JulieisFree05, do you use sleep meds in addition to Xyrem?

Discussion in 'Fibromyalgia Main Forum' started by sleepyinlalaland, May 10, 2006.

  1. sleepyinlalaland

    sleepyinlalaland New Member

    Hi Julie, I'm encouraged by your positive experience with Xyrem.

    Just wanted to know...do you use any other sleep meds with Xyrem, like Klonopin or Ambien? Orphan helpline says it's OK, but on another sleep message board, the popular opinion seems to be that the Xyrem is not as effective with benzos (something about they target the same gabba receptors).

    Xyrem is not good at getting me asleep, but I do sleep very soundly on first dose when I finally do go asleep (I also take .5 mg klonopin an hour before Xyrem). It has been an up and down journey, but I think I may have FINALLY addressed my last roadblock by renting (for a month) a cpap which is taking care of my serious snoring that deep sleep enabled. I am waking up feeling better.

    BUT, I never could and still can't take the 2nd dose, as it does not put me to sleep (am using 8 ml once). I would love to get the extra benefit of this dose, but don't think it will happen unless I accompany it with either klonopin or Ambien, but am kinda concerned about supplementing Xyrem TWICE a night with benzos.

    Part of the anti-benzo advice on the other board was that it caused deeper sleep problems. This is probably true, but I don't care because I went over 30 years with NO meds., and was never able to get to sleep either. Miserable.

    Getting a bit off track...you seem to have a great doctor, and am wondering if he indicated to you that Xyrem is acceptable along with an additional sleep aid.

    THANK YOU.
    [This Message was Edited on 05/10/2006]
  2. MaryCecelia

    MaryCecelia New Member

    I'm curious about this, too. I'm also taking Klonopin an hour before Xyrem (.25 Klonopin). I take 6.5 ml Xyrem twice a night and sleep better and longer during 1st dose than 2nd it seems.

    That's interesting that you rented a C-PAP because I, too, have been snoring since the Xyrem. Glad to hear it may be helping.
  3. pawprints

    pawprints New Member

    I am also curious.

    Xyrem is not an easy road to figure out.
  4. julieisfree05

    julieisfree05 New Member

    Typically, other sleep meds are not prescribed with Xyrem.

    There is a rare "reaction" of aggitation in some people, and (of course) that's what happened to me.

    My doctors typically DO NOT prescribe anything else with Xyrem - and it can be dangerous if you get too sedated! But since I had the aggitation, my neuro added klonopin and trazadone (what I had been taking) to off-set the aggitation.

    I've never heard of anyone taking another sedating medication with Xyrem unless aggitation was a problem - but I don't know everyone who's taking it! :)

    Hope this helps,

    julie (is free!)

    You can't be scared
    to risk it all
    You're never gonna fly
    if you're afraid to fall.. - Radney Foster
    [This Message was Edited on 05/11/2006]
  5. Meghanne

    Meghanne New Member

    Since I was on 20 mg of Ambien for years, the sleep doc had me slowly discontinue it while on the Xyrem, so as not to get the Ambien withdrawal. I'm down to half an Ambien (5mg) at night, and it's taken me 2.5 months to get there. So obviously it's safe, just not in the long term.
  6. thirkmom

    thirkmom New Member

    I've been following your messages on Xyrem and thought this could really help me. I got on their website and they gave me a reference number and their toll free number. They told me to call the next day and they would answer my questions. I told her that people on this website were taking Xyrem for fibro and did she have a list of Dr.s in my area that were signed up with them. I know that if my neurologist wasn't already signed up, he wouldn't make the effort for me.

    The pharmacist they had me talk to said the drug wasn't approved for fibromyalgia only the dx of narcolepsy. I explained your story of how your neurolgist tweaked it and adjusted it and how it has helped with your pain. I also told her about the clinical trials that were being done on Xyrem for fibromyalgia and she didn't know anything about it.

    It was like pulling wisdom teeth but she finally gave me a Dr.s name in Ogden who must be fairly new and the names of 2 Dr.s in Salt Lake that were in same office. They were sleep specialists and these guys were signed up on their list. I also asked if they gave Xyrem to people with sleep apnea. Of course her answer was, "it's only approved for narcolepsy." She then said, "Is there any thing else I can do for you?" Under my breath I was saying, "hell no you haven't done anything for me as it is." I was so frustrated I said No and hung up. Any suggestions on getting any more information? LuAnn
  7. agcgmom

    agcgmom New Member

    I have been using xyrem for 14 months now. It has been the best thing that I have done! I also take Ambien. My Dr wants me to take 20 mg of Ambien a night but my insurance only covers 10 mg so, I take 10 mg. The Ambien gets me to sleep and the xyrem keeps me sleeping. I get 3 hours of deep sleep with each dose of xyrem. I also take a vicodin and a just started a muscle relaxer at night too. I asked if it was safe for me to take all of this and the Dr said yes. I am sleeping pretty well and am clear headed all day. My pain has diminished a great deal and I usually don't even need an ibuprofen during the day.
  8. place

    place New Member

    14 mt! When did you start to feel like this was working. Before you started taking it, what was your health state.

