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Joined: Dec 08, 2011

Anyone else have Trigeminal Neuropathic Pain?

Posted by @szyqkids, Dec 9, 2011

I was diagnosed several years ago with Trigeminal Neuropathic Pain by the top specialist in the US (so I’ve been told) for Trigeminal Neuralgia Pain. He is the first Dr to see that Neuralgia Pain is not the only thing there is and discovered Neuropathic Pain which is more or less the same thing except no medications or surgeries work for those who have Neuropathic Pain. The only research I can find on my condition on the Internet is by the Dr I’ve seen who discovered. Problem is it’s getting worse and I don’t know what to do anymore. No medications work and if they did decompression surgery of the nerve it will actually worsen the condition. There is an experimental device they can put in the head to calm the nerves and relieve the pain however it works on about 75% of patients and most if not all insurance companies cover it including mine. I would love to meet anyone else who has this condition as I feel alone with it. By the way the cause of my condition was from a second surgery I had back in 2005 for another medical issue and the surgery caused extreme nerve damage which I knew could happen but no one knew it could cause something this bad.



Posts: 1
Joined: Sep 21, 2012
Posted by @ellieweb004, Sep 21, 2012

I’ve had Trigeminal Neuralgil since1210. I’ve been on Gabapentin and Nortriptiline with very short periods or relief. Now it is returning, and I feel like I’m out there all alone with no one to help me. It’s very depressing.

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