Sodium Oxybate - active ingredient in XYREM - for FM...Thoughts?

Discussion in 'Fibromyalgia Main Forum' started by balletdancer74, Oct 28, 2009.

  1. balletdancer74

    balletdancer74 New Member

    Hello Everyone,

    I've not been on the boards for well over a year, but I thought to post a message about Sodium Oxybate for FM.

    Correct me if I'm wrong, but isn't XYREM (sodium oxybate is the active ingredient in XYREM) otherwise known as the "date rape drug?" If so, please be careful if prescribed Sodium Oxybate for your FM as there have been many unwanted side effects such as hallucinations (even from short term use), amnesia, etc.

    I'd be curious to hear anyone's thoughts or experiences on this possibly soon-to-be FDA approved drug for FM. Seems a bit "risky."

    Oh, and I'm a younger "oldie" when it comes to both FM and M.E./CFIDS, so my mind is filled with information...but never enough. ;-)


    To healthier days,
    [This Message was Edited on 11/05/2009]
  2. cynicaldog

    cynicaldog New Member

    Yes, sodium oxybate, aka "GHB", was known as a "date rape drug" (as was the prescription drug Rohypnol). I believe this was because GHB caused sedation/short-term memory loss AND was sold over-the-counter at health food stores, so anyone with bad intentions could easily buy it. All kinds of prescription medications could be used as "date rape drugs" if the only criteria is memory loss, sleepiness, possible hallucinations: Xanax and Ativan are two which come to mind. I've taken Xanax off and on for a decade to help with sleep, and there've been a few occasions where I've lost *all* memory of an evening because of how the Xanax affected me.

    Count me as someone really annoyed by Xyrem's association as a "date rape drug", because it's caused my pain management doctor to refuse to prescribe it for me. He'll give me any pain med in existence, and any benzo, but when I requested Xyrem for sleep he acted appalled and wanted to know why I'd want to use a "date rape drug". I'm middle-aged and live with my female partner of over twelve years: why would "date rape" be associated with my use of the medication?

    All I want is to sleep thoroughly and deeply. I've tried every sleep medication and benzo available and nothing works well or works consistently. On the rare occasions I can get 8 or 9 hours of real sleep (maybe once every few years) I feel like a new person. I honestly feel Xyrem could change my life, but I may never have access to it because the media once gave it a scary nickname, long before it was ever a restricted pharmaceutical.
    [This Message was Edited on 10/28/2009]
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    My doctor and sleep doctor suggested it for me. It is the only sleep aid that is proven to increase stage 3 and stage 4 sleep. Others, if they make you sleep, don't target those stages, but you certainly can't get stage 3 and 4 if you aren't getting any sleep. The others, just by making you sleep for at least seven hours increases the likely hood that you will get some stage 3 and 4.

    Anyway, I didn't go on Xyrem because of the hassled in getting it. And Ambien CR was working for me.

    But my doctor said Xyrem is less dangerous than other sleep aids. He said if I took 15 Ambiens, I would end up dead. If I took the same overdose of Xyrem I would just have the best 15 hours of sleep I ever had. He also said it used to be sold over the counter.

    The reason it became such a controlled substance is not because of the affects on the person taking it, but because it was used to debilitate someone so they can be raped and not remember it. It was used in gaining unlawful control over other people.

    The only thing I was told to be concerned with when taking Xyrem is what if the house catches on fire. Of course, there is increase chance you won't wake up when other sleep meds. But Xyrem works so well that you need to make sure you will not need to wake up while on it. Conversely, each dose only lasts four hours. It gets out of your system quickly, which may be considered good. I have heard that some people take just one dose and don't take the second dose. Of course, that might work against the idea of increasing stage 3 and 3 sleep.

  4. bjsmit1

    bjsmit1 New Member

    I too have used Xyrem for sleep in the past. I'll go into detail later about my experiences with it, but it is quite effective.

    As others have noted, it gets a bad rap for its association as the "date rape drug". Again, I'll provide more info later, but the bad PR about Xyrem is ridiculous...
  5. lorreannhopkins

    lorreannhopkins New Member

    I was told about sodium oxybate from my sleep specialist doctor at Eastern Virginia Medical School a couple years ago because they were having great success with their clinical trials for fibro. She said patients were able to get off most of their pain meds because they were achieving deep stage sleep and experiencing substantial improvement in pain relief and energy.
    She told me the reason it has been used as a date rape drug is because it is in a clear, liquid form that can't be detected when slipped in someones drink. I think it's odorless and tasteless, too? This makes it very useful to sedate someone unsuspectingly. She did say you need to get in bed before you take it because it is very fast acting. You also need to take a second dose in the middle of the night because it is also short acting. But very effective. I can't imagine it would be any worse than when I take my Trazadone before bed-it really kicks in and makes me woozy/dizzy. I'm sure if someone found a way to slip that in my drink without me knowing it (but they couldn't because it's very bitter) that it could be considered a date rape drug. As far as that goes, ALCOHOL is a date rape drug!!! How many guys have gotten a girl drunk to have their way with her?????
  6. Ales

    Ales New Member

    In the past I bought its direct precursor GBL when it was still legal, I found no curative effect in it. You can get seriously addicted to it if you have a canister of GBL at home. I think GHB is in that respect as dangerous as benzodiazepines, slightely more dangerous than alcohol and less dangerous than opioids.
    [This Message was Edited on 11/05/2009]
  7. balletdancer74

    balletdancer74 New Member

    Hello Everyone,

    Thank you for replying to my post with your feedback. I was simply curious to know everyone's reactions and experiences with Xyrem. I also feel that the label, "date rape drug" has put a bad rap on the drug itself just like the name "Chronic Fatigue Syndrome" leads the ignoramuses out there to think we're just "tired." No, we're "weak," feel like we're being gradually poisoned (so, it's a "sickly weakness"), in pain, dizzy, unable to sleep, etc.

    I'm of the theory that one should be open (researching first, of course) to all methods of treatment whether it be drugs, alternative, etc. One approach never usually works, so I was by no means knocking Xyrem. I just wanted some firsthand feedback.

    I tried Lunesta YEARS before it was even known about in the U.S. It was called Zopiclone, and I had to get it from overseas. It was more effective than Ambien, etc., but than it stopped being as effective.

    Anyway, may we have more concrete answers and treatments for FM and M.E. soon!

    Thanks again for taking the time and energy to reply to my post! :)

    To better days,
  8. Ales

    Ales New Member

    The active ingredient of Lunesta is eszopiclone, one isomer of zopiclone. In the part of EU I live in, eszopiclone (Lunesta) is sadly not yet approved.
  9. bluegnu

    bluegnu New Member

    I went through trials and was approved for Zyrem. I tried it for a week and it kept me awake and gave me panic attacks during the day. I tried 4.5 - the highest dose recommended for me - and I laid there having hallucinations and unable to move, it was terrifying. I am back on seroquel for sleep with Clonozapam. I hear it works well for some - but not for all. And do be careful.
  10. heapsreal

    heapsreal New Member

    I have found seroquel very good, but only use it once or twice a week as it has a bit of a hangover effect, so i use it on days off and catch up sleep. I think it sort of resets the brain(helps with the tired but wired feeling). Tried using it regularly but like everything for me it stops working quickly if used like that. Also found adding lyrica really good, adding it to anything its good for sleep , but not that great on its own