Questions and a rant

I've had TMD for a few years now. At one point I couldn't open my jaw for weeks, lost 50 pounds, and seriously contemplated ending my life. It's always in my head. When the symptoms ease up, I can almost forget about it for a little while, but when they come back, it's all I can think about.

I feel like people who haven't lived with this can never truly understand. That's probably a good thing, because I wouldn't wish it on anyone, but it's also incredibly isolating.

My problems started after a botched quad impacted wisdom tooth extraction. I woke up during the surgery for a while, which is a whole different story. I lived with the aftermath for years, and then about seven years later my jaw started dislocating and getting stuck. Then came the muscle cramping, migraines, relentless pain with no real relief, sleepless nights, and even hallucinations after going five days without sleep.

I've tried to get help. I did physical therapy for two years. Right now I'm taking 40 mg of Flexeril, 4,000 mg of Tylenol, and 2,000 mg of ibuprofen a day just to barely function. A specialist confirmed I have a significant case of TMD, but they won't prescribe stronger pain medication or soma. At this point I'm not even sure those would help.

How are you all getting through this? What kind of doctor actually helped you? How do you live with this level of pain when it feels like no one can help and no one really understands?