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severe continuous bilateral facial pain
Chronic Pain | Last Active: Jan 29 9:44pm | Replies (5)Comment receiving replies
DMG, Although this feels like nerve pain, I've never tried neuromodulation or implanted stimulators, except at UVA with white rats in my college course on physiological psychology. Have you tried neuromodulation or implanted stimulators? None of my dozens of doctors have ever suggested that as a possible cure. Sounds like serious and risky brain surgery or an experimental study for which I'd want the best experts to feel confident it would help. I may bring that up with my doctor to see what her response is. I have never had that ruled out. Doctors have a difficult time reaching a diagnosis. One decided it was CRPS. Some can't come up with a diagnosis and so, to move me along out of their office, they say it is psychological and not their field. I have subsequently ruled this out as psychological.
At this moment I'm wearing a migraine cap, fresh out of the freezer which brings on quick relief, but warms up in about 5 - 10 minutes. Some of my grandchildren have never seen me without my sweat band on my head. I'm looking forward to injecting myself again with Ajovy but can only do that once a month for at least 5-6 more months to expect to feel a difference. So its a waiting game for now. Hope you can find some relief. WBC
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@wbc i have had four nerve simulator implants. It's usually quite a simple procedure and any competent pain doctor can do it. The high cervical was an exception. It was invasive and somewhat risky. 90% of all nerve stimulators are for spinal.So using it for nerve pain is very off label. Nonetheless neuromodulation is becoming a little bit more frequent for facial pain. It's certainly worth discussing. Having an extremely rare condition such as my facial pain, I can really relate to you. We have been through some of the same things.At this point I'm just trying to survive and continue looking for viable treatment options. I lean heavily on my spirituality and upon my dear dear wife. Let's stay in touch.