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Hi, my name is Nicky, 45 years old and a TN sufferer. My first really bad attack was 12 years ago out the blue. Constant pain for about 2 weeks and then nothing........till recently!

Last 4 months I've had 5 attacks of electric shocks through right side of mouth then burning and red all the side of my face. These attacks last from a night to couple of days but the pain is excruciating and then shocks on top of the pain, horrific. I have started carbamazepine twice a day at 200mg and the pain has subsided but am getting few twinges through teeth. Should I stop tablets now as pain stopped, at least for now!

This is an awful thing to suffer with terrible pain that comes from nowhere, I've also spent a fortune at dentist only to be told teeth are fine!

Thank you for listening xx

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  • Posted

     have had 4 operations since 2002  Pain started around 1990. Seems your pain is in V3 section of nerve, the Mandibular Nerve with connections to the Lingual nerve. My 4th operation failed, but pain went into remission 30 days ago anyhow. Was doing 800 mg carbaz daily. Now in remission take 300 mg daily. I always quit all meds 30 days after remission. I have had so long I will continue 200 mg daily permanently. I suggest continuing at least 6 months from last pain. Good luck
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  • Posted

    Hi, my name is Steve. I was diagnosed with TN today after 2 weeks with the dentist and a root canal and a couple of fillings. The Dr.  Put me on lyrica today. I am in so much pain I can,t eat, sleep or get any releaf. My teeth hurt so bad can,t talk. 

    The Doctor doesn't help much. He told me to come back in two weeks.

    any suggestions 

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  • Posted

    I,m new to this forum. I am looking for information. My Doctor gave me lyrica for the pain. After reading through the post I haven't seen anyone mention lyrica. Any feedback would be appreciated.



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    • Posted

      Hi to Steve & Nicola

      I would have thought tegretol would have been the first tablet you would have been given. You do have to be careful this with drug (as with majority of meds) but I found tegretol gave me near enough immediate relief. I was on lyrica too but didn't find that as effective.

      Nicola I would personally stay on your meds a bit longer as you say you're getting a few twinges through your teeth. I recently dropped my medication in half but have had to go up again as couldn't bear the pain. Still in pain most of the time but at least I can speak in full sentences now! Not good.

      Hope you both feel much better soon!

      Paula xx

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  • Posted

    Hi Nicola - I have read a few reports from people with TN and I am very upset and shocked that any dentist would just go ahead and do dental work on you.  Twice I seen my dentist.  He would x-ray and check my tooth over reporting that the problem was not dental.  I am so grateful that I did not have to go through with any dental work.  As far as your question goes regarding your medication, I would go back to your physician and get his opinion.  Stopping any medication even though you are having pain-free days, is not a good idea unless you are having side effects from it.  I too did suffer with many electrical shocks that would bring tears to my eyes. If you have any further questions, please feel free to contact me.
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  • Posted

    Hi Nicky - I was diagnosed with TN in 2006 and MVD surgery in 2009.  Unfortunately, the surgery was unsuccessful.  I can fully relate to electrical shocks.  I had them constant until I had my surgery.  Now no shocks at all.  The shocks were so painful tears would roll down my face.  So sorry to hear about your dental expenses.  I was very fortunate as I had many x-rays done and all of these x-rays showed that my teeth were fine, therefore, no extractions or root canals.  Wishing you the very best.
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