Has anyone diagnosed with Carotidynia ever have the deep horrible pain start in the right side of the neck, move down the chest and go around to your back? My pain sometimes hurts my ear but always starts in the neck and travels down to my chest but on the right side and wraps around to the back. I also have inflammation of my joints, break out with hives, and have terrible sciatic pain which involves my foot which also swells. Any info would be greatfully appreciated.

I had to do a little research to see what Carotidynia is...but found it is a type of migraine headache.

Here are the links I found.
http://www.migraineinformation.org/carotidynia.htm

http://www.baillement.com/dossier/carotidynia_hill.html

Here is the link to our headache forum

Headache
http://neurotalk.psychcentral.com/forum32.html

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Abbie

I am very interested in reading your post as i too get this severe stabbing like pain on the right side of my neck, but as yet it doesnt seem to move anywhere else, but i have severe inflammation of all my joints and like you hideous sciatic pain and i cannot seem to get rid of it. i have awful pain in the feet which drives me to distraction. I am told it could be peripheral neuropathy, or small fibre neuropathy or erythromelalgia, all of which are pretty awful to have. i also have Parkinson's disease as well as other stuff going on!! i did not know there was a name for this neck pain but have suggested to my specialists as to whether it could be attributed to the carotid artery, but generally no response!!
Smurff

"YES! I do get this about once or twice a month! Mostly at night but it does happen during the day. Pain starts in the right ear and moves to my neck and down the right side of my back into my chest. Last about 40 minutes, then the pain subsides. It has been going on for about 2 years. Gastrointerolgist has no clue what it is and my ENT thought it was my gallbladder but the Gastro doesn't agree. Have you had any feedback?"

I was diagnosed with carotidynia several years ago. I had what felt like an impact wound on the left side of my neck. It came and went for months. It kept me awake at night or would wake me up repeatedly. I went to different doctors, and even went to a medical school library to research carotidynia. I was placed on prednisone, NSAIDs, and pain killers. Nothing worked. Then I went to a rheumatologist, who gave me a script for Flexeril. He said to take only half of one pill about a half hour before bed every night. It worked immediately! I took the Flexeril for about a week, and I have never had any real trouble from carotidynia again. On two occasions, I thought I was having a mild recurrence, but each time, a single half-dose of Flexeril warded off any relapse. A generic name for Flexeril is Cyclobenzaprine. I keep a current prescription on hand, but except for the two occasions I mentioned, I have never used it.

Who knows whether this would work for you, but it's worth talking with your doctor about it.

Incidentally, I will die before I ever take prednisone again. I thought my heart would beat itself to death; I couldn't sleep;I gained 30 pounds in a month and could not find enough food to suppress my insane appetite (I still haven't been able to lose the weight I gained); and my hips and legs ached (and I still have recurrences of aching hips). And prolonged use of NSAIDs and narcotic pain killers is not good for you.

I sure hope this helps -- or at least gives you hope that there is a solution out there.