Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Xyrem's affect on cortisol

Discussion in 'Sleep' started by drew, Apr 20, 2015.

  1. drew

    drew

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    Does Xyrem rasie or lower cortisol?
     
  2. halcyon

    halcyon Senior Member

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    Source
     
  3. perchance dreamer

    perchance dreamer Senior Member

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    I was on Xyrem for years. It never seemed to affect my cortisol, one way or another.

    I have a yearly 24-hour salivary hormone test, and the results were the same when I was on Xyrem as they were before I was on it.
     
  4. joanierav

    joanierav

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    hi dreamer. tell me your experiences with xyrem, if i may ask. my insomnia is worse than it has ever been. sitting on the couch reading all night. but im scared to death of xyrem. what it used to be called, put the fear in me "date rape drug". eeeekk.

    should i be afraid to try it?

    many thanks, joanie
     
  5. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @joanierav. I'd be glad to tell you my experience of Xyrem. I don't have time tonight, but will get back to you tomorrow.
     
  6. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @joanierav. I don't think you should be afraid to try Xyrem. It's challenging, but considered very safe when taken as prescribed.

    I'm going to tell you about my experiences and make suggestions, but I'm not a doctor or have medical training. Also, people react differently to Xyrem, so my experiences could be quite different from others.

    When I quit taking it, I went back to the same level of sleep I had before Xyrem, which was crappy, but no worse for having been on it. I had an awful time before when I went off Klonopin and Lunesta, and my sleep was far worse for a long time after going off those drugs.

    If you are on benzos, I'd suggest tapering off with the help of your doctor before going on Xyrem. It didn't work well for me until I had been off the Klonopin for awhile.

    Xyrem is strong medicine and takes awhile for your body to get used to it. That's why you start off on a low dosage and stay low for awhile.

    As you are advised in the video you are supposed to watch, don't take it until you are in bed because it works quickly.

    Also, you need to take it on an empty stomach.

    Oh, dear, I started feeling bad and need to lie down. I'll be back later!
     
  7. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @joanierav, I'm back. I got sick as a dog yesterday, probably from something I picked up from recent air travel. This is another reason I hate to fly!

    Anyway, going back to my point about taking Xyrem on an empty stomach, many people have to wait only 2 hours after eating before taking Xyrem. Some people have to wait longer, though. I had to wait 4 1/2 to 5 hours after eating, but my doctor said that was really unusual.

    I got so much help with Xyrem from an online support group, Talk About Sleep. The Narcolepsy forum was a great source of information and help from members.

    I have mild Narcolepsy, but at the time I was on that forum, I was taking Xyrem, but did not yet have my diagnosis. The people with Narcolepsy were very nice and helpful.

    Talk About Sleep completely changed their format a couple of years ago. Archives preserved all those years of information, but you had to ask to know how to access it. I haven't been back but a few times since they changed.

    I've heard good things about Narcolepsy Network, also. Whether or not you have Narcolepsy, you can get good online support for Xyrem.

    I found that I needed to take titrating up on Xyrem more slowly than what my doctor suggested. That's certainly not true for everyone, but Xyrem patients helped me with this. It's not going to hurt to stay at a low dose of Xyrem for awhile so your body will adjust.

    What worked for me was to start at just a little over the lowest suggested dose and stay at that dose for a week. Then I'd nudge it up a little more the next week, and I continued until I found my ideal dose. Mine was 3 grams, twice a night.

    Oh, yeah, take a tiny sip of water after drinking a dose because Xyrem is salty, which can erode tooth enamel. Rinsing with a little sip removes that risk.

    I think Xyrem is worth trying. It's safe, partly because it's so short acting. That's why you have to take another dose 2 1/2 to 4 hours later. Also, it does put you in deep-stage sleep, which many of us, whether we have Narcolepsy or not, are deficient in.

    Best of luck, Joanie!
     
  8. drew

    drew

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    @perchance dreamer
    Why did you stop taking Xyrem?


    How bad was/is your sleep?

    Here are the results from my latest sleep test:

    0.5% SWS, 11.6% REM
    EEG arousal CAP count = 19; CAP index = 3.8
     
  9. renerdrat

    renerdrat Every teardrop is a waterfall

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    Temecula
    that seems like a really silly reason because of a nickname for the drug... alcohol is ultimately the number 1 date rape drug FYI. Honestly most the side effects are minimal, it's nontoxic and was used for many years as a sleep aid and supplement until the media demonized it and it became illegal... now it's only available at a ridiculously overpriced pharmacy
     

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