update on Xyrem experience

Discussion in 'Fibromyalgia Main Forum' started by MaryCecelia, Mar 26, 2006.

  1. MaryCecelia

    MaryCecelia New Member

    March 24 began my 3rd week of Xyrem, & my 1st dose at 6mL x2. Week 1 was 3 mL x2, and week 2 was 4.5 mlx2. Weeks 1 and 2 were quite similar. It took about an hour to become sleepy, so I'd get maybe 3 hrs. of sleep before my 2nd dose. Half the nights I'd awaken shortly before alarm, & the other half, the alarm woke me. Then, I'd have to use the bathroom, would take 2nd dose, & wait 20-30 mins. to fall asleep again. Usually, I'd awaken 3-4 hrs. after 2nd dose.

    As far as the actual sleep, it has felt some deeper, but I usually awaken very briefly a couple times during each cycle because of deep, throbbing pain in my arms and/or hips. I figure that because I'm sleeping deeper, I stay in one position too long for my fibro to accept. When it's time to get up, I still feel very sleepy and want to sleep longer, but I can't. My mind is wide awake, but my eyes want to shut. However, as the day progresses, especially after my 2nd Tramadol and lunch, I don't feel as exhausted as I did before the Xyrem.

    Of the past 3 nights on 6 mL x 2, I go to sleep in about 30 mins. of taking 1st dose (so that's better), and I had one night of what felt like truly good sleep. I didn't awaken during the night hurting at all, so I had great hope; however, I ended up taking an hour and a half nap yesterday and had little energy, so I guess my sleep wasn't as good as I thought. Last night, I awoke 2 1/2 hrs. after 1st dose and had to use the bathroom. (That had not happened on the lower doses.) I did immediately return to sleep, but awoke on my own an hour and a half later to take the 2nd dose. I slept another 4 hrs. then, as still feel like I need more sleep, but my mind won't let me.

    As far as dreaming, during my 1st nights of taking Xyrem, they were pleasant and stress-free--something I hadn't known since I was a child. They soon returned to being crazy and stressful again--even during the 1st week on it.

    One big concern I have is that before I fall asleep, it's like I have trouble getting my breath. I almost feel panicky, but the next thing I know, it's time to take the second dose.

    Thank goodness I see my sleep doctor this afternoon. I have hope that Xyrem will help, but can see it will take a while to find the right doses. (Sorry for such a long post!)
    [This Message was Edited on 03/27/2006]
  2. sleepyinlalaland

    sleepyinlalaland New Member

    .......a little of my own experience with Xyrem.

    Got off to a rocky start. First night was ecstatic at realizing I'd SLEPT for 4 straight hours. Unfortunately, the 2nd dose did not induce further sleep. In the several months I've been taking it (which was very sporadic first 2 months), the 2nd dose has never worked. Has even caused me to vomit a couple times, so I no longer attempt it.

    I am now up to 9 ml., and getting 4 to 5 hrs. of sleep a night. You'd think that would still be a tremendous improvement for someone who's know only the lightest, most fragmented sleep for decades. But no. I was really hoping to experience WAKING UP REFRESHED! I DO get up earlier, because there's no way I can get back to sleep after taking it, but I am VERY fatigued (eyes were tired and extra-sensitive to light)for several hours. Like you, I do feel better later in the day...and I will say it is better than I felt pre-Xyrem by then.

    Also, I've been aware of the respiratory experience. When I first started taking it I was kind of alarmed to find myself taking in a breath upon awakening that felt like my first breath EVER! Worried, that I must have nearly stopped breathing during sleep. My doctor (and folks at Orphan Medical), assured me that wouldn't happen. Well, of course it didn't and I am no longer aware of that sensation anymore.

    So, it is still a journey and I don't know where the advantage will lie when I finish this "trial month". I was sent 3 bottles, and it's lasting a LONG time because I only take the one dose (and because in the beginning I would skip many nights in between using it).

    Thanks for posting your log.
  3. bunnyrabs

    bunnyrabs New Member

    Most of us with fibro haven't had proper sleep for years or even decades. Now a drug like Xyrem comes along and forces our brains to get the refreshing sleep we've been without for so long, and I just feel there has to be some sort of residual "hell to pay" for it; i.e., some sort of sleep debt where we cannot escape payment (including interest and penalties), and it will take longer than one night on Xyrem, one week on Xyrem to pay it off. I think it will take months or longer to pay it off.

    Healing takes time. Unfortunately, in the meantime, we have no choice but to blame the drug because that is the part of this equation that we can see and control.

    I remember reading a study once that showed something about how college students who purposely deprived themselves of sleep to study for tests, finals, etc., will spend the following night(s) mostly in deep sleep to make up for it. In other words, their brains adjusted their sleep architecture to promote recovery from the stressful event.

    Now imagine years and decades of sleep deprivation a la fibro.

    [This Message was Edited on 03/27/2006]
  4. MaryCecelia

    MaryCecelia New Member

    I appreciate you both responding. My dr. said my sleep study showed just a little apnea (although he doesn't think I slept enough during it to get a true picture), and that Xyrem could make apnea better or worse. He wants me to increase now by .5 mL instead of 1.5 mL, since I have had some improvement and few side effects. Re: pain, he does think it is because I'm staying in one position longer, and I'll have to weigh that against how I feel during the day.

    I agree about how it could take months or even years to see a true difference, when you think of how many years I've been without deep sleep. What gets me is how the dr. seems to expect a change so quickly, based on the questions he asked. Of course, this didn't hit me until I left.

    Again, thanks for sharing your responses and experiences!
  5. bunnyrabs

    bunnyrabs New Member

    "Re: pain, he does think it is because I'm staying in one position longer, and I'll have to weigh that against how I feel during the day."

    I think for those that are going to go on Xyrem, a complete analysis of your bed should be in order!!! It seems to me that when someone has a bed that doesn't quite suit their body, whether they know it or not, it may contribute to tossing and turning during the night in order for the body to find a comfortable position.

    Then when you go on Xyrem, it overrides that ability to toss and turn (which is good), but then you end up with pressure soreness from being in the same position which may be the wrong one, i.e., if your bed sags in the center you wake up with back pain, etc.

    Just my opinion but it seems to make sense.
    [This Message was Edited on 03/29/2006]
  6. MaryCecelia

    MaryCecelia New Member

    I agree, bunnyrabs, and my husband insisted I get one of the best-- the Select Comfort (sleep number bed). I've had it a year, and I still haven't found my perfect number (must not exist). It's helped me in some ways, but obviously not enough.

    By the way, I had a good day yesterday in terms of energy. I may stick with 6 mL times 2 of the Xyrem for a while longer. Thanks for your reply.