I was in a severe car accident. The car flipped over and the roof collapsed. I had intense, disabling pain that was focused on the top of my head—literally where my head hit the roof. Over about 4 years, I saw about six different neurologists but they couldn’t figure out why I was in so much pain. I tried every Rx and every therapy that was legal. My neck, shoulders, and back had no problems. Eventually, after years of arguing, my insurance company decided that they would pay for me to go to a chronic pain specialist.

There, finally, I was diagnosed with ON. I now get nerve blocks about every 3 months. I also rub diclofenac gel (Voltaren) on the painful area when I get flares.

To me, having a diagnosis is like having a handle on a suitcase. It allows me to feel somewhat in charge of things. And just like trying to carry that same suitcase without a handle, not having that diagnosis made the load impossible to deal with.