I've had this condition for around 17 years, now. I was not dx'd until 2002, and then again, more thoroughly, yesterday. As a result of the chronic carotidynia, I have Chronic Paroxysmal Hemicrania (headaches), Meniere's Disease, and a great deal of dysfunction with the use of my eyes and eye muscles, including a couple of bouts of retro-orbital neuritis. My carotid involvement is primarily on the right side, with a great deal of swelling in the artery -- at times it bulges out of my neck.

I'd attempt to describe the pain, but I am guessing you all know about that. I do have flare-ups on my left side, infrequently, but they aren't nearly as bad. My vision issues are bilateral, as well as the forehead muscle paralysis, and the optic neuritis was on the left side. The Meniere's is bilateral, with the right side being the worse. I also get chest and shoulder pain, which feels like radiating pain, and it sometimes radiates down my arm or into my gut.

It has altered my life, drastically, but not necessarily for the worse, I think.
For the pain: I used to react to the overwhelming severity of the head/ear/eye/neck pain, and I took a lot of prescription NSAIDS. I was always feeling for it and dreading it. Throughout the past 8 years or so, I've learned to relax and let it go, and just live with it, reacting as little as possible. PT and biofeedback really helped with that. The guarding that was happening in my body as a reaction the the severity of the pain was causing calcified lumps in all of the tiny, autonomic muscles of my scalp, etc. That guarding was causing the pain to be MUCH worse. It also caused spinal compression, and my vertebrae were locking together, and I have ground a few teeth completely out of my mouth. With the relaxation/biofeedback, I have significantly reduced the impact a flare has on me, with regard to the pain and associated damage. I also will use Tabasco sauce, and sometimes a little whiskey in hot tea with honey and lots of ginger, to deal with the throat/ear pain. I always wear completely covering amber-tinted sunglasses outside, which helps my eyes. I cannot use the new CFL light bulbs, or fluorescent lighting, because it triggers the pain, so I just use regular, low-wattage lights. I can't put anything in my ear, because it triggers the stabbing pain, so I don't, unless it's a tiny piece of cotton with olive oil and a drop of Tabasco. Onions cause a flare, and so does garlic. Often I have to eat only soft, warm foods, or it will start it all up again. I take Naproxen when it's really bad, and 2mg valium often helps get rid of the nerve pain. Proper sleep habits always help me, but it's hard to go to bed when your head hurts so bad you want to use a bolt gun on it. I try to keep to early bed and early up routines, with a short nap in the afternoon. I usually do best, with that. I live in an arctic climate (North Dakota), and I've found that going outside when it's subzero out really does help a lot. I haven't tackled the malaise very well, yet, but if I don't let myself get frustrated or discouraged, I do manage to keep up with daily life much better. A flat-panel monitor has made it easier to look at a computer screen with less eye pain, so I've stayed in close touch with old and more recent friends via facebook, which has been a blessing.

That is my experience, and how I've coped, so far. I am hoping to get more creative, and make my life even better within the limits this has put on it. I would really like to hear more about how you have all coped, and what has worked for you. Also, what medical treatments you have tried which have worked. It is so great to have found this board, and read about others experiencing what I have! Thank you for putting your experiences out there.