Diagnosed with TN 2 weeks ago

Posted , 6 users are following.

im 43 and also have pbc , the medication makes me drowsy On top of severe Fatique, really not coping with the pain very well, In fact not coping at all with it, any advice would be so much appreciated

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  • Posted

    i think you forgot to say what medication you're taking that' making you feel drowsy? its ok, just try n relax, for me breathing in cold  air thru my mouth seemed to ease the pain before i started my tegretol.

    i understand your pain, im 46 and have now found out i've had tn my whole life, for me it stated around 4th grade, thankfully my episodes are few and far between but the pain is unbearable, truly unbearable....

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  • Posted

    There are a number of different medications that might have fewer side effects, but considering you're 43, I'd take a long look at MVD surgery. You can easily Google it and watch videos of the procedure on YouTube. I'm biased because I had a successful procedure in August. The success rate is up to 80-85%. Keep in mind the meds likely won't work forever, TN usually gets worse over time, and recovering from surgery gets more difficult as you age. Strike while the iron is hot, so to speak.

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  • Posted

    Sorry I was on gabapentin but now on tegretol, I'm no means soft when it comes to pain , but omg never had anything like this, all new to me but thank you for advice I truly appreciate x

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    • Posted

      i'm on 2400 mg neurontin and it didn't help. it's so funny that one medicine made such a difference fo me, and that was tegretol. i've made many a trip to the er over the yeears because mine ALWAYS occurs at night so no dr's offices are open. i've taken TONS of painkillers over the years and it never took the pain away, only took the edge off. since i've been on tegreol i've not had one episode.. sonia you could be the most pain tolerant person and you would still get your butt kicked by tn

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  • Posted

    Thanks andraste I do feel like I'm getting my butt kicked , I guess we have to keep trying , onwards and upwards , I've worked in healthcare for 20yrs never heard of TN , I guess I'm on a learning curve of procedures and medicines,

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