Suzie - I had a lot of tonsil infections throughout childhood, too! Have you ever been evaluated for a vasculitis? I am starting to realize that this has been with me since childhood, just not the carotidynia part. Vaculitis can start early, and can be subtle for many many years. Carotidynia is typically directly linked to vasculitis, too (I think it is a minor sub-category of vasculitis, all on its own). I wish my family pediatrician was still alive, so I could ask him if he actually did cultures for the repeated strep throat, tonsilitis, etc, or just "knew" it was, and wanted to save my parents the cost. But vasculitis makes sense of the anemia I had for most of my childhood, and until I was about 30, as well as the elevated white blood cell count, etc etc etc.
Aren't you glad you finally know? I knew I wasn't crazy, but still - I didn't have any way to organize what was happening to me, or know what to expect, or even what, for sure, to do about it. What do you do for it, now? Do you have any tricks or tips you can share with me? Is yours worse in the winter? (I don't know if you are in a cold-weather region, so that might make a difference). How do you adjust? Are you able to work outside of the house? I can't imagine dealing with this and having three teenagers! I hope that they are unlike most teens and are able to be supportive of you.
It is supposed to be triggered by colds or flu or any virus. I would guess that stress sets off inflammatory things in your body, so that would definitely trigger it. Do you think your problem with handling stress might just be related to being affected by an unknown medical problem for so long? I know that it sure caused me to have issues with anxiety and stress, for a long time. Not any more, though. So much of what I thought was my temperament or emotional state was actually just a result of constantly having to readjust to something that was happening to me on so many physical levels that I didn't see or understand, or even know was there. For instance, I thought I had anxiety problems, but it was actually a product of my eyes weakening, combined with inner ear issues. I didn't realize my eyes were weakening, then. I would spend an afternoon at Costco and feel like I was on the edge of a panic attack. My husband would all but have to sing me to sleep that night. Too much noise, too many people, lights, movement -- too much input -- would cause that. So does heavy or tight shirts or jