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Trigeminal Neuralgia has come back after 10 years absence!

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alan21271
alan21271

Unfortunately a few weeks ago , I awoke one night with some pain in the lower left jaw, and some discomfort the following day. It's sort of lingered these last few weeks. Not as bad as when I as was first diagonosed , as I don't seem to be getting regular sharp pains through the day

My discomfort today is mostly in the form of Parastheisia , not hugely painful but annoying and disconcerting. I've seen my GP and am awaiting a fresh lreferral to a Neurologist but not speacialist in TN.  I've been reluctant to restart medication for reasons of side effects etc. (I was on Lamotrigene for many years at 500mg daily. ) But fear I may have to in order to improve my comfort. Can any advice be offered as to what med's today might be most suitable. I'm 57 years old (male) but seem rather sensistvie to medications today. Any advice ggratefuly received. Thanks in advance.

1 like, 3 replies

3 Replies

  • Valkyrie
    Valkyrie alan21271

    Posted

    My pain came back after an absence of a few months. Luckily I had been given Tegretol tablets by my doctor "just in case" and i took one. about half a day later when the tablet started to work i realised he had given me 200mg tablets instead of 100mg so i started using a half a tablet instead. Miraculously the pain stayed away on that small done of 100mg twice a day so after about three days i reduced it to 50mg in the morning, 50mg at about lunchtime and 100mg before bed. This worked for me and stopped both the massive pains across my face and the stabbing pains i had been having for about two weeks before that. I also take lysine twice a day which i think helps too. I have been very lucky though as i have never had to take more tegretol than that but it makes me dopey and i cant drive if i am on the 100mg twice a day but dividing the day dose into two halves means i can still go to work. It seems to work better for me than for most people (for now anyway) My neurologist was useless btw, he just said , yest its trigeminal neuralgia, take tegretol, your gp can prescribe it and that was it. Money down the drain that was. I have to say, though that its only been a short time on the Tegretol so i dont know if it will stay okay or come back worse. waiting...
    • alan21271
      alan21271 Valkyrie

      Posted

      Hello and thanks for the response. In truth I started on Tegretol and as you found it made me sleepy at the dose needed to stop the stabbing pains. I spent some years trying different drugs (all before 2004). The last medication I had was Lamotrigine which didn't appear to give me too many side effects. The waiting is the tricky bit I find, just not knowing has it gone... I hope it stays away for you.
  • Valkyrie
    Valkyrie alan21271

    Posted

    Yes, the waiting is hard to take. Every time i leave the house at present i wonder whether the pain will hit me. last time a friend drove me home and the journey was awful even though it was only about a 10 minute drive. You might be interested in this http://facial-neuralgia.org/treatments/alternative/lysine.html

    info if you happen to get occasional cold sores (which i do). I wouldnt dare eat chocolate anyway because i have noticed it makes the stabbing pains more frequent when i have had some but i now take lysine every day.

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