Comment by morjom

Comment by morjom 9 days ago

(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.

slurpyb 8 days ago

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

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Kathula 8 days ago

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 average person, but it's mostly after I've eaten a big meal. Do yourself a service and look it up.

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- larsiusprime 7 days ago
  
  Author here. Xyrem is a miracle drug. Life was getting straight up unlivable, when I'm on it I'm extremely well treated.
  
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nosefurhairdo 8 days ago

Sorry to hear. There is a promising new class of drugs, orexin agonists, currently in clinical trials. Particularly, TAK-861 had excellent phase 2b results and is currently in phase 3 trials.
I don't have narcolepsy, but I wonder whether something like a yoga nidra/non-sleep deep rest practice might help.

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morjom 7 days ago

I can relate. I got diagnosed a bit after taking the pandemrix vaccine, after I started showing the symptoms, back in 2010-2011. As mentioned by someone, sodium oxybate is one medicine to maybe look into, but I don't think it'll necessarily help with wakefulness, more so with sleep and cataplexy.

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- Kathula 7 days ago
  
  I got it after pandemrix vaccine as well. Sodium oxybate absolutely helps with wakefulness, turns out you feel more awake and are less prone to fall asleep if you get good sleep at night (although induced by medicine).
  
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fallingknife 6 days ago

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?

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