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Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

Discussion in 'Neurological/Neuro-sensory' started by Tristen, Apr 11, 2013.

  1. Dufresne

    Dufresne almost there...

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    As it relates to Marco’s thinking on the subject, as well as taking something I knew to be risky for me, I thought I’d post a little about my experimentation with GBL and Baclofen.

    With GBL I had no excitotoxicity. I also couldn't trigger PEM no matter how much I read, whereas a long paragraph used to cause me problems. Neuro-symptoms disappeared, and I enjoyed an increased tolerance for exercise.

    GBL is a potent GABA-B agonist but it stimulates the hell out of endorphins too. You do develop a bit of tolerance to it within a week of regular dosing which leads to a slight rebound for a day or two, though hardly a remarkable worsening of excitotoxicity which is what I was expecting. Of course if one were taking it around the clock for an extended period of time I imagine the withdrawal would be similar to that of alcohol.

    I started taking Baclofen, hopefully a sustainable GABA-B receptor agonist, and the results have been promising. I can get 80 mg/day prescribed here legally. Some of that wired feeling is dissipating.

    I should add that I’m not endorsing GBL use or even Baclofen therapy, and I’ll have anybody reading know that I”m not combining these two. Just thought the effects might be of interest to certain posters on this thread.
     
    Last edited: Nov 16, 2014
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  2. Tristen

    Tristen Senior Member

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    Thanks Dufresne, I've been considering the baclofen and appreciate hearing about your experience with it. Being non narcotic is a plus if it will work anywhere near as well as the opiates. GBL?
     
  3. Marco

    Marco Old blackguard

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    Hi Dufresne

    GABA-B agonists do appear to be having an impact on some of your core symptoms which is suggestive. Rather you than me though - I really don't like the sound of that GBL!
     
  4. Dufresne

    Dufresne almost there...

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    What I’d like to find out is what aspect of my high protein diet is problematic, the glutamic acid or the ammonia. As I understand it both are able to get into the NMDA receptors. When I drop my protein intake down I really feel the Baclofen coming on. It’s great. It soothes this body-wide sensation of angst and does wonders for my social anxiety. Adjunctive therapies alongside the Baclofen might allow me to get by on a lower dose.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    250-300mg of baclofen is a pretty big dose. if u ever need to stop your going to have to taper off it slowly. A common dosage i have seen used for muscle spasm in spastic type conditions is 25mg 3 times a day. I have used 75mg at night to help sleep and it did but i found 25-50mg more then enough, but i was only using it at night for sleep.

    Have u looked into DXM Dextromethorphan as an NMDA antagonist and also supposedly can help with reversing tolerence to benzo's.

    Theres a substance called GABOB (Amino Butyric Acid) said to work similar to GHB but without inducing unconsciousness, supposedly helps increase growth hormones etc. Ive never used it but it looks interesting and its sold here http://www.antiaging-systems.com/38-aminohydroxybutyric-acid-gabob-buxamin 1000mg seems to be the recommended dose which can add up if used nightly??
     
  6. xchocoholic

    xchocoholic Senior Member

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    My reaction is within 20 minutes of taking the med and only lasts
    it's normal alotted time. I'm assuming my reaction is just the normal carefree reaction
    associated with these meds. I can't take these for very many days without feeling
    sick / toxic tho. Because i have regular swelling hydrocodone works better thanloratab.
     
  7. Dufresne

    Dufresne almost there...

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    DM is effective but I don’t like the idea of taking it regularly, it's in the same books as GBL. This GABOB looks like it’s in the same family as GBL/GHB. Perhaps a good option to substitute for the massively overpriced Xyrem. Still one has to be careful with any of these. I hear Phenibut can be somewhat nasty to come off, and that can be ordered from IHerb.

    What I like about the Baclofen is it’s apparently very specific to the GABA-B receptor. A hell of a lot better option than benzos. Those are horrible drugs.

    The next drug I'd like to try is Tianeptine.
     
    Last edited: Nov 16, 2014
  8. Tristen

    Tristen Senior Member

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    Idea's, theories, links, on the cause of the NMDA excitoxicity or Glutaminergic storm, in me/cfs?
     
  9. peggy-sue

    peggy-sue

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    If it's of any interest, I've been having to take co-codamol (500 mg paracetamol, 30 mg codeine) for sciatica over the last year or so.

