Xyrem Experiences Please

Discussion in 'Fibromyalgia Main Forum' started by Meghanne, Mar 7, 2006.

  1. Meghanne

    Meghanne New Member

    What were your first experiences like? What were those first few nights like? How was it titrating your dosage to optimal? I want the good the bad, and the ugly. I've read my brochure, watched my video, and the insurance has approved it. My first bottle will arrive Thursday morning!!!

    THANK YOU EVERYONE who has stuck by me through this battle to get this.

    Trish
  2. Meghanne

    Meghanne New Member

  3. Juloo

    Juloo Member

    I posted for several weeks when I was taking Xyrem. I am now off, except for using up the last bottle that was already in the mail when I called to put my prescription on hold. For the once-in-a-while times, I am taking one dose at bedtime.

    I'll post links to my experiences here...(just click or paste into the address window if they're not active links)...

    http://immunesupport.com/chat/forums/message.cfm?id=687939&B=FM#687939

    http://immunesupport.com/chat/forums/message.cfm?id=700433&B=FM#700433

    http://immunesupport.com/chat/forums/message.cfm?id=707569&B=FM#707569

    http://immunesupport.com/chat/forums/message.cfm?id=723442&B=FM#723442

    http://immunesupport.com/chat/forums/message.cfm?id=733408&B=FM#733408

    Most of the posts have others re:Xyrem in the same thread.

    [This Message was Edited on 03/07/2006]
  4. Meghanne

    Meghanne New Member

    Thanks for the links. :)
  5. Defibro

    Defibro New Member

    Did not work for me.
    I tried for 5 days, it was hell. It took a while to fall asleep, then the second was a little better, but could not go to the bathroom during the night, all drugged out, DH had to help, I tritrated down, then up, still did not work...
    It all depends, it worked for others.

    BIG HINT: Get just enough for a week (if you can), no more, try it and see, do not get for a whole month, otherwise you will waste your money. If it works then the extra that you spent is worth it. If not you dont have to throw it down the drain.

    Best of Luck
  6. Meghanne

    Meghanne New Member

    Especially Juloo for the links. :) I feel better prepared now, hearing real stories.

    Question for anyone...did anyone get the bedwetting side effect? I was doing ok until the doctor got to that section of "the talk". ;)

    I am on Klonopin, and will be staying on it, so it was interesting to read comments on others who were taking Xyrem and Klonopin. I think I'll restrict the Klonpin to only earlier in the day and see if that helps initially, and since I'm unemployed at least I have the chance to deal with getting the dosing right for now.

    My doc said pretty much the same thing about sometimes the lower dose making you feel worse than the higher dose, and it does make sense. It was like when I took Seroquel at 1000mg (yea, you read that right) and if I got knocked out right away it was great, but if I was awake, I was sick as a dog. Not a med you want to stay awake through either.

    I guess I got really lucky that my doctor didn't even have to write a letter of medical neccesity for the insurance. They approved it immediately.

    This all went really smooth ONCE I decided to go to the out of network doctor. Got an appointment with him for the very next day, saw him about a half hour, came prepared with clinical notes and sleep diary (He was impressed), and he ok'd it immediately w/o another sleep study. Next day Xyrem pharmacy called to get my info and today it ships for delivery tomorrow morning. :)

    I MAY wait until Friday night to try it however, since fiance' is out of town for work until then. I think I might feel better if he's here the first time I take it. Just in case.

    I was told to continue the Ambien, but cut back from 20 to 10 so I don't go into rebound insomnia from that, and that as we adjust the dosage we will eventually not need it anymore. (I apologize if I repeated anything I've already posted, as it's 5 in the morning and I'm VERY sleepy.)

    On a side note. He gave me some Rozerem samples to try for the heck of it while I was waiting, and we'd really decided not to try it since Melotonin never worked for me, so we figured this probably wouldn't either, but I'll be darned if it doesn't help. He let me take it in addition to a 10 mg dose of Ambien. But it makes me really sleepy the next day.

    So it might be of use to some of you, who haven't given it a chance yet. The next day sleepiness is supposed to improve with time.

    I'll try to do as well as Juloo (though that's a tough act to follow) at posting updates, in the hopes we can all continue to help each other. I know you've all helped me greatly.

    From those who suggested Dr. Schriner and other docs, to those who encouraged me not to give up, to those who have shared their Xyrem experiences.

    I was literally so happy when he said yes I started to cry. Doc just smiled back at me, understanding my sense of relief I think. And the people at the Xyrem Success program were great at answering all my questions when they called yesterday, and making sure I was going to be fine medically on it, and no drug interactions.

    THANKS!!!!
    Trish