No stage 4 sleep at all Xyrem w/Apnea?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by -Eeyore-, Sep 5, 2007.

  1. -Eeyore-

    -Eeyore- New Member

    I have had 3 sleep studies done and I didn't get any stage 4 sleep at all in any of them. Minimal Delta sleep. It was determined that I have sleep apnea. I can't breathe well through my nose (having it reconstructed next month)and I need to use the full mask. I am not tolerating the CPAP or BiPAP. One of my docs wants to try the Xyrem for the Fibro but the Sleep doc says not until I can tolerate the machines.
    My apnea was moderate in two of the studies. 16 events an hour or so on one. 20 on another. BUT I was on methadone during one of the studies and I had averaged 70 per hour with a CPAP on! I think this might be why the sleep doc is so hesitant about letting me try the Xyrem. Any experiences out there with Apnea and Xyrem? I'm thinking that I might not fight the machine as much if I were getting deep sleep.
    Thanks!
    -Eeyore-
  2. Juloo

    Juloo Member

    But I kind of agree with him -- for me, Xyrem seemed to 'relax' my breathing mechanisms...but if it is your tendency to not breathe, you don't want to relax any more than that! I've had two sleep studies, minimal Delta (like less than 5 minutes stages 3/4 for an entire night), and I feel much 'safer' using Xyrem when I'm using a cpap. I know the machine will push the air in, even if the Xyrem relaxes me a little more than usual. Don't know if that makes any sense![This Message was Edited on 09/06/2007]
  3. meditationlotus

    meditationlotus New Member

    to using nose tubes, because the masks drove me crazy. I was able to sleep much better that way, and after a few days, I start to feel more rested.

    But guess what. After a few days of feeling more rested, I always get something that feels like resporitory influenza, and I have to stop using the Bi-Pap. This happened with the mask, as well. So I've put the Bi-Pap in my bedroom closet and given up.

    I periodically have a chronic sinus infection or allergy (yellowish, green discharge), which I am treating with vitamins, grapefruit seed extract, and ginger. Don't know if this is causing the problem. And yes, I clean the contraption thoroughly, daily, and according to instructions.

    I no longer have health insurance, so can't consult sleep doctor anymore.
  4. ephemera

    ephemera New Member

    I don't have apnea & i don't know about CPAPs, but fyi, I just started xyrem last month & I've been impressed.

    I, too, never got any stage 4 sleep in my tests. So far I'm sleeping well about 75% of the time. Other times I can't sleep for hours even with the med due to pain & sensory overload.

    Best result is my mood is much, much improved.

    best thoughts
  5. mathetesjc

    mathetesjc New Member

    My pain specialist wanted to put me on Xyrem for insomnia because he believes, as many do, that sleep is key to pain relief etc. He sent me for a sleep study to rule out apnea before prescribing Xyrem. We didn't believe I had apnea as I do not snore and weigh 93lbs. Ironically it turned out that I had moderate to severe apnea, 30 episodes an hr., and even with a cpap never reach stages 3 or 4 sleep. I was on Neurontin, Ultram, Vicodin, Xanax and 75 mcg fentanyl patch. He prescribed Xyrem with cpap but my sleep was very unrefreshing, it felt like being anesthetized rather than sleep, and I woke to a very bad headache that kept me in a prone position until the full four hours before the next dose or after the last dose had passed. I gave up on the Xyrem and the cpap because I could not tolerate a face mask (it felt like it did when I was a kid and stuck my head out the window of a fast moving car and could not catch my breath). The small nose "mask" dried out my nose even using the moisturizer for it inside my nose did not help; and the hose felt like I was trying to sleep with an anaconda. I weaned myself off the Neurontin, Ultram and fentanyl patch and take Vicodin 4 x day, Xanax 1 mg 3 x day and 2 at bedtime for panic and insomnia respectively. Cannot tolerate any SSRI's. I have learned to distract myself and ignore more pain and have stopped worrying about whether or not I sleep. This has helped. Dealing with the results of lumpectomies now. Life just is what it is and I decided to take it as it comes. The cpap is in the closet. I have spoken to others for whom Xyrem has worked wonders. I read that only 30% of cpap users were still using their machines 1 yr. later. Just sharing my experience since Xyrem, cpaps and no stage 4 sleep appears to be rare when speaking to others.
    [This Message was Edited on 09/06/2007]