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    Treatment of neuropathic pain

    MEDICAL TREATMENT OF NEUROPATHIC PAIN

    General tenants:

    I. Don't be in a hurry to get out of pain! (YEAH RIGHT!)

    The medications that most successfully reduce neuropathic pain in terms of reducing pain severity, the quality of pain relief and durability of relief ALL take time to work. An expectation that they will work like commonly used pain relievers (opioid medications: such as vicodin, codeine, etc) will result in PROFOUND DISAPPOINTMENT and more importantly may cause you to prematurely put aside one of the few medications that can produce long-term profound pain relief.

    In other words an expectation that they will work like other common pain relieving meds will "burn" (cause you to reject) a drug that might--if used differently with different expectations—have been very successful. This is for several reasons:

    1) Unlike the opioid medications where you take a little and they help a little; take more and they help more, many of these "anti-neuropathic" (anti-epileptic) medications appear to exhibit a threshold effect in any given individual. In other words a patient might feel no relief at 25 mg, or 50 mg, and then at 75 mg suddenly start to feel relief and then at 150mg feel profound relief.

    So your initial experience of the drug may not reflect your subsequent experience. You might then ask why not just start the higher dose?

    2. When started at "effective" doses these drugs usually create side effects that can be largely avoided by slowly titrating up from a much lower dose and allowing your body to accommodate to the effects of the medication. In other words drug X may make you very nauseated if started at 60 mg a day, but if started at 20 mg a day, and then each week increasing the dose by 20mg until you get to 60 mg then nausea is very rare.

    So it is better to start at a low dose and work your way up. It is generally very difficult to talk someone into re-trying a drug they are convinced makes them puke (or be dopey etc.) because of their experience from previously taking it at too high an initial dose.

    3. There is some evidence that even though these drugs may exert some effect immediately at any given dose, the degree of pain relief may really build substantially over the first few weeks of treatment. No-one has a real good explanation for this, but we wave our hands and talk about things like "central sensitization".

    4. Unlike penicillin where you can just pick the right dose—with all of these anti-neuropathic medications doses have to be significantly tailored to the individual. I don't know what dose may be too much for one person and not enough for another.

    Essentially you have to test a given dose in a given person and then slowly change the dose to see at any given dose the degree of side effects and the degree of pain relief.



    So the mantra is START LOW and GO SLOW!!!

    START LOW (start at a dose that you are really confident won't create side effects—usually a dose too low to be effective)

    GO SLOW! ( increase the dose by small increments every few days or each week so that you plan to reach your target dose in a month to two months)

    But GO! ( when you start one of these medications don't just pick a low dose and leave it there or decide that it doesn't work just because it isn't having an effect at that low dose) these medications should generally be slowly titrated up until either:

    a) You are getting significant pain relief or you are reaching a dose defined by the medical literature to include some risk of sudden significant hazard (e.g. an arrhythmia that might occur without you feeling this adverse effect coming on slowly)

    or

    b) You start reaching dose-limiting side effects (e.g. the medication is making you feel too sleepy or too nauseated).


    II. Only Change One Thing at a Time.

    People in pain want to get out of pain right now and for that reason are tempted to try multiple things at the same time.

    When you run into side effects you don't know which intervention is causing the side effect, and if it works you don't know what works. Slowly learning what works and what doesn't; and why things don't work (e.g. lack of efficacy versus overwhelming side effects) is important to eventually achieving success.


    III. Nothing Ventured, Nothing Gained.

    It is okay to not like taking medications, but with chronic pain if you don't change something –a medication or something else—then nothing will change. . And if you are in you have to be committed.

    Taking these meds one day and skipping them the next because of frustration etc. will generally make you feel really bad. So decide to give them a real 6 week trial, or decide that you are not ready—but don't do the half-measures thing. They don't work when used this way and you wind up mis-educating yourself that these medications don't work when in reality they are not working because of the way you are using them.
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    #2
    Ditto

    Ditto my reply to your MRI post!
    I am learning so much from you 22cyclist!
    techie
    Another pirated saying:
    Half of life is if.
    When today is bad, tomorrow is generally a better day.
    Dogs Rule!

    Comment


      #3
      Hey 22C,

      I just recently started having neuropathic pain...haven't had it in years and it used to bein my face, now my feet and arms seem to be on fire.

      I'm allergic to Neurontin and Tegretol, which leaves the anti-depressants, but had a pretty long lasting episode of SVT a couple weeks ago and the neuro, GP, and the ER doc all thought it could have been caused by the anti-depressant. So until I get a cardiologist okay (which I'm in the process of now), I have to go cold turkey.

