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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

#51

Post by Kathula »

RevEng wrote: post #44
exhypothesi wrote: post #29

Earlier quoted context omitted.

* Modafinil (400mg, 1x daily) - Started with 100mg and tried several variations of timing/dosage. Currently, 400mg upon waking in the morning has worked the best. * Duloxetine (30mg, 2x daily) My PCP prescribed the Duloxetine early in the process when they suspected I had ME/CFS. It did not seem to do much other than make me feel calm in situations that would normally cause anxiety, but later I got the IH diagnosis a…

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 awake, or constant night terrors and waking up 30 times a night. You feel refreshed when you wake up, like a weight has been lifted from your shoulders. Like a veil has been revealed.

The risks aren't that great, if you take it as prescribed it shouldn't cause you any trouble, at least not anything major. Nausea usually only happens when you titrate up the doses too quickly. It happened to me, maybe 5 nights, or 10 at the most. Hasnt happened now in 10 years I've been on it.

You should look it up more. You can check in the narcolepsy reddit, there's always questions and discussions around Xyrem/sodium oxybate every day.

I do sympathize with the high cost and insurance problem. It certainly isn't a medication most people can afford on their own.

Re: Narcolepsy is weird but I didn't notice

#52

Post by kolinko »

lisper wrote: post #27
PeyTy wrote: post #26

Earlier quoted context omitted.

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!

No, they aren't boring at all. I love reading them. And I don't fall asleep reading other things, like news articles or fiction. But my brain's response to seeing Greek symbols is to fall asleep.

I have it similar - but when listening about math/physics. Usually play it to fall asleep. I think it's due to my adhd (diagnosed) brain getting the right amount of stimulation.

Re: Narcolepsy is weird but I didn't notice

#53

Post by esperent »

> 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 narcolepsy - quite the opposite, I tend towards insomnia unless I practice fairly strict sleep hygiene. But, this "symptom" is a common and enjoyable part of falling asleep to me. I think it's common for a lot of people, near sleep, to have a dreamlike state, and it's possible to make interesting connections that you wouldn't make while awake. Often, but far from always, nonsensical. Sometimes deeply meaningful. I've solved maths equations that I was stuck in this state, or rather, I've seen the final connection I was missing to be able to solve it. Salvador Dali was famous for using this technique to come up with ideas, taking a nap while holding something that would fall from his hand and wake him to aid in remembering the connections.

Far, far be it from me to tell someone that what they experience as a symptom of a disease isn't. But I don't think that this particular symptom is abnormal, or only experienced by narcoleptics, and I do think there's a risk for the sufferers of any disease, to attribute many of the weird, sometimes confusing parts of simply being a haphazardly evolved animal created by evolutionary pressure as aspects of their disease. As a migraine sufferer, I do that too with any headache or weird aura effect. But sometimes a headache is just a headache. Sometimes a dreamlike state is just a dreamlike state.

Re: Narcolepsy is weird but I didn't notice

#54

Post by morjom »

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.

In my experience cataplexy has been more of a numbed feeling, when you sleep on your arm or like you can't feel the muscle but you can feel the skin (which I guess makes sense since cataplexy -is- the sharp decline or loss of muscle tonus)

Sleep paralysis has been more of a tree trunk experience, where I can feel everything and use my senses, but not move (usually paired with hallucinations).

Re: Narcolepsy is weird but I didn't notice

#55

Post by morjom »

slurpyb wrote: post #16
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…

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 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.

Re: Narcolepsy is weird but I didn't notice

#56

Post by steve_adams_86 »

I was diagnosed as a kid with narcolepsy because of the daytime dreaming which I struggled to describe as anything other than hallucinations.

I knew they were dreams because they felt like dreams, yet they were happening at the wrong time. I actually thought I was going crazy and dying, so I didn’t tell anyone for a year or so. Haha.

Before it happened I would get sort of a cold sweat and—bizarrely—nauseating pain in my shoulders and elbows, then I’d fall into a chilling state of weakness or outright paralysis. I’d have a few moments to realize this awful thing was happening, then try to get myself into a sustainable position and tell whoever I was speaking to that I’d be incapacitated for a minute or two.

It felt absolutely awful. The pain in my bones was unbearable, and the visions I’d have would often give me nightmares later on.

One of the strange qualities of the dreams was that I’d often see “nothing” very vividly. Like looking into a black hole, but rather than seeing nothing, I could clearly perceive that absence. Much like you can feel the absence of heat as cold, I could sense the absence of light, but as much more than just “darkness”. It was a confusingly massive, horrifying, eternal thing that wanted to swallow everything around it.

One of the “nothings” I’d see was death itself, who would visit me only to terrify me and threaten me that it could take my family and friends away. Sometimes it would bring my dead friends to me.

Yep, I was pretty sure I was going insane. I’d try to snap out of it by screaming or running, but I couldn’t move or speak or anything. I can still recall all of it in what seems like vivid detail. I have some memories where I can tell my brain is doing some clever back-filling, but these ones seem to have a special place reserved. I suspect a lot of the dreams were traumatic (sometimes I’d shake and cry for a few minutes after because it seemed so real) and there’s some evidence that truly horrifying things really do stick around in clear detail, longer than typical memories.

For some reason it all pretty much stopped around age 25. I still get the odd sinking feeling and all the ensuing terror, but I don’t get as weak and no dreams come. The bone pains happen too, but it’s thankfully pretty mild.

Narcolepsy is definitely weird. I’m a bit surprised the author never realized it, haha. I had no idea I had ADHD until close to my 40s though, so maybe I shouldn’t be too surprised.

Re: Narcolepsy is weird but I didn't notice

#57

Post by morjom »

Snacklive wrote: post #12

sometimes when sleeping or falling asleep i "wake up" or so. Basically im awake but i start having hallucinations about my surroundings, kind of like the description of sleep paralysis but i can move. I only have experienced sleep paralysis twice in my life so i wouldn't really know. But hallucinations while semi sleep are wild, idk if it is normal, i haven't really considered before

The waking up part is called hypnopompia and the falling asleep part is called hypnagogia. Hallucinations are known to occur during these phases between wakefulneas and sleep (e.g "I have hypnagogic/hypnopompic hallucinations") )

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

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

Re: Narcolepsy is weird but I didn't notice

#58

Post by superb_dev »

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.

Their technique for getting out of cataplexy is the same thing I do to get out of sleep paralysis

Re: Narcolepsy is weird but I didn't notice

#59

Post by Kathula »

morjom wrote: post #55
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 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.

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).

Re: Narcolepsy is weird but I didn't notice

#60

Post by evv555 »

>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 guess this is a combination of "I just thought this is how it was for everybody," as well as "I never stopped and paid attention to what was actually happening, and once I did I noticed how weird it was."

This was the primary effect I got from theta wave binaural beats. Superimposed but at same time not easily accessible as a memory even though it was happening at the moment. Like with a regular dream once a bit of the dream was recalled the rest of it would come back to memory.

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