anyone taken xyrem?

Discussion in 'Fibromyalgia Main Forum' started by floridagrl, Oct 23, 2009.

  1. floridagrl

    floridagrl New Member

    I have taken every benzo, muscle relaxer, herb, and hypnotic and nothing can keep me sleeping all night. My dr gave me a sleepiness questionare and told me to google this drug and come back in two weeks. I have had a sleep study done and I moved my legs 13 times an hour, I grind my teeth, and sometimes snore. I also have strange hallucitaions sometimes when waking a night of weird lights and shapes. I know they are not really there but this can't be normal. I wake after a few hours and cannot go back to sleep. I always feel worse in the morning than any other time of the day. I know this is used to treat narcolepsy and my grandpa is narcoleptic but is used off label sometimes. Also, how do you search just the message board since the site has changed?
  2. hannahfaid

    hannahfaid New Member

    I took it a few weeks...woke up groggier and way less refreshed than anything.. They want you to wake up mid sleep cycle and take 2nd dose! LOL hell, if it aint broke dont fix it! but I was very drunk feeling and dizzy, slept horribly and if I forgot 2nd dose I woke up too early urefreshed.. if I DID take 2nd dose I still felt crappy... not for me..
  3. nah.stacey

    nah.stacey Member

    I have taken every sleep medication out there, and some that aren't used for sleep.

    Xyrem was absolutely the worst "sleep" medication I ever took. Not only didn't it work, the waking up to take the second dose pppplllllleeeeezzzzzz. It made me feel absolutely horrible in the morning and you think you have have wacky dreams now??????? This for me was like the depiction on TV of taking a bad LSD trip from the 70's.

    Mind you everyone reacts differently, but anyone I've talked to about Xyrem it's been a unanimous thumbs down.

    Good Luck,
    Nah.stacey
  4. agcgmom

    agcgmom New Member

    I have been taking xyrem for years. I tried everything else like so many people. It took about a year for my Dr to talk me into trying it. It has been the best thing I have done to treat my fibro. I am off most of the other meds. If I sleep, I feel human and function well. I have never had to set my alarm to wake up for the second dose. I just wake up because xyrem is such a short acting drug. If one wakes mid dose, there is dizziness and nausea. I rarely do that. However, I can wake for an emergency and function (I had to do that once). I hope it works for you too!
  5. bunnyrabs

    bunnyrabs New Member

    Good luck getting it covered by insurance, which is the only way mere mortals could afford it because it now costs up to $2500 per month depending on dose, and Jazz (the manufacturer) keeps raising the price continuously. They claim it is to cover the cost of getting it approved for fibro, ironically. It used to cost much, much less only a couple of years ago.

    If you are actually diagnosed with narcolepsy, you stand a better change of getting it covered by insurance, but even narcoleptics are getting denials lately or their co-pay is too high now due to the skyrocketing price. If you get it prescribed for off-label use, prepare to sell your soul to pay for it.

    I have a prescription for it waiting for me at the Xyrem pharmacy, and as soon as I win the lottery I am good to go. :((


    [This Message was Edited on 10/26/2009]