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such an evil condition

Posted , 2 users are following.

Guest
Guest

hi everyone i was diagnosed with tn when i was 26 i am now 33 and god only know`s how i have made it to the age i am now, when i first started with the pains i struggled to cope i just wanted it to all end all the doctors kept on doing was giving me medication, there is not a tablet out there that i have not been on for this condition, at one point i was taking 25 tablets a day they spaced me out and made me tired but still the pain broke through, i was pushed from pillow to post seeing all kinds of consultants at all different hospitals for m.r.a and m.r.i scans anyway 3 years ago i had micro vascular decompression surgery but that for me didnt work, then last year they tried the one where they freeze part of the nerve (go in through your cheek with a needle) again that failed but i was told that it may take a couple of times in january this year i had the freeze done again and touch wood i have been pain free, i do still take carbamezipene but i can live with that and to keep on top of things i am waiting for a course of gamma knife, at times i would sit and think what the hell have i done in life to deserve this it is such an evil condition but it is good to know that we are not alone in this and can share our thoughts on this condition and feed information to eachother, if anyone is waiting for any of the surgery that i have had done and would like to know anything then just let me know i`m not a doctor but i have gone through it so it helps to pick someones brain that`s been there.

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    my heart goes out to you. i am just about to up my medication. had an attack the other day. too say it was hell would be a under statement first time it happened about 2 years ago see post 28.11.o8
  • shandromeda
    shandromeda

    Posted

    Your right this is the worse pain you can go through,i've had it for six years now,after having teeth out i was put on amitriptyline it went for three years but now its back,i uped the amitriptyline but this time it's not working.If it wasn't for family it makes you want to do away with yourself,but a lot of people don't know how bad it is.I thought once it was gone that was it no body told me i could come back.Can it ever really go for good?,shandromeda
  • Guest
    Guest

    Posted

    I am sorry you re still experiencing 'The Pain' and I must admit that after 15 years, so am I. Over the years I have found ways of nullifying the pain but it took some time. When I was first diagnosed I was told I would have this complaint for life so I am quite resigned to this. I did go to a consultant who would not carry out any of the operations until none of the pills worked. I take Tegretol and Gebapentin and they hold things at bay, and even through the remisions I carry on with the pills. I have been doing this for so long now that I don't even know when I am in remission.

    I am lucky that I have a good doctor who I have convinced that as the pain is all mine, I will decide how many Pills I will take - and he agrees, so he has now left the control to me. This is how it should be. I have come late into this site and I have been surprised on how those with TN allow their Doctors to dictate what and how many Pills they need to dull the pain, sorry it's our pain we should decide the cure. I must admit I have been on 400mgm of Tegretol tablets for so long and I keep strips of them all over the place - I don't intend to get caught out.

    Anyway hope this helps in some small way but I am sorry to say but I have been told and have read about TN and it's for life. Please find a pill that works even if you have to increase the dosage yourself, as I said it's your pain.

    -L-

    Shanara

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