Xyrem questions

Discussion in 'Fibromyalgia Main Forum' started by jbgoth, Aug 6, 2006.

  1. jbgoth

    jbgoth New Member

    I took my first dose of Xyrem last night. I was suppose to take 6ml but i only took 3ml. It didnt really make me tired. It made me VERY relaxed though.

    My doctor told me to take my Lunesta with the Xyrem but i was afraid to. But, since i wasnt falling asleep, i took 1/4 of my Lunesta, i finally went to sleep for 3 hours. I usually ALWAYS sleep through the night. So, i took my second dose of Xyrem and slept for 4 more hours. I woke up at 6am (which i NEVER DO) and didnt feel tired. I actually feel refreashed even though i woke up in the middle of the night.

    I usually take Lunesta, Elavil and sometimes Flexril so that i can fall asleep.

    How many of you take other drugs with the Xyrem?

    Also, i dont want to just add another drug to fall asleep. Has anyone used Xyrem and found that they needed less of it and could sleep on their own? I dont want to become dependent on another sleep med, especially Xyrem.

    I do feel like i slept better than i have in years.

    Also, does it really matter how much liquid you use to mix it? I mixed mine with some soy milk and stevia. I couldnt even taste the Xyrem.

    Sorry for all the questions.

    Take care,

    Jordan
  2. Daisys

    Daisys Member

    Don't be sorry, those are all good questions. :)

    First off, having something in your stomach when taking xyrem will interfere with it's absorption. Since xyrem has such a short half-life (45 minutes only) the slow down will mean a lot of it's strength will be gone by the time your body makes use of it.
    The recommended time from eating to taking xyrem is 4 hours. So drinking the soy milk may have put off the effect of the 1st dose.

    I know some find xyrem unpleasant, but I haven't. And the amount of water suggested (~1/4 cup) is simply to dilute it. After drinking the dose, it's a good idea to take a couple more sips and swish it around and swallow it. That's to prevent any corrosion of the enamal of your teeth.

    I stopped all other sleep meds before I went on Xyrem. I slowly titrated up til I was falling asleep within a half hour (usually), and sleeping close to 8 hours every night.
    After 8 weeks, I think I've arrived at my optimum dosage.

    If you have alpha intrusion sleep disfunction, Xyrem isn't just another sleep med. It retrains your brain on proper sleep architecture. Some later stop taking it and have normal sleep/wake patterns continue. There's hope that xyrem can help you heal, so that you won't need drugs at all after awhile to sleep well.

    Feel free to ask more questions as you make this work for you. There's a few here who have experience to help you out.
    [This Message was Edited on 08/07/2006]
  3. deliarose

    deliarose New Member

    under Xyrem.. there are several threads already...

    check out talkaboutsleep.com... because narcoleptics have been using the drug for several years now.. and have much more experience.

    I wouldn't mix with anything other than water ...stick to the rules.

    Also, i find a banana helps in teh morning with the rebound anxiety or wired feeling.

    Delia
  4. ulala

    ulala New Member

    from the two replies. I second Daisys suggestions not to mix the Xyrem with anything except water. Best to take it on an empty stomach because it will work better.

    Very important to rinse your mouth because it will at at your tooth enamel. It did mine so I now swish water several times before falling asleep.

    Try the Xyrem again tonight on an empty stoamch and see how you do.

    I have found that Xyrem does not mix with Baclofen and Clonidine.

    If Lunesta works with it for you that is great, but you may not need it. My doctor just prescribed Rozerem for me because I was waking up too many times with the Xyrem. I haven't tried it yet. I'll probably do what you did, just take a quarter of the Rozerem to see how they react.

    I take 6.3 ml's 2x a night.

    GOod info to do a search on this site for Xyrem. Juliesfree has posted a lot about Xyrem. I think she was able to stop and resume a normal sleeping pattern.

    Good luck!





  5. julieisfree05

    julieisfree05 New Member

    Hi Jordan,

    I've got experience with Xyrem and taking other medications with it.

    I started at 1 gram, twice nightly (my neurologist ALWAYS starts patients on very low doses and increases it slowly). Instead of making me sleepy, it made me "aggitated", but after only three nights my pain was virtaully gone.

    When I talked to him, he stressed that Xyrem is NOT a sleep medication! It is a "Central Nervous System Depressant". Although it was depressing my CNS enough to relieve my pain, I had a fairly rare reaction of becoming aggitated.

    We added back the Trazadone and Klonopin that I had been taking to improve sleep (they weren't helping without the Xyrem) and I slept very well after that. My optimum dose was 6 grams ONCE before bed. The second dose left me feeling tired in the morning.

