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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. Wayne

    Wayne Senior Member

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    Hey @Graeme, @Tristen,

    I've been appreciating the conversation you've been having, and feel I've been gaining some valuable information. Much of what you're sharing seems to fit in with my own experience with Tylenol 3, which contains codeine.

    I've had chronic (daily) headaches for years, but never really found good pain treatment. (BTW, I tried ketamine at one point and had a VERY bad reaction to it.) Tylenol 3 was given to me after a tooth extraction, and I found it was something I could tolerate fairly well. But I still hesitated to take it because of the constipation it caused, and my own aversion to taking drugs.

    When a headache would get particularly severe however, I would take 1/2 to 1 tablet before going to bed. Almost always, I noticed I felt so much better the next day, often accomplishing cognitive tasks that I would normally have a difficult time doing. For a long time, I thought it was testament to the degree that chronic pain can have on the brain and cognitive function.

    But after reading a portion of this thread, I now feel it more likely has to do with brain receptors (not sure what the correct terminology is). I'm particularly interested in LDN, and whether it might be a substitute for taking other opioids. (I assume also have a serious constipating effect.) I'm going to discuss this with my Osteopathic Dr. next time I go in.

    Anyway, thanks for sharing your knowledge and experiences. Graeme, I was especially happy to see your strong words about brain damage. I've felt the same way for a long time, but it's nice to see it conveyed by somebody else with such conviction. :thumbsup:

    Wayne

    P.S. Recently, and quite accidentally, I discovered taking Tylenol 3 on a fuller than normal stomach worked even better.
    Last edited: Apr 26, 2014
    Tristen likes this.
  2. Tristen

    Tristen Senior Member

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    @Graeme , yea I do experience both improved PEM and mental clearing together, but I haven't watched it close enough to say whether one is more pronounced than the other on day one vs day two.

    @Wayne .... I would be interested to know how you felt after taking a few Ty3's a day for a few days. See if you get this same kind of response. For myself, even though these drugs work so well, I must find an alternative to narcotics.
    Last edited: Apr 27, 2014
  3. Dufresne

    Dufresne almost there...

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    @Wayne, I haven't heard anyone complaining of constipation from taking LDN.

    There's no doubt our nervous systems take a hit with this disease, and some of this could be considered damage, but I don't think this damage is what's responsible for the symptoms. I've had every one of my symptoms completely resolve at one point or another.
    Wayne and Tristen like this.
  4. Tristen

    Tristen Senior Member

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    @Graeme ... I wanna hear how it goes for ya with the LDN. Got me going on that one again and I think it's important to follow closely those like you and myself who are responding to things the same. Obviously not everyone with me/cfs has our kind of response to opiates. So are you continuing with the Ibudilast? Have a link for any support forums focused on using it for me/cfs or related?
  5. Tristen

    Tristen Senior Member

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    I think it would be interesting to note how those, other than just myself, with this positive response to opioids, respond to LDN. Seems to be 3 groups with LDN response....those with zero response, those with positive response, and those like myself who get much more ill on LDN.
  6. nokmax76

    nokmax76

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    Very interesting thread. There was me thinking it was just me. Too tired to post much but just wanted to say I was given co-codamol a while back for pain. It's a combination of paracetamol and codeine (only 8mg's worth of codeine phosphate). It does jack for pain but I did notice a sustained improvement in my thinking while taking it. I still take it occasionally as I was luckily given a huge box of the stuff with a three year expiry date.

    Also, I get no-side effects from it eithier. I researched the drug and all I found, predictably I guess, are addiction stories like so:

    http://www.dailymail.co.uk/health/a...-turning-unsuspecting-women-drug-addicts.html

    Was actually going to post about it until I saw this thread. Will come back when I'm less fugged, read through and hopefully contribute more. This site has it all really. Wish I had joined much earlier....
    Tristen likes this.
  7. acrosstheveil

    acrosstheveil Senior Member

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    opoioids seem to be a miracle for my symptoms. too bad they are considered taboo...
    Tristen likes this.
  8. Iquitos

    Iquitos Senior Member

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    Cannabinoids are helping me in many ways, more each day. Pain, sleep, less brain fog and exhaustion and now joint stiffness and exteme pain upon walking or trying to spread my legs, all getting a little better every day.

