Discussion in 'Fibromyalgia Main Forum' started by hensue, Nov 10, 2006.

  1. hensue

    hensue New Member

    sandy fla apparently you live in florida. what kind of dr
    will give you this med?
  2. mezombie

    mezombie Member

    I had an appointment with my neurologist this week, and he told me that Xyrem is heavily regulated and hard for docs to prescribe, even for narcolepsy (for which it has FDA approval). He said maybe if I had a sleep study that showed narcolepsy he could prescribe it. Well, I've already had one, and I don't fall asleep during the day, no matter how exhausted (sigh). But he felt strongly that he couldn't prescribe Xyrem without actually showing that kind of evidence to ... the FDA? DEA? Dunno.

    I'm confused. I know there's a clinical study going on to test Xyrem on FMS patients. It's in Phase III, which is the final phase before getting FDA approval.

    I'm also aware that other docs are already prescribing it for their FM patients.

    So how do they prescribe it without jeopardizing their medical licenses? If I knew, maybe I could convince my doc to prescribe it for me!
  3. Daisys

    Daisys Member

    I had a sleep study which showed alpha wave intrusion disorder, which is common in FM.

    Even tho that's off label use for xyrem at this time, my doctor prescribed it and my insurance covers it.

    It involved a lot of paperwork for the doctor, so it's a hassle.

    The kind of doctor who would prescribe it would be someone who works with FM. I found one by going to the Vitality101 site and looking for a practitioner in my area. They are all trained in the Teitelbaum protocol and so are familiar with FM and CFS.

    Hope you get results.
  4. mezombie

    mezombie Member

    Thanks for your response.

    I'm going to review my sleep study again. I don't think there's any mention of any brainwaves, frankly. I've noticed with these studies it really depends on what the doctor who is actually in charge of the study is looking for. But he seemed nice and said I could always call him, so I might just do that.

    I think it's the paperwork that turned my doctor off. He's not prescribing Xyrem for anyone, so he would have to go through all the hoops to do so. I sent my doctor info on the FM sudy, so we'll see if he changes his mind.

    I'm also not clear on whether I have FM or not. I was diagnosed with it early on, but after 5 years most of the pain is gone. I'm not sure I meet the FM criteria now. The pain has migrated to my head (literally!). Now I get frequent and painful migraines.

    My doctor actually does treat a lot of FM patients, and is on the "Good Doctor" list found on this site. I'm really surprised he's not aware of how Xyrem is helping people with FM. I may have to add another doctor who is more flexible (groan).
    [This Message was Edited on 11/11/2006]
  5. mrstyedawg

    mrstyedawg Member

    I did not have a sleep study done and my doctor was able to prescribe Xyrem for me. I have chronic insomnia. I have been taking it for a week now and it isn't really doing very much for me.

    But I am going to try it for another week.

    The doctor that prescribed my Xyrem is a doctor from the Fibro and Fatigue Center in Pittsburgh.

  6. Daisys

    Daisys Member

    About it not working yet...you are probably on a very low dose so that your body can get used to it. Then you titrate up slowly so your body gets used to each dose, until you reach the dose that gives you good sleep. This can take several weeks. The fact that you don't have any negative reactions is very good. I recommend you give it 6 weeks minimum, longer if your doctor has you on a very slow titration schedule.

    It's the king of all sleep aids for those that don't have any negative reactions to it. It completely leaves the body by morning. The sleep you attain is natural, and includes the all-important delta wave sleep. Once you find the right dose for you, it will never change. If you stop, there's no withdrawal (from what I hear).

    Of course, I do read of others on this board that get good refreshing sleep on some of the other sleep aids, but I never did on any of them, even when taking several different ones on the same night. So, I feel it's worth the time to work it up to the best dose.
  7. mezombie

    mezombie Member

    I take 1 mg of Klonopin (Clonazepam), 20 mg of Sinequan (Doxepin) and .25mg Mirapex at bedtime for sleep currently. The Klonopin and Sinequan were prescribed 15 years ago and helped immensely with my insomnia. The Mirapex was added several years ago to help with Periodic Limb Movement Disorder documented by a sleep study.

    These meds get me to sleep within an hour at most. I wake up feeling like I had a good night's sleep. I don't feel nearly as energetic as I did before getting sick, but I feel much better than I did without these meds. Of course, insomnia will pretty much wreck the next day for anyone!

    I do get the postexertional fatigue common to those of us with CFS. It comes with minimal exertion of any kind: physical, mental, or emotional.

    So here's my question to you: Is there any reason for me to try Xyrem if what I'm using now works? I realize there have been advances in treatment since I was first prescribed this combination, so maybe it's outdated.

    I'm also wondering if switching meds won't cause problems. Klonopin is difficult to go off, I've heard, or at least must be done very gradually. Does one take Xyrem at the same time as going off the current meds?
    [This Message was Edited on 11/14/2006]
  8. Daisys

    Daisys Member

    When it comes to mixing drugs and changing sleep meds, I think you need to talk to your doctor. I went off klonopin to go on xyrem, but then it wasn't working for me. Mirapex is fine with xyrem, according to my doctor.

    Hope you have good communication with your doctor and get good results.
  9. mrstyedawg

    mrstyedawg Member

    daisys: I haven't talked to my doctor yet. The xyrem puts me to sleep but I am only sleeping 2-3 hours and am waking up. Hopefully, when I get to my full dosage it will make me stay asleep longer.

    I am only taking one dose a night because I have to get up a 6 in the morning to get my kids off to school. So, I am staying awake from 3:30 on.

    I should probably take the second dose.

    Thanks for the advice I will definitely take it.
  10. Daisys

    Daisys Member

    I replied to Mezombie's post, but addressed it to mrstyedawg. Sorry for the confusion! :-/
  11. mezombie

    mezombie Member

    Thanks for letting me know that Klonopin wasn't working for you. I think, as long as it is for me, I will hold off on trying Xyrem absent some evidence that it is superior to what I'm using now.
  12. Beba

    Beba New Member

    Hi daisys, would really appreciate you telling me the name of the doctor that prescribed xyrem. I have chronic insomnia and am on klonopin but it's not working. thanks very much!!
  13. Daisys

    Daisys Member

    Where do you live? There's lots of doctors who prescribe xyrem. The way I found the doctor near me was: go to Teitelbaum's website, Vitality101, and look under practitioners for someone near you. They are all trained to treat CFS/FM and are familiar with xyrem.

    Hope you get good results.
  14. jsshutt

    jsshutt Member

    Do the drs in the program take insurance? Did your insurance cover Xyrem when they prescribed it for you?
    I need to know which insurances cover Xyrem before I go to a whole different Dr and find out I cant afford it.