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highlights
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/25/2009 11:03 AM (GMT -7)   
Has anyone tried Xyrem for restorative sleep ( stage 4 )?

Tolerance, side effects, healing? off meds?, etc.

Highlights

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 9/26/2009 10:18 AM (GMT -7)   
Hello Highlights. I have been on xyrem for almost 3 years to improve my sleep problems due to fibro. It has been very helpful to me. I usually wake up and feel rested but not groggy. From what I understand you do not build a tolerance to it. There are nights that I don't take it because I eat dinner too late (need to take on empty stomach) and don't have any adverse effects. There are possible side effects which are listed on their website www.xyrem.com but I think they are dosage related, at least they were for me. I take 1/2 (1 1/2 grams) of the lowest recommended dose and have no side effects. I did take a higher dose when I first started since it is trial and error and it was too strong for me, I couldn't walk. In an emergency that would be an issue so dropped it down which seems to do the trick for me. Since I am sleeping better my pain level is down and my energy level is up. I wasn't on any meds for fibro so can't say if it will help enough to be able to stop any meds. The instructions say to take split doses during the night even if you have to set an alarm to take the second one but my sleep dr said that wasn't necessary. Probably the biggest downside to it is the cost. If you are thinking about trying it check with your insurance beforehand because it costs over $700 a bottle (1 month supply at lowest recommended dose) and not all insurance will cover it. I had tried a few other sleep meds but they either didn't work very well or gave me side effects that weren't tolerable. Xyrem has been a very good med for me. I think it helps kind of reset things sleep wise also because I now sleep better on the nights I don't take it then I did before I started taking it, if that makes sense. Oh one suggestion, if you do take it mix it with diet sprite or any diet soda without caffeine. It tastes terrible when just mixed with water. The soda was my dr's idea. Good luck if you try it and just ask if you have anymore questions. I might be able to help. Lisa
If I can laugh at it, I can live with it.


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/26/2009 4:55 PM (GMT -7)   
There have been episodes of strange behavior, sleep walking and other weird stuff because this is also known as "GHB" or the date rape drug. It should only be taken under the strictest of supervision and as gecko said, it can work wonders for some. good luck with this.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 9/26/2009 5:50 PM (GMT -7)   
What Jeannie said about the street form of xyrem being used as a date rape drug is true but at a much higher dose then what's used for prescriptions. Plus to get the prescription is more difficult then getting most scripts. Can't go to wal-mart and pick it up. It has to come to you from one centralized pharmacy and you or another designated adult must sign for it. When my sleep dr first mentioned using xyrem I was concerned because of its sorted past but am so glad that I got over that. Yes you can have the strange side effects but things like ambien can cause very similar problems such as the sleep walking, sleep driving, mood changes, depression, etc. I know that personally because I had to stop using ambien because of a side effect. I really hope that its reputation of a potentially "bad" drug doesn't scare you off from trying it. Remember that all drugs can be used for "good" or can be used for "evil". Also remember that this drug is in the final trials to be labeled as a fibro drug just like lyrica is. Lisa

ps- make sure that when you start using it that the dr starts with a low dose first and goes up until you find the right dose. My dr said that they used to start at the highest dose and work down. I'm sensitive to it so that high dose would have put me in a coma!
If I can laugh at it, I can live with it.

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