For those with TN2/ATN, did you find that the area affected got more widespread over time? If you do have lancinating pain I would still be interested in your answers as I am in med school and likely going into neurology or internal medicine and would be interested to help others when I get to that point.
I am still waiting on a diagnosis as I have been referred to a neurosurgeon with specialty in facial pain finally (OHSU questionnaire tells me TN2). My neurologist calls it neuropathic pain but codes for it with atypical facial pain, and I never had any sort of facial trauma to cause it so neuropathic pain for no reason is unlikely in my opinion. I have had complete pain relief with ENT performing lidocaine and dexamethasone injections twice in the last month to the infraorbital nerve area under my eye, but it only lasts 2 days and then comes back which from my understanding rules out PIFP. I had relief from tricyclics but those stopped working. Depakote was good for about a month and then pain starting coming back. Had great results from lyrica, gabapentin, and especially topamax completed cleared the pain - but all horrible side effects I couldn’t tolerate.
It started as deep burning sensation along the side of my nose and cheek for the first 2 years or so but it has recently become more widespread but contained within V2 distribution, as I can feel it deep below my eye and starting to get abnormal sensations along the back of my teeth on the same side, almost feels like I’m salivating more but I don’t think I actually am. I think its just more of increased sensation. Headaches below my eye are definitely getting worse over time as well.
From everything I have read, TN2/ATN usually progressively gets worse and resistant to medication - but for those of you that have it, what does that mean? Does the severity get worse? Does the area affected become more widespread? Both?