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ongoing TN since sept 17

Posted , 9 users are following.

looloo43
looloo43

Hi I've had TN diagosed sept 17 following intense headaches & burning pain (like shingles) randomly over scalp, facial bones, neck & left shoulder. I am on tegretol which gives moderate reflief, but makes me so tired & kind of foggy. I read somewhere that doctor should refer patients for mri after 6mths if symptoms still present - anyone else heard this? my main troublesome symptoms are really random intense headaches that last days & bad pain in my right shoulder particularly (like shingles burning pain not an ache) & i also get random "flashes" of pain in bones in faces, jaw, scalp, back of neck (not aches, like flashing stabbing or burning). I dont want to remain on tegretol long term because of the way it make me feel. Can anyone give me any advice, experience, or suggest what to do? Any comments, info welcomed. Thankyou x

0 likes, 20 replies

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  • Chrisnyc
    Chrisnyc looloo43

    Posted

    Hi,

    I have suffered with TN for nearly 30 years and it has destroyed my life.  The burning pain on the scalp is surreal.  The burning pain on the neck an shoulder is so bad, I can no longer wear clothes.  A shirt brings on unbearable pain.  Of course this went undiagnosed for 25 years, where I was told it was all in my head. Until this day, doctors have little to no experience with it and look at me like I'm crazy.   I lost my job, my house, my family and every cent I had.  Now I know what it is, but there is little to no relief.  My life is over.  The last drug I was on Tegretol, knocked me out so bad I ended up in the emergency room.  I am now thinking of Dignitas in Switzerland, a place where I can euthanize myself.  There simply is no hope and I'm alone in this mess. 

    • looloo43
      looloo43 Chrisnyc

      Posted

      Hi Chrisnyc. I'm so sorry your severe TN is getting you down so much, & am sad to hear you are even thinking about euthanasia.  Have you ever asked you doc to try amitryptilline which can "dull" nerve pain in many nerve related conditions? Has doc ever given you a course of oral steroids to try & calm it down? & also have you thought about counselling to help you deal mentally with the problems TN has brought you? My heart goes out to you.......

  • lori99206
    lori99206 looloo43

    Posted

    My daughter has had multiple problems over the years. She has a rhizotomy in 2017. She has all of your symptoms. Yesterday the put an cup,monitor on her and found she has a spinal fluid leak. I wonder how many sufferers my have a small leak changing their spinal fluid levels.

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