Hi Stephen,

In April I will have been living with this unbearable and excuriating syndrome for four years!!! Mine in on my right side. You can actually see and feel the infalmmation on the carotid artery on my right side. The ice pick earaches are unbearable at times. Last year the pain spread into my face causing a drooping eye lid and horrible migraines. My two neurologists have pretty much exhausted ways to alleviate my pain and discomfort. I have been on steriods, anti inflammatories, beta blockers, seizure medication, nasal sprays and narcotic drugs ( demerol and now percocet). I am waiting to go to another province for botex nerve block. I have been told by numerous physicans that mine is the worst case they have ever seen. I have to keep a list of previous medications that I have tried because when I end up at the hospital for a double dose of morphine they know how to help me. Alot of the doctor's haven't heard of this syndrome or seen it before. They relay on me for treatment options. I usually end up having a double dose of morphine. The needles don't help much but allow me to get a good nights sleep. It took close to 2 years before I was diagnosed. My family physican told me that she learned about the condition in medical school but had never seen a case. I went to five doctors before being diagnosed. My neurologist here didn't even have any information to give me so I had to rely on the internet. He said that he had only see a few cases in his 25+ years. My out of province neurologist was more helpful. He has dealt with this syndrome before but unfortunately the medications that had worked for his patients didn't work for me. He even consulted with a colleague in Paris because this doctor is researching this syndrome. The only thing that helps keep me sane is my heating pad. I am on my third! My family and work have both suffered because many days I'm not very functional. I don't know about you but I'm sick of being sick!!!! Even now writing this I have another ice pick earache...it is horrible. I hope the you can find relief because heaven knows I sure haven't!!

Islandchip