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Best Opioid/Non Traditional Med for Central Neuropathic Pain

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  • #16
    You would speak to any of your Drs about it, most likely your pain specialist in this case. The blood draw would be sent to one of the labs that does the testing. Its not very common yet but is getting more and more common. Drs are saying in 10 years everyone will receive the testing and it could save lives in preventing severe drug reactions. It also can greatly shorten the amount of time looking for medications that work, whatever you are taking the medications for.
    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.

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    • #17
      The latest medication I got was Opana IR (oxymorphone) 10mg. I've taken up to 5 (50mg) and didn't feel a thing, pain wise or mentally. What else is there to try?

      nucynta ER helps a tiny bit.. makes it not SO unbearable. I'm super tolerant to all meds, regardless if I've taken them before or not.

      Anything anyone else has used? I want to get a 2nd opinion from another PM doc also if possible.

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      • #18
        Did you try the Gabapentin and the Lyrica together, at the same time? Also, how often did you take the meds? You have to play around with the timing. I take 3600 mg Gaba/day, broken into 4 dosages of three 300 mg capsules. If I go any more than 6 hours on a dose, I feel my pain levels rapidly increase. So I religiously take them at exactly 9, 3, 9, and 3. I set my alarm for 3 am, take my pills, and go back to sleep.

        My initial Gaba dosage was quite low, but my body rapidly built up tolerance. My Dr. wouldn't give me any more than 3600 mg/day, so she added the Lyrica, starting at 75 mg, twice a day. It didn't quite do enough, so she increased the dosage to 150 mg, twice a day. Knock on wood, I have not needed a Lyrica dosage increase in a year, so I don't seem to have the tolerance issue like with the Gaba.

        I also take one Amitriptyline 10 mg tablet at night before bed to help me sleep. Any more than that, and I can not get up in the morning. The downside to all these meds is that they all work the same way, by calming the nerves. So, I do have a certain amount of slepiness, lethargy, and brain fog, but for me it's better than the pain. And, they are non-narcotic, which is a big plus.

        None of this completely eliminates the pain, but it keeps me from screaming all day and night! Additional strategies are required, too. It sounds silly, but distraction helps, such as focus on a project or other people or a recreation. Plenty of sleep is essential, and I think a healthy diet helps. I have found that pressure in strategic areas helps. For me, holding my arm in a certain spot or sleeping on that arm is helpful. Also, a heating pad wrapped on to the same spot and/or my side and/or my back help greatly. When all this fails, a very hot bath helps me and the effect stays for several hours. My Dr says that he thinks the flood of sensory signals from heat or pressure helps dilute the damaged sensory signals so that my brain doesn't react as strongly to register pain.

        You need to experiment to find what things or combination of things help you the most. It takes trial and error and time. It takes hard work to be vigilant, but it pays off. Despite all this, there are times when I still get pain that is hard to bear and nothing seems to help. Then there are other times when I don't get enough sleep and miss taking my pills and I don't have all that much pain. Go figure. I believe that stress is another factor, too. But you need to give different things a try and allow time to let them work. Good luck!

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        • #19
          Originally posted by Geoman View Post
          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
          Have you noticed any difference?

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          • #20
            You might try Tramadol. I've tried everything mentioned in this thread, with no luck. Tramadol actually works somewhat.
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            • #21
              Originally posted by crabbyshark View Post
              Have you noticed any difference?
              Crabbyshark, sorry missed your post. I'm not sure if there is a reduction in the pain from the lithium or not at this stage, which tells you if there is any change it's not life changing. It's still early days, but I think that it might be taking the edge off it a bit for the bad pain days (which are brought on by rapid barometric pressure drop). I haven't increased to 3/day yet, but I'm hoping that if I continue with the lithium I will be able to gradually reduce the dose of my fentynal patches.

              Clayton
              "Wheelie Wanna Walk!"

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              • #22
                RDF,

                Tramadol made my skin so delicate and as an aside all the hair on my legs disappeared, all I had to do was touch anything and it would peel to bare flesh.

                I have been on Hydrocodone for 5 or 6 years and the Fentanyl patches low level when we stopped the Tramadol, which I think was useless for me.

