Has anyone else been diagnosed with trigeminal neuralgia as well as vasulitis

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  • In our experience, any touch or movement was excruciating and I cannot imagine anyone w/TN getting their face massaged. The initial pain was so severe she refused to talk, drink or eat other than crying or screaming in pain. Once the tegretol kicked in she was eventually able to function normally, the patches helped numb her face from the outside until everything settled down. After about a year and a half it all resolved and thankfully never returned. Eight years later she got vasculitis and some say it's related, but who knows! I hope you find something that works well for you and that you aren't suffering too much.

  • I meant a massage when appropriate.

  • A dentist specializing in TMJ pain may help and I've found plain aspirin seems to quiet the pain down.

  • I didn't spell right Lyrics is the med I. take been on tegretol neurontin you name it I have had it. My pain and numbness has been constantly. With me never goes 14 years now.do you see a neurologist?

  • ,lol my tablet did it again LYRICA it doesn't like the word sorry

  • Acupuncture?

  • I have both trigeminal neuralgia and WG and have been on neurontin, tegretol, lyrica, topomax, and more, even tried nerve blocks, however only time that it has gotten better with minimal facial pain and shocks was when I have gotten my Wegeners under management.

  • When I was experiencing nerve pain in both feet 2 treatment of accupuntute deadens the pain

  • (CSS) Yes my trigeminal neuralgia started earlier this year and only got under control when I started cyclophosphamide and Pred 35mg to treat CSS. I am on Lyrica, Duloxetine and tramadol manage pain.

  • My first appt with a neurologist is in three weeks. My vasculitis is otherwise totally under control. I have found that my main trigger is chewing so I've put myself on a liquid and soft foods diet. It's helping with the pain a lot. I can't open my mouth enough for a sucker or anything that size but at least I'm not in excruciating pain anymore. Just the regular achy and dull pain with random numbness.