Doctor thinks I have narcolepsy - need another sleep study....

Discussion in 'Fibromyalgia Main Forum' started by BxGirl, Aug 11, 2005.

  1. BxGirl

    BxGirl New Member

    Well, I saw my sleep doctor today. Boy, did he surprise me!

    I told him I fall asleep a lot - during the day. At the movies, at my desk, watching TV. He said it's not normal. Gosh, I thought it was!

    He wants me to have a "double" sleep study. I will go in on a Sunday night at 8:00 p.m. I'll go to sleep. But I'll stay there all day Monday, until 4:30 in the afternoon. Every 20 minutes they'll ask me to go to sleep.

    I figure it'll be a real relaxing day. I can bring books and videos to watch. I wonder how they treat narcolepsy? Does anyone here have it?

    Can you believe all I've been through these past 2 years? Let's see - foot surgery, cataract surgery, pancreatitis, liver biopsy, physical therapy, 2 new jobs, father passing away, mother moving up here......who says life is boring?

    What would I do if I didn't have fibromyalgia?

    BxGirl
  2. BxGirl

    BxGirl New Member

  3. neen85

    neen85 New Member

    just one test right after another! You poor thing,seems like you just got done with the liver crisis a few days ago!. I hope they can find out something and help you. May you end up NOT having to struggle through your days at work,now that you are "full time".

    Please let us know what they find out and what they are planning to do about it. Daneen
  4. Mikie

    Mikie Moderator

    Even with the books and videos, it doesn't sound like fun. Good luck to you and please, let us know how it turns out.

    Love, Mikie
  5. abbylee

    abbylee New Member

    But I thought you were already taking Xyrem. You're not? If you have Narcolepsy and/or alpha intrusion, you should be getting a prescription for Xyrem after your study.

    Please keep us posted on what you find out.


    abbylee
  6. lurkernomore

    lurkernomore New Member

    I really am so sorry to hear of all your health problems. I know this is of no help to you whatsoever, but I am thinking that you *may* have just solved a mystery for a friend of mine!

    She was just recently dx'd with sleep apnea. It was so recent that she has yet to even get her C-Pap machine! About a week ago, as she was driving to work, she "thinks" she blacked out, crashed her car over a six foot embankment and although she got out with minor cuts and scratches, they have no idea what caused her blackout.

    Now she had been telling me that she barely made it home from work and sat down before she was asleep, sitting straight up in the first chair she got to. I am going to mention Narcolepsy to her and ask her to do a little reading up on it. I feel as if she may need to be re-tested as well.

    I pray that your tests turn out well and that you are given the proper treatment. And I have always thought that whatever trials we go through, there is a reason. You never know, but you may have just saved my best friend's life!
  7. getfitat40

    getfitat40 New Member

    Sorry to hear you might have it. The first drug she was treated with made her a nervous wreck and made it all worse. She is not treated with Ritalin and it seems to be working for her. She also changed her diet due to a book about eating for your body type. She is doing a lot better, but it has been a tough road for her. She has three young kids and a husband who is non-supportive with her illness. (Not unlike many of the stories we hear here)
    Best of luck to you and let me know...Nancy
  8. jrose

    jrose New Member

    My daughter has narcolepsy. She takes Provigil for it. She is able to work. She says that she still tends to fall asleep when bored. Her doc recommends that she keeps a regular sleep schedule which she doesn't do cause she's 25 and likes to go out after work. She was diagnosed at 14 but had symptoms earlier.
  9. darude

    darude New Member

    Thats long sleep study geez. I have blacked out like that
    and can no longer drive as too dangerous. I have sleep apnea and just had an EEG to check for seizures ( can cause temp blackouts).
  10. darude

    darude New Member

    Thats long sleep study geez. I have blacked out like that
    and can no longer drive as too dangerous. I have sleep apnea and just had an EEG to check for seizures ( can cause temp blackouts).
  11. Rosiebud

    Rosiebud New Member

    I'm glad that your sleep doctor is going to get to the bottom of this for you.

    Will you be able to go to sleep when they ask you to??

    You've had some time of it haven't you.

    Good luck

    love
    Rosie
  12. BxGirl

    BxGirl New Member

    Yeah, I go from one thing to another, don't I? But I guess we all do. This DD has really done a number on me. I'm really lucky - this sleep doctor is wonderful! I never imagined I could have narcolepsy. He also wants to see if the Restless Leg Syndrome is any better. I told him I think it is, but he wants to be sure.

    But I really think the Milk Thistle is helping me feel better. At least I'd like to think it is. Last night I woke up at 12:30 a.m. - I fell asleep in front of my computer again! And I do hear "conversations" while I'm falling asleep. I have all the symptoms I guess.

    Lurkernomore - when I worked downtown I used to take the highway. I had to stop because the drive on the highway would almost put me to sleep. I started taking the city streets. I'm sorry your friend had that accident. She really should have a sleep study ASAP.

    Who would ever think these things would happen?

    BxGirl