I have only 1 opinion so far, but have read a bit. I think I am atypical because my symptoms are so strange, like feeling that I have fur on my tongue. Concerning the MRI it is commonly used to look for a blood vessel pulsing against the nerve root near your ear, but they need to do thin sections and a negative result doesn't mean the blood vessel ain't misbehaving. I have not had one yet. My ENTs both said its not their specialty even though it started up after an ENT procedure called a Sialendoscopy. I theorize that the general anesthesia relaxed the blood vessel into the wrong position. The Neuro wanted the ENT to "fix" my parotid glands, but they are no longer operable, except to remove them. The ENT said the parotids will go downhill from here on out and I have gotten 5 years of improvement which is better than what most get. I went from carbamazepine to amitriptyline to lidocaine to butalb-acetaminofen-caff as needed. I was allergic to carbamazepine and amitriptiline caused urinary retention, and I am allergic to most stickums in patches. I had one ER visit for my bladder. But I am in remission from most of the pain now, only suffering from weird tinnitus, strange vertigo-like symptoms, and insomnia on occasion. I am in week 1 of almost no drugs, but fell out of my chair today and had to take the as needed med for neck pain from the fall. I want to pick my opinion 2 carefully because I doubt the diagnosis. Forgot to mention I walked into a wall with my nose (3 ER visits) and ended up with a nasty infection that lasted for 6 months after a balloon catheter procedure in my left nostril, where I also had surgery to repair more cancer treatment damage. The urologist put me on "super" acidophilus after basically years of antibiotics and "super" cranberry. Both pricey but I feel better this week than I have in 2 years prior. Each acidophilus pill has 20 million live organisms. I feel like cancer and over zealous antibiotics prescribers ruined my immune system. Its difficult to find a PCP with a long enough attention span to even take a proper history.