I have been going through this nightmare now for a year was diagnosed with carotidynia a year ago in November. I went to the ENT with the coughs, swollen lymph nodes, and headaches around the temples and pain on the right carotid artery. I have had numerous tests ran and I know with carotidynia that not really a specific test would detect it.

I have had a ct scan, cta, and now a brain MRI and still waiting for the results that I had done yesterday. The ENT referred me to a rheumatologist and she didn't believe I have carotidynia and ordered blood tests. Then I was referred to a vascular specialist and he doesn't know what carotidynia is and didn't believe I have it as he thought it was a muscle when it is the bulb on the carotid artery that is distended.
I was then referred to a neurologist and he ordered the brain MRI but he doesn't believe I have it as he thinks it is a muscle. He doesn't know what carotidynia really is either. The symptoms have gotten worser now as I'm now having dizziness, balance issues, and coordination issues too. I have pains around the left and right side of my head.
I agree with the ENT diagnosis as I believe and know from the symptoms I'm having that it is the carotidynia. I think I'm now having chronic symptoms of carotidynia as I been having it now for a year and the symptoms are getting worser. I also see black dots with my vision when in the dark and it is like black snow across my vision.

The ENT said that most of his patients that has had carotidynia it usually goes away. For me my symptoms are getting worser. Any suggestions on what to do or where to go for treatment for this problem? It is frustrating as the doctors I have went too don't know carotidynia and don't believe in the diagnosis as they don't see it on the tests. They don't give suggestions on where to go to get treated or recommendations on what to do. They don't have me on any medicine for this problem. I would like to have some suggestions and it helps to come to this support group and know that others are going through what I'm going through and can relate.