    Were you working or bed bound?

    How did you progress from month to month?

    What is your current symptoms, are you able to do anything you want during the day?


    Thanks so much for posting on this board!
  9. pawprints

    pawprints New Member

    I know I asked this before but can not remember the answer. I have the agitation and since I have been on Klonopin, am continuing it.

    Do you take the Klonopin and Trazadone with both doses and what doses are you taking?

    I will have to do a search on Trazadone, as I am not familiar with it.

    Thanks again for your help.
    Shana
  10. mme_curie68

    mme_curie68 New Member

    Hi thirkmom -

    The reason they cannot discuss off-label uses of Xyrem with you is that it is against the law.

    They are only permitted to provide information on the approved indication for the drug. FDA approves the labeling, and the prescribing information. This is submitted when the drug application is submitted to FDA.

    A doctor may prescribe it for a patient as an off-label use, but the drug company can't endorse/oppose/or discuss that.

    In order to get approved for an additional treatment indication, the drug company has to do additional clinical studies and submit an amendment to their Drug Application.

    So your doctor will have to speak to other doctors using it off-label or rely on medical literature to get a target dose.

    Hope this helps.

    Hugs,
    Madame Curie

  11. agcgmom

    agcgmom New Member

    I had been diagnosed with FMS about a year before I started xyrem. I have tried many, many of the typical meds prescribed for FMS and had some horrible experiences. My FMS symptoms are typical, pain sleep issues etc. I have never been bedridden and have always worked 30 hours a week in a professional capacity. Not physically demanding. My Dr started talking about xyrem about 6 months before it was prescribed and like most patients,I was hesitant about the information I read about xyrem. I tried it out of desperation. I started on 6ml twice a night and worked up to 9. I found that 9ml was just too much for me and I still play around with my doses. I have never had to set an alarm to wake me for my second dose and never get more than 3 hours of sleep on a dose. I have always taken Ambien with the xyrem. Ambien is very short acting for me but it gets me to sleep. I also am taking pain meds just at night. I noticed an improvement in all my symptoms within a few months. I live in the midwest and the cold or damp weather still make me hurt but all in all I feel so much better. Sleep seems to be the key for me. The better I sleep the better I feel!
  12. place

    place New Member

    Thanks so much.

    I am not as severe as other are. I just get tendon pain, some foggyness and sinus/food/allergy issue. I am glad to see someone with similar issues recover on the drug.

    Thanks!
  13. pawprints

    pawprints New Member

    bumping for a response
  14. thirkmom

    thirkmom New Member

    I figured as much. What specialty of a Dr. do you see? I believe the Dr.s she told me about were sleep specialists and yet the people here are seeing a neurologist. Thanks. LuAnn
  15. julieisfree05

    julieisfree05 New Member

    Sorry for the late reply..I was out of town for Mother's Day and I'm just getting back online..

    I can't discuss what I'm taking right now, due to an ugly divorce, custody issues, and a "gag order" from my attorney, but I started taking Xyrem about a year ago.

    Due to the aggitation (a rare compilication) my brilliant neurologist added Klonopin and Trazadone to offset it and allow me to sleep. Trazadone is an old tricyclic anti-depressant like Elavil, but it seems to have fewer side effects (for me at least).

    The most effective dose of Xyrem for me was 6 grams once before bed. I took 50mg of Trazadone and 6mg of klonopin about two hours before the Xyrem and it worked perfectly until my body started healing and (we think) I became overmedicated.

    The doses of trazadone and klonopin DO sound high, but the aggitation I had was SEVERE and it took doses at that level to offset it and allow me to sleep.

    Sorry I can't be more detailed right now..

    julie (is free!)

    Forgive
    It's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
  16. bunnyrabs

    bunnyrabs New Member

    julie,

    I am curious. You have seen both Dr. Silverman, who has prescribed quite a bit of Xyrem, and your neurologist, who you highly praise for his/her work with Xyrem and any potential problems to overcome. I want to know what both of these docs think of Xyrem and its success or lack thereof based on their prescribing experience thus far.

    I ask because Dr. Teitelbaum, as everyone knows for his CFS work and books, has recently posted in his website Q&A, that the more people he puts on Xyrem, the less he is seeing good results.

    To quote him exactly, he says "The more pts that we try on the Xyrem, the lower % of pts we have that had a very positive experience with it. In the beginning it was about 7 out of 10, now I would say that it is 4-5 out of 10. Some strange side effects that it can't be continued, are prevalent. Haven't had a "wow" for decrease in pain or increase in energy in awhile."