    The more "good" level 3/4 sleep I got, the less Xyrem I needed, but since the half life is so short, I didn't know it. My other "Xyrem" posts explain what happened, but basically I started tapering off of it and haven't needed it since Feb 2006.

    I still take 2mg of Klonopin at night for Restless Leg Syndrome, but other than that I don't need any other medications! I was able to stop the medication that I had used to prevent migraines since 1990, and I haven't need prescription pain medication in months.

    My understanding is that most people need Xyrem for the "long term", but being able to go off of it after a while is NOT unheard of.

    One problem I was having was getting headaches in the morning from low blood sugar, so my neurologist advised me to have a protein snack fixed and eat it about 10 minutes after taking the Xyrem. That stopped the morning h/a's, and allowed for the absorption of the Xyrem on an empty stomach.

    My biggest warning is to make sure that you have someone you TRUST try to wake you up every couple of weeks, to be sure that you aren't becoming over-medicated as you get better.

    This medication can be very effective when used properly, but there is a chance of becoming overmedicated if you start to get enough good sleep and that CAN be dangerous.

    I hope you find that it helps you as much as it did me!

    - julie (is free!)

    Forgive
    sounds good
    Forget
    I don't think I could.. - The Dixie Chicks
  6. deliarose

    deliarose New Member

    I was curious about the other people in the Xyrem study you were in. Have the results of teh study been published?

    Are most of those folks still taking Xyrem?

    Do most FMers or CFSers need this medication forever?

    Cheers
    Delia
  7. Daisys

    Daisys Member

    Those are my exact questions. I was under the impression that taking Xyrem for FM would heal the hypothalamus and therefore could be stopped after 6 months to 2 years, depending on how long the person has had the illness.

    But whatever causes the hypothalamus to remain depressed after a trauma could happen again, so I figure the risk of relapse will always be there. That's possibly the genetic component to this illness.

    Also, I wonder about how to stop taking it, when and if the time comes.
  8. jbgoth

    jbgoth New Member

    Daisy,

    Since the soy milk was a liquid, i tought it would be ok to use. I guess now that i think about it, you are right. I will have to just mix it with water.

    I would be great to re-train my brain to sleep. I would love to be able to sleep on my own. But, at this point, i really need to get "good" sleep. I am fighting lyme disease so i need to give my body all the energy it can get.

    Delia,

    Thanks for the tip on the website. There is a ton of information there. I actually felt pretty good this morning for a change. I do have a slight headache, but, that could be from anything.


    Ulala,

    My goal is to get off ALL sleep stuff. I guess thats everyones goal.

    I think i should ween myself off the lunesta. I dont want to have WD's from just stopping it. I do not like waking up in the middle of the night. I would love to be able to skip that second dose. This is all so confusing.

    Julie,

    The way you took the xyrem sounds really good. Taking it once a night would be wonderful.

    I know my doctor was trying to increase my growth hormone.

    I mentioned earlier, that i have lyme disease. I havent had a sleep study done, but, i strongly feel i do not get any "deep" sleep.

    I read somewhere that you felt the xyrem, "reset" your body.
    I guess i was hoping that something like that might happen for me.

    I worry so much about mixing meds, so, i always take less than im supposed to. It seems you have to figure out the xyrem.

    So, its not a sleep med? I wonder how people "sleep" on it then? I dont really understand this. I guess that is why my doctor told me to go ahead and keep taking my lunesta.

    Im glad that you are doing so much better!!!!!!!!!!!!

    Thanks again everyone,

    Jordan






  9. deliarose

    deliarose New Member

    is that Xyrem allows your body to get stage 4 (or mebbe 3 as well) sleep which allows teh body to produce growth hormone which then in turn triggers the body to produce some other substance that is critical for mopping up viruses and such like.

    Not v. scientific.. just paraphraising my doc...

    I have alos heard from other CFSers that sleep meds don't work well in PWC because of hypoxia.

    Perhaps once you have eliminated the underlying problems, the obstacle to natural sleep is removed..and u can go back to sleeping normally.

    Just a guess....
  10. deliarose

    deliarose New Member

    I got a headache after my first nite on Xyrem,but not since.

    Also, if u noticed on the sleep boards, they say there are more complications with Xyrem at a lower dose.. and they tend to ease off as you slowly titrate the dose upwards.

    That's also where I got the banana tip.. The woman said a banana or orange juice helps in the morning with the wired feeling.

    Good luck
    Delia