ANY ONe who has Taken Xyrem, Need help on dose

Discussion in 'Fibromyalgia Main Forum' started by place, Jul 12, 2006.

  1. place

    place New Member

    My GP (god love him) is going to perscribe Xyrem. It will be trial and error for both of us as it is our first experince with it.

    The more details the better for these next questions:

    How many days/weeks did you let laps when you were increasing the dose?

    How many grams did you increase the dose each time?

    How did you know you reached the correct dose?

    How did you know when the dose was too much?

    AFter finding the correct dose, what problems have you had and what were the solutions?

    I know its long but thanks so much!

  2. place

    place New Member

  3. Daisys

    Daisys Member

    I know you've read some of this from me. Hope you get other input too.

    I've kept a record of dosage and sleep. I'm still tweaking.
    I started with 4.5ml x 2 (2.25g)for the 1st week:I didn't get more than an hour or two of sleep on each dose at this strength, but wanted to get used to it. Right away I had less fibro fog, but not a lot of energy. (Turns out I was developing an abscess)

    Titrated to 6ml (3g) x 2 for 3 days: Just till I felt used to it, and then titrated up to 7.5ml which I stayed at for a couple of weeks or so. I thought it was enough, because I have been so sleep deprived, I figured getting 5-6 hours of sleep a night was great. Then I noticed in my notes that I still was low in energy and even drowsy. I thought it was because my dose was too high and cut back for a couple of days. Then I saw my doctor,& he thought I was not getting enough sleep or deep enough sleep. I went back to 7.5ml (3.75g) x 2 for a week and then last night I titrated the 2nd dose to 8ml. In a couple of days, I think I'll take 8ml for both doses.

    Last night I got 7.5 hrs sleep total with both doses. I did feel drowsy this afternoon. I'd like to get a good solid 8 hours on Xyrem and then more later, like an hour or two of light, natural sleep. I have a lot of sleep debt! Hubby says I owe my body big time.

    Here's where people are so different: I haven't had much by way of side effects. I had a dry mouth for awhile, but have found out I can drink more water after taking the dose and that helps there.
    Another funny side effect I have is when I'm falling asleep, my tongue feels twitchy. Actually I have a little twitching here and there, almost like pins and needles if you sleep on something (you know?) only not painful. But I really notice it with my tongue because when does a tongue ever fall to sleep on you? :) It's brief, because I fall to sleep right away once I get that.

    Another thing: I can be woken up easily, even at this high dose. I know others have probs with sleeping too deep. I don't take any other sleep aids with it. I decided to ask my husband once a week to wake me, so I'll know I can. I did wake up a couple of times to noises, so I'm comfortable that I can. I can get up and move around if I have to, but use the wall and furniture for balance, just in case.

    I've asked my doctor the same questions you're asking, and he didn't give me answers other than to say that I'm pretty good at listening to my body, and it'll be quite awhile before I need to start titrating down the doses. He says if I got 10 hours of sleep for quite awhile, he'd think that was great.

    I've read everything posted in this forum for any input I can use (which is great, I really appreciate this forum). Also, I go to the Talk About Sleep forum which really has more info in the Narcolepsy forum. It's good to learn about dosing there. The Fibro forum there is not so active. Other than that, there doesn't seem to be a lot of info yet, as it's pretty new. The people at the central pharmacy are very eager to be of help.

    Like I said, I hope you get more input from others. My opinion is to take it slow. Some say 2 weeks. I was at one dose for that long, and got pretty comfortable with it. I knew what to expect. As I'm at pretty high doses now, I'm only moving up .5ml at a time. I think I'm real close to finding my perfect dose: 4 hours of sleep with each dose.

    I'm comfortable taking Xyrem because it's natural to the brain when in a deep sleep and dissipates soon. I feel my brain will be 'retrained' as to sleep architecture and I can stop taking it.

    I'm not sure what the future holds: maybe I'll always need to have it around for relapses. But I'm already a lot less sore. I do more with my days. I'm not back to normal yet, but don't expect to be for a few months at least.

    It's been real helpful for me (and my doctor) to keep track of dose strength, how much sleep and comments on any thing that stands out about the sleep, and how I feel the next day.

    I'll be interested in seeing how you do, and hope you have as good an experience as I'm having.

  4. julieisfree05

    julieisfree05 New Member

    Hi Place,

    Sorry I didn't get to this earlier but I've been out of town and didn't see it until today..

    Here's my experience and what my doctors have learned in their prescribing of Xyrem for FM patients.

    1. How many days/weeks did you let laps when you were increasing the dose?

    I increased the dose every day until I reached the "right" dose, but eventually learned that one larger dose worked better than two smaller doses.

    2. How many grams did you increase the dose each time?

    I started with two doses of one gram at bedtime and increased it by 1/2 gram each following night. Eventually I found that the second dose was leaving me groggy in the morning, so we cut out the second dose.

    3. How did you know you reached the correct dose?

    When I was sleeping for at least 6-7 hours, no waking up from any little disturbance or having to go to the bathroom every half hour, and sleeping with no dreams! I hadn't had that feeling of falling asleep and having hours pass without waking up every 30 minutes or so in YEARS! The first time that I fell asleep, woke up, and realized that six hours had passed without me waking up, it seemed like that was the right dose.

    4. How did you know when the dose was too much?

    When my a**hole husband videotaped me to prove that I was a "danger" to our son in our custody battle! If you read my old posts on Xyrem, I explain how as I started to get more and more restorative sleep, my body began to heal. I needed less and less of the Xyrem, but didn't know it because the half-life is so short.

