Trigeminal Neuralgia... anyone?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by kjfms, Feb 13, 2013.

  1. kjfms

    kjfms Member

    I have trigeminal neuralgia, recently it has been getting a lot worse - it bad enough.

    Does anyone eles have this horrific diagnosis and has your pain gotten worse over the years? Has is gotten better?

    Thanks,

    Karen
  2. Nanie46

    Nanie46 Moderator

    My adult daughter has trigeminal neuralgia. Her TN, fatigue, etc is from chronic Lyme and Bartonella.

    She is improving with long term treatment. She does say that Alpha Lipoic Acid has helped the TN significantly.
  3. kjfms

    kjfms Member

    Hi Annie46:

    Thank you so much for responding. I am sorry you daughter has to go through this TN pain. I can honestly say it is the worst pain I have ever had in my life. My neurologist has recently increased my neurontin to the maximum dose, waiting to see if it will help. I will look into the ALA and ask my neuro about it, thanks again. :)


    Karen
  4. ditd

    ditd New Member

    I have atypical TN. I have found it is getting worse as the years pass. I need to continually change or up my meds. I am so sorry your daughter has to go through this. It is the worst pain I have ever gone through. I have had periods of remission. Stress seems to be my #1 trigger. What kind of TN does your daughter have? There are more options with typical TN including surgeries, than atypical. I AM Presently on Lyrics 300 mgs daily split into 3 doses and my Neuro has recently added baclofen starting dose 20 mgs daily and he is going to up it because I have been on it and it has helped a lot but not enough. It takes a while to start working. Cymbalta did not help.me. there are other drugs that may help also but again they take awhile to start working.
  5. kjfms

    kjfms Member

  6. Waynesrhythm

    Waynesrhythm Member