1. Community
  2. Brain and nerves
  3. Topiramate

Has Anyone Had Nerve Pain From Coming Off Topamax too Quickly?

Posted , 5 users are following.

Jael128
Jael128

A very "naive" psychiatrist reduced my dose of Topamax from 200mg to 100mg in one week because I had been using it for an off-label use (not migraines or epilepsy) and he thought this would therefore be OK. I have been on it for 13 years. Since then I have been suffering from terrible nerve pain in my neck and shoulder blades. A neurologist put me on Catapres (which at first removed the pain immediately) proving it was part of a discontinuation syndrome. Another doctor took me off it about four weeks later thinking I didn't need it anymore and since then I have been experiencing terrible pain but this time in all different parts of my head, neck, shoulders and lumbar spine. I am back on the Catapres now. However, coming off the remaining Topamax is just about impossible and I'm wondering if anyone has experienced this type of pain on withdrawal from this drug? If not, does anyone have some tips for how to withdrawal extremely slowly from this medication? How do you cut up the quite large tablets (even the small 25mg ones) reliably for instance?

0 likes, 7 replies

7 Replies

  • ronnie39403
    ronnie39403

    Posted

    Hi, I was prescribed Topiramate (Topamax) for migraines and shortly afterwords I started to get stomach pains which gradually got worse and were eventually very debilitating. After a colonoscopy, a Colonography, an MRI scan and another colonoscopy I was told that the nerves in the lining of my bowel had been damaged by Topiramate and they had been made hypersensitive.
  • Jael128
    Jael128

    Posted

    That sounds awful. Has it resolved at all? My psychiatrist and neurologist have told me that topamax is highly implicated in the regulation of pain. It's unusual that for you the administration of the topamax caused the hypersensitivity. It usually seems to be the other way around (if you're taken off it too quickly anyway). I hope this hasn't been a permanent thing for you.

  • ronnie39403
    ronnie39403

    Posted

    Thanks for your reply. I stopped taking Topiramate on 1st December 2013 and the extreme pains subsided within a week. Unfortunately there has been lasting damage to the nerves. Every time I bend or have wind I still experience pain. However the constant pains and stabbing pains are gone. It may improve with time.
  • ronnie39403
    ronnie39403

    Posted

    PS. I found a gluten free diet helped while experiencing the stomach pains. It seemed to reduce the pain slightly. Worth trying for anyone experiencing pains in the bowel.
    • Jael128
      Jael128 ronnie39403

      Posted

      Hello again Ronnie, yes I've been doing a gluten-free diet since all this happened. Actually I've had to eliminate spices and citrus and all sorts of things because my gut is so super-sensitive now. But Topamax created your sensitivity and it was removal of topamax that seems to have created mine so this is confusing! I am wondering if, in my case, it is just the trauma of the whole thing that has supersensitised things. Who would know. But gluten-free definitely provides a great deal of relief. I'm with you on that one.
  • Trudy_McA
    Trudy_McA Jael128

    Posted

    Over the last two months I've reduced my dose from 100mg to 25 mg but have yet to take the final step and stop it completely. I've had really odd aching but had not linked this to topamax until I saw your post. Have you managed to find an answer yet?
    • Jael128
      Jael128 Trudy_McA

      Posted

      You didn't mention what sort of aching you've had? Where in your body is it? Is it in your neck or back at all? Has your doctor been supervising how fast you're coming off the Topamax and recommended reducing it by the 75mg in two months? That's actually considered really fast. 

      As for me, no one has really known what to do. Just in the last couple weeks we've increased my Magnesium dose (which had been dropped over the last couple months, magnesium can apparently be really brilliant for pain, they give it to cancer patients) and increased the dose of Epilim I take for Bipolar and I am getting a small amount of relief because anti-convulsants are meant to provide some pain relief for this type of pain. But I am still in pain every day. Thanks for asking! 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.