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Hi everyone. My Mom 67 is suffering from TN from 4 months already and has no improvement at all.

Posted , 4 users are following.

ingrit95267
ingrit95267

On October 2014 my mom had a stroke which let her left side

shoulder, arm and leg weak, started to recover But suddenly

horrible TN disease appeared. And is destroying her day after day

, turning back everything upside down.

She is prescribed with tegretol on 800 mg daily now.1 month now. unfortunately Without any results or realif . She getting worse

everyday. She has 2 days that she only vomiting, she doesn't eat she doesn't sleep, she's not active anymore at all. She's very

weak And has pain Everywhere.

Here in Albania the doctors do not have enough experience with

this terrible and rare disease.

Her neorologist doctor has prescribed tegretol,Cymbalta, and

tramodol for pain, besides horrible sides effects she is not

improveing, just worsen. Had her doctor tried to change the

tegretol to switch to another one? At least!

Any suggestions

appreciated

1 like, 7 replies

7 Replies

  • ingrit95267
    ingrit95267

    Posted

    Also my mom takes meds for diabetes, hypertension ,

    colesterol , blood thinner, xarelta etc ..

    So there are a lot of meds to take which might give other side

    effects and destroy liver and other organs ,

  • colin69485
    colin69485 ingrit95267

    Posted

    Dear Ingrit

    Your poor mom! What a terrible, time she must hsving and you, for having to support her.

    Your mom seems to have a very wide range of symptoms, including vomiting! In my limited experience, it doesn't sound like TN - the effects seem so widespread. TN tends to be localized and normally confined to the face. Are you able to get a second opinion? Your neurologist may well be right but it sounds like you dear mom needs some more professional advice.

    Take care! Colin

  • michael127
    michael127 ingrit95267

    Posted

    So sad to hear of your Mum`s pain.  I`m not a doctor, but with the TN problem put a pack of FROZEN peas just above her cheek and move after over the the FULL half of her face, top of head included behind the ear also {best to wear gloves}. any sort of painkiller is best under the tongue. to make ease ur mind i`m on tramadol also as a last resort try co-codamol. best wishes. xx
  • ingrit95267
    ingrit95267

    Posted

    Thank You so much for your Advices ☺

    Appreciated

    Thanks for responding to my post. .

    I hope that doctors and researcher find better drugs for this kind of diseases. And better solutions

    I have heard that even in US or Europe patients with facial pain and other symptoms have difficulty to find relief and solutions. Unfortunately 😯

    • michael127
      michael127 ingrit95267

      Posted

      look ingrid, there is a risky operation for TN,TN is facial only and extremely painful SEE DOCTOR
  • RachisCool
    RachisCool ingrit95267

    Posted

    Try buying the book "Striking Back" its informative I've heard. I am going to get it and have a look.
  • ingrit95267
    ingrit95267

    Posted

    I already have the book "striking back" but I read only 1/4 of this.

    I do not know if this book has more information than internet

    provide .

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