Hi,
I have been searching for years for the cause of my ear pain and it has led me to your site. I have had several CT scans, MRIs, ultrasounds and even an angiogram for a condition that is called FMD which causes abnormal cell growth in the arteries, in my case right carotid and renal artery. My doctors cannot find a cause for my ear pain though. After many hours searching online, I saw the symptoms listed for ear pain on your site and I couldn't believe how closely it matched my symptoms! It seemed a perfect match. I was so amazed! The FMD has made my artery bendy and bulgy so my theory is that it is compressing the nerve somewhere. I am waiting for a neurology appointment 2 months away. So I haven't been officially diagnosised but it is hard for me to not believe that this is the answer. I assume it is GN not TN but I don't know of course.
I don't know how hard it is going to be to find a neurologist who knows about this condition. Do most neurologists know about this even if it is rare? Do I look for a neurologist who specializes in anything in particular?
I am truly humbled when I read the stories of all of your sufferings. Most of the time my pain only lasts a few memorable seconds at a time so it is bearable. But when I read of some of you having to endure this for longer and in more places on your face, my heart goes out to you. You all seem so kind and compassionate in the midst of your sufferings. You are an amazing group. Thank you!
Taykay