                Now we have included the Gabapentin to the mix. The pain I have experienced for about 14 years due to the removal of a cyst back then, has for whatever reason exploded in my neck and shoulder.

                This pain in my right shoulder and upper arm, has reached the point I cannot lift a cup of coffee to my lips. The rest of my meds are due to my having had the Bends the last time in 1972. The bends caused some kind of damage to my brain and spinal chord. The damage has never been satisfactorily explained to me, so I can describe it further. None the less, age and artheritis have not been any help.

                I have all the symptoms of an incomplete SCI which is at best almost impossible to explain. But neuopathic pain, burning, and loss of sensation in parts of my legs as well as other places below my waist, and spasms at unexplained times.

                We have tried all sorts of things, like Cymbalta, Viiox other things, I no longer remember, in the late 90's, nothing seems to work for long.

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                • #23
                  I have been given lidocain infusions based on the lidocain protocol which can be found online. This has really helped my pain level in that I rarely have to take anything for breakthrough pain any more. I'm on oxycodone 40mg ER 2x day and 60 mg Cymbalta. I've had the infusion 3 times so far and it lasts about 3 weeks for me. I've read that it's non-addictive and there are no side effects from it. Maybe you can discuss this with your pain doc.

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                  • #24
                    Originally posted by LadyT View Post
                    I have been given lidocain infusions based on the lidocain protocol which can be found online. This has really helped my pain level in that I rarely have to take anything for breakthrough pain any more. I'm on oxycodone 40mg ER 2x day and 60 mg Cymbalta. I've had the infusion 3 times so far and it lasts about 3 weeks for me. I've read that it's non-addictive and there are no side effects from it. Maybe you can discuss this with your pain doc.
                    I have heard of that. The pain doc I went to only did ketamine infusions which didn't work on me.

                    I need to check into the lidocaine further.

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                    • #25
                      I'm surprised no one has said this but pot helps me. For some reason. It also helps me stay focused when I'm doing stuff but I really think it depends on the strain. I'm going to try to get a card to buy medical marijuana.
                      C-5/6, 7-9-2000
                      Scottsdale, AZ

                      Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                      • #26
                        Originally posted by rybread View Post
                        I'm surprised no one has said this but pot helps me. For some reason. It also helps me stay focused when I'm doing stuff but I really think it depends on the strain. I'm going to try to get a card to buy medical marijuana.
                        Pot intensifies it for me

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                        • #27
                          i know this sounds silly but legs warmers getting mylegs warm

                          really helps for me but then maybe i and i hope not experincing your stuff

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                          • #28
                            Sounds like some of you guys had good effects with different opioids? I need to try something, especially for the bad pain days...like today. My neurogenic pain is mild for a few days then terrible for a few. It sucks how it takes so long to get a pain clinic appt.

                            Pot doesn't work to calm my pain at all...in fact pot makes my nerve pain much worse...that's why I haven't smoked in years.
                            C4/5 incomplete, 17 years since injury

                            "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                            "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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                            • #29
                              Originally posted by KyleP2112 View Post
                              Sounds like some of you guys had good effects with different opioids? I need to try something, especially for the bad pain days...like today. My neurogenic pain is mild for a few days then terrible for a few. It sucks how it takes so long to get a pain clinic appt.

                              Pot doesn't work to calm my pain at all...in fact pot makes my nerve pain much worse...that's why I haven't smoked in years.
                              Traditionally opiates weren't thought to help much with neuropathic pain, but based on what I've read here over the years it is coming to be accepted in some cases. That said, benefits from them seems to be very much an individual thing, as much so as what particular med you try.

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                              • #30
                                I've read so many posts I don't think any thing out there works then someone told me or tried to tell me that people who have found relief aren't online posting about it they are out living. Sounds good in theory I'm just not buying it
                                I guess one could use opiates until you can't hold your head up but then if they aren't working you have to get off the crap and that I hear is a nightmare in itself.

                                It's ALL a nightmare!
                                Courage is being scared to death but saddling up anyway. .(John Wayne)

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