Fibromyalgia Support Group

I had an appointment today to go over the results of my sleep study. I have periodic limb movement disorder. I averaged 50 movements an hour. No sleep apnea. So that's good. He also said that I was very close to meeting the criteria for narcolepsy, but he couldn't make the diagnosis based on the info he got from this single test. He wants to redo the test when my insurance will allow it. He said that sometimes it takes several studies to be sure. For now he is calling it idiopathic hypersomnia. I fell asleep during all 5 naps, almost as soon as my head hit the pillow. He wants me to try Mirapex but I have to wait for prior authorization. He also said that I have what they call "Prozac eyes." When I close my eyes they move uncontrollably. That explains why my eyes feel so sore and tired all the time. He would like me to switch meds but there's not much left for me to try. I'm very hopeful that this has brought me one step closer to getting better. I just hope the mirapex helps. He did say that if the daytime sleepiness persists that he will put me on ritalin or provigil to help me stay awake during the day. Yay! I've been asking for a sleep study for over 3 years now and finally someone is listening to me!!

If you think you should have a test done don't let the doctors tell you you don't need it. Insist on having it done. Trust your gut. You know your body better than anyone, and they need to listen to you when you feel something isn't right. I'm not letting a doctor brush off my concerns again.

That is great amommy. I was supposed to have a study done on the 25th. The doc thinks I either have what yougot or sleep apnea. I had to cancel for now. I am having major surgery next month. So once I heal from that, then I'll do the study. I am on ritalin for ADD, but I wanted to switch to provigil. I can't until I do the study. Anyways I am glad you finally have some answers.

Gentle hugs,

Jenn

Good for you amommy. That is great and I wholeheartedly agree with you on insisting on testing we think we need. It has always served me weel. I need a sleep study as well, but like everything else I need it goes on the wait until I get through the 2 year waiting period for medicare. Sometimes I wish there was a way to get them to approve procedures during the waiting period so when the waiting period is over I won't have to wait. I am so glad you got answers.

My doc wants me to do a sleep study but I know I won't be able to sleep--I can't sleep anywhere but in my own bed and I've been like that since I was a baby.

Do it anyway! Take your blanket and your pillow, anything you can. Mattress topper, whatever you can to make it feel like your bed. I didn't think I'd be able to sleep either, but I did. It took me 45 minutes to fall asleep because I was nervous and my feet were cold.(I can't sleep with cold feet.) I thought the wires and stuff stuck all over would drive me nuts, but they didn't. Only the ones on the back and sides of my head behind my ears bothered me. And then only if m head was laying on them. I woke up about 1am and was up for about an hour, but then I usually get up at least once a night anyway. They could also give you a short acting medicine to help you get to sleep, but that would wear off quickly so they could see how you really sleep without it. You really should get it done.

I didn't think I'd be able to sleep either rayne. They have you hooked up to tons of wires in your head, face, chest, arms and legs.

I was so concious of the darn wires that I couldn't fall asleep but for a few moments at a time. But they got enough footage and input that I didn't have to do it again.

I didn't figure I would be able to sleep either. I fell asleep in less than 15 minutes & didn't wake up until they woke me up. they did say they had never observed someone who did move in their sleep.

Actually it was one of the best nights sleep I have ever had, too short but oh was it ever good.

amommy - so happy that you are getting closer to getting an answer. I'm with you - stick to that gut feeling and be demanding. It's our bodies, we know them more than the doctors do.

Sorry about the Prozac eyes thing. I took Prozac many years ago and found that it was the only thing that helped with my depression as well. I only had one side effect from it and it was at the very beginning. I would jerk just as I was going to sleep, but it went away after a couple weeks.

BUT....like I said, glad you are getting some results and your doctor seems to be listening to you now.

Hugs,

Kay

The great thing is that my primary doctor and the sleep doctor work in the same office, so they know each other, work with each other every day. Now that I've got the two of them together maybe I'll get somewhere.

I'm scheduled to get a sleep consultation on Monday to see if they think I need a sleep study.

I have to be honest, I'm not looking forward to it. The wires and a strange place would be bad enough, but the goop they use to attach the wires is always cold and grosses me out. I hate the way it feels. Plus, I have a feeling I would have to wait an hour or more before being able to get a cup of coffee. I'm not pleasant in the mornings anyway, but take away my caffeine and nicotine, and WATCH OUT!