Question for those who cannot take Xyrem....

Discussion in 'Fibromyalgia Main Forum' started by abbylee, Oct 3, 2005.

  1. abbylee

    abbylee New Member

    What are the doctors prescribing for you if you can't take Xyrem? Are you getting delta sleep? Have your symptoms improved?

    Just curious, as several of you had said that for one reason or another you are unable to tolerate Xyrem. I hope there is an alternative treatment, as you can't go through life without delta sleep - at least I wouldn't think so.

    Are the doctors offering you any alternative sleep meds?

    Thanks in advance for your reply.


    abbylee
  2. abbylee

    abbylee New Member

  3. bunnyrabs

    bunnyrabs New Member

    HI abbylee,

    I don't think there are any other drugs truly capable of inducing delta sleep, at least not yet. I was on Elavil for years, and it was supposed to "protect" delta sleep, but it didn't do that great of a job. I believe its side effects induced as much brain fog as it was supposed to relieve due to better sleep. It did, however, give me some semblance of a useful existance.

    bunnyrabs
  4. abbylee

    abbylee New Member

    Have you tried Xyrem? I know that several members have used it, some are still using it, but some couldn't take it for various reasons.

    Surely there is something that the doctors are giving these folks -


    abbylee
  5. bunnyrabs

    bunnyrabs New Member

    I haven't tried it yet. I want to, but like others I am a scaredy cat.

    Does it actually help you FALL asleep, or just give you good sleep once you do fall asleep? I have trouble getting to sleep, rarely going to bed before 1AM.

    Once I fall asleep, I sleep through the night mostly, but it isn't restful sleep. I'm told individual muscle fibers and sometims muscle groups twitch or fasciculate randomly, but not like periodic limb movement or restless legs because it could be any muscle (like my shoulder).

    I also toss and turn quite a bit, but apparantly it doesn't wake me up, or at least I don't remember (I never get up during the night to use the restroom or get a drink). However, in the morning I'm still tired and sometimes stiff.

    bunnyrabs
  6. abbylee

    abbylee New Member

    Xyrem knocks me out, not like a sleeping pill where I relax and drift off, rather, like being put to sleep for surgery. One minute I'm awake and the next minute I'm out.

    When I wake up, I'm wide awake - NOT nauseated like surgery - just simply wide awake. No hangover, no drowsiness, etc.

    I suspect that's why these rape victims don't realize that they've even been drugged.

    The first night on Xyrem is scary because of the hype that's given this drug. There is really nothing to be afraid of, and after the first night you'll wonder why you were afraid at all.

    Please call 1-800-823-8893 and ask to speak with someone who is successfully using Xyrem. Those folks are great at putting your mind at ease.


    And keep me posted!!! I've taken Xyrem for almost 2 years and I was nervous the first night, too.

    abbylee
  7. BxGirl

    BxGirl New Member

    Hi. I take Ritalin for Narcolepsy. I still am not thrilled with the idea of Xyrem. I know you suggested I call the hotline and speak to someone who takes it, but won't they say it's great since it's from the hotline? I'm doing okay with Ritalin. I will stay on it for a while and see what happens.

    I'm mainly bummed out about the diagnosis of Narcolepsy. I found a new therapist to talk to and hopefully he'll help me adjust. I think having Narcolepsy is worse for me than the diagnosis of Fibromyalgia. It all stinks as far as I'm concerned.

    I know you like Xyrem - I just want to try one thing at a time. By the way, I don't have trouble falling asleep at night so at least that's okay!!!!

    Love,
    BxGirl
  8. abbylee

    abbylee New Member

    You're correct about the hotline, but it's mainly there for folks with questions about the drug - either for reasurance or to check out a side effect.

    I've called it and I didn't get a sales pitch, rather, she just answered my questions.

    I wish the drug company wouldn't scare people about Xyrem because it's really very safe when used as directed.

    abbylee
  9. bunnyrabs

    bunnyrabs New Member

    I don't think the drug company intentionally wants to scare anyone, why would they? I do however think they are being required by the FDA to provide an overly cautious approach to marketing Xyrem due to the bigger reason people are afraid of it: the media's portrayal of GHB. The effect of the media and other internet advocacy groups has had a major impact on my reluctance to try the drug, that's for sure.

