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Replies to "I’ve been diagnosed with trigeminal neuropathy, the most painful experience I’ve ever had. Came on suddenly...."
Hi there,
Yes I have recently been diagnosed with trigeminal neuropathy from a wisdom tooth extraction that should have never happened. This was May 10th of this year.
The most excruciating pain I have ever experienced. I had been on lyrica for foot neuropathy, so the first treatment was to increase it and see if it helped. I maxed out at 600mg 3 weeks ago. I had a few days of relief then breakthrough pain. My oral pain specialist and family doctor have been working together. I have been decreasing the lyrica dose for the last week. Tomorrow is the first day that I am introducing trileptal.
Trigeminal neuropathy as you know , is constant pain. I have it at the extraction siteon the bottom left. Sometimes my teeth hurt, jaw hurts.
I am actually booked for an MRI in 2 weeks that will be of the trigemenal nerve in the mandible. This is to be done with contrast. The radiologist is basically a neuro radiologist. The point of this is to see what actually happened. How much visual damage? Is it cut?
I want to know. It doesn't change what I am dealing with, but I want to know. Trigeminal neuropathy is not a candidate for gamma knife or ablation. This from a top neurosurgeon who stated he couldn't help me as this is not neuralgia. I am praying the trileptal works. Not excited to put heavy drugs in my body, but I want my life back and to have relief from this pain. Will keep you posted. Lots of prayers and faith 🙏
Yes. Branch V1 (upper, eye into the nose) is the worst one usually. V2 and V3 tend more towards numbness except on rare occasions. It started the whole thing for me.