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Originally Posted by Theodora
How did TN present for you initially? I am sure everyone is different especially based on the nerve branches that cause problems but I'm trying to get an idea of what it looks like.
About 3 years ago I had 6 months of intense face pain, driving down into my left eye, always in the left eye. I saw a neuro-opthamologist for a year for it. It came on at once and left at once. I had a root canal just prior of course and had it performed again during this span. I was sure that there was a bit of referred pain from the tooth but my dentist assured me that my root is dead, dead and no pain is coming from there. The pain in my eye/face has been good for 2.5 years but this month has come back with a vengeance. MRI was clean 3 years ago, but there was inflammation in the eye that the Doctor could see. We treated with Presnisone and Indomethicin then. I'm on Prednisone now for something else so that doesn't help. I had a 2 year follow up with neuro-opthmalogy in May and she was convinced it was TN because I already have other nerve issues but to me seems like a bit of a lazy diagnosis. I'm on 29/30 of the last days being in some level of pain. To me, this isn't as zappy/shocking painful as other neuropathies are, but maybe it doesn't need to be? My Grandmother had TN very badly and I recall wind hurting her face and you couldn't touch her face without causing her pain. My pain is not on my skin. Does it have to be? It's more of a boring pain deep in my face. I can rub my face when it hurts without causing like neuropathy shocks which I wouldn't think you could do with TN but I am ignorant here.
You can read all the publications in the world that describe it but no one describes the pain from a first person perspective. Anything would be helpful - I'm wondering if I should pursue this further. Please tell me what your pain is like, when it comes on, what it feels like, if it is skin or deeper. If eye/cheek/forehead/top teeth are involved. Does anything relieve the pain and can the type of relief help to be diagnostic? When does it come on and does it come and go? Anything else I'm missing? Any links or publications to share? Thank you!
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Hello, I have TN and was diagnosed 3 year ago. I'm 26 now. Mine started when I was 22 and I blamed it on my wisdom teeth because that's where the pain would always start but then travel up through my temple, eye, and forehead. The pain was always on the left side of my face, never the right. I was convinced it was my wisdom teeth so I had them removed and the pain went away. I was pain free for a year and a half before the same exact pain came back just as bad. It will cause terrible pain for about 3-4 weeks at a time and then disappear like nothing was ever wrong. I'm currently on the fourth week of an episode right now so hopefully it will go away again soon. The pain is never on my skin, it always feels deep. As far as I know, nothing triggers mine. It can come and go randomly by just sitting down watching TV.
Hope this helps