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Newbie to TN

Posted , 9 users are following.

archer1215
archer1215

so I have only had TN for about 6 months. I can honestly say that I am not looking forward to what looks like a really bumpy road. I am taking it one day at a time. I am on tegritol and already on my 3rd increase in dosage. I am finding little things hard to deal with. This mornign I was terrified to even brush my teeth. What is the alternative. does anyone have any suggestions.

0 likes, 41 replies

41 Replies

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  • eddie13
    eddie13 archer1215

    Posted

    Archer,

    I'm at 9 years. Once you get treatment settled, it won't be too bad. Not perfect but nothing you won't manage.

    For record which likely does not apply to you, I'm on tegretol 4 X 200 mg / day.

    eddie13

    • archer1215
      archer1215 eddie13

      Posted

      9 years! I'm 6 months in and i'm loosing my mind. I feel like a coward. I have always felt that I had a high tolerance for pain,but this! This is too much. I keep trying not to panic but I don't know what to do. I'm on the same dosage you are. It isn't working for me. 

  • paul49262
    paul49262 archer1215

    Posted

    Hello

    my daughter has only been diagnosed in the past couple of weeks and due to her only being 20 years old the doctors have referred her to see a Neurologist, however we have to wait till the end of September even though this referall is as an emergency.

    However my daughter has been taking Reiki sessions which we think has been a help as it really relaxes her and helps with her stress levels. We are not saying that it is a cure by any means but her attacks have been less but of course it could also be that she has her medication at the right levels as well. To be honest we would have tried anything to help her with the pain control. All the best with anything you try to control the pain. Paul

  • Valkyrie
    Valkyrie archer1215

    Posted

    Hello Archer, I agree with Baudwalker. We each have our own journey. I am on another Forum and the people there have very differing presentations of Tn and very different medications and procedures. I have been comparatively lucky so far but even so I have had many increases in medications from 200mg Tegretol twice a day to where I am now which is 900mg Tegretol and 350Lyrica. I have also had Gamma Knife surgery which does not hurt or cut the skin as it is radiosurgery. So far it has been incredibly successful although I have only been able (so far ) to decrease the meds to where I am now from 1100mg Tegretol and 450 Lyrica. I feel good but I remain apprehensive and vigilant and I stay on the Forums to continue to collect information as Tn pain can return at any time and I may need a different procedure or drug.- Valkyrie
  • karen36710
    karen36710 archer1215

    Posted

    I am looking at MVD surgery....I think that is the only solution.  Although there are many specialist who do this surgery I would have it done only by someone who specializes in this and is in a canter of excellence?  Where do you live?
  • archer1215
    archer1215

    Posted

    Still getting used to the day by day thing. i'm a busy parent. and now i am constantly distracted by the anticapation. i feel like I'm in a room with a monster just waiting for it to attack. I'm afraid to eat, brush my teeth, or even be out in public.

    • Valkyrie
      Valkyrie archer1215

      Posted

      I know that monster well. I wake every morning expecting it to be with me. I feel every cold breeze and expect it to spring upon me.. It still crouches in the shadows even though I have not experienced it since 15th April this year.
    • archer1215
      archer1215 Valkyrie

      Posted

      today was the first time it happened at work. it doubled in length. this time 4 minutes. i had given my co-workers the heads-up but they were still shocked when it happened. I'm on 800mg Tegretol. i've never been so scared in my entire life. i am trying not to freak out. i'm trying to see how I keep going with this in my life (and i will keep going). right now, i just can't see it. 

    • Tnhurtsme
      Tnhurtsme archer1215

      Posted

      If makes you feel better my is a constant pain that very is dull pain but it can hurt really bad stress makes it worst an i dont have triggers mine just hurts all the time
    • paul49262
      paul49262 Tnhurtsme

      Posted

      Hello

      our daughter is recently diagnosed but she has found that Reiki Sessions has helped with her stress levels and has helped to manage her pain as well.

      She is just about to start her final year at uni to be a  Nurse so her stress levels have been through the roof with her year 2 exams etc. 

      It is worth a try as she said nothing ventured nothing gained.

      Good luck all the best

    • Tnhurtsme
      Tnhurtsme paul49262

      Posted

      This is true but i heard acupuncturist can really help
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