypothesi wrote: post #32

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]…

(author here) Wait, we finally know the cause now? When did this happen? How did I miss this!!! How definitive is this finding?

You didn’t know? Baffles me, but here is a link to E. Mignot. He alone is instrumental to the understanding of N. I expect him to receive the Noble Prize soon.

https://en.wikipedia.org/wiki/Emmanuel_Mignot

He shares extremely deep insights and latest state of the art information on N in layman terms on YouTube.

Simply enter his name and enjoy his latest talks from 2023 and 2024 from the Wake up conference.

He discovered the mechanism behind N. And there is hope for a causal treatment for N1.

Re: Narcolepsy is weird but I didn't notice

#87

Post by amavect »

duncancarroll wrote: post #77
RevEng wrote: post #9

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, o…

For what it's worth, I've had some success treating my Long Covid symptoms with a specific form of Tryptophan found in Hydrolyzed Whey Protein (a standard bodybuilding protein powder.) You can get it OTC from Amazon [1]. My symptoms are slightly different from yours but sound close enough. A recent study showed that persistent viral infection can block normal tryptophan receptors [2] which causes a diminished ability…

I just read through the study. I corroborate your summary.

> The tryptophan found in hydrolyzed whey binds to a different receptor than normal dietary tryptophan, thereby allowing your body to reuptake it and produce serotonin as usual. (This is all in the study.)

Took me a bit to find the quote.

> If tryptophan uptake was abrogated by poly(I:C) treatment, tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B0AT1 and enables tryptophan uptake via dipeptide transporters.33 This diet compensated for impaired uptake in poly(I:C)-treated mice and led to an increase in both tryptophan and serotonin levels in systemic circulation

Now I need to ensure that whey protein contains some glycyl-L-tryptophan. The study used a lab rat diet "TD.210749" (unsearchable, maybe a custom diet) from Envigo/Inotiv. The citation used pure glycyl-L-tryptophan "G0144" from TCI Europe (~$100/g haha nope).

I can't find anything on glycyl-L-tryptophan content in hydrolyzed whey (maybe you can help?), but found one on other tryptophan dipeptides, alanyl-tryptophan and tryptophanyl-tryptophan. The ACE receptor inhibition seems relevant, too. The PepT 1 protein appears to transport the dipeptides.

"Selective release of ACE-inhibiting tryptophan-containing dipeptides from food proteins by enzymatic hydrolysis" Diana Lunow et al. - https://doi.org/10.1007/s00217-013-2014-x

I'll try this out for my early waking insomnia, mildly reduced energy, and digestive problems (started after I got Covid, almost exactly 2 years ago). I need to find one without artificial sweeteners (hate the taste). I'll report back in exactly 2 weeks (sets calendar).

Re: Narcolepsy is weird but I didn't notice

#88

Post by fallingknife »

throwaway284534 wrote: post #34

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…

Unless your condition is obvious or catastrophic, you're SOL with doctors. If they do not immediately know the diagnosis they either guess or decide you are just a complainer. Your description of symptoms means nothing. They do not research anything if they do not know it immediately. I have narcolepsy and was able to diagnose myself off Google after every doctor had failed. I finally went to a sleep specialist at Stanford and he confirmed with testing.

Re: Narcolepsy is weird but I didn't notice

#89

Post by fallingknife »

morjom wrote: post #2

(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 d…

Nobody is born with it. The condition is auto immune. Also it's not exactly the lucid dreams that make you feel tired. It's the lack of deeper cycles of sleep.

What do you mean that the cataplexy is a side effect of medication? Did you not experience it before treatment? And which medication causes it for you?

Re: Narcolepsy is weird but I didn't notice

#90

Post by dlandis »

> 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??

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