(((((Pawprints, marycecelia, meghanne, or sleepyinlalaland)))))))

Discussion in 'Fibromyalgia Main Forum' started by place, Jun 15, 2006.

  1. place

    place New Member

    How has your Xyrem going? I thought you were all taking it, if you not, sorry =).

  2. place

    place New Member

  3. place

    place New Member

    Anybody hear from them?
  4. place

    place New Member

  5. place

    place New Member

  6. place

    place New Member

  7. fibro15

    fibro15 New Member

    I know Pawprints is out of town for a family function.
    [This Message was Edited on 06/19/2006]
  8. MaryCecelia

    MaryCecelia New Member

    I'm still taking the Xyrem, but I'm not improving as quickly as I'd like; however, I didn't get this way over night, so I suppose it takes a while. This week, I'm taking 6.5 mL 1st dose and 6 mL 2nd dose. I did the opposite last week. I still feel pretty wiped out in the mornings and have trouble holding my eyes open, but after lunch, I perk up (most days) and don't even want to nap. By about 5 p.m. I feel tired again. That's better than I was doing, though, and my lower back pain has sure improved.

    When I went to the dr. last month, a nurse practitioner saw me (no explanation who she even was--I had to ask), and she acted clueless. I think I know more about Xyrem than she does. She said that since I was getting about 6 hrs. sleep with Xyrem that should be enough to help, so she wanted to add Provigil. I told her I'd tried it years ago and reacted poorly to it. (The dr. had told me to focus on quality not quantity any way.) I'm calling before my next appt. to demand the dr. see me. She went on to tell me to try 7 mL a couple nights, then 7.5, whereas, the dr. has said to try doses for a full week before changing.

    Sorry to ramble. Overall, I'm doing better on the Xyrem than I was w/o it. It's really nice to go to sleep so quickly and to have some energy during the day. I'll be glad to answer questions, if any.

  9. pawprints

    pawprints New Member

    I was taking it and stopped due to severe daytime agitation.

    I just reordered and will give it one more try. But the agitation is so bad that although the med may be helping me, I can't endure this side effect.

    I feel bad because I know it would help me.

    Sorry for the delay in getting back to you.
  10. place

    place New Member

    Thanks so much for posting!!!

    This is the second time someone has mentioned a NP. If I go to see a doc, I want to see the doc. I have had some doc's try to screen me out with a resident in training, it really puts me in a bad mood! Has it helped your body pain more than your fatigue? How much improvement to your body pains has there been? What can you do now that could not before?

    Pawprints, I am so sorry about the side effect. There has to be some balance or solution to allow you to take this med. I wonder if you could work with Julieisfree's doc via phone. He seems to be one who has a great deal of experiance with it. I have noticed more aggitation now that I am on my sleep med/AD. But nothing that I can't control. When you were taking it, what symptoms improved and in what amount of time?

    Thank you all so much for posting!!!!!

    [This Message was Edited on 06/19/2006]
  11. pawprints

    pawprints New Member

    I felt more energy and less pain. I remeber cleaning out a bathroom closet, which I never have the energy to do. But the energy almost wore me out and I could not rest during the day.

    Thanks for the idea of contacting Julie's doctor. I want to be on the Xyrem but am not sure it is the drug for me. I was also taking Klonopin with it at night and still had the bad reaction.

    Good luck. Keep us posted.
  12. place

    place New Member

    Keep plugging along and you will get there! One step at a time.

    Good luck and keep us posted!
  13. pawprints

    pawprints New Member

    I just read your bio...we share one thing..getting sick when we got married. I got so tired of every doc blaming my illness on my husband. Well, the jokes on them because he has stuck by me. But even till this day, doctors ask me if he is the problem for my being sick!
  14. MaryCecelia

    MaryCecelia New Member

    Sorry I didn't post sooner, but my 15 yr. old chihuahua died last week, and I hadn't been on much. To answer your questions:

    Has it helped your body pain more than your fatigue? For me, fatigue has always been more of a problem than the pain, but since my back pain is pretty much gone, I suppose it has helped more with pain. (Edit:Really, it's equally helped pain & fatigue, the more I think about it.)
    How much improvement to your body pains has there been? I have much fewer aches and pains.
    What can you do now that could not before? Even when I have an opportunity to nap, I seldom feel the need to do so. I actually look forward to watering flowers outside each night. I'm still not routinely exercising, though this is something I'd like to achieve.

    To Pawprints--I'm sorry to hear about your experience. Maybe your dr. could give you something to counteract the agitation??

    [This Message was Edited on 06/22/2006]
  15. bioman85

    bioman85 New Member

    hi mary,

    I might be starting Xyrem soon (waiting for approval from insurance) and was wondering why you started taking it? Did you have any trouble sleeping, or was it just from the alpha-intrusion they found in your sleep study?

    Thanks for the info.
  16. place

    place New Member

    Make that two things in common! I love my two Aussie Shepherds! I just had to put one down last fall. I still cry when I think of him. I had him longer than my husband!


    Thanks for writting back! I only have the pain issue, and you responce has given me the extra push to bring it up to my doc on Monday. He is my GP (and cousin) and I am not sure if he will be able to do it but he will point me in the right direction.

    I will keep you all posted on my quest for xyrem!
  17. gramaT

    gramaT New Member

    if you have to get off all meds to take the xyrem study?
    thats what my dr. said and i am on oxycodone etc.


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