Hi all,

I'm from Canada and had a polysomnogram and MSLT in December. I meet my sleep doc at the end of the week for the results. I'm worried (a) that he might say I have narcolepsy and (B) that he might say I DON'T have narcolepsy. Does that even make sense?

I had a hard time falling asleep with all those gizmos hooked up to me and I got so frustrated that of course it took even longer! Then I was so completely worried about it (even though I was trying to relax) that when I had to take those naps I didn't nap at all. By the end of the day I was crying because I felt like this was my one chance to show what was happening to me and I messed it up. I realize this is completely illogical but what can I say. My hubby laughs that I'm such a control freak and he is too right!

I'd really rather not have a lifelong neurological disorder obviously but I can't hack the thought of going on without a diagnosis or worse--being told there's nothing wrong and it is as I always feared: I'm just lazy and unmotivated.

I'm in my early thirties now and it started in Grade 10 with sleep paralysis--demon in the room and feeling like I was dying etc. Then in my early 20s I would have see or hear or do weird things when I had been asleep a short time. I'd think people were talking about me in the hall, coming to kill me. I'd often think there were bugs everywhere and tear my bed apart. I'd go to sleep with the window open and wake up with it closed. Or the phone would be in the kitchen when I went to bed and it would be on my nightstand when I woke up. I never really thought much about it until I got married and my hubby was all pissed off in the morning that I'd been babbling at him about something and then fell right asleep again, or that I'd been punching my pillow (or him!) and I wouldn't really remember it.

I've always had a desparate time getting up in the morning--late for school, late for work--although I can stay up late at night without much trouble. And during the day, I've never had these "sleep attacks," but I feel so groggy and have a hard time staying on task without enormous effort. My hubby and I have had fights and fights because he swears I told him something or he told me something and I would swear it never happened. I'm not sure if I was just zoned out but how frustrating not knowing what you're saying or doing! I never drive long distances early in the morning for a number of years, as it doesn't seem wise--I did a three hour drive starting at 6 am. once and I remembered very little of it--after that I decided if I needed to go somewhere for a morning meeting I would drive the night before instead.

Also, I never really thought much about it but I always fall down when my hubby tickles me--just buckle through my knees. I figured it was some kind of instinctive response since I'm terribly ticklish. But this doens't happen for anything else...

What really made me get a doc to refer me to a specialist was after my baby was born. I had no sleep of course and then had major postpartum depression. Basically everything went sideways. I was afraid I'd hurt my baby and wasn't sure if I was having hallucinations so I demanded that someone try to figure out if there is something wrong with my sleep.

So here I am now. I did the big questionnaire for the sleep doc and he said it wasn't "cut and dried" and mentioned confusional arousals and sleep inertia and of course sleep paralysis. Then I had to wait for the sleep study (aren't Canadian waiting lists great?) and now I'm so nervous that it won't be conclusive and I'll have to keep on going like this again--always tired, never totally there.

Thanks for letting me vent,
Coba.

You Canadians and your craziness! Let's see to your sleep study worries here first. Even if you didn't fall asleep "right away" doesn't mean you don't have narcolepsy. I generally can't fall asleep until 1-2am. The importance in your case is that when you did fall asleep, how quickly did you slip into REM. If the delay was under an hour, it's likely a positive for narcolepsy. With not falling asleep at all for the MSLT though, I'm not sure.

Second, have you ever been checked for parasomnia? The phone moving, windows shutting, and pillow punching sounds like it might be. To beat sam to the wiki link:
Parasomnia
I know little about parasomnia other than unlike normal sleep, your muscles do not become paralyzed so you then act out your dreams. Hopefully your dreams are nothing like sleeping beauty's dreams and you don't kill people! It has happened, but you can plea insanity, or something, if it happens to you. Parasomnia, as sad as it is, is far more entertaining than narcolepsy, and far more dangerous to those around you! I hope that hasn't scared you. I got a tad carried away, I'm bored and the rest of my family is watching American Idol (zZz).

Lastly, if you ever need to vent more, let it out, and know there is always a thread under "Narcolepsy Chat" made for just that reason. Don't even bother censoring yourself, I've got it covered :).

Chris"Toph4er"

I had the same problem with my first MSLT - i just could not fall asleep - i mean it is just not natural to fall asleep hooked up to so much stuff and with some one in the room and on the most uncomfortable of all beds!

my doc said that i hadn't managed to fall asleep but because all the symptoms were there he was not afraid to diagnose me with N - i had another one recently and i fell asleep within 2 minutes - so it shows that these tests may be the only hope that we have but they are no fool proof - when you see you doctor you should probably explain to him that it was not a natural setting so it was difficult for you to fall asleep.

Hope things work out for you

Sam

It's one of those damned if you do and damned if you don't situations, ain't it? Either way, the wait for the results is stressful. I hope your results are conclusive, but sometimes they're not. There are so many things that can affect your sleep on any given night, but especially if you're nervous about the test. If you feel your results were affected by "whatever" and your sleep was not typical, tell your doctor. He might want to order another test. My daughter did. And her results were different.

C'mon sam, no comments about me beating you to wiki? :P

i thought i would give you the impression that you are still the better person on this site - although everyone knows that with my super-wiki powers i rule this site, today PWN; tomorrow the world!!!

Thanks for all the replies--I go for my results today. I'll let you know how it goes.

Coba.

Good luck! Whatever, the lucky answer is at least, so long as you get an answer!

Chris"Toph4er"

Well, my sleep doc said--surprise, surprise--the study was inconclusive. There were a lot of unexplained tiny awakenings, but we've ruled on sleep apnea and my legs weren't moving either so that's also not my problem. I fell asleep about 3 a.m. and slept till 9, but before that I had little short sleeps that I didn't notice myself. Turns out I fell asleep for about 30 seconds on one of my daytime naps too. So the doc says we have to repeat the study and maybe this time it will be closer to reality since I'll know what to expect and likely won't be as nervous about it. He can't do anything for me before that since I can't be on anything when I take the test. Back on the old waiting list! At least I'll be on the top of the list this time... :rolleyes:

Coba.

Oops--sorry for the re-run there... Must be a bit dozy this morning. :wacko:

Forgiven, and fixed. Better luck next time eh? At least you got some information out of it.