You sound like me. I had terrible sporadic ear aches for about 3 years and was constantly told it was inner ear trouble/infection, etc. I didn't believe it because they were so sporadic. Every 3 months or so. After a really bad episode, I agreed to see an ENT. Of course there was no infection, and after two MRI on my head, there was nothing to be found. They then sent me to a Neuro doc that was a real jerk and he diagnosed me with Atypical TN. He wrote it down on a notepad and handed it to me (laughing to himself) and told me to go home and look it up. Of course, when I read about it I was terrified. I went to 3 different doctors for another opinion and unfortunately they were all in agreement.

My pain is very mild I'm sure compared to most folks here. Episodes occur about once a week now, sometimes 2 -3 days in a row, and last for 4 - 8 hrs. each time. The pain is centered in my right ear and the immediate surrounding area. Very tender to the touch with a constant hot boring pain deep into my ear, along with intermittent ice pick jabs. I take 200 mg. "Carbatrol" (extended release tegretol) whenever I have an attack, but don't take them on a daily basis yet. My heat pad applied to the side of my face helps more than anything else.

I have not experienced the bad taste you describe, but do experience phantom smells - specifically like marijuana - of all things.

Not much help to you, but wanted to let you know that you aren't the only one to question this diagnosis.

Good Luck!

Rhonda