Who knows about occipital neuralgia?

Posted by pierwell @pierwell, Mar 22 6:48pm

I’ve had daily headaches and shooting pain in the left side of my head for over a decade. My pain dr. has tried all the usual treatments, including ablation twice, but the only relief is from my Nalu nerve stimulator, Tylenol and ice packs.
Has anyone else experienced this? What helps you?

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Teri | @tsc | Mar 28 2:03pm

PT hasn't helped me much either, painwise, but I can turn my head, though not as easily as before.

westcoaster | @westcoaster | Apr 18 4:34pm

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.