    It's kind of ironic. The instructional video and supportive materials for Xyrem basically imply that the drug is super dangerous and should be approached like it is a weapon of mass destruction, yet the Xyrem drug rep and the doctors and nurses are more and more saying it is really safe, among the safest of sleep aids. I'm confused.
    [This Message was Edited on 10/05/2005]
  10. ephemera

    ephemera New Member

    When my sleep doc suggested I consider Xyrem I voted no. Meantime we tried Lunesta & got nowhere. Now I'm on Rozerem & after 3 weeks I haven't seen a sunrise yet, which I was on Lunesta & Ambien & on my herbal sleep pills from the accupuncturist.

    best thoughts
  11. abbylee

    abbylee New Member

    Hi - I do think the drug company wants to scare people because it's so dangerous on the streets and they don't want to take the chance that we might share it.

    My doc says there have been no serious side effects from those who take it as directed.

    I had to cut my dose by 1/2 to stop the sleepwalking etc.


    abbylee
  12. bunnyrabs

    bunnyrabs New Member

    I have read many of your posts on here, and I have never seen you mention that Xyrem caused you to sleepwalk. Is that a new thing happening with you or an ongoing thing? At what dose did it occur?

    I coudn't imagine sleepwalking. I've never been prone to it and have never done it, either on sleep meds or off. If Xyrem would make me do that I don't know about taking it then. I can just see it now: "officer, I have no idea why I am jogging down the street in the nude at 3AM. It must be the GHB I take for fibro, but I have a valid prescription for it, honest!" LOL
    [This Message was Edited on 10/06/2005]
    [This Message was Edited on 10/06/2005]
  13. abbylee

    abbylee New Member

    Hi bunnyrabs. Sorry to take so long to reply. My parents came for an overnight visit and I didn't get a chance to check in.

    I haven't said much about sleepwalking with Xyrem because I only had this happen once and I was not sure that Xyrem was really involved.

    Before my dose of Xyrem was decided, my doctor asked me to go up until I slept 3 hours after the first dose. I went up by one ml some of the time and by 1/2 ml other times.

    I worked around the 7 1/2 - 8 1/2 ml dose for a week or two, and found that 1 of the 3 nights that I took 8 1/2 ml, I found myself in the kitchen and didn't really remember getting out of bed and going to the kitchen.

    Since that happened on the 3rd night of 8 1/2 mls, I dropped back to 8 mls and have been there since with no problems.

    Sleepwalking is on the list, and I've spoken with Xyrem patients who have had a problem with it. Usually their doc lowers the dose and that stops the sleepwalking.

    abbylee
  14. bunnyrabs

    bunnyrabs New Member

    Interesting abbylee. So it was as if you just "woke up" in the kitchen and realized you don't remember how you got there? That would kind of scare me but I have woken up confused before due only to my disrupted fibro sleep and no sleep meds.

    I wonder what causes this phenomenon while on Xyrem? Have you heard of people doing this on other sleep meds, like klonopin, ambien, etc.?
    [This Message was Edited on 10/10/2005]
  15. abbylee

    abbylee New Member

    Yes,when I woke up I was already in the kitchen. I don't have a clue as to why these things happen.

    Many times when driving from one town to another, I won't remember passing certain landmarks - yet I end up where I'm supposed to be. So I must have passed them. (I don't drive now, though).

    Anyway, I'm sure we'll learn much more about Xyrem as time goes by and more people take it. Let's just hope that whatever we learn - it's good news.


    abbylee
  16. bunnyrabs

    bunnyrabs New Member

    I get that all the time as it is... Performing daily activities "subconsiously" like I am a robot set to automation mode.

    I can drive places while deeply thinking of other things, only to arrive at my place of destination unharmed. It is supposed to be a sleep deprivation thing (microsleep?), yet I find it kind of useful sometimes! lol
  17. BxGirl

    BxGirl New Member

    I am still taking Ritalin. I don't have a problem falling asleep or staying asleep. I take Mirapex for Restless Leg Syndrome. I don't know why Xyrem would be better for me.

    I'm deathly afraid of sleepwalking too. I can't imagine doing that! We have stairs in our house and I'd be afraid of falling down them.

    BxGirl
  18. abbylee

    abbylee New Member

    I would not be concerned at all about sleepwalking with Xyrem. It's very rare and is easily stopped if it does occur, by lowering the dosage.

    I don't know that it would be better for you - that's up to you and your doctor - if you're not having any problems I wouldn't change anything at all.


    abbylee