Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Potential Sleep-Related Treatment Identified For Fibromyalgia

Discussion in 'Other Health News and Research' started by Never Give Up, Sep 9, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Snowdrop and barbc56 like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    I really hope something comes of the research findings. That would be great.
     
    panckage likes this.
  3. perchance dreamer

    perchance dreamer Senior Member

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    This is old news. Many fibro patients do have alpha intrusions, which cause non-refreshing sleep and an increase in pain.

    Xyrem is the brand name of sodium oxybate, a sleep med that works on Gaba-B. It's a short-acting, powerful, CNS depressant that puts the patient into deep-stage sleep. It's regarded as very safe when used as directed, partly because it is so short acting, which requires the patient to get up in the middle of the night and take a 2nd dose. Also, it's regarded as safe because it leaves Gaba-A alone, working on just Gaba-B.

    Jazz Pharmaceuticals, which still owns Xyrem, I think, petitioned the FDA to approve Xyrem for fibro patients and did a lot of clinical trials, with very good results. The FDA turned down approval for fibro. I think this was 4 or 5 years ago.

    Xyrem is currently approved only for narcolepsy and cataplexy in the U.S. My sleep doctor has worked with Xyrem for a long time and participated in the fibro trials. He was appalled the FDA rejected Xyrem for fibro use.

    He thinks the rejection wasn't based on results, but how it would be a big pain to have this powerful, exceedingly expensive drug approved for the legion of fibro sufferers. Jazz has the patent on pharmaceutical GHB until 2020, I think, and they charge an exorbitant amount for it.
     
  4. panckage

    panckage Senior Member

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    Vancouver, BC
    Not sure if that makes it safe phenibut works on gaba-b too and no prescription is needed. I take 1g at 9-10am usually. It doesn't make me drowsy. It makes me feel good for the whole day usually and then I can sleep the whole night through! It works great but caution the consensus is to use no more than twice a week. Anymore than that and there are reports of terrible withdrawals
     
  5. perchance dreamer

    perchance dreamer Senior Member

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    Doesn't phenibut also work on Gaba-A in addition to Gaba-B? I thought that's why it's habit forming if taken every day.

    I occasionally take 100 MG at bedtime, and it knocks me out. I'd never be able to take it in the morning. Just shows how we're all different.
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    I use it no more than 2 days a week. I have used it 2 days in a row for sleep emergencies but that is it.. 500 mgs had me wasted most of the next day which I quite like.
     
  7. perchance dreamer

    perchance dreamer Senior Member

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