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breakthrough pain or tablets not working again

Posted , 8 users are following.

fed-up
fed-up

hi, im back again. when i first had TN i was on oxcarbazepine which made me look like a whale and week after week the tablets weren't working.  i was put on tegretol and for 4 months it was like i'd never had TN, i was on 400mg of tegretol, i had a wondeful summer, made new freinds, drank alcohol, took tablets with alcohol and so on.  back in december 2015 the pain started again and had to double up on tegretol and today im on 1200mg of tegretol and back to being petrified of the pain which i had today. i don't know if its breakthrough pain or the tablets just aren't working and don't  know what to do, i am at the doctors tomoro and don't know whats going to happen. i had seen a neuro who i believe was the hospital janitor who had stolen a neuros badge and locked the real neuro in the cupboard.  i had seen pain clinic but the tegretol was working a treat and only needed counselling and still waiting for that to come through. i have read about botox being a wonder treatment and have also heard of RADIOFREQUENCY LESIONING which is supposed to be one of the best, has anyone had any of these treatments? but for now till i can get my hands on either, what drug should i try next?? i am also on gabapentin.

many thanks

1 like, 25 replies

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  • fed-up
    fed-up

    Posted

    nope. doc wasn't having me on another tablet, said i have to stay on tegretol and all these side effects for at least 2 weekes then go and see him, i di mention thati had upped the dose after just 4 days of the other upped dose, these tablets clearly aren't working anymore and who is it thats in pain? with that radiofrequency leisoning it kills the nerve permanently, but could be left with some of your face numb, he said do you really want that? i nearly said do you want a punch? im going to see another  doctor tomoro night,  my usual one who's known me for 15 years and see what he says.
    • Tmg72
      Tmg72 fed-up

      Posted

      Hi

      It's my Dad that has TN so I can't understand fully, but have seen him in agony and truly sympathise with you. Over Christmas my Dad's pain was horrendous, it was previously quite predictable, eg only pain if touched or moved, no pain while sleeping. But that all changed, one attack lasted 20 minutes! The dr just wanted to prescribe a muscle relaxant and an extra box of carbamazepine ! He was starting to get double vision from the tablets/extreme tiredness but no pain relief.

      He insisted on being referred to a specialist. 2 weeks ago he had gamma knife surgery. I know it doesn't work for quite a while after the op, but he has only had 1 'shock' since the op! He can still feel the lurking pain and is still on the tablets, but is so so much better.

      It did also seem that the pain was effected by barometric pressure.

      I hope that you get sorted soon, the tn book is really good. As someone advised us, work out what your options are and keep pushing for what you need x

    • fed-up
      fed-up Tmg72

      Posted

      so happy for your dad, long may it continue. not sure why he was given a muscle relaxant, thats as bad as my doctor giving me morphine for the pain!!!
  • maggie80535
    maggie80535 fed-up

    Posted

    Why not try acupuncture? I had 10 sessions in a month and 2 weeks later I was in remission. It was better than winning lotto.Now I am still in remission 7 months later. 2 years before that I had TN and fell and broke my hip and yep...in  intensive care realised the TN had gone. So maybe physical interference might do it.lol . Have you got a friend to knock you onto the grass? Lol .Only joking of course. Best wishes from Oz
    • wanganui
      wanganui maggie80535

      Posted

      Interesting maggie! Whenever I have had some other illness yay my ATN disappears! Almost as if my body is saying " you can only cope with one thing at a time!"I had acunpuncture for a while but didn't help unfortunately...very glad it helped you though!I think we can all understand that being in remission is better than winning the lottery!!! All the best...
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