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Brain damage/dysfunction and substances that give near remission

Discussion in 'General ME/CFS Discussion' started by knackers323, Nov 12, 2013.

  1. Tristen

    Tristen Senior Member

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    Northern Ca. USA

    Thanks Graeme, I am interested in your online source. Have a link? Appreciate the advice on the use and discontinuance of Baclofen....I wasn't aware of that. Even though I'm not the wired/tired type, I may still give it a go. Baclofen is fairly benign compared to many other things I've tried.

    Even though these drugs are more about treating symptoms rather than the cause of our disease......so what, as long as they are effective and don't compound the problem. The majority of treatable diseases today are only treating and controlling symptoms, rather than a cure. Anything to escape the horrible symptoms of me/cfs, that is safe and somewhat effective, is ok with me. I want as much of my life back as possible. Cheers everyone.
  2. knackers323

    knackers323 Senior Member

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    Hi can you tell me a bit more about gaba and glutamate in cfs please. I have not heard of this
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    excess NMDA is also in the mix with this.

    wow graeme thats some big doses of baclofen.
    I have used up to 75mg but now settle for 25mg as for me i didnt find any increase in effect from the higher dose. I didnt use baclofen all the time but intermittently to help sleep which it did help improve sleep quality when i used it with other sleep meds. Outside of better sleep which also improves function, i didnt really notice any other effects.

    info i found on baclofen said it helped increase growth hormone probably by increase sleep quality and deep stage 3/4 sleep. it was said to be the poor mans version of xyrem.

    Said to work on gaba B receptors similar to xyrem and the supplement phenibut. traditional benzo sleep meds work on gaba A receptors. Its indicated as a muscle relaxer but i didnt find it helped with that either, just improved sleep quality. I also read that there was no tolerance to it which isnt the case which is why i end up using it intermittently.

    cheers!!
    Little Bluestem likes this.
  4. Graeme

    Graeme almost there...

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    I find you have to go big with the baclofen. It does little for me at smaller doses. I don't find it functions as a sedative in the slightest, more like an antidepressant. I take pleasure in all my daily chores now. It makes me feel useful and motivated. GHB is so much more sedating. Perhaps a good strategy for those with sleep problems would be to take large doses of baclofen through the day and then switch to GHB for sleep.

    The increase in growth hormone is common to all GABA B receptor agonists, and they are large increases. It's said that GH is the key to other hormones. This might be beneficial to us. My libido is tripled on the drug. I'm noticing the hip to waist ratio on all the nubile women I come across. I'm also getting so much more out of my guitar nowadays. There are worse ways to pass the time with ME/CFS.
    Last edited: Dec 9, 2013
    heapsreal likes this.
  5. knackers323

    knackers323 Senior Member

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    Has anyone had any more progress with the opiates or similar?
  6. Hip

    Hip Senior Member

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    When you say you have to go big with baclofen, what sort of dose are you talking about?

    Myself I have not taken more than 20 mg of baclofen. Do you think this might be too little to get any effects?
    Little Bluestem likes this.
  7. Tristen

    Tristen Senior Member

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    Northern Ca. USA

    I remain looking for the best option. Currently take max dose of Tramadol (300mg/day) which gives me a little relief, maybe 25% of what I would get with narcotics such as Hydrocodone......but a little is better than nothing, and I don't want to take narcotics. Soon I'm gonna try the Butrans patch. It's the same drugs as found in Suboxone, but is a slow release and therefore should get away from the narcotic effect....I hope. Suboxone does give me relief.....but I can't get that since it's primarily used for drug addiction/withdrawl.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I mostly use tramadol 200mg sr for pain, mostly lower back and of late my neck has gotten worse. As my doc said my spine seems alot older then me, with alot of bone spurrs etc etc Anyway i felt like the tramadol wasnt working, probably a tolerance so my doc had me on kapanol which is a slow release morphine, this was just for a few weeks and then back to tramadol and hoping my tolerance to it has dropped, which it seemed too. What i found comparing the effects of tramadol to kapanol (disreguarding the tolerance issues) i think the tramadol for me works much better. It feels like it has an energizing effects and better pain relief effects compared to kapanol??

    so thats my experience with tramadol vs narcotic/morphine/kapanol?? i suppose we are all different.
  9. Graeme

    Graeme almost there...

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    240 mg per day divided into three 80 mg doses. It completely normalizes my circadian rhythm, and functions as an incredible antidepressant too.

    I've had problems at various times with any treatment that would improve mood or mental energy, as if my brain would reject the treatment and shut down the exact systems that I was attempting to enhance, and then some. This has happened with Baclofen as well. The result was predictably a lack of motivation, zero libido, heavy depression and irritability, and a reversal of circadian rhythm improvement. Two of the ways in which I've worked around this have been extreme avoidance, and moderate avoidance combined with babesia treatment. As a result I theorize the problem pertains to compromised oxygen delivery to the brain.

    I'll just add that the improvement with Baclofen is completely different to the improvements I've enjoyed with opiates or GHB. These latter two actually raise my PEM threshold to the point where I can read and exercise again -quite amazing. The Baclofen does not do this for me.
    Last edited: Jun 12, 2014
    Little Bluestem and Wayne like this.

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