Questions about Xyreme sleep medication

Discussion in 'Fibromyalgia Main Forum' started by shep, Feb 3, 2006.

  1. shep

    shep New Member

    I have read or heard about a new sleep medication Xyreme.
    This medication is taken in a liquid form at bedtime and then you set your clock to alarm four hours later and wake up and take the rest of it.

    Has anyone taken this medication?

    Please tell me your experience with it. My doctor wants me to take it as I do not sleep over 2-4 hours a week and I am getting sick from exhaustion.
    The doctor said this medication was very expensive and a very powerful drug and was a last resort. I am scared to take it.
    shep
    [This Message was Edited on 02/03/2006]
    [This Message was Edited on 02/03/2006]
  2. sleepyinlalaland

    sleepyinlalaland New Member

    experience with Xyrem.

    I have been on a four-year QUEST to try this medication as I've suffered from severe insomnia for decades now. Most of my life I've taken no medication, but I've also been unable to hold a full-time job because of my blurry brain.

    Finally I found a doctor who was able to get me a "sample" month's worth. I took it about 2 weeks altogether, and I still don't know if it's for me.

    I was really hoping for a quick fix...you know, to wake up and EUREKA!...I feel RESTED! No, didn't happen. I did learn that success with Xyrem is much more likely to be a bit of a "journey" than one may be prepared for. Supposedly, the key is in hanging in long enough to find just YOUR right dosage. I DID sleep, but was even more out-of-it the next day. I was told that you get past that, and that also the longer one has been sleep-deprived, the longer it may take to acclimate. In researching, I found that many people took MONTHS! These could be months in which I would be barely functional, so I regretfully quit (even with the haunting thought that it still might have eventually been my answer).

    Meanwhile, I began to suspect that I have an undiagnosed sleep apnea, and I am being tested for that next week. I think the combination of Xyrem (which really does knock your lights out and relax your muscles), and apnea could be a bad mix.

    If I don't have apnea (or have it remedied with a CPAP), then I may again try the Xyrem. Another problem I had with it is that I could never get back to sleep on the second dose (you have to divvy up the dose and take 2nd one 4 hours after first), so I finally stopped taking the 2nd dose. I do read so many success stories about Xyrem, and wish anyone luck with it.

    P.S. If it HAD of worked...I don't know how I ever would have dealt with the $500 a month price!
  3. lillypad2

    lillypad2 New Member

    Just about everyone at the FFC in Atlanta is on this stuff. A lot of them love it. They say its the best thing they have ever taken. I have heard that several times from patients. But for me, I could'nt take because I take ativan and my insurance would not let me take both. So I chose ativan for my anxiety.

    Take care
    Lisa
  4. MrHappyGoLucky12

    MrHappyGoLucky12 New Member

    I couldn't live without it! It's GREAT stuff! What do you want to know about it? Anything specific? I'm on my sixth bottle of it!
  5. stray

    stray New Member

    I have been desperate for sleep for 15 years and I believe severe sleep deprivation has led to my other symptoms. I have taken everything, including xyrem. Read the side effects before you buy and if you have even the slightest tendency toward depression, be careful. There is a warning to that effect in the packet that comes with the medication. Xyrem did work. It sent me into deep sleep most nights like nothing ever has. I don't want to scare you, you have to make your own decision, but this is what happened to me. Every morning, when I awoke, I had to lie on my back for about two hours because I was terribly nauseated and cross-eyed, yes, crossed eyed! If I tried to stand I would fall. I would grit my teeth because I was so agitated and severely depressed. If I hadn't known it was the drug I might have tried to end my life. But I did know, the warning said this was possible, and I continued 'til I was forced to choose between sleep and sanity. I've never had a problem with depression like this, I have more sympathy now for people who really struggle. This may not happen to you, and honestly as soon as I stopped the drug I went back to normal so I can almost say it was worth the try. Almost.
    Stray
  6. bioman85

    bioman85 New Member

    What was the Xyrem prescribed for? Were you unable to sleep, or were you having alpha intrusion?
  7. mer0928

    mer0928 New Member

    Hey, everybody! I recently went to see a FMS specialist who discussed xyrem with me. We are going to try it out if trazodone doesn't work. However, she told me the history behind xyrem. It was originally a supplement available over the counter. When it got taken off the market, it began to show up on the black market as GHB (the date rape drug). That's why it's now such a restricted drug. They've added a sodium component to it, so that it's not tasteless like GHB. That would probably explain the side effects that some of you are describing...I'm curious to see how it works for ya'll. Keep me posted!

    Mary Elizabeth
  8. chocolatejewel

    chocolatejewel New Member

    I have been on Xyrem for over a year. It has helped somewhat, but not enough. I had no deep sleep for years (as documented in a sleep lab) and also had sleep apnea (which was treated by C-PAP). I was lucky that my insurance paid for Xyrem. It did give me some deep sleep, but it was fragmented- usually three hours, then wake up and take second dose, then maybe another three hours. I still didn't feel rested the next day. While I did set the alarm clock for 4 hrs after the first dose, I almost always woke up on my own. I did have some problems at the time I woke up to take the second dose. They tell you not to get out of bed, but I always have to use the bathroom. On a number of occasions, I fell asleep and actually fell off the toilet. I have heard of this happening to other patients, one of whom suffered a cerebral hemorrhage when she hit her head.
    I finally stopped this from happening when I reduced my dose of Xyrem to a point where I did not fall asleep when I got out of bed. In summary, the Xyrem helps somewhat, but you have to be very careful with it. My sleep specialist tells me that they are coming out with a form of Xyrem that can be taken only once and will last all night. I'll be glad when that happens.
  9. TTKS

    TTKS New Member

    I have been taking xyrem for about 3 months and it is working great for me I am pain free for the first time in about 8 years. I was also very nervous about trying it but I am so thankful I did. It took about 2 weeks for me to notice a difference in how I felt. Good luck to you.
  10. MaryCecelia

    MaryCecelia New Member

    I received my sleep study results today, and my dr. wants me to try Xyrem. He said that although I slept less than 4 hrs., I showed signs of alpha intrusion. Now, I have to wait for my insurance to approve. I'm bumping for more responses to this already informative thread.
    [This Message was Edited on 02/13/2006]
  11. MrHappyGoLucky12

    MrHappyGoLucky12 New Member

    bioman85,

    I have both insomnia and alpha-wave intrusion. I'm sure they're related somehow.

    MrHappyGoLucky12
  12. pawprints

    pawprints New Member

    What dose did you start with and what dose are you on now?

    Thanks for the help.