Hello everyone,
I've been looking for others with my condition for so long! Seventeen years ago I was diagnosed with Carotidynia. It took 10 months, 10 doctors, and many misdiagnosis until a neurologist figured it out. My story is the same as many of yours--medications, tests, intense pain, beta blockers, etc. I was on prednisone five years after I was diagnosed. I had an allergic reaction and lost all of my hair. I sank into a huge depression and had virtually no pain relief. I had anaesthesia via ultrasound shot into my C2 nerve in my spine. No relief there either. After all this time, I've never had a day without pain. My doctor tells me now that because I've had it so long, I'll probably have it forever. There are days I can't even comb my hair on my right side of my head; the pain is so intense. I've been on Neurontin and Verapamil the longest. When my neurologist leaves or my insurance changes and I get a new doctor, I get frustrated having to explain my story again and again. I get offended when doctors call the pain a 'migraine.' They don't understand that I have two very different pains in my head. I still have hope for new medications and I truly hope that there is a cure someday. Thank you, everyone, for your stories. It helped me more than you know. Lisa