    I recommend that you have someone you KNOW you can trust who will try to wake you up in the middle of the night every week or so while you are taking it. This is NOT a common occurance, but some people find that after getting enough good sleep, they no longer need Xyrem. I've been off of it for five months with no return of the sleep problems, FM pain or other symptoms.

    5. AFter finding the correct dose, what problems have you had and what were the solutions?

    See above.. I started reducing the Xyrem as soon as I saw the video and eventually found that I didn't need it at all anymore.

    One last thing! My neurologist has his "Law" regarding medication: Always start with a very low dose and increase to the least amount needed!

    We started at one gram twice nightly and increase it quickly, but with very small increases (half gram). Most doctors start with FOUR grams, twice a night and that may be more than you need, or just a shock to your system. His "Law" seems to work especially well with patients who are sensitive to medication - like most FM/CFS patients.

    I still take 2mg of klonopin at night for Restless Leg Syndrome, but that's the only medication I need now.

    Look for my posts on Xyrem for more detailed information on my experience with it - and good luck!

    - julie (is free!)

    It's a mighty big word
    for such a small man.. - Rebeccan Lynn Howard

    [This Message was Edited on 07/13/2006]
  5. place

    place New Member

    Thank you so much Julie and Daisy.

    Daisy and Julie, thanks for writing again, you give such wonderful details. You both have been wonderful in helping those in need of help. I can't thank you enough!

    I get chills when I hear the effects. Only twice have I gone to sleep and woken up 4 hours later wondering where the time went (first two nights of AD for Sleep).

    I felt like a champion those two days, it was like I was 11 again with more energy than I needed.

    My mind will wake me up and I toss and turn all night, it feels like 8 hours.

    I have high hopes for this drug but I am trying to keep it reined in so if in the event it does not work, I won't be too crushed.

    I wonder if I can still take my noratriptyline while on Xyrem? That makes me sleepy and would be a great transition to wean off the AD while taking Xyrem.

    Many thanks!
  6. julieisfree05

    julieisfree05 New Member

    When I started the Xyrem it made me "aggitated" and kept me awake - although it did significantly reduce my pain levels within only a few days. My neurologist had me add back the medications I was using for sleep and RLS.

    I was taking 100mg of nortryptline and 4-6mg of klonopin.

    BUT...! These are "sedating" medications, so if the Xyrem is already sedating you, you may become overmedicated.

    From personal experience, I would warn you to be careful about adding any other sedating medication to the Xyrem until you know how it will affect you!

    I'm pretty sure that nortryptiline is "contraindicated" with Xyrem under "normal" circumstances.

    Hope this helps,

    - julie (is free!)

    If a tree fell in the forest
    and he didn't hear it
    would I still be wrong....?
    It's hard to kiss the lips at night
    that chew your a** out all day long...

    - The Notorious Cherry Bombs
  7. place

    place New Member

    The AD have given part of my life back and I am so afraid of stoping them. I wonder if I could take a moring dose of AD and rather than night?

    Thanks again!
  8. MaryCecelia

    MaryCecelia New Member

    How many days/weeks did you let laps when you were increasing the dose? In the beginning, I'd wait a week before any change and once I got to 6 mL, I waited several weeks to change, per my dr.'s suggestion. Also, he said not to focus on quantity of sleep, but on quality and how I felt during the day.

    How many grams did you increase the dose each time? My dr. said it's best to start with a low dose and increase slowly. I started at 3 mL x 2 for one week; then, 4.5 mL x 2 for a week; then, 6 mL x 2 for a week. He said the higher I go, I should increase by smaller amounts like .5, so I stayed on 6.5 mL x 2 for several weeks. Once I was at 6, the nervousness in the a.m. began, and even taking Klonopin to counteract that, I can't handle more than 6.5 mL due to the shakiness and anxiety the next morning.

    How did you know you reached the correct dose? I started in March '06 and still haven't figured out the best doses; however, I think I was doing better, in terms of energy, on a lower dose, so last night I did 6mL and then 5mL, but awoke a few times. I just don't know what to do next.

    How did you know when the dose was too much?
    The anxiety and shakiness the next morning.

    AFter finding the correct dose, what problems have you had and what were the solutions? I'm still trying to find the right dose. The dr. tells me that his patients who are on higher doses than 7 mL are the ones showing the most improvement; however, I can't tolerate it that high. Also, he says once you're to 6 and above, even .5 higher makes quite a difference.

    Good luck to you. i'm glad you're going to try it. Overall, I'm better than I was without it, but I still have a ways to go.
    [This Message was Edited on 07/15/2006]
  9. place

    place New Member

    I bet you all can't wait till I start taking it so I stop asking so many damn questions!

    No serously, thanks again for answering them. After months of reading your responces and researching the topic, I can say that I feel comfortable with the process and possible outcomes/side effects and now doseing!

    I see my wonderful GP on thursday.

    I am not sure what will result in the end of the apt but at least we are getting the ball rolling.

    I did go to a narcolepsy site and did get a bunch of info.

    To fully understand the process and the ins/outs of the pharmacy as l looked up "xyrem success program"

    From my understanding this is the very structured program all individuals/ doc's need to go through prior to getting an rx.

    Thanks and enjoy the rest of your weekend, hopefully your not in one of the heatwave states this weekend!

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