    And cannabis is no longer "taboo" here in Colorado, either as medicine or "recreation." I just wish we had a lot of research on those 85+ cannabinoids in cannabis, especially on which varieties are best as a medicinal herb, and what the dosages should be. I'm growing two varieties that have low THC and high CBD, but I don't have any way to find out what the percentage of the other cannabinoids is. It's all trial and error at this point.
    Tristen likes this.
  9. acrosstheveil

    acrosstheveil Senior Member

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    that's great and alll...i used cannabis for several years but suddenly developed an allergy to it. I Now get anaphylactic type reactions to even just the smell of it. Wish i knew why.
  10. Iquitos

    Iquitos Senior Member

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    @acrosstheveil Have you tried any of the non-smoke alternatives like CBD drops or herbal tincturing? That's how I use it.
  11. acrosstheveil

    acrosstheveil Senior Member

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    I have not but I react just from smelling the raw buds so I would be scared to try a tincture of it. It is strange because I get an aniphylaxis type reaction from the female buds but I can take hemp oil no problem. it is very frustrating because I used it for about five years on a regular basis before I developed the allergy. I miss it. :(
  12. Iquitos

    Iquitos Senior Member

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    @acrosstheveil You can buy CBD drops on Amazon that supposedly are made from hemp and have no THC. It sounds like the THC might be the part you are allergic to. And I absolutely understand the scary facts of anaphylaxis. After getting ME, I started having "athletic anaphylaxis" from exercising. It feels like one could die, and I think that's a real possibility.
  13. Tristen

    Tristen Senior Member

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    You may already know this, but some naturopaths are pretty good at successfully treating allergies. Some mainstream docs dealing with allergoes may be able help with this as well......but then you would need one OK with pot. May be worth a few phone calls. Be nice if you could resolve that allergy.
  14. acrosstheveil

    acrosstheveil Senior Member

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    yea, i don't think any doctors around here would be okay with pot. maybe it will go away in time. not hopeful though, none of my other allergies/sensitivies have gone away.
  15. Dufresne

    Dufresne almost there...

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    Hey Tristen. Thought I'd tell you about my most recent go on naltrexone. I tried the generic stuff from ADC that I've been recommending to those looking for an online source. Whoops… that's bad stuff. It plunged me into PEM. I couldn't even walk my dog. I had to slow down all my movements to keep the PEM at bay. I'm going back to crushing up Revia tablets. Was it Revia you originally tried?
  16. Tristen

    Tristen Senior Member

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    Hey Graeme, been a while. I don't know for sure which Rx brand I had for the naltrexone because it was compounded. The 5mg strength my doc ordered had to be compounded. I've never had a good response to LDN. In fact horrible both times I tried it. Really strange that I do well on Suboxone, which as you know includes naloxone.

    I'm currently using the Butrans patch. It's Buprinorphine without the naloxone. (Suboxone without naloxone). It the best I've found yet for my pain and ME issues....and there is no narcotic buzz, which is what I've been looking for. The patch stays on for a week. The only downside I can see, is the cost. My insurance covers it, but if not the out of pocket would be $480.00 per month.
  17. JAH

    JAH Senior Member

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    This is really fascinating to me as I have a large bottle of Baclofen by my side, which I am taking in low doses for muscle spasming. Now thinking of slowly increasing the dose to see what would happen. Do you have a doctor recommending a specific protocol for you, and theory for why it helps? How much of the opiate do you add?

    Thanks for posting, great discussion.
  18. Dufresne

    Dufresne almost there...

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    Hey JAH. It's very clear to me when I've gone too high with baclofen. As this happens I simply titrate down. I'm currently taking 150 mg/day, and I believe I understand why I'm able to do just as well with a smaller dose.

    I used to notice that if I cut my protein intake, eating the less acidifying meats according to the macrobiotic diet, I'd have to cut my baclofen dose as well. I strongly believe my G/G (glutamate/GABA) imbalance is correlated to the pH of my terrain and my oxidative stress/redox situation. Treating babesia has significantly decreased my need for the drug, and I've convincing anecdotal evidence this is due to a change in these dynamics. So that's my protocol: do if by feel.

    I don't take opiates regularly, as I don't want to go down that road. However I've noticed this increased PEM threshold on regular therapeutic doses of opiates. I think the best way to go with this stuff, if indeed you notice the same benefits with opiates, is to try LDN. The woman who wrote the tome on ME/CFS treatments that Cort has highlighted on Health Rising has virtually eliminated her PEM through this alone. Unfortunately it doesn't seem to have such a pronounced effect on most. If this doesn't work for you, Tristen's approach might be worth trying.
    Wayne and JAH like this.
  19. acrosstheveil

    acrosstheveil Senior Member

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    another drug you may be interested in is memantine it is an nmda antagonist and can help reduce excitotoxicity. it has also been well known to help reverse tolerance to medications.
  20. Tristen

    Tristen Senior Member

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    The Butrans is best I've found so far......but I'm still looking because I still want something completely non narcotic that will have similar affect. I keep playin with the idea of giving the LDN another try.

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