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Questions about Narcolepsy/Cat.

Posted by sleepyinmass on February 21, 2007 at 07:06:51:

Hi all

I have kind of a long sordid tale to share. I've not been dx'd with narcolepsy. I do have a psychotic disorder (started as a teen), obstructive sleep apnea, and, they are debating REM Behavior Disorder. I have had sleep studies confirm RBD, but my sleep doctor currently says, "You're not an older man!"

I am a woman in my early thirties.

My whole world is shook up. I started sleeping badly at about 9 years old, and started hallucinating at about 15. Mostly at night. By sleeping badly, I mean, it was almost like my sleep cycle was all backwards.

So I was dx'd with a psychotic disorder at 16. Continued to be a sleepy chick. My doctor at the time (he is still my doctor) said he never really LIKED the dx he gave me, as he thought I more fit "temporal lobe epilepsy." Of some variety.

Then, years passed. I didn't sleep through the night, ever, but I didn't always have daytime sleepiness.

At 26 I started to have real problems staying awake. No mono, no nothing detected. I learned to live with it, because the doctors (except my psychiatrist) said it was all in my head. In 2001 it got worse, had my first sleep study.

I was told it was fine. It turned out, that's when they first discovered the RBD. (I routinely act out dreams. I have kicked my husband... repeatedly... while standing on the bed. I have destroyed objects, etc.)

No one told me about the RBD. I learned afterwards, when I requested a copy of the study. I had about 26-28 arousals per hour, no sign of apnea.

Shortly after, I started "blacking out". I would do my work at my job, and not remember doing it. Luckily, I didn't screw up too much. I would take the train home and not remember getting on the train. Stuff like that.

I have fallen asleep in the time it takes one, to, er, tinkle on the latrine.

Fast forward again, about three years.

I was feeling stupid for awhile, not remembering things, etc. Then, I started to feel sleepy. Not like the usual sleepy I always felt, but it felt a LOT worse. Seriously, it felt like the Old Testament God was alive and well and I REALLY ticked him off.

I fought it. I really did. I started walking to work, thinking maybe I needed more exercise or maybe I was depressed. But I'd get halfway there and feel like I was going to DIE.

Then, Sept. 2004 came the pivotal moment. I took a nap one afternoon (I was on vacation). I got up, got in the shower. I don't know whether I lost consciousness or what, but the fatigue that smacked me down was just... amazing.

It hasn't left. And no one knows why.

My doctor thought it was post-ictal fatigue. No signs of seizures. Then I got another sleep study. Yay! I have OSA now. CPAP arrives, it helps some. I mean, now I wake up feeling refreshed... for about 30 minutes to 2 hours. Then I need to lie down again.

I had to quit my job, which I loved. That was devastating.

I start getting pain. I am dx'd with fibromyalgia,even though the rheumatologist doesn't think I really fit the description.

Last week I had another sleep study to test the titration on my CPAP, also to look for RBD further. (And the interesting thing, I think I actually performed for them that night).

But I started reading, mostly about the RBD, which is sometimes, in younger people and women, like myself, associated with narcolepsy. Then I read that narcolepsy can mimic psychosis (I always chalked hypnagogic hallucinations up to my existing problem). So now I'm starting to doubt EVERYTHING.

My question is this: Has anyone been dx'd with a psychotic disorder then found it was narcolepsy?

And... cataplexy... What is mild cataplexy like? Recently, I've started getting really heavy eyelids and my cheek muscles feel hard to move for about 3-10 minutes after physical or (sometimes) something really really really funny. I mean, though, it has to be so funny I have tears coming down. It's not like just a regular sort of amusement that gets me going.

Would physical exertion cause cataplexy? Could it cause things like blurred/double vision? I've had a few unexplained cases of double vision, mostly after mild exercise.

Sorry this was a book. I am going to see the sleep doctor the end of March to talk about the test results, but I am trying my best to make sense of this as much as I can.

I don't know what's worth bringing up to her, and what isn't. I don't want to say, "I think I have cataplexy" if it's nothing like that... you know?

thanks SO much



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