Xyrem Starting to Work

Discussion in 'Fibromyalgia Main Forum' started by Meghanne, Mar 15, 2006.

  1. Meghanne

    Meghanne New Member

    Last night was the best night so far. Up to 5.5ml. So I'm starting to see improvement. Not perfect yet, but we've got lots of room to go with the dosage yet. I'll be calling doc again tomorrow to get the next dose.

    The headaches have already stopped, but I've noticed a dryer mouth as the dosage increases. However, hoping that after the septoplasty has healed I'll be breathing through my nose again and won't dry out my mouth so much. :)

    Otherwise no other side effects, and I feel fine during the day.

  2. Juloo

    Juloo Member

    Take it slowly, and soon I hope you won't even be thinking the word 'tired' during the day. It was quite a change for me when that happened!
  3. bunnyrabs

    bunnyrabs New Member

    Thanks for the updates Trish! Keep 'em coming!

    What's does good sleep feel like?
    [This Message was Edited on 03/15/2006]
  4. MaryCecelia

    MaryCecelia New Member

    I'm so glad to hear of your progress! It gives me hope, as well. I had my 1st really good day yesterday in terms of not feeling so exhausted. I still do in the morning but know I have a ways to go in finding the right dose, as I'm still on 3 mLs times two. I plan to call my dr. today re: increase. No headache today. I'm still having long, stressful dreams but a couple nights, for the 1st times in ages, I had pleasant dreams. I've also noticed having hopeful, positive feelings throughout the day
    I also want to mention that I've been taking Pro boost for several weeks, so it could be having an effect, too.
    Take care.
    [This Message was Edited on 03/16/2006]
  5. Meghanne

    Meghanne New Member

    That even though I was nervous last night so didn't sleep much, the sleep I had was deeper because of the Xyrem, so I feel fine today and less sleep than I normally would.

  6. bunnyrabs

    bunnyrabs New Member

    How's it been going so far?
  7. Meghanne

    Meghanne New Member

    I'm up to 6ml now, and the nurse told me to increase by one ml each week up to a max of 9ml. (That's x 2 of course) She told me to just check in with them as I did so they could notate it in my chart, and we could make sure I didn't run out of medicine.

    No more side effects at all, and feeling more energetic. I've gone three days now without a nap, and that included yesterday when I had to get up at 6:00 to start all of my pre-op stuff.

    I don't feel hungover/drugged or anything during the day at all.

    Dreams on the other hand can be a bit intense I'm finding as we creep the dose up. I'm hoping as the dose gets past a certain point that I won't keep waking up every time I have one. :)

  8. Juloo

    Juloo Member

    I'm so glad you are finally getting the benefits. I fervently hope (with many fingers crossed) that this will continue to work for you. Your body will have so much more potential for healing if you are getting good, deep sleep.

    Keep us updated!
  9. marw

    marw New Member

    That is terrific news that you have found something that is helping you! It is so encouraging any time to see someone finding good meds! I hope you will keep us posted.

    Can you tell me what it is? Is it a sleeping pill? Or an anti-depressent? I have so much trouble sleeping as well as pain, but I have not heard of Xyrem.

    Thanks so much.

  10. Meghanne

    Meghanne New Member

    Xyrem is Sodium Oxybate, what that really is, is the drug called GHB on the streets, the "date rape" drug. With Xyrem they've added a Sodium content (quite high) so that it has a severe taste, and can't just be slipped into someones drink like the drug on the street.

    The FDA has approval on Xyrem as a Narcolepsy drug, specifically for cataplexy. It induces sleep, and puts you into the deeper levels of sleep that fibro patients typically do not reach.

    There have been three (so far) double blind studies showing effectiveness of Xyrem in fibro patients for sleep AND pain, and the pharmaceutical company is now doing their own reseach to potentially get FDA approval as such. Right now it's an off label use, which means it's still perfectly legal to use for it, just that the FDA hasn't endorsed it as such yet.

    It's a liquid, that you mix with water or juice/koolaid (better for the taste :) ). You take it at bedtime, then a second dose 2.5 to 4 hours later. It's short acting, hence the second dosing. Typical dosing starts at 3-4.5ml twice a night, and goes up to a max of 9ml twice a night. Right now I'm on 6 and can go up one ml each week until I reach 9 if I need to.

    It is distributed by only one pharmacy, thus done through Fedex, as it is highly controlled as a Class III drug.

    Um, does that answer some questions? I just got up, so I'm still fuzzy headed in the sinuses. *chuckle*

  11. bunnyrabs

    bunnyrabs New Member

    How's it going Trish? How long are you sleeping on each dose now?
  12. Meghanne

    Meghanne New Member

    Gradually better and better except I only managed four hours of sleep last night. :( I think I've got some pre-surgery jitters starting though, so we'll see how the rest of the week goes.

    I know I shouldn't nap, but I doubt I can make it all day with out it, with only four hours.

  13. bunnyrabs

    bunnyrabs New Member


    What surgery are you having? Are you going to have to stop Xyrem around the surgery?
  14. Meghanne

    Meghanne New Member

    I'm having a septoplasty. I have to ask about discontinuing it tomorrow. If the doc doesn't know, I'll call the Xyrem line.

  15. bunnyrabs

    bunnyrabs New Member

    HI Trish,

    I had to look up that procedure,lol, had no idea what it was. It doesn't look fun that's for sure.

    I am curious, did you ever have a sleep study, or were you just prescribed Xyrem outright? How is it going still?
  16. Meghanne

    Meghanne New Member

    I've had two in the past, that both were negative for any obstructions or apnea, so fortunately they didnt' make me have another one, which is REALLY good, because I had to go out of network (PPO) to see this doc. :)

    I was prepared for the visit with a list of symptoms, past history, meds, etc. And that seemed good for him. I also listed things we've already tired for the insomnia, etc. :)


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