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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

#61

Post by munchler »

> 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 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.

Re: Narcolepsy is weird but I didn't notice

#62

Post by larsiusprime »

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…

(author here) Maybe you should get a sleep study done, especially if you have ever had trouble sleeping at night, or are excessively sleepy during the day! I went over twenty years without a diagnosis.

Re: Narcolepsy is weird but I didn't notice

#63

Post by bitwize »

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…

Reminds me of a Japanese girl I met who told me that when she smoked weed for the first time, she lay in bed, and saw an entire episode of The Simpsons play on her ceiling.

Re: Narcolepsy is weird but I didn't notice

#64

Post by larsiusprime »

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…

> Some of those were before I had Touretts like symptoms turn up.

Author here. For what it's worth, I have BOTH Narcolepsy AND Tourette's syndrome, both formally diagnosed.

I'm not a doctor, but what you described about lying on bed does sound a bit like cataplexy to me. You might have a doctor who specializes in Narcolepsy specifically check you out.

Re: Narcolepsy is weird but I didn't notice

#65

Post by munchler »

larsiusprime wrote: post #62
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…

(author here) Maybe you should get a sleep study done, especially if you have ever had trouble sleeping at night, or are excessively sleepy during the day! I went over twenty years without a diagnosis.

Thanks for responding! That's interesting. I'm a night owl and nap pretty much every day, but it's kind of my superpower, not something I consider a problem. I feel a million times better after a good nap.

Re: Narcolepsy is weird but I didn't notice

#66

Post by larsiusprime »

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?

Re: Narcolepsy is weird but I didn't notice

#67

Post by larsiusprime »

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 hallucinations ("dreaming while awake")

But also, every narcoleptic I know, when untreated, has significant issues with sleeping at night. I myself had full blown insomnia (not sleeping at all) several nights out of the week back in high school for years on end.

Not all narcoleptics have all of the symptoms, for instance many will have E.D.S. but not cataplexy, or the reverse, or won't have sleep paralysis, etc. I'm not a doctor, and I'm not trying to diagnose you over the internet. But it is interesting that you have what pattern matches to 2 out of 5 common narcoleptic symptoms.

On the other hand, just having one or two symptom doesn't mean you have the full blown disorder. Plenty of people have a motor tic or too but don't have full blown Tourette's.

I write this mostly to clear up a misconception -- that many people assume Narcoleptics have no trouble sleeping at night.

Re: Narcolepsy is weird but I didn't notice

#68

Post by larsiusprime »

Kathula wrote: post #48
slurpyb wrote: post #16

Earlier quoted context omitted.

I recently got diagnosed but i somehow managed to be very productive all the way until my 30s. I had a spinal injury and turned it up 10x and its ruining my life. Any advice? The medication doesn’t come close to keeping me awake and writing code… do i just keep taking more amphetamines and caffeine until i can? I exercise, eat well etc etc

I have narcolepsy as well. What really helps a lot is a type of medication called sodium oxybate. Different kinds of stimulants never did anything to me, they might (might) keep me awake more, but I never felt rested, and always had constant brain fog. Xyrem changed that for me. Now I get many hours of good sleep at night, making me feel rested waking up. I'm still more prone to fall asleep during the day than the av…

Author here. Xyrem is a miracle drug. Life was getting straight up unlivable, when I'm on it I'm extremely well treated.

Re: Narcolepsy is weird but I didn't notice

#69

Post by larsiusprime »

boole1854 wrote: post #31
etaioinshrdlu wrote: post #24

As someone without narcolepsy, the description of cataplexy sounds a lot like sleep paralysis (which happened to me a couple times in my life), and so do the waking dreams.

Oddly the author compares their cataplexy experience to sleep paralysis and says they are not similar because in sleep paralysis "you can't feel" whereas in cataplexy "you can feel all your limbs and it feels like they're all ready to obey you". I have experienced sleep paralysis several times, and I have always retained the ability to apparently feel my body/limbs as I think most people do. It would seem that the au…

Author here -- I wouldn't describe it as being completely numb in a way fully equivalent to, say, anaesthesia (or having your limbs fall asleep), but it's very qualitatively different from cataplexy, for sure. It's hard to describe exactly, but it's a much more "total" experience than cataplexy is.

I have had multiple (thankfully rare) instances of sleep paralysis in which I am completely unable to move upon waking, with the classic feeling described in the literature of a heavy weight on your chest (presumably sleep paralysis is the experience from whence the Norwegian word "mareritt" -- meaning nightmare -- comes from; you are being "ridden" by an evil creature called a "mare")

The worst experience with Sleep Paralysis I had was paired with hypnogogic hallucinations of wasps flying above me. I was sitting there terrified and utterly helpless to move. None of my usual anti-cataplexy tricks worked at all.

Eventually the sleep paralysis wore off and I stumbled out of the room in my underwear. I cautiously crept back to see if the wasps were still there. Staring at the ceiling, I realized they weren't wasps, they were ... dragonflies? Then the dragonflies disappeared and I realized the whole time it was just a tiny hook in the ceiling, the kind of thing you'd hang a potted plant or decoration from.

This was all before I learned the finger trick for cataplexy, however. It's been over a decade since I had sleep paralysis, but next time it happens I will definitely give it a try.

Re: Narcolepsy is weird but I didn't notice

#70

Post by comboy »

lisper wrote: post #21
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…

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.
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