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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

#91

Post by Aurornis »

Lerc wrote: post #36

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 swit…

> The dramatic difference in how it feels to do something that previously seemed to require insurmountable effort

Be careful about reading too much in to the early effects of stimulant treatment. The short, medium, and long term effects of stimulant treatment on perceived effort are different, so this will change as your brain adapts to the medication.

Reduction of perceived effort after taking stimulants isn’t unique to people with ADHD. It’s why people have used caffeine, nicotine, or harder stimulants for centuries. As everyone discovers eventually, those early effects are not durable for years.

The attention-promoting effects of stimulants are more durable. That’s why people with ADHD can derive benefits for a long time. However, people who get hooked on the ability for a pill to make it easier to do unpleasant work can get into a tough spot when that effect wanes over time and those tasks are back to requiring a lot of effort again (although concentrating on them is still easier). Consequently, the discontinuation rate for stimulant treatment is much higher than people would guess after their first few doses.

Re: Narcolepsy is weird but I didn't notice

#92

Post by 708145_ »

PeyTy wrote: post #26
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.

Your eye muscles maybe just tired from constant staring, or neck tension causes brain blood flow problems or something. I struggled with this all the time, but supplementation and exercise helps a lot. Technical papers aren't THAT boring, after all!

For me it is if in a cosy position and doing something cognitively demanding. Fell asleep very often during my university studies reading literature. It can happen also if trying to learn something new technical at work, but only if I don't sit at a desk.

If normal or not I can't say...

Re: Narcolepsy is weird but I didn't notice

#93

Post by larsiusprime »

dlandis wrote: post #90

> 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??

Author here. It’s not a totalizing immobilization, it’s not the same as straight paralysis. It’s more like you’ve forgotten how to move your body than that you physically cannot, it is very difficult to express with just words. Discomfort and pain can help break the spell, as well as an impending sense of danger. That’s not to say it can’t be dangerous, but unless you’re falling into traffic or lava or something, I’ve never felt all that unsafe. Asphyxiation has never been a worry.

Re: Narcolepsy is weird but I didn't notice

#94

Post by majkinetor »

amavect wrote: post #87
duncancarroll wrote: post #77

Earlier quoted context omitted.

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 ev…

If its dipeptide transporter, seems like any dipeptide would do.

Adding bromelain to mix might help.

Re: Narcolepsy is weird but I didn't notice

#95

Post by omgwtfbyobbq »

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…

Can you wake him up after he falls asleep in the day time?

Re: Narcolepsy is weird but I didn't notice

#96

Post by Mo3 »

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…

Aw, too bad I can't have whey because of my lactose intolerance. :(

Re: Narcolepsy is weird but I didn't notice

#97

Post by KETHERCORTEX »

brianpan wrote: post #45
Lerc wrote: post #36

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 swit…

> has made me wonder if laziness is not actually a real thing I think a lot about the insane drive that professional athletes (especially at the highest levels) have and how it's not possible for me to have the same drive. I'm sure it's complicated and there's some level of learning or skill training that's possible to change your amount of laziness or drive. But, like physical abilities, there's probably only so muc…

It's regulated by excitatory and inhibitory neurotransmitters. Former start and support the actions and thoughts, latter prevent or stop them. It's more complicated than that, but this explanation good enough for quick summary. And it's not only about the actions we think about, but also usual body function

> some level of learning or skill training that's possible to change your amount of laziness or drive

There are also things that don't require training. Music with tempo above 90 BPM (or better above 100) temporary increases the amount of excitatory neurotransmitters.

Re: Narcolepsy is weird but I didn't notice

#98

Post by exhypothesi »

greenavocado wrote: post #75
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

Thank you for the input, but a full blood panel for vitamin and mineral deficiencies is the _first_ thing a primary care physician checks when reporting these symptoms. To get to an Idiopathic Hypersomnia diagnosis, you have to exclude many things most people think of: vitamin and mineral deficiencies, poor sleep hygiene, depression, sleep apnea, etc.

Re: Narcolepsy is weird but I didn't notice

#99

Post by exhypothesi »

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?

It's easy to miss! The only reason I know is because of all of the research I've done into my Idiopathic Hypersomnia diagonsis. Mignot is well-respected because of his research.

It seems it's possible to get it from hypocretin deficiency via other routes like brain trauma, but they are confident enough to put this explanation in the DSM-5:

> Narcolepsy-cataplexy nearly always results from the loss of hypothalamic hypocretin (orexin)-producing cells, causing hypocretin deficiency (less than or equal to one-third of control values, or 110 pg/mL in most laboratories). Cell loss is likely autoimmune, and approximately 99% of affected individuals carry HLA-DQBl06:02 (vs. 12%-38% of control subjects). Thus, checking for the presence of DQB106:02 prior to a lumbar puncture for evaluation of CSF hypocretin-1 immunoreactivity may be useful.

https://ia800900.us.archive.org/0/items/info_munsha_DSM5/DSM...

pg 374, par 4 (pg 409 if using a PDF reader).

Re: Narcolepsy is weird but I didn't notice

#100

Post by koromak »

I get sleep paralysis (less so these days) and I absolutely get the instant REM thing. I'm dreaming before I'm asleep every single night, and I'm often dreaming for 5-10 minutes after I wake up. Its just a stream of audiovisual nonsense that doesn't shut off until I'm properly awake. Always figured it was normal.
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