Started Taking Xyrem

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Sep 18, 2005.

  1. HppeandMe

    HppeandMe New Member

    Hi Guys!

    I just started taking Xyrem last night. EEEEW the taste was awful. I wasn't prepared for that. No big deal though I can live with that. I thought I was going to drink this potion and be knocked out in the next few minutes. NOT! I did not get to sleep until about 5:30am. I took this around 11pm. I could not get out of bed this morning though. I slept until 12 noon and still feel groggy. I am supposed to take my son to school tomorrow morning at 8am. I'm nervous. Has anybody had this experience and will it go away?

    What has been your experience?
  2. HppeandMe

    HppeandMe New Member

  3. karatelady52

    karatelady52 New Member

    I take Xyrem but not twice a night like they suggested and I only take 4.5 ml. instead of the suggested 6ml.

    I can't imagine it taking that long to get you to sleep. Sometimes it might take me around 30 minutes but usually its more like 15 minutes. I'd check with your doctor and see what he/she says about it.

    What amount are you taking?

    Sandy
  4. abbylee

    abbylee New Member

    And it works great for me. Perhaps you should contact your doctor and tell him what happened, however, they like you to stay on it for 2 weeks before making a change.

    Someone told me that you can mix it with cranberry juice (though I'd check with the pharmacy) if you can't stand the taste. I usually rince my mouth out and take a sip of tea to get rid of the taste.

    I've had much less pain, no flares except during hurricanes, and more mobility - plus I don't fall asleep during the day anymore.

    If you can't adjust to Xyrem, I hope you'll find another med that you can tolerate as you need your delta sleep. Most sleeping pills have to be increased every few days as we tend to build up a tolerance.

    Xyrem is out of the system within 24 hours so once you've found your dose, you don't usually have to increase.

    It took about 6 weeks to work for me, and I don't know how I managed without it.


    You can speak with someone who is successfully using Xyrem by calling the hotline at 800-823-8893 between 9:00 and 5:00 Central time, and you can find a lot of information on the talk about sleep web site.

    abbylee

  5. tcluna

    tcluna New Member

    yes yes and yes!

    xyrem makes you puke if you cant stand the taste usually!

    also yes you can get real nervous and feel AWFUL after xyrem wheres off because it has something called a dopamine rebound effect. Its a neurotransmitter in your brain it makes you nervous after the gaba soothing sleep. and yeah it can take awhile to FALL asleep, but once your there, nothing can wake u up from xyrem lol.

    i dont like xyrem. it gives me infections. 10% of the side effects population got infections (viral or other) as a side effect. it is like the 4th most popular side effect. i assume its immunosupressive.
  6. HppeandMe

    HppeandMe New Member

    Thank you all for your replies on Xyrem. I think I will give it another try and cross my fingers!!! Thanks for all of the support.

    Much Love,
    Hope
  7. abbylee

    abbylee New Member

    Where did you get the information in your post? I've been taking Xyrem for almost 2 years and have never heard of most of the things you talked about in your post.

    Specifically, where did you read about a dopamine rebound effects? Also, where did you read about infections? I've had no infections in this time I've use it, and have not spoken with any other Xyrem user who has. And finally, where did you read that it's immunosupressive? These are things that the pharmacist or doctor should discuss with Xyrem patients, yet no one has mentioned them to me.

    Since I am taking this drug long term, I need to know all of the things that can happen - good and bad.

    Thanks so much for your help.

    abbylee
  8. tcluna

    tcluna New Member

    the infections part is in the side effects pamplet that comes with every bottle and online on the xyrem website. the dopamine rebound is a well known effect of GHB, it is online, if you search.
  9. abbylee

    abbylee New Member

    Thanks for the information, but I am looking at my info and can't seem to find this information. I'll try the web, as it surely exists there.

    hppeandme - If you are still having problems please call the Xyrem hotline at 800-823-8893 and ask for a fibro patient who is taking Xyrem.

    While Xyrem is one of the safest drugs that you can take for delta sleep, finding the correct dosage can take time. Please also check out the talk about sleep website as there is a ton of information about Xyrem there.

    There are hundreds of fibro patients taking Xyrem successfully and many many more Narcolepsy and Narcolepsy with Cataplexy patients taking it.

    Having said that, there are folks who cannot take it, and for whom it does not work. I am unsure as to what the alternatives are for those patients.

    If it does work for you, it should make you feel much better.
    But it won't do that overnight. I had to work with my dose for several weeks, but I finally found what was right for me and have enjoyed feeling better for over a year.

    Please keep us posted and let me know if you call the hotline.

    Thanks again, tcluna. I'll continue to look for those side effects, though I'm assuming that they must be fairly rare as you're the only person who has mentioned them that I know of.
    It's a shame you can't take it, as it has really helped some of us.

    abbylee
  10. tcluna

    tcluna New Member

    from rxlist.com on xyrem - there ya go. these are fairly common, over 10% is common at least. just based on the number of infection-type side effects at fairly high rates, i am speculating that xyrem is somehow immunosupressive. nervousness is a side effect down there which happens in 7% of patients, out of 448. So its not *too* uncommon. I am glad it helps you though. For people who cant tolerate it, neurontin and the upcoming lyrica are alternatives for slow wave delta sleep.

    A total of 448 narcoleptic patients were exposed to sodium oxybate in clinical trials. The most commonly observed adverse events associated with the use of sodium oxybate were:

    Headache 25%,
    nausea 21%,
    dizziness 17%,
    pain 16%,
    somnolence 13%,
    pharyngitis 11%, ******
    infection 10%, *******
    viral infection 10%, *******
    flu syndrome 9%, *******
    accidental injury 9%,
    diarrhea 8%,
    urinary incontinence 8%,
    vomiting 8%,
    rhinitis 8%, *******
    asthenia 8%,
    sinusitis 7%, ********
    nervousness 7%, *********
    back pain 7%,
    confusion 7%,
    sleepwalking 7%,
    depression 6%,
    dyspepsia 6%,
    abdominal pain 6%,
    abnormal dreams 6%,
    insomnia 5%