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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

#21
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.

Re: Narcolepsy is weird but I didn't notice

#23
Wow this is so close to my symptoms as well it’s interesting to read and see their few differences.

I too have a mixture of full narcolepsy and cataplexy attacks - but more cataplexy like the article.

I am conscious I just can’t move, I also feel a sinking feeling before it starts so I get just a few seconds warning which can help a little. My partner knows my distinctive “uh oh” I always utter before I leave for a bit.

When it happens I am in a new space and I see a new colour, it’s similar to purple but also with a lot of black mixed in, it’s not one solid colour but it morphed and swirls like those animated Gaussian noise functions. Initially it was scary but I feel like I know this place now, I can hear everyone, but I cannot move or respond or feel anything, I enjoy the serenity of being there now, it’s a little chill out zone, gifted to me.

I also dream while I’m awake, but I know it’s happening (visual and audio hallucinations) because the transitions are instant and very high res (it feels like reality, it’s never been blurry like the poster says) and since I know it’s a dream I have full control, I can modify it willingly (I enjoy adding waterfalls everywhere for some reason, and also moving about in a flying car) it’s not a conscious driven narrative I came to that conclusion because things still happen that surprise me or I mispredict events that then am able to understand why they happen with logic, which I think is very weird, my subconscious is able to build a dream so elaborate that it can surprise my consciousness with unexpected events? Isn’t that mind blowing?

It has a lot of downsides though, I can collapse any time without much warning, sometimes 1-2 seconds. it can happen during business meetings, crossing the street, balancing on places you really don’t want to fall, and no driving of course.

I take medication which helps a little but gives me terrible headaches and other unpleasant side effects.

Re: Narcolepsy is weird but I didn't notice

#25
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…

Edit: please disregard. I didn't read carefully enough. Obviously it's not dangerous to fall asleep when someone else is driving.

> The moment he gets in a car and it starts driving he falls asleep and very deeply

> ...

> These are not dangerous situations

Falling asleep while driving sounds quite dangerous, even with automatic breaking.

Re: Narcolepsy is weird but I didn't notice

#26
post #21
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.

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!

Re: Narcolepsy is weird but I didn't notice

#27
post #26
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!

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.

Re: Narcolepsy is weird but I didn't notice

#28
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…

Edit: please disregard. I didn't read carefully enough. Obviously it's not dangerous to fall asleep when someone else is driving. > The moment he gets in a car and it starts driving he falls asleep and very deeply > ... > These are not dangerous situations Falling asleep while driving sounds quite dangerous, even with automatic breaking.

> I have never seen my brother fall asleep while occupied with something (walking, talking... driving?)

Re: Narcolepsy is weird but I didn't notice

#29
post #17

Earlier quoted context omitted.

Wow I'm sorry to hear that, but it's also refreshing to hear from someone with a similar experience. > just a more extreme case of the first is a complete inability to wake up. > everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head. I've tried to describe this feeling to others, but it's difficult. I call it my "death sleep," not to be dra…

What are you prescribed? Similar situation; still trying to find the right meds.

* 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 and was also prescribed Modafinil. My PCP offered to help me stop the Duloxetine, but I decided to stay on it because: 1) I was so grateful for the relative energy I had after starting the Modafinil that I didn't want to do anything to compromise that, and 2) I was enjoying the anxiety-reducing effect.

The Modafinil has not completely relieved symptoms; I still have fairly bad sleep inertia and will crash with a "sleep attack" about once a week, but that is far better than before, when I was sleeping 11-18 hours _every day_.

Sorry--I'm sure that's not too helpful to you, as it seems Modafinil is doctors' standard starting point for IH "treatment" (at least in the US).

Edit: Oh, and despite the "warnings" in the Modafinil instructions, I also drink about 3 cups of coffee a day (stopping at noon), and I feel that has been a vital supplement.

What has your experience been?

Re: Narcolepsy is weird but I didn't notice

#30
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…

Edit: please disregard. I didn't read carefully enough. Obviously it's not dangerous to fall asleep when someone else is driving. > The moment he gets in a car and it starts driving he falls asleep and very deeply > ... > These are not dangerous situations Falling asleep while driving sounds quite dangerous, even with automatic breaking.

Describing this as "he gets in a car and it starts driving" seems like a pretty intentional decision; I suspect that either the brother doesn't drive, or this only happens when someone else is driving.
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