    His observations seem to be contrary to what I am reading on this forum, and especially on the narcolepsy forums. From what I hear, a large part of the success or failure with this drug can be dependant on the approach to its dosing and titration. Do you think there is just too little feedback between doctors who are prescribing this off-label for fibro so that the trial and errors can be minimized or eliminated?

    [This Message was Edited on 05/16/2006]
  17. place

    place New Member

    This is an interesting piece of information. Why would some doc, have such great success while others have not.

    I have been paying good attention to this matter and have counted 6 people (give or take) who took the drug and had good side effects. One of them had to stop due to stomach issue while anther had CFS (not Fibro ) and it had no effect on her.

    I wonder if the difference is between CFS and Fibro, in addition to the way it is administered?

    Anyone who has taken the drug make a comment on what their doctor has reported with their success.
  18. mme_curie68

    mme_curie68 New Member

    sorry for the late reply -
    i was out of town for the weekend and left yesterday for Texas where I am writing to you now for a business trip.

    I have seen (in order)

    internal medicine doc and psychiatrist (been under treatment for other condition than FM - see my profile)
    endocrinologist docs
    Ear Nose and Throat doc (2 different ones)
    rheumatologist

    the rheumy dx'd the FM. My internal medicine doc concurs. however, due to rheumatologist being chicken to treat me because i am bipolar [never mind that I've been stable for quite some time] he sent me back to the psych for meds.

    I am now being managed jointly by my internist and my psychiatrist. The internist does the musculoskeletal meds (naproxen, cyclobenzaprine) and the psych. does the bipolar meds (cymbalta and seroquel)and the chronic fatigue meds (adderall).

    So far I have had very good improvement except for when I get my period. Then I backslide like crazy for about a week.

    I am trying to uphold my end of the treatment bargain by eating properly (avoid processed foods as much as poss.) and exercising. I try to make 3 yoga classes a week.

    Hugs,
    Madame Curie
    [This Message was Edited on 05/16/2006]
  19. julieisfree05

    julieisfree05 New Member

    What you wrote about Dr. Teitelbaum is interesting - I hadn't heard that.

    Dr. Silverman has been prescribing Xyrem for FM for at least 3-4 years. He has done at least one study for the government, and is currently a researcher in the multi-center study for Orphan Pharmaceuticals. My understanding is that Xyrem is NOT the first medication he will try on a new FM patient. FM is his specialty, but he sees FM and CFS as mostly overlapping disorders.

    My neurologist has been using Xyrem for Narcolepsy for a long time, but I'm not sure how long. He probably has more experience prescribing it, since he has used it longer. He also believes in starting with a very low dose and titrating it slowly to the lowest amount needed.

    Dr. Silverman has been limited in his prescribing by the constraints of the trials he is involved in. If a patient is in the trial, he can't "tweak" the dose or titration.

    BOTH of my doctors have seen amazing results with Xyrem in patients with both FM and CFS. I have (had?) both, in addition to MCS. All of my symptoms have resolved with this medication.

    My guess as to why this doesn't work for some of Dr. T's patients is that he is known as a CFS specialist. Xyrem is used specifically to treat the sleep disorder that is usually associated with FM - the lack of level 3/4 sleep which causes virtually every system in the body to cascade downward. If a patient doesn't have this sleep problem, the Xyrem might not help.

    As for side effects, I never experience any - other than the rare "reaction" of aggitation.

    The trials that Dr. Silverman has done have been so successful that it is possible that Xyrem will be approved by the FDA to treat FM.

    My neurologist has told me that Xyrem is the closest thing to a "cure" for FM/CFS that he has ever seen.

    They have BOTH seen miracles occur with this medication.

    I think that you're probably right about the lack of communication between the doctors who are using Xyrem off-label. The ones with the experience to titrate the dose effectively seem to be the ones who are getting the best results. Doctors who have used it for narcolepsy for years would, IMHO, have an easier time figuring out how to use it effectively for another sleep disorder.

    I am surprised that Dr. T is having so little success with it, after his adamant statements about "good sleep" being essential to treating FM/CFS. I would expect him to be in touch with the doctors who are using it successfully since he is so well connected! Perhaps it is because of a disproportionate number of "pure" CFS patients in his practice?

    I don't know for sure..

    julie (is free!)

    You keep calling me
    On the telephone
    You say you're all alone
    Well that's real sad

    Cuz I ain't that lonely yet
    No I ain't that lonely yet
    After what you put me through
    Oh I ain't that lonely yet -Dwight Yokum
  20. pawprints

    pawprints New Member

    Thanks for the reply. Any information helps me piece this puzzle together.

    Too bad not all our doctors are willing to help us like yours.

    Sorry about the divorce, but good luck with the outcome.

    Pawprints