Comments about Xyrem?

Discussion in 'Fibromyalgia Main Forum' started by PamiJo, Apr 9, 2008.

  1. PamiJo

    PamiJo New Member


    Anyone familiar with the sleep drug xyrem?

    Thank you in advance for any comments.
  2. ladybugmandy

    ladybugmandy Member

    hi pam. i tried xyrem once. i do not have trouble sleeping but xyrem is supposed to give you a particular stage sleep you don't get when you have CFS.

    i slept on xyrem but it made me a little dizzy.

    my new doctor said he doesnt want me on it so i really only tried it once.

    sorry i couldn't be of more help...

  3. PamiJo

    PamiJo New Member

    I have FM and Narcolepsy. I do not enter deep sleep stages. I also have the hallucinations before sleep. I have not slept well in over 10 years. I have been on provigil for almost a year. Provigil was great with energy during the day; however, beginging about January it has not been as successful like it once was. My doctor want me to try Xyrem. This Xyrem medication just scares me I was hoping someone had some encouraging info or comments about this prescription.[This Message was Edited on 04/09/2008]
  4. luvdogs

    luvdogs New Member

    My doctor tried me on Xyrem, but it didn't work for me. I felt awful the three nights I tried it, and had to miss work the third day. If I had to go to the bathroom during the night, I was staggering and holding onto things. I also felt really nauseous. It didn't help me sleep, because it made me feel so drugged and just plain yucky.

    Sorry to be discouraging; I know it works for some people. But I also know it is a very powerful drug, and it is a street drug.
  5. ladybugmandy

    ladybugmandy Member

    xyrem is used to narcolepsy and i think it is safe if used as directed. in my case, the drug company rep kept calling me to make sure i knew how to use it and told me not to dispose of it since it is a controlled substance.

    i think it made me nauseus as well.

    good luck!

  6. agcgmom

    agcgmom New Member

    I have FM and have been using xyrem for over 2 years and it has made a night and day differnce for me. Sleep has been the key for me. I am off most meds as long as I can sleep. I cannot tolerate a full 9ml dose as I will get sick so I take an 8.5 dose then 3 hours later will wake automatically and take a 7.5 dose. When I first started I got the dizzy feeling and it didn't help me sleep until I got up the the correct dose for me. The dose needs to increase gradually. Don't be afraid to give it a try. I hope it helps you too!
  7. luvdogs

    luvdogs New Member

    Don't let me discourage anyone. If it works for you, great!
  8. Rosebird

    Rosebird New Member

    I have Fibro and have been on xyrem since last July. It took a few months to find the right dose which made life difficult. From July to Jan. I found great improvement with sleep, alertness and pain. I only get 6 hours sleep as I wake up 3 hours after I take a dose.

    Unfortunately, my insurance stopped for a three week period and I had to go cold turkey without Xyrem. This was VERY difficult. I did not get quality sleep and my pain, fatigue and other symptoms returned. My functioning was severely impaired and I was an emotional wreck.

    I began taking Xyem again, but have never returned to feeling as well. Despite my taking the xyrem (4.5 each dose), again, I'm just not getting the same results. This really distresses me.

    I'd appreciate anyone's comments for suggestions.

    Thank you.
  9. deliarose

    deliarose New Member

    to pull up archived posts....
  10. ephemera

    ephemera New Member

    I've been taking xyrem since last summer. It is one of the few drugs that I think I can rely almost all of the time.

    I take 4.5 for 1st dose, 4 for 2nd.

    It is critical to take small incremental steps upward when starting out with xyrem. I took longer than usual for the steps as I'm very sensitive to any medications & especially to increases.

    I had not slept well for years (I have serious delayed sleep cycle & little or no stage 3/4), didn't do well on Ambien, Lunestra, all the other names I can't recall now. Saw more dawns than I care to remember.

    As for Xyrem, I can get up to get to the bathroom.

    Right now my FM/CFS specialist is prescribing this for me, but I'll probably switch xyrem over for my sleep doctor in midsummer.

    good luck in checking this out for yourself.
  11. Rosebird

    Rosebird New Member

    My neurologist prescribed xyrem; he is also the head of the sleep center.

  12. hensue

    hensue New Member

    How do you find out i live in south georgia right on the line close to tallahassee florida. Where do i need to go to find out about xyrem legally and to what kind of Dr and do i go to a sleep specialist. Does it help pain the next day if you sleep?
    No one in my family sleeps i am the only one with fibro.
    Please let me know