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Xyrem/GHB

Discussion in 'General Treatment' started by xks201, Dec 7, 2013.

  1. xks201

    xks201 Senior Member

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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do you have bad insomnia?
    I can't comment on xyrem, fat chance of getting a drug like that approved here.
    Im interested in anything to help sleep.
     
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  3. LaurelW

    LaurelW Senior Member

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    I used it for about six months to help me sleep when nothing else would work.
     
  4. Dufresne

    Dufresne almost there...

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    It helped me big time with just about every aspect of the disease including PEM. I highly recommend it.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    getting it is the problem for most, also the cost. What i dont understand is why it costs so much when uni students can brew up the same stuff and use it as a party drug for a fraction of the cost?? Also remember in the 1980s it was marketed as a bodybuilding supplement to help increase growth hormone and it was as cheap as chips. I never tried it buti probably should have bought a heap of bottles for later??
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Because they can and/or perhaps the tight regulation of the drug?

    GG
     
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  7. Dufresne

    Dufresne almost there...

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    It's simple enough to prepare. http://www.erowid.org/chemicals/ghb/ghb_synthesis.shtml

    I certainly had no interest in paying what Jazz Pharmaceuticals was asking for their version of the drug.
     
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  8. Tired of being sick

    Tired of being sick Senior Member

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    Lol......Did you make your own?
    If so where can I get the ingredients
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    Starting Xyrem tonight. Please wish me luck. I am scared actually.
     
  10. WillowJ

    WillowJ Senior Member

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    actually it was proposed that ME/CFS and fibro have narcolepsy in some of our population and this should be used.
    http://www.ncbi.nlm.nih.gov/pubmed/20629967

    FDA said no way: too large of population for this med.
     
  11. Tired of being sick

    Tired of being sick Senior Member

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    All about the $$$!!
     
  12. Tired of being sick

    Tired of being sick Senior Member

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    I wish you WELL.......

    Couple questions

    Are you from the US?

    What was the diagnosis?

    Did your insurance pay for the Xyrem?
     
  13. Misfit Toy

    Misfit Toy Senior Member

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    Ok @Tired of being sick -I am in your state...east coast though. Insomnia is the diagnosis. Narcolepsy, too, but from insomnia. I don't have prescription coverage. I am on SSD. I contacted SDS pharmacy and meant their criteria for getting it for $35.
     
  14. Misfit Toy

    Misfit Toy Senior Member

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    Here's what happened. I took it..and had a total panic attack. The side effects are ALL OVER THE MEDICINE. The sheets they send you. IT's enough to make you not want to take it. One of the side effects that scared me is....take it while laying down you will be out in less than 15 minutes...well, something about that scared the shit out of me plus, I thought what if I have to get up and go to the bathroom? Well, I didn't take the full amount and didn't go to sleep in 15 minutes. Because...I was scared to take full amount.

    Another major thing about this med that scares me...that coming off of it...the withdrawl can be horrible. You crave it. Well, you may say...why would you want to come off of it? Um....because. Just in case. It's the most highly controlled substance and dangerous. That =panic attack.

    The main side effects are night wetting, nausea, vomitting, diarrhea, yikes.......and mental disturbance.

    But here is what happened after I took it...I felt this sensation...it was weird. Like everything was winding down and it went over my whole body. I had a photo of my dad close to my chest because I was scared and I feel he looks over me. He's no longer alive. I totally fell asleep with that photo on me. I woke up 4 hours later...with that photo on me. I was out.

    This guy writes that when you take it it's like there is no time. You take it and you are out. Yes, but it wears off in 4 hours. I find that disturbing because you have to get up and take it again. You are supposed to set an alarm to get up and take it again. I didn't. No alarm needed. And, when I woke up...I felt hyper a little. But I took it again at about 6 am. I fell asleep around 2 am or before, I am thinking.

    I then woke up in laughter at 9. I was having a dream and laughing. That was strange. My laughing woke me up!!

    I don't know if any of this is good, but I can say this....I am tired. I don't feel awake yet completely. I was thinking I would wake up all bushytailed and smiles. No. I am beat. I want to stay in bed and watch TV or just do nothing.

    So, yeah...I am worried about a few things. Is this something I won't be able to come off of. Will it make me depressed? Will I wake up after 4 hours and need to take it again. I like to sleep. I don't like waking up. I want to sleep through a night.

