xyrem, your experience?

Discussion in 'Fibromyalgia Main Forum' started by an1000, Aug 19, 2006.

  1. an1000

    an1000 New Member

    i've only taken xyrem for 2 days so far, but i've slept worse on it. i'm taking 4.5 ml. i sleep on most sleep meds, i just get a hangover from them. so i was hoping xyrem would allow me to sleep without a hangover, but i'm not sleeping well on it period. is this something that will get better on xyrem? i know it's a potent dose b/c i definitely feel intoxicated from it.
  2. ritatheresa

    ritatheresa New Member

    My dose is alittle higher 6mlx2, I also had trouble falling asleep the first night,

    I've been taking Trazodone for years and just stopped.

    When was your last meal, from what I've read that could have alot to do with it. You shouldn't have anything to eat 4 hours before your first dose.

    Like I said, I am so new myself, good luck with tonights dose. Nice to meet you, Ritatheresa
  3. Daisys

    Daisys Member

    I didn't sleep much on 4.5ml x 2 either. But it's important to allow your body to get used to xyrem and so you titrate up in doses until you find the best dose for you. It takes commitment to make xyrem work for you, because you need to let your body become used to it to minimise side effects before you get to the strength that will help you sleep.

    Each dose I took I would feel it's power and then it would settle in and feel less strong and I'd sleep less. That was when I would titrate up.

    Have you done a search here? There's info you can access from earlier posts.

    Hope you have success!
  4. wildflowers2

    wildflowers2 New Member

    I had HIGH hopes on this stuff. HOWEVER....
    it made me vomit, I felt worse than I started, I had awlful headaches and felt like crap for days fter trying the crap.

    So, I wasted 50.00 on this trial and error oink,oink
    guinnia pig sh*t.

    Antidepressants do case sleep problems as well,,I stopped taking zoloft and sleep MUCH better.

    like I feel rested in the morning..

    Remember WE must be our own advocates for OUR own health care..

    Doctors make MORE money on the scripts they write.

    And that is a fact.

  5. sleepyinlalaland

    sleepyinlalaland New Member

    Actually, it was a lot longer than that, because I only had a one month supply....but I went off, on, off, on.

    It was hard getting used to and I was disappointed that it was not the quick fix for me I was hoping for. However, it did get better for me the longer I took it, even with big gaps in between taking it.

    I still did not get enough sleep on it, and the 2nd dose never put me back to sleep. But I've been an insomniac for a VERY long time, and I think that was part of the problem with the process of correcting this huge sleep deficit. At least I did get to the point where I did not feel WORSE the next day, and some days began to feel BETTER.

    I do hear that many need MONTHS of treatment before their body truly begins to adjust. I think ideally a year would be a good trial, and I'd go for that myself if not for the cost factor. Just cannot finance such an experiment on myself.

    While I'm very heartened to hear of those who experience "a new life" on Xyrem, I think doctors need to educate patients more on the difficulties of getting used to it. Probably it's because they don't know themselves, and reactions are so individual.

    Overall I think the trend is upward, and I'd encourage you to stick it out a few weeks.

    best, Sleepy
    P.S. another factor is having to keep to a work schedule...If I'd had to work, I'm sure I would have needed to miss at least a week's work, because I felt in such a stupor during those first days!
  6. ritatheresa

    ritatheresa New Member

    So far it's been like 5 or 6 days, I'm feeling better.

    I do have to work and I've been making it in.

    The one thing I'm very excited about is being able to wake up before the alarm. This last year was horrendous getting my daughter to school. I thought they were going to call the authorities on me, seriously. She was late more than on time, by far. My daughter would get so upset, it would break my heart. So that in itself has been giving me so much hope. Maybe this school year will be better.

    The fatigue is better, I'm still tired but not like before. It seems to be getting better and better.

    My daughter is actually spending some time at her Grandma's and tonight I'm going to sleep at my sister's again just to make sure I'm not getting oversedated.

    I had some slight anxiety but it passed, I also have a tendency towards depression so I'm trying to be on the look out for that as well.

    I'm trying to go slow on the dose, it seems as if alot of the problems people have are dose related. Which is really hard because there is no solid rule, each person is different.

    Sorry if I'm rambling but that's how it's going for me so far,

    How's everyone else, Good I hope!!! Have a good day. Ritatheresa
  7. Daisys

    Daisys Member

    That's great! I'm glad you're doing well on it, and hope it continues.

  8. ritatheresa

    ritatheresa New Member

    I hope your doing good also, Ritatheresa
  9. sandyfla

    sandyfla New Member

    I have been on xyrem for a little over two months now. I am now on 9 ml per day. I started at six ml. Believe it or not I did better when I went from 6 to 7.5ml. It took a little while to get used to the 9 ml dose but I am sleeping well and feel like I have more day time energy. Check with your doctor regularly it takes a while to get the dose right. For some reason the higher dose made me less intoxicated when I wake up. I got lucky because my doc also has sleep apnea and narcolepsy so he has studied this medication and also uses it himself for treatment.
  10. gatorlass

    gatorlass New Member

    I am curious about Xyrem. Like most of you I have FM and definately have a sleep disorder. I was dx with FM in 1987 and have been on several meds over the last 20 years. At the moment I am taking 50mg Elavil, 100mg Ultram, and Inderal for High Blood Pressure. I have called my Dr. about the Xyrem and am anxiously awaiting a reply. In all these years he has never had me do a sleep study. He also has never recommended different meds. He says the only meds that work are the Amitryptaline (Elavil). Maybe I need to switch Drs.! I'd love to hear about anyone's experience with the Xyrem that have not already posted (i've read all the posts so far)

  11. marmayer

    marmayer Member

    I have been on xyrem for months now and I believe it is the reason for my vast improvement. I did stop trazadone 300mg and decreased my effexor down to 75mg. I think the different antidepressents tend to interfere with sleep also.

    Xyrem has a support line thst is very good with questions and they encourage you to call. You need to be patient with the titration of the doses too.

    Now I take nothing for pain!!!! My energy is so much better too. When you start sleeping regularly you start to repair yourself-just like normals. I urge you to stick with it and relax.

    I was also able to decrease my supplements from the FFC this last visit which is also a plus! Good luck!
  12. gatorlass

    gatorlass New Member


    How do I get in touch with the xyrem support line??

  13. marmayer

    marmayer Member

    Their phone# is 1-866-997-3688.