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Hello. I was diagnosed with intractable facial nerve pain in April 2022. My pcp prescribed oxcarbazepine. When that didn’t work, he referred me to a neurologist who prescribed gabapentin. That helped occasionally. Then the neurologist referred me to a neurosurgeon who performed a radio frequency ablation. At first I first, I felt great, then I started to have all of this swelling on the left side of my forehead and around my eye socket. Sometimes the swelling is excruciating and I had to go to the ER to relieve it. Anyway, there are times when I start to give up and lose hope. Right now I’m just waiting to see what happens. There are times when I feel like I’m in prison for a crime I didn’t commit.
Replies to "Hello. I was diagnosed with intractable facial nerve pain in April 2022. My pcp prescribed oxcarbazepine...."
I have been diagnosed with Trigeminal Neuralgia. When it bagan, it was like getting lightening bolts of pain in my jaw to the center of my lower teeth. I could not talk, eat, or have the skin on my mouth touch my mouth. As soon as I called my doctor he knew immediately what it was. He Prescribed Gabapentin which did not help at all. We tried three more medications, but I could not take any of them because of side effects. He prescribed pain killers (which were of very little help) and referred me to a Neurologist. I could not get an appointment for one month. I did find that if I rubbed my gums with Ambesol (baby teething medicaton) I could get enough temporary relief to be able to eat. The Neurologist Prescribed Pregabapentin and we tried several different doses (becuase it makes me very sleepy). The good news is the pain is great a deal less . I am afraid this is something I will have for the rest of my life. I can only hope it does not get any worse. I have been told there is surgery, but this sometimes leaves some nasty facial paralysis. I sincerely hope, that the Pregabapetin might be of some help to you.
Gina5009
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I am so sorry for what your going through. I share your feeling of being in prison for a crime I did not commit. Last night I got 2 hours sleep, and then my neuropathy in my sinuses and ears and a few other places flared up. I was tossing and turning until 3 this afternoon. I hope you find some answers and relief very soon!