    Even though my sleep sucks due to pain and other things...when I do sleep, I sleep. I sleep like 8 hours straight. I like that.

    @LaurelW -did you have a hard time coming off of this and what was your experience? I can say this much....my pain is less right now. I was in pain last night...major. Right now it's less.

    I still feel anxious about the whole thing. IT's a whole new world. They have nurses to call tomorrow and people you can talk to who are on it. To help you through it. I am going to utilize that.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i would think putting u to sleep quick would be a good thing??
    When i first started using stilnox/ambien it would knock me out in less then 15mins easy. It use to keep me asleep the whole night but now works for 2-3hrs, i find it only really good for sleep onset not sleep maintenance.

    I dont have any experience with this at all but if u were worried about long term side effects or having withdrawal symptoms from long term use, maybe consider using it only a few nights a week eg mon/wed/fri. Maybe use something else on the other nights?

    Also it may take awhile of consistent good sleep before u start feeling more refreshed from it. One night of sleep isnt going to make up for many years of crappy sleep??

    Im not advising this and probably should talk any changes over with your doc, but i remember a thread from somewhere, not even sure it was here, anyway, they didnt like the waking up after 4hrs etc and redosing. From memory they used another med with xyrem to help them stay asleep longer, i think it was just another longer acting benzo, but im guessing. Again talk all this over with your doc.

    I do remember reading people waking after 4 hrs and feeling hyper, sort of like a rebound effect i guess, again im guess but it was something like it increase dopamine and when the xyrem had left one had extra dopamine in their system which would hype them up.

    Im interested to see how u keep going with this treatment as i would like to try it myself if its ever approved here in Oz.
    Wow thats great you got it cheap.
    good luck.
     
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  16. Misfit Toy

    Misfit Toy Senior Member

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    http://fr0gman.wordpress.com

    Above is a really good blog about GHB/Xyrem. It's good. The woman who writes it really likes it and is honest about it ...albeit good and bad.

    Also, had last dose of Xyrem at 6 am. Unable to want to get going. Exhausted. So....jury is still out. Pain level...so much less.
     
  17. Misfit Toy

    Misfit Toy Senior Member

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    @heapsreal -I would have gotten past that but what actually happened today was as the day wore on...I became SO ANXIOUS. Like anxiety through my body and in every way. I could not concentrate. My head was spinning and I started feeling hyper, and like I was floating when I was walking. I have no idea.

    I called my doc and he said it was a rebound affect. I am not sure what to do about this but I can't take it tonight. I felt too anxious and 2 ativan didn't touch it. I am starting to feel like I am not hyperventilating. I was a mess earlier. I got out of my apartment because I couldn't take being in there and just thinking...racing thoughts.

    The sad part is my doc knows nothing about this med. He prescribed it because I wanted it. But, he doesn't know what it does....too much or what it could do. So, I am to call the pharmacy tomorrow to find out where to go from here. The Xyrem pharmacy. They have nurses, etc that can talk to you.

    Also, I take Klonopin at night for sleep.

    The good news is that I had hardly any pain today. My pain was an 8 yesterrday. It was so high. It knocked my pain to the curb. I am really upset about this because I have traded one thing for another. Pain for anxiety.

    Do you know where you read what you wrote above? The people that were anxious? I need to learn about this as much as I can.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    That review was interesting, seems to have changed her life for the better in a few ways with energy to exercise, weightloss etc.

    I guess most people use this for severe chronic insomnia or narcolepsy, maybe the effects in cfs/me are different ie we do have sleep problems and improved sleep helps but we have other issues going that cause fatigue and other symptoms. It seems like one of those things one has to try to see how it effects them.
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    All over the packaging,,,,the most major physical side effects are nausea, vomiting, slow breathing, lower breathing...etc. For many of us.. those with CFS, I don't think that many of us can tolerate that. The 2nd and most "stand out" symptoms are mental. "Depression, hallucinations, sleep walking, unusual or disturbing thoughts, anxiety or thoughts of trying to kill yourself." 3rd side effect in bold "Sleepwalking."

    One guy actually suggests you hide your keys so you don't drive while asleep. OMG.

    Anyway, going to call tomorrow. Still have no pain. Love that. Feel much better...now that I am 17 hours further from having taken it.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Z drugs can have the same effects but they are overblown for many??
     

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