    I too, noticed a huge improvement in everything, even after I stopped the first time, for a short while, but it didn't last forever.
    I started out just taking one tablet, the codeine was enough to kill the pain.
    (I didn't want the paracetamol, it doesn't touch pain for me, never has).

    However, the sciatica came back, I'm back on the tablets, I'm up to taking two at a time (never more than 5 a day, I am very wary of the paracetamol - and of addiction, to which I am very susceptible) and these improvements have not returned.

    They do help my sleep.
     
  10. Marco

    Marco Old blackguard

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    Tentative but here are some related snippets from my last blog on the subject :

     
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  11. Tristen

    Tristen Senior Member

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    Fantastic, thanks Marco! My own labs showing very abnormal values with these particular cytokines, and my level of excitotoxicity, does seem to validate this information.
     
  12. Marco

    Marco Old blackguard

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    Thanks Tristen

    I think it does hang together as a working hypothesis. Here it is in diagram form :

    Sensory gating diagram.jpg
    What to do about it though?
     
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  13. Dufresne

    Dufresne almost there...

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    reduce dietary glutamate
    transdermal or injectable magnesium as an NMDA antagonist
    GABA agonists
    wormwood for the cytokines (just a hunch - not sure how it works)
    eliminate toxins to the best of one’s ability
    kill bugs
     
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  14. Marco

    Marco Old blackguard

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  15. Dufresne

    Dufresne almost there...

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    Thanks for drawing my attention back to this article. I’d originally skimmed it and missed what was relevant to my thinking. It makes sense that Wernicke-Korsakoff which manifests as ‘wet brain’ is caused by excitotoxicity induced by alcohol withdrawal. I’d never thought that the correlation to B1 deficiency could suggest a possible remedy for ME/CFS. Just never thought it through. Thanks. I’ll try it.

    I really look forward to your next blog
     
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  16. Dufresne

    Dufresne almost there...

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    Does sympathetic dominance lead to pro-inflammatory cytokine production? I’ve often wondered if this were the case, but you’d think it would be the other way around, that it suppresses it. No?
     
  17. Marco

    Marco Old blackguard

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    In a roundabout way. As I understand it, parasympathetic activity is anti-inflammatory so a relative absence of parasympathetic activity would be pro-inflammatory?

    Which would explain why sympathetic ANS dominance is associated with cardiovascular risk and increased mortality generally.
     
  18. peggy-sue

    peggy-sue

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    Wernike-Korsakoff is caused by Vit B deficiencies, not alcohol directly or alcohol withdrawal.
    An alcoholic who continues to eat properly while continuing to drink will end up with non-Korsakoff alcoholic dementia (or primary alcoholic dementia - another name for the same thing), which manifests as severe short-term memory loss.
    (my Dad had this)
     
  19. Marco

    Marco Old blackguard

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    Maybe not the same thing but related. Alcohol withdrawal causes neurological kindling as, with the withdrawal of GABAergic alcohol, you get a neurotoxic glutamate spike that can provoke seizures amongst other potentially serious symptoms and repeated episodes of withdrawal cause permanent brain damage.

    While W-K is due to thiamine deficiency (poor diet and poor absorption in alcoholics) the mechanism involves thiamine deficiency interfering with astrocyte glutamate transporters which normally clear extracellular glutamate resulting in neurological damage.

    http://www.ncbi.nlm.nih.gov/pubmed/19565658

    More than likely a thiamine deficiency will accelerate kindling induced brain damage.

    Thiamine supplementation and my old favourite NAC can help prevent it.
     
  20. peggy-sue

    peggy-sue

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    Yup, my mother was a binger, died from total organ failure caused by chronic alcoholism. She went through phases of being sober, then binging again - that was what killed her. The stress on her body of swapping from one state to the other, repeatedly.
    My Dad was a steady drinker, I managed to get him sober after she died and he was quite happy to survive on just 4 cans of beer a day. There are 2 types of alcoholic.

    Thankfully, although I'm a binger, I didn't bother with the sober binges and didn't do myself any permanent damage.
    I am horribly familiar with the neurological kindling though. The tremors were vile until I could get some booze to stay down, sometimes I had epileptic fits and found myself coming to in hospital. I (thankfully) didn't get hallucinations.
    (I did get sober, shortly after I started having fits. They were truly scary.)
     
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