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Thread: Best Opioid/Non Traditional Med for Central Neuropathic Pain

  1. #1

    Thumbs down Best Opioid/Non Traditional Med for Central Neuropathic Pain

    I am a new T3 Sensory Incomplete injury, 7 months post. I intense nerve pain that hasn't been touched by 4800mg/day of gabapentin, 120 mg/day cymbalta, 100mg/bedtime amitriptyline, 400mg/day lyrica, 100mg/day savella


    currentky taking:

    gabapentin 3600mg/day, 120mg/day cymbalta, 60mg/day baclofen. nucynta er 250mg

    for opids:have tried dilaud 6mg/q4 , methadone 5mg 3x/day

    i have burning, scalding pain in my feet and legs and a sunburnt feeling in my trunk, sometimes turns to ice cold giving me chills

    i am going to my pain mgmt doctor today and want to have some ammo.

    methadone is supposed to a better option for 3rd/4th line treatment, i just know that 5 mg 3x/day is not much at all.

    tired of suffering!

  2. #2
    It took me a while to find out what manages my pain best, but it is different for everyone. I use a mix of valium and methadone, currently I am 20mg of methadone twice a day (That is the script, I actually take 10 in the morning 20 at 2pm and 10 at 10pm). Then 5 mg of valium as needed. Nothing will make the pain go away, the goal is to manage it so you can function.

    Gabapentin did nothing for my pain, in fact when I went off it the pain seemed to lessen.

    Quote Originally Posted by jbridges9 View Post
    I am a new T3 Sensory Incomplete injury, 7 months post. I intense nerve pain that hasn't been touched by 4800mg/day of gabapentin, 120 mg/day cymbalta, 100mg/bedtime amitriptyline, 400mg/day lyrica, 100mg/day savella


    currentky taking:

    gabapentin 3600mg/day, 120mg/day cymbalta, 60mg/day baclofen. nucynta er 250mg

    for opids:have tried dilaud 6mg/q4 , methadone 5mg 3x/day

    i have burning, scalding pain in my feet and legs and a sunburnt feeling in my trunk, sometimes turns to ice cold giving me chills

    i am going to my pain mgmt doctor today and want to have some ammo.

    methadone is supposed to a better option for 3rd/4th line treatment, i just know that 5 mg 3x/day is not much at all.

    tired of suffering!

  3. #3
    Lithium seems to be effective in eliminating neuro pain. This was discovered in the ChinaSCINet trial (Efficacy and safety of lithium carbonate treatment of chronic spinal cord injuries: a double-blind, randomized, placebo-controlled clinical trial). I attached the paper, details are on page 144, Secondary Outcomes. ChinaSCINet is now planning a clinical trial to test this.

    Lithium should only be administered by a doctor who is experienced with lithium and can titrate the dose.

    Jim
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  4. #4
    Quote Originally Posted by t8burst View Post
    It took me a while to find out what manages my pain best, but it is different for everyone. I use a mix of valium and methadone, currently I am 20mg of methadone twice a day (That is the script, I actually take 10 in the morning 20 at 2pm and 10 at 10pm). Then 5 mg of valium as needed. Nothing will make the pain go away, the goal is to manage it so you can function.

    Gabapentin did nothing for my pain, in fact when I went off it the pain seemed to lessen.
    Doctor would not give me Methadone, says it is too dangerous. We're going to try ketamine infusions along with Opana 4x/day for breakthrough pain.

    I really hope this works, seems like my pain increases daily!

  5. #5
    Quote Originally Posted by Jim View Post
    Lithium seems to be effective in eliminating neuro pain. This was discovered in the ChinaSCINet trial (Efficacy and safety of lithium carbonate treatment of chronic spinal cord injuries: a double-blind, randomized, placebo-controlled clinical trial). I attached the paper, details are on page 144, Secondary Outcomes. ChinaSCINet is now planning a clinical trial to test this.

    Lithium should only be administered by a doctor who is experienced with lithium and can titrate the dose.

    Jim
    Do you have more info on this? My pain mgmt doctor wants to try me on Lithium again after we try the ketamine infusions. I'm curious to see of any data collected in the US or anywhere for its use as a nerve healing agent,

  6. #6
    Methadone is too dangerous but he is going to shoot you up with vitamin K? Well it doesn't make sense to me but I am not a doctor. Hope it helps.

    Quote Originally Posted by jbridges9 View Post
    Doctor would not give me Methadone, says it is too dangerous. We're going to try ketamine infusions along with Opana 4x/day for breakthrough pain.

    I really hope this works, seems like my pain increases daily!

  7. #7
    Quote Originally Posted by t8burst View Post
    Methadone is too dangerous but he is going to shoot you up with vitamin K? Well it doesn't make sense to me but I am not a doctor. Hope it helps.
    I think it's just whatever the news hype is at the time. When I was in the hospital a couple weeks ago they started me at 5mg 3X/day and it helped EVER so little but he said he would start so slow that t would take weeks to get to tuat 5mg x 3 dose.. I can't handle waiting anymore... My pain has truly been a 10/10 lately... Fingers crossed.

  8. #8
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    Geez, I started off with 5mg methadone 4x a day and quickly went to 10 mg 4x. It didn't work out for me though so I switched to dilaudid.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  9. #9
    I was injured in 1970 and had severe painw/spasms. After ten years of heavy drinking(ease pain)I met an older gimp who suggested i try morphine. I did and have never looked back. Now i have severe addiction but live with lower level of pain and sometimes no pain. good luck.

  10. #10
    jbridges, I've just started on lithium this week, so can't coment yet. My doc put me on 2 X 250mg/day and will increase to 3 a day if it's looking promising. I have to have a blood test in a couple of weeks to check serum levels. I'm a T12 and have severe Central NP at and below injury level. I tried all the other meds and got no relief, so I've been on fentynal (opioid) patches 100 mg 2 daily (they say the patches should last 3 days but everyone will tell you it's BS and you need to repatch 2 daily). This doesn't treat the pain, just dumbs everything down and is all that available for me at the mo. Just hoping the lithium helps. Good luck.

    Clayton
    "Wheelie Wanna Walk!"

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