I'm considering seeing a specialist at the hospital about this condition, but since I don't have insurance I want to see if my symptoms relate to anyone else's before I spend the money I don't have to see the doctor.
Here's what I have going on, and have had for about two years now:
Burning, relentless aching on the right side of my head just before my ear, running vertically along my head. The pain seems to radiate from this point and, in turn, causes stabbing, tingling, and aching in my right cheek, nasal cavity, and upper & lower jaw. I also get aching and burning in my frontal and rear temporal muscles. The pain last for 10-14 hours at a time and no medications (OTC) seem to help at all. There don't seem to be any specific triggers, and only rarely do I find these areas sensitive to touch. It's just non-stop ongoing terribly boring pain.
I've included a link to the image attached to my post which documents the locations and the types and severity of pain.
Pink means aching, and a less severity while red means intense deep burning and high level of severity.
Please, any information will help; I don't know what to do and I can't keep dealing with this as it stands.
Hi, I wish I had words of advice. Unfortunately, it seems most of us have had to go to several doctors for help. I was prescribed gabapenytn by my doctor, and I take a high dosage of it. Most of my docs didn't help. I finally went to see a chiropractor/acupuncturist. The acupuncture (after 21 sessions) finally seemed to kick in and somewhat stabilize my pain. Also he put me on a diet of no wheat, dairy, sugar, or preservatives.
Some people I have talked to have gone to Mayo Clinic.
I'm lucky enough to catch a break on finding a doctor. I live in a college town where we have a hospital that does a lot of research for the University where both a doctor and surgeon are specialized in treating TN and atypical facial pain.
I have a friend who's mother (ATN patient) has recommended the specialist to me. This doctor/surgeon team is actually doing groundbreaking treatment by implanting some sort of mechanism into the opposite side of the brain from the pain to control the pain signals caused by TN and ATN.
I'm not particularly worried about finding a doctor who knows how to handle the disorder, I just want to know what questions to ask and what treatments to request.
I've been on: tegretol, amitryptiline, gabapentin, naproxen, and narcotic pain killers and none have really seemed to help.
I also had brain surgery on the side of my head that's in pain, which is why I wonder if my 5th cranial nerve got damaged or has scar tissue pressing on it since the pain started about 5 months post op.
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