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Just diagnosed with trigeminal neuralgia

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jason15970
jason15970

Hi, new to this! I was diagnosed with this yesterday after suffering around 2 weeks with facial pain on the right hand side, behind my cheekbone and down my jaw, a constant 'dull' throbbing with occasional 'flashes' of more acute pain. It started just after dental work but the dentist looked at me twice again and confirmed it is not tooth related, even though sometimes it feels like the pain is hitting there! I have been prescribed Carbamazepine, one pill per night. Any words or advice or such are welcomed!

1 like, 38 replies

38 Replies

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  • Glor888
    Glor888 jason15970

    Posted

    Hi Jason

    Welcome to the forum.

    What dosage are you on? And tegretol (carbamazapine) is the best medication you'll have.

    Are you experiencing any side effects?

    Ive been suffering for over twenty years on and off. I'm now retired and my TN returned with a vegence but sadly Tegretol doesn't work for me anymore.

    all I can say is take your mess reliously and maybe, you'll find your TN will disappear sooner rather than later.

    good luck and let us know how you get on.

    best regards

    Gloriana

    • Glor888
      Glor888

      Posted

      That should read Meds not mess lol
  • RachisCool
    RachisCool jason15970

    Posted

    Hi Jason, yeah it's a shock to hear you've got something no ones ever heard of and your lucky to have a great Dentist and he didn't rip out your back teeth before saying it's not that. It is possible you only have the once and it doesn't return. Mine's being going for a year now, on and off. I took carb. Too but it hardly touched me so slowly you must increase this and check with your doc first or like me the agony persisted. I take lamotrigine as the other made me feel sick but since I've heard you have to stick with it and it passes. How old are you Jason, I am 47 I was more upset this condition is for alot older people than me and thought I was aging before my time lol. Apparently not the case, it can strike at any age. There's lots of options that you can discuss with your GP if it persists and your not alone. :-)
  • RachisCool
    RachisCool jason15970

    Posted

    Hi Jason, yeah it's a shock to hear you've got something no ones ever heard of and your lucky to have a great Dentist and he didn't rip out your back teeth before saying it's not that. It is possible you only have the once and it doesn't return. Mine's being going for a year now, on and off. I took carb. Too but it hardly touched me so slowly you must increase this and check with your doc first or like me the agony persisted. I take lamotrigine as the other made me feel sick but since I've heard you have to stick with it and it passes. How old are you Jason, I am 47 I was more upset this condition is for alot older people than me and thought I was aging before my time lol. Apparently not the case, it can strike at any age. There's lots of options that you can discuss with your GP if it persists and your not alone. :-)
  • michael127
    michael127 jason15970

    Posted

    Hi Jason, Welcome To The Forum, And Sadly To The TN Club. I`m Uk Male 66 Had TN For 20yrs . I Was First Diagnosed TN By The Paramedics Who Said Put A Bag Of Frozen Peas On The Side Of Ur Face (doesn`t work with everyone). I`m Hopefully At The End Of A 2 month Continuous Attack  Of Between 6 - 9 A Day. My Remedy Is By Using The Frozen With A Co-codamol Under My Tongue. Once The Tablet Has Nearly Dissolved Then A Swallowed Tramadol. Sadly This TN Can Be Recurrent. Wish You Well As With All Other Sufferes.
    • RachisCool
      RachisCool michael127

      Posted

      I took tramadol with my lamotrigine and I nearly passed out... Not a good combo For me. :-( as for the frozen packs I think for me the cold would send my face en teeth into a frenzied spasium of agony. I use a woolly hat en scarf, it's surprisingly effective with added paracetamol. Mike, my attacks can last about a week then three weeks later it's all back again. Does anyone in your family suffer from this? Could it be genetic?
    • michael127
      michael127 RachisCool

      Posted

      Not Genetic. DON`t Take TWO STRONG Drigs Together.Try Hot Water Bottle.
    • genny25800
      genny25800 michael127

      Posted

      mine   begin   in  my  ears    like  thunder  an  lighthing   what  i   do  then   any  anwser s  i  am  depressed    andycrying     i  wish  god  would  take   even    neurgoulist   the  doctor   told   my  husband   that    3  times  that  you  want  to  jump   off   the  bridge   just  commit  sucide    thaat  pretty  sad  i  wish  something  would  help  us  right   awaycry
  • RachisCool
    RachisCool jason15970

    Posted

    Oh dear know how you feel I had tooth and ear ache then it felt like I'd got sunburn on my face, hideous pain plus headaches. The doc confirmed TN. *sighs* I also took one of the same but it did nothing so looking back I needed more but this one your using had to be built up gradually plus you need s blood test at the start to see if your kidneys are up to it.
  • caryl33332
    caryl33332 jason15970

    Posted

    Carbemazepine has been the drug of choise for trigeminal neuralgia for many, many years and is quite effective.  There are other medications available for TN as well and there are treatments such as radiation, gamma knife, and micro-vascular decompression with craniotomy.  I urge you to do your research on all the treatments available so that you are familar with all the options.

     

    • colleen90451
      colleen90451 caryl33332

      Posted

      Tegretol and Gabepentin worked for a little while then gave me a bad rash , had to be hospitalized
  • Valkyrie
    Valkyrie jason15970

    Posted

    Is your Carbamazepine a 200mg pill? Did it help at all?
    • Valkyrie
      Valkyrie

      Posted

      Sorry Jason, I hit the send button before i was finished. The usual dose of Tegretol is taken 12 hours apart because that is the usual time it lasts. I beleive most people start on 100mg twice a day (night and morning) and the GP increases it as needed. but if your night dose is working, its working.
    • RachisCool
      RachisCool Valkyrie

      Posted

      Val did it make you feel sick and drowsy and can you work after taking it?
    • Valkyrie
      Valkyrie RachisCool

      Posted

      Didnt make me feel sick and have just stopped working because it made me feel very tired which i kept working through but with only 10 days to go til my op I thought i should rest up and get ready  by not being tired.
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