I'm 36 and had issues with TMD as a child but was told my TMD was mild and wouldn't cause me any problems. Truthfully, I thought everyone experienced flashes of nerve pain and popping sometimes. When I got out on my own I realized none of the insurance I was paying for covered TMD. Literally, there'd be sections in the booklets devoted to telling me that TMD diagnosis and treatment was not covered. I didn't understand how my jaw was so controversial that no one would touch it. At least now insurance coverage is the teeniest bit better.
Three years ago, my jaw became stuck partially open twice, once while cleaning my teeth at home and the second time while receiving bitewing X-rays. Both times I "fixed" it myself by putting my thumbs in my mouth and forcing the joint. That same year, I found out I have Ehlers Danlos Hypermobility Syndrome on top of everything else.
After these accidents, my jaw started seizing up. I went to my GP who gave me a muscle relaxer and told me that a dentist would have to treat this issue. I chose a new dentist, who was very gentle and kind but told me I would need to see a specialist. He found an oral surgeon.
The oral surgeon sent me to a neurologist to screen me for trigeminal neuralgia because I had some numbness in my face when the pain was at its worst. The neurologist was very impatient with me and said I wasn't in anywhere near enough pain. I agreed that I didn't have TN but I don't know why he had to be so rude. He sent me back to the oral surgeon.
The oral surgeon did not allow note taking in his office as he said that it would cause me to not listen. When I told him I was in the process of getting an EDS diagnosis, he scoffed at me. He did tell me I had arthritis and a displaced disc. I spent $1200 on a temporary splint that I was to wear 24/7 unless I was eating or brushing my teeth. It made me gag and lisp and after a month it hadn't gotten better. I couldn't tell if it was working or not. I was supposed to spend even more money getting a permanent version made to wear in perpetuity. I bailed on the treatment. If I could do it all over I would have asked more questions and maybe asked if there was a physical therapist I could see first.
My jaw did eventually feel better, with some spikes after eating something I shouldn't have or having dental work done. Recently, however, I had dental work done and then, while my jaw was still fragile, moved my face too hard (I was enunciating during play practice) and felt my jaw kick out to the side and heard a buzz in my ear. Now, I struggle with intermittent pain in my ear canal, tooth pain, spasms in my face, and nerve and muscle pain from my eye down to the back of my neck. Every day I experience spikes of severe pain. I am treating it with OTC medication, massage, stretches, and hot and cold packs. I'm trying to avoid hard food and things like salads and subs. I just can't afford to pay out of pocket for treatment in the dental world and the medical world has told me that they can't do anything but send me to the ER.