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Topomax and chronic back pain

Posted , 3 users are following.

lisainpain
lisainpain

Does it work? I have nerve pain in my back and thighs. 800mg gabapentin takes care of the legs great. They just increased my dose from 3xs a day to 4xs a day for my back. Also just picked up my script of 25mg at night which I'm getting ready to start but the side effects scare me to death. My friend takes it for migraines and it works wonders without any side effects.

0 likes, 13 replies

13 Replies

  • YorkshireLass1
    YorkshireLass1 lisainpain

    Posted

    Hi lisainpain

    Do not go there, it is lethal, go on to my profile and check out my post, in particular the one that mentions checking your symptoms, regarding this drug, it nearly killed me and that is not an exaggeration.  Yes it works, but the side effects are awful, it's up to you but there are so many bad reports about this drug it should be banned.

    • lisainpain
      lisainpain YorkshireLass1

      Posted

      I'm terrified of the side effects but the pain has progrestive ly gotten worse to a point where I have to sleep in a hard back chair or I'll wake up in excruciating pain. This is the second pain clinic I've been to and no meds or procedures are helping so far. Are you doing ok?
    • YorkshireLass1
      YorkshireLass1 lisainpain

      Posted

      All I'm saying is, yes they DO work, but PLEASE be aware of the side effects, as I said in the other post, the tingling sensation comes and goes and the weight loss is great, but sore throats etc... is worrying and can lead to other serious conditions.  I've spoked to loads of people on here who have had problems, but as long as you are tuned in to your body you should be OK. 

      Thankfully my test results were negative, but my migraines and CS are still bad.  My neuro prescribed me something else which I'd already had previously that didn't work, then he prescribed me something else, but it turned out it was in conflict with another condition I have, Lupus.  He has now "forgotten" about me and has more or less walked away, so I am back to square one again.  I spent the best part of £600 on private consultations last year and I'm nowhere further on.  Still get about 10 headaches/migraines a month and am living on prescription painkillers which are not good for me.

      I hope you get some relief and if you go down this road PLEASE be careful

       

    • lisainpain
      lisainpain YorkshireLass1

      Posted

      I'm so sorry you are going through all of this. I will watch out for myself. ...unfortunately I have other medical issues I'm dealing with....I thought at least this one was more or less treatable
    • lisainpain
      lisainpain YorkshireLass1

      Posted

      I'm reading all these posts and I'm scared. ...as I've said I'm taking Topamax for severe back pain....I am having a serious problem with my memory. ...I'm missing blocks of time of having full conversations with people and remember none of it! I take so many other meds for other medical issues that make me sleepy so I thought it was a combination of all that. I know my drs think its all in my head....I've been told that for years then they end up finding something and it's off to surgery I go again! Recovering from another abdominal surgery I just had on Tuesday. ...so I go for my follow up tomorrow after a month of taking the Topamax. ...we'll see what the dr has to say....the back pain is extremely bad and I just want something to work
    • YorkshireLass1
      YorkshireLass1 lisainpain

      Posted

      I really think you should come off them, your side effects are not good and could get worse.  Put your foot down with your GP and TELL him you want something else
    • lisainpain
      lisainpain YorkshireLass1

      Posted

      It's actually my pain management specialist that prescribed it...so far I don't think it has done anything but I'm not sure how long they are planning on keeping me on it.
  • Dumdum
    Dumdum lisainpain

    Posted

    I have been badly damaged by this drug and have just spent the last year up at the National Neurological Center at UCh where they tried to fit my remaining problems to every possible disease known.

    Finally they have sent a letter linking it into the actual sequence of events of starting to take this drug and I only took eleven tablets!

    Accordng to them my problems are unique and not recognised. This is what worries me in that here this drug is being dished out like smarties as a new wonder cure and in the USA is now has a huge ambuance chasing history.

    Go onto and look at the American sites and you will see just how differently it is viewed. The FDA statistics say I will never recover from the problems I have at my age. Spend a couple of hours searching and you should step away from it.

    I now aim in the first instance to start a public facebook group to see how many are involved in this mess and to hopefully be able in the due course of time to take this drug into the public eye in this country.

    You can look at my profile on here as well.Nothing is hidden.

    I am in a real hurry this morning but will come back to you later on how I manage my neuropathic pain in my leg etc. xx

    • Dumdum
      Dumdum lisainpain

      Posted

      Hi Lisa, sorry normal life got chaotic.

      Neuropathic pain is horrendous and I have explored loads of way of managing over the last twelve years.

      Years ago I read an American article that that suggested that you had to be in control to manage it. I decided around that point that if it hurt to lay around and feel sorry for myself and it hurt to get up and live my life the best I can then I was going to have to use mind over matter and get on with it.

      Are you in a Pain Management Programme/Clinic locally?

      I started with  Pyschotherapy within the Clinic team supposedly to help me to learn to live with the pain.

      At the same time we worked are way through the various drug protacols and in my case I reacted badly to Gabapentin and only lasted two weeks on Pregabalin. Have you tried Pregabalin?

      Within the Pain Team I was also offered various injection techniques and we found eventually something that gave some relief and then budget cuts altered the frequecency of day cases to the point it was pointless. It was at that point that Topamax was suggested and we opposed this idea and they insisted and my life when pear shaped from that point onwards.

      What I have managed to do is to also take on the advice from the surgeon who caused my problem and he said (apart from sorry) was that what was happening was an orchestra and I would need to learn hard and fast how to conduct it.

      This means with the help of a knowledgable Dr I have analgesia options in a drawer. I get up, see to my basic chores and assess how the day will pan out and open my drawer and choose what I know will be best for me. I also have Lignocaine Patches for doing  a day out.........you will understand that a day out is paid for by three really bad days afterwards. I take the standard low dose drug antidepressant at night to help me rest, but have adapted to not going to bed until I know I will sleep (I can loads done at night when the house is quiet)

      But I discovered Mindfulness an learn to clear my 'monkey mind' and I found the most amazing meditation group which taught me self healing meditation techiques..............I have pushed hard with the Pain Team and am currently on the list for nerve mapping with the hope of managing to knock off the actual nerve.......I would actually happily walk with a limp for the rest of my life if the pain would go away.

      .............you so need to look at the pain and the enemy and refuse to let it win......play around and find what helps. McTimoney chiro keeps me uprght and straight as I over compromise to keep the pain down.......think outside the box and look at all options and find what works for you xx

       

  • lisainpain
    lisainpain

    Posted

    Wow...you really have found something that works for you. I'm on my second group of pain management team. They are are now talking about doing what you are doing. Learning to live with the pai5...coping...and things th as t can reduce the pain. I very rarely sleep in my bed. I wake up in excruciating pain. I've had procedures and all kinds of meds and nothing seems to be working. I just want the pain to at least be tolerable. I would kill for a good night sleep in a bed!
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