Xyrem -- Week 3

Discussion in 'Fibromyalgia Main Forum' started by Juloo, Dec 11, 2005.

  1. Juloo

    Juloo Member

    I am in my third week of taking Xyrem, which I'm on (off-label) for lack of appropriate levels of Stage 3/4 sleep.

    My starting prescription was for 6 mL, twice a night (mixed w/water). I've been up and down from there, trying to solve a few problems. I've found the Xyrem Success Program to be *very* helpful -- available anytime, I can talk to a pharmacist.

    I've had a little more difficulty getting info to the prescribing doctor. So I finally figured that my questions and problems might be getting garbled going through a couple of people and back with an answer, and I wrote and faxed a letter. I now have permission to try higher doses until I find the one that's right.

    I will admit, I was hoping I'd be one of the ones that ended up talking half the regular dose and only once a night. That sure would save some money! But I seem destined to be headed in the opposite direction.

    My dose for the last four nights has been 7.5 mL, twice a night. I woke up yesterday and spent the entire day cleaning the house in preparation for a Christmas party. I outdid my husband! (Although to be fair, he is coming down with something.) We had a very nice evening out with friends then the group came to the house for coffee and presents. I was up from 6:30 a.m. to 12 midnight and only got sleepy toward the end a little.

    Looks like this finally may be working in the right direction.
    [This Message was Edited on 12/11/2005]
  2. pawprints

    pawprints New Member

    Congrats on getting the right dose figured out.

    I was on Xyrem, but suffered some anxiety symptoms from it(which I normally do not have). I was told that perhaps my dose was too low since I was only getting 6 hours total sleep per night plus waking up in the middle of the night. So it was proabably more like 5 1/2 hours. I will be trying it again, because I definately had more energy while on it.

    How long do you sleep for each segment and do you take anything else with it?

  3. Juloo

    Juloo Member

    When I finally got to 7.5 mL, I set my alarm for 3 hours for the first segment, then I took the second dose and slept another 4 1/2 hours. 7 1/2 hours is the longest I've slept so far.

    It was actually worse on the lower doses. When I started on 6, I woke up after 5 1/2 to 6 hours -- that was the most I could get, and I couldn't take any naps (I couldn't fall asleep). It left me tired. When I went to a lower dose, I was even fuzzier during the day.

    The pharmacist at Xyrem said that dosing w/this drug is really counterintuitive -- that sometimes, lower doses will get you 'under', but aren't strong enough to get you into deep sleep, then you end up being sleepy all day long (but it 'feels' like a hangover). When the dose is upped, you get deep enough to get the Stage 3/4 sleep, then you are awake all day. At least, that's the effect the appropriate dose is supposed to have.

    By the way, I accidentally set my alarm for only two hours after going to bed one night -- I was so out of it when it rang that my head was spinning. DEFINITELY don't want to wake up early with this stuff!
    [This Message was Edited on 12/11/2005]
  4. pawprints

    pawprints New Member

    I think 7 1/2 hours sounds pretty good, though 8-9 would be ideal. I was thinking Xyrem was like other meds where it would be better to start low and increase, but I think you make a good point about it being opposite.

    Please keep us posted on your progress with Xyrem. By the way, which type of doctor prescribed your Xyrem? Mine was through a sleep specialist who said he has only had success with it.
  5. karatelady52

    karatelady52 New Member

    Its good to hear from you and I'm so glad the Xyrem is working.

    You said some interesting things about the higher doses. The problem I seem to have is if I take the second dosage, my stomach bothers me the next day. Maybe I will give it another chance although I'm sleeping pretty good right now.

    It sure helps to sleep deeply, doesn't it?

  6. Juloo

    Juloo Member

    Pawprints: The prescribing doctor is Dr. Bullington from the Atlanta FFC. I think the Xyrem Success program has really helped a lot -- my biggest question was, "How will I know that I've gotten the right dose? What will it feel like?" I would like to get to 8 1/4 hours of sleep.

    Karatelady52: Yes, I'm glad I stuck it out, though it was iffy there at times. I'm still knocked over by the price -- I've never had to appeal an insurance decision before, but I guess it wouldn't hurt to try. At least I think I will put my end-of-year bonus to use 'buying' myself some sleep for a few months!

    I thought that having to set my alarm to get up and take the second dose would be really hard, but the anxiety (mostly about waking up and not being able to go back to sleep again...past insomniac episodes haunt me) is totally gone.

    The weirdest part of this has been the decrease in dreaming. I know that I do still dream -- I even remember them. But they're nothing like the epics with multiple subplots I used to have -- dreams that would resonate with me for the whole day after.
    [This Message was Edited on 12/11/2005]
  7. abbylee

    abbylee New Member

    I started at 6 but dropped and rose more slowly. I'm on 8 but probably need 9 as I don't sleep as much as I should.
  8. Juloo

    Juloo Member

    I think the general approach is to start people at 6 ml + 6 ml so you can find out if you and the medicine are compatible. I had to work up to the 9 twice a night. At first, I don't think my stomach could have handled it.

    The good thing about it, since it is a liquid, you can dose 'in between' -- 8.5 or 6.5 or whatever. It's not just 3, 4.5, 6, 7.5 and 9.

    And in my opinion, it is definitely worth it to wake for the second dose. I go right back to sleep. When I haven't taken the second dose, I toss and turn the rest of the night.

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