      Fortunately, it turns out the cardiologist I saw has a wife with MS, and he agreed to let me continue to take a low dose of the anti-depressant until the tests come in. But it only slightly takes the edge off. So I had to try to figure out how to exist with burning feet for awhile (especially when I have to wear shoes...without shoes, I just put ice packs on them.)

      I've been using Lidocaine ointment for relief when I have to wear shoes. Slather some on, it works for awhile, then when my feet start burning, I excuse myself and use some more. I hope it's not a long term solution and I'll get the okay to use the anti-depressant again, but in the meantime, it's working. They also say Capsaicin works if you use it long enough...might give that a try too.

      Comment


        #4
        Originally posted by rdmc View Post
        Hey 22C,

        I just recently started having neuropathic pain...haven't had it in years and it used to bein my face, now my feet and arms seem to be on fire.

        I'm allergic to Neurontin and Tegretol, which leaves the anti-depressants, but had a pretty long lasting episode of SVT a couple weeks ago and the neuro, GP, and the ER doc all thought it could have been caused by the anti-depressant. So until I get a cardiologist okay (which I'm in the process of now), I have to go cold turkey.

        Fortunately, it turns out the cardiologist I saw has a wife with MS, and he agreed to let me continue to take a low dose of the anti-depressant until the tests come in. But it only slightly takes the edge off. So I had to try to figure out how to exist with burning feet for awhile (especially when I have to wear shoes...without shoes, I just put ice packs on them.)

        I've been using Lidocaine ointment for relief when I have to wear shoes. Slather some on, it works for awhile, then when my feet start burning, I excuse myself and use some more. I hope it's not a long term solution and I'll get the okay to use the anti-depressant again, but in the meantime, it's working. They also say Capsaicin works if you use it long enough...might give that a try too.
        I like the topical lidocaine for the feet idea. Wonder if I could use it on my face. I know there is a limit due to the heart slowing side effects but I will ask about it. Thanks for the info. I have terrible TN on both sides and tegretol and trileptal have stopped working. At least the lidocaine might help breakthrough pain.

        I will check it out!
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Three weeks ago I was prescribed Vicodin for the severe neuropathic pain in my left hand. I've been living with it for a year and a half. That might not sound that long compared to a lot of you but I work full time as an insurance agent and am on the computer all day every day. It's been agonizing.

          I've tried Neurontin, Cymbalta, Lamictal, Nortriptyline and Lidocaine. None of them even touched the pain and I maxed out on recommended dosages.

          Finally after a year and a half of trying all possible methods of neuropathic pain the MS Specialist said short of a nerve block, I was out of options.

          So Vicodin...it's actually helping quite a bit. It still hurts when I'm pounding away at a keyboard but it takes the edge off. When I'm not working I feel much more relief. My mood has improved, my thinking is actually clearer probably because I'm not so distracted with PAIN. I'm tolerating the Vicodin very well. Not real side effects other than some tiredness if I take it every 4 hours. During the work week I'm only taking it every six hours.

          Anyway, I just wanted to tell my story real quick. I know the opiates are generally deemed not very effective for nerve pain and the risk of addiction is high, but at this point it does work for me and I don't give a damn about becoming addicted. If I feel relief from the PAIN I'll take an addiction.

          Comment


            #6
            relief from pain

            You should open your options to not just vicodin.

            Have you looked at the green herb? I feel that it is much better than using an opiate, and will give you more relief than just from pain.

            If you don't care about the addiction part, and want an all around, better pain fighter, you might want to give it a try
            New study on vaping
            http://www.ncbi.nlm.nih.gov/pubmed/23237736
            *****BEST INFO BELOW*******
            http://pharmrev.aspetjournals.org/content/58/3/389.full
            http://ripatients.org/cms/uploads/File/MS/Clark_2004_MSandCannabis.pdf

            Comment


              #7
              22cyclist, I really appreciate how much effort you've put into this thread. A commendable effort.

              I have to admit though, when I first started reading it I thought it was a SNL style parody, the ones that consist of a 60 second promotion and 10 minutes of horrific disclaimers rattled off in too fast succession to understand.

              I have my share of neuro pain and tried too many to name SSRIs, so far none that I've been able to tollerate.

              If I remember correctly, many of the SSRIs can be highly 'addictive' as well. Some patients experience a loss of effectiveness after increasing doses over years and have to deal with many withdrawal side effects from SSRIs.

              Opiate addiction is over-rated based on my personal experience with MS pain. I withdrew myself from a very high dose taken over 10yrs., and did not disolve in to a raging drug seeker, committing illegal acts or harming others to aquire drugs.

              I was uncomfortable for aa week or so, but nothing compared to the tolerence problems and discomfort I experienced while slowly increasing or decreasing SSRIs. MHO.

              Comment


                #8
                Just wanted to let you all know that I just participated in a research study about pain in MS patients. They do a functional MRI while giving you "mild pain". (They put pressure on your thumbnail until you just start to feel uncomfortable.)

                They are looking at how the brain reacts differently to pain in patients with MS compared to healthy controls. They have already found some differences.

                Although it is in the early stages, I think the direction of this research is to find some solutions for effective pain relief for MSers.

                Comment


                  #9
                  Wonderfully outlined 22cyclist. This kind of information cannot be stated and re-stated enough! I take what I consider a healthy dose of gabapentin (600mg, 4x a day) & baclofen (20mg, 4x a day). I'm religious about it but as I sit here my cheeks feel sunburned & my right leg feels icy. These drugs mask much of my parathesia so I can get thru the day but they're not perfect. I would add to your post consistency since it's my understanding that these types of drugs do not work well if you only "pop them as needed". It took me weeks/months to titrate up to my current dose. Yes, the gaba made me feel a little high or drunk or tired at first, but I started low & slow, was consistent and stuck with it. Eventually, the side effects subsided. I can tell when it's getting close to dosing time - my parathesia/tightness gets worse. I don't know what I'd do without these drugs and am immensely greatful that my MS provider knew exactly how to prescribe them.
                  Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

                  Comment


                    #10
                    Originally posted by pnowsitall View Post
                    You should open your options to not just vicodin.

                    Have you looked at the green herb? I feel that it is much better than using an opiate, and will give you more relief than just from pain.

                    If you don't care about the addiction part, and want an all around, better pain fighter, you might want to give it a try
                    I've tried several different medications as I stated in my first post. It took a year and a half to get to Vicodin. All of those medications were titrated to maximum dosages and didn't work at all. Vicodin was a last resort.

                    What is this green herb?

                    Comment


                      #11
                      I'm guessing the 'green herb' requires a medical card in some states.

                      I have found it takes away my pain but will make me a little twitchier sometimes. Certainly helps with headaches when nothing else will.

                      Comment


                        #12
                        Yes, it does require a medical card, but this is getting ridiculous why we aren't able to get this prescribed to us.

                        I guarantee this will alleviate many symptoms that you are experiencing and that you have.
                        New study on vaping
                        http://www.ncbi.nlm.nih.gov/pubmed/23237736
                        *****BEST INFO BELOW*******
                        http://pharmrev.aspetjournals.org/content/58/3/389.full
                        http://ripatients.org/cms/uploads/File/MS/Clark_2004_MSandCannabis.pdf

                        Comment


                          #13
                          Excuse my ignorance but, does 'green herb' mean medical marijuana?

                          Anyway, I'll toss my experience into the hat. I developed a neuropathic pain syndrome around my right eye after a bout of ON. My PCP tried 10mg of Percocet and it helped at first. Then, after a month, I was taking 3 a day and they only worked for 3 hours. My doctor yelled at me [as if that would make the pain go away] and gave me the name of a pain management doctor. He put me on a low dose of Lyrica and a low dose of a morphine derived time release narcotic. He had me start with half of the Lyrica dose the first week + the morphine. Then, the second week I took the full Lyrica dose and, HURRAY, the pain stopped.

                          So, in short, there is no either-or answer. A combination can be an option. The key is that the narcotics should be used in the time release form. There is no "high" therefore, no addiction per se and they don't cause rebound pain that makes neuropathic pain so difficult to treat.

                          I'm no expert. Just passing along all the things I've learned.

                          Comment


                            #14
                            The green herb works, depending on your supplier.
                            Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

                            Comment


                              #15
                              HAHA, it depends on your supplier.

                              This is what is making me interested in this field, as we are shut out of the availability, and have to resort to going to such lengths.

                              I must tell you, try to become an activist, and reach out to your local congressmen. This should become an option for us!!
                              New study on vaping
                              http://www.ncbi.nlm.nih.gov/pubmed/23237736
                              *****BEST INFO BELOW*******
                              http://pharmrev.aspetjournals.org/content/58/3/389.full
                              http://ripatients.org/cms/uploads/File/MS/Clark_2004_MSandCannabis.pdf

                              Comment

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