ATN Diagnonis but so Confused.
 

I've posted a few threads on here but I just can't seem to get over what has happened. My situation involves my teeth, a tooth removal and the obvious - pain. It has been 1 year now since this terrible situation has happened and I continue to have a bad taste along the right side of my gumline. I've been to 16 doctors/dentists/neuros/ENT to try and figure out what is going on. The only answer I was given is ATN. I'm so happy the excrutiating pain is gone after taking Gabapentin for 5 months, I just feel constantly anxious NOW...I never felt this way before since I know there is something still wrong. Meaning, why do I have this odd taste in my mouth at all times. I still get some weird sensations up into the ear, but mainly I CANNOT get over this taste. I know it sounds so bizzare. This has been extremely bizzare for me at 33 years of age and so much to look forward to. I just can't stop thinking about it. Is it really ATN? Is that nerve interferring my my taste sensations, or are these docs missing something. Why can't I stop thinking this way? I just wish I could go back to my old self and stop worrying this could be something else, or something they missed...like an infection. Hoping there is someone that could give me some insight on a similar experience or should I continue to pursue this, and see if it's something else they may have missed. Would this warrant a trip to Mayo Clinic? Thanks.

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

Mayo
 

After MVD failed and Balloon compressions (2) failed, we drove 8 hrs. to Mayo clinic in Rochester minn. with no notice at all because I couldn't even sit up in the car due to having lightning like strikes continually through my face. We went right to the Emergency room. I stayed there for 3 weeks and had two brain surgeries there. I tell you, that is a wonderful place.I would recommend going there as it has so many good Doctors. Bless, Doodle bug7