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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

#71

Post by nick__m »

Kathula wrote: post #51
RevEng wrote: post #44

Earlier quoted context omitted.

I was prescribed Modafinil, and while it did keep me from falling asleep, it didn't help with my wakefulness otherwise. When I had a serious crash, instead of sleeping through most of it, I would be awake through it all, with all the discomfort of the extreme fatigue and mental fog, but with no ability to fast forward time by sleeping through it. After a few months I decided it wasn't worth it. I'm on methylphenidate…

I'm not a regular poster here, so sorry if I don't follow the rules or etiquette correctly, but I gotta go to bat for Xyrem. I have Narcolepsy, so our situations aren't exactly identical, but it seems to me IH and Narcolepsy have a big overlap. First of all, the benefit of taking Xyrem is so, so big. It doesn't compare to any other medication or stimulant. You can get quality sleep at night. No more insomnia, lying a…

There are no reason, except greed, that explains why Xyrem is so expensive! It cost almost nothing to produce. It's an old simple molecule, GHB was know for it's restful sleep since at least the 90's and so was it's safety profile.

In a fair world the patent would be voided and it would not cost more than 20 dollars a month.

Re: Narcolepsy is weird but I didn't notice

#72

Post by bgnn »

almog wrote: post #15
tuukkah wrote: post #14

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…

I don't think I have narcolepsy but I discovered that whenever I have a really bad dream and I start to be aware of it being a dream, yet not able to gain control over my body and wake up, focusing moving just my fingers and squeezing my hands helpa me regain that control of my body and eventually wake up.

yeah I do squeeze my hands when I wake up with sleep paralysis too. It doesn't take long to gradually gain full control.

Re: Narcolepsy is weird but I didn't notice

#73

Post by bgnn »

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?

not a narcoleptic but I remember reading about this, particularly the narcolepsy cases after pandemrix vaccine (a flu vaccine) there was a stromng correlation between upper respiratory infections and narcolepsy. This wikipedia article has some links to these: https://en.m.wikipedia.org/wiki/Pandemrix

interesting to see several people here mentioned they got narcolepsy after this vaccine.

Re: Narcolepsy is weird but I didn't notice

#74

Post by almog »

bgnn wrote: post #72
almog wrote: post #15

Earlier quoted context omitted.

I don't think I have narcolepsy but I discovered that whenever I have a really bad dream and I start to be aware of it being a dream, yet not able to gain control over my body and wake up, focusing moving just my fingers and squeezing my hands helpa me regain that control of my body and eventually wake up.

yeah I do squeeze my hands when I wake up with sleep paralysis too. It doesn't take long to gradually gain full control.

Are you fully aware of your surrounding when that happens? That trick I mentioned works best for me when this annoying meta-dream of being sleeping/paralyzed in my dream (i.e. dreaming of being somewhere sleeping, usually around people and not being able to wake up to engage with them). I've often wondered if this is a sort of sleep paralysis or not because it doesn't quite fit neither what I read about sleep paralysis nor about false awakening but it's extremely annoying when that happen.

Re: Narcolepsy is weird but I didn't notice

#75

Post by greenavocado »

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…

Iron deficiency anemia

Re: Narcolepsy is weird but I didn't notice

#76

Post by kypro »

I've wondered if I've had some mild form of narcolepsy for a while now because I often get hit with a strong and sudden urge to sleep and will fall into a deep sleep rapidly if I'm sitting down. I don't remember this happening when I was younger, but it started happening more and more often in my 20s to the point I'd normally have at least one 20-30 min nap a day.

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?

Re: Narcolepsy is weird but I didn't notice

#77

Post by duncancarroll »

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 to synthesize serotonin, which it turns out is pretty essential for a lot of things including alertness & sleep, etc etc.

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.)

A word of warning: If you do this, take only a very small amount to start, maybe a quarter serving, because even though the body rate-limits serotonin production your tolerance will likely be extremely low from not having much for years. I didn't know this and I took a couple servings per day (after all, it's just protein powder right?) but by day two I was hypomanic which was unpleasant and it took about a week to return to normal. So start with maybe a quarter serving, wait a few days, and repeat until your serotonin normalizes.

Also DON'T TAKE THIS if you're on any medication that interacts with serotonin such as an antidepressant, SSRI, MAOI, or what-have-you. I am not a doctor and this is not medical advice, just something that helped me after many years of difficulty.

[1] https://www.amazon.com/dp/B002QZORGK [2] https://www.cell.com/cell/fulltext/S0092-8674(23)01034-6

Re: Narcolepsy is weird but I didn't notice

#78

Post by Kathula »

larsiusprime wrote: post #67
esperent wrote: post #53

> 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 narcoleps…

Author here: > I absolutely don't have narcolepsy - quite the opposite, I tend towards insomnia FWIW most people I know with Narcolepsy also have trouble sleeping at night, so that's not so much an opposing symptom as a fully compatible one. Narcolepsy is generally associated with the following classic symptoms: - Excessive daytime sleepiness and/or "sleep attacks" - Sleep paralysis - Cataplexy - Hypnogogic hallucina…

Yeah on the opposite I'd say it's pretty clear that the insomnia and poor sleep during night contributes heavily to why we are so spent and sleepy during the day. Aside from general insomnia I also had so much night terrors. Terrible nightmare, then waking up, then resuming the terrible nightmare again. Sometimes I'd try to stay awake just not to experience the night terrors. I inadvertently learned lucid dreaming to handle them.

Re: Narcolepsy is weird but I didn't notice

#79

Post by klipt »

kypro wrote: post #76

I've wondered if I've had some mild form of narcolepsy for a while now because I often get hit with a strong and sudden urge to sleep and will fall into a deep sleep rapidly if I'm sitting down. I don't remember this happening when I was younger, but it started happening more and more often in my 20s to the point I'd normally have at least one 20-30 min nap a day. The author also describes dreaming while awake, and s…

Surely the commonly referenced "food coma" affects more than just narcoleptics.

I imagine narcolepsy is only diagnosable when it causes major issues in your life.

In the same way that being "a bit obsessive" isn't OCD unless it materially affects your quality of life.

Re: Narcolepsy is weird but I didn't notice

#80

Post by arisbe__ »

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.

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