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    To Topamax or not to Topamax

    Hi There

    I'm currently taking 800mgs of Epilim per day for my nerve pain however, it no longer appears to be providing me with any relief.

    My neuro has suggested Topamax, before having to try Lyrica or Neurontin. Has anyone here had success treating nerve pain with it?

    Thanks in advance
    Sneaky P
    Diagnosed July 1st 2009 ~ RRMS

    They're not brain lesions...they're bight ideas

    #2
    hmm.... I am on Topamax for my hand tremor. My experience and research has shown that people either love or hate Topamax.

    I was on Lyrica for nerve pain/to try to help my numbness (which it did not help the numbness- my old neuro kept throwing meds at me). I hated the lyrica. I gained a bunch of weight on it. It did help the nerve pain though that I occasionally got.

    I can't say whether or not the Topamax has helped my nerve pain... I don't normally have nerve pain/burning except during specific flares. My pain generally is from muscle spasms and the Topamax has not helped that. But now that I think about it, I have not had any nerve pain/burning since being on Topamax.

    A few of the side effects of Topamax are tingling, numbness, and cognitive difficulties... they tend to go away the longer you are on Topamax. I already don't work due to big cognitive issues, so that didn't bother me. For me, the chance to help my hand tremor outweighted the side effects since I already deal with those symptoms. You may lose weight on Topamax also (I have lost 15 pounds in 3 months).

    If you do decide to try the Topamax, my biggest advice is to give it a good try before giving up on it. It takes a bit to dose up to the correct dosage and figure out what works best for you. Once you get the right dose and time of day to take your doses, the side effects should start to wear off. I really like Topamax (and I have pretty much hated most of the drugs my neuros have had me try).

    Good luck!
    Erin

    doing the Limbo since 2005

    Comment


      #3
      There's a reason it has the nickname Dope-amax. Cognitive problems are a well-known side effect. Not everyone will experience this problem but it's a possibility.

      I took Topamax for about 4 years as a migraine prophylatic. It worked extremely well for that purpose. However, I also had major problems with parathesias in my hands (not related to the MS) and eventually got a kidney stone (known problem of many anti-seizure meds). I stopped the Topamax and my neuro switched me to Zonegran. Almost as effective, no side effects. Until I stopped the Topamax, I hadn't realized how fuzzy it made my thinking.

      There's no way to predict if you will have problems with side effects before you try it. I think I was relatively unlucky as far as side effects go. If your doctor(s) think it's a good option for you, try it. The worst that could happen is either you have side effects or the drug doesn't work for the reason it's prescribed. Topamax is an effective medication for many people.

      Comment


        #4
        I take Neurontin (Gab...generic) and i'm always tired and foggy after I take a pill. After a few hrs (shortly before another pill) my head starts to clear and the tired feeling starts to lift. I only take 300mg a day because my body doesn't "break down" meds like most people.

        I keep thinking of asking for Topamax only for the reason that Gab can cause weight gain and i'm already overweight trying to lose it...i don't need more!!! So even if I didn't lose on Topamax I would hopefully not gain at least.
        DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

        Comment


          #5
          i take topamax for migraine prevention and have for almost 2 years. It is very effective for that for me anyhow. (interesting about the tremor) I also take gabapentin for nerve pain, which isn't really all that helpful for me yet, but I just keep increasing my dose.

          I hope you find something that works. I found that side effects of topamax, which were yucky for the first month, went completely away. Good luck!
          Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
          ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

          Comment


            #6
            To Topo or Not To Topo

            I have tried Topomax, Neurontin, and Lyrica for extreme pain. I actually used Topomax along side Neurontin. The topomax did little for the pain, and I could only take what my neurologist described as a "baby dose" because it always left me drowsy. However, one of the best little know side affects of Topomax is that it can cause you to lose weight, and I did, 40 lbs. This was before another side affect caused me to stop taking it. Topomax can build up acidity in the body, and after 2 yrs, I began having facial ticks, my mouth and face felt like they were being stretched, until I came off the topomax. Neurontin was OK for me, but I was at the max and still having some pain. I'm now on Lyrica and love it.
            My Cross To Bear Keeps Fallin Off

            Comment


              #7
              Topamax does help me with general inflammation type pain. I started taking it once about 4 years ago and hated it because of a cog-fog effect, so I stopped. I started up again two years ago but I titrated up very, very slowly and didn't notice the same problems. Now I love the benefits.

              Comment


                #8
                Thanks for all your replies.

                My neuro has said that I would start at a small dose
                (25 mgs) and then slowly increase the dose by 25mgs every 10-14 days.

                I put some weight on with the Epilim and have worked my butt off to lose it. Given that I have a bad back (I had an unstable fracture to my T12) we don't want to put any unnecessary pressure on my spine from weight gain, so that's why Topamax was suggested over Neruontin (aka 'moron'tin) and Lyrica.

                The neuro did say that if needed more relief I could take the Topamax with Lyrica, as the Topamax should prevent the weight gain from the Lyrica.

                I know that with any medication there will be side effects. I just hope that slowly increasing my dose will lessen them.

                I will keep you posted on how I am doing on it.

                Thanks
                Sneaky P
                Diagnosed July 1st 2009 ~ RRMS

                They're not brain lesions...they're bight ideas

                Comment

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