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Topiramate for fibro?

Posted , 6 users are following.

jeanne81532
jeanne81532

Hi all, wondering if anyone has tried Topiramate as an alternative to Pregabalin. If so, how was it? xx

0 likes, 10 replies

10 Replies

  • cherub123
    cherub123 jeanne81532

    Posted

    unfortunately i have never heard of it. pregabalin did not work for me or gabapentin i have now been put on Naproxen just one a day.bit my pain is getting me further down. Topirmanate seems very strong
    • cherub123
      cherub123

      Posted

      what is it like for you? what are your symptoms?
    • jeanne81532
      jeanne81532 cherub123

      Posted

      Hi there, on further investigation it would seem that Topiramate is only licensed for treatment of migraines, not as a treatment for neuropathic pain. I was interested because I read a post on another site, about it not causing the weight gain that Pregabalin seems to cause. Preg controls my pain quite well, but I hate being so overweight. 

            Ooh, Naproxen. I can't take any NSAIDS. I get a sore tummy straight away. Have you tried amitriptyline? That works for me too, but makes you dopey the next day. xx

    • cherub123
      cherub123 jeanne81532

      Posted

      amitryptiline was the first one the doc gave me, but it caused so much problems i was always dopey and couldnt wake up when i went to sleep. my parents were so worried about me and my pain was not getting anywhere. i was prescribed this after having TB but even though i am on Naproxen, i am still in a lot of pain in my chest and all over my body. i am not allowed to take NSAIDS pregabalin and amitryptiline used to always make me dopey i have had so many NSAIDS in the past but am still in alot of pain. i have had so many different tablets but they have not seemed to work for me. i am now on Naproxen just one a day and am due to have a brain scan cause my memory is bad.
  • UKSteve
    UKSteve jeanne81532

    Posted

    Hi Jeanne,

    I have done some digging into Topamax for fibromyalgia pain there is a little research around but not many studies.

    However from what I have seen from some studies and the many user review forums on medical and fibromyalgia websites it does seem to indicate some success for the nerve related pain associated with the disease and great success for it's off label indication for headaches, migraines, TMJ and trigeminal neuralgia ( all of which can be comorbid with fibromyalgia).

    Indications are that it works in a similar way to pregabalin and gabapentin the seizure medication mechanism work on the same GABA systems in the brain. There is also another anti seizure medicine called Keppra which is also starting to do the rounds for migraine. Neither topamax nor Keppra have been given off label indications for fibromyalgia because of the lack of satisfactory study results.

    The main side effects of topamax seems to be similar to those associated with pregabalin notably memory loss confused thinking some dizziness and drowsiness the other major side effects of course is quite significant weight loss switch for many fibro sufferers is probably welcomed.!!

    Having tried many of the usual list of suspect medications and having no real luck I have recently been giving a prescription for generic Topiramate.

    I did a trial of 25 milligrams last night I had a rather strange night of insomnia for the best part but a half sleep half awake weird dream state. At 6am I took another 25 milligrams and that dose immediately put me to sleep for 4 hours. It wasn't unpleasant because ultimately I got some decent sleep but it was confusing because I can't tell whether it is sedating or stimulating.

    I have decided to hold on before taking it properly for a week or so because I am still stabilising on another medication. However once I start I will report back on what pain relief if any I experience.

    I guess we are guinea pigs in the field of Medical Research

    • jeanne81532
      jeanne81532 UKSteve

      Posted

      Wow! Thanks Steve! That's really interesting. Yes, please keep me informed how you get on. You can pm me if you like. I know exactly the half sleep half awake dream state you describe; I too have experienced that with some meds.

  • ann616
    ann616 jeanne81532

    Posted

    If you are still interested in the topic of Topiramate and the treatment of Nerve Pain and/or Fibromyalgia (although I am late to this topic) I can tell you I have had great results being a guinea pig for this drug regarding these conditions. I started on a low dose and increased gradually to 200 mg. I have used both regular and time released (Trokendi XR) and the result for me were FANASTIC! I suffer from both Nerve Damage due to neck surgery and Fibro, and this drug has been my saving grace!! Starting slow and titrating up...the only side effect was a welcome weight loss of 20 lbs. Talk with your Pain Mgmt Specialist, but I highly recommend it if you suffer from any nerve type pain that can be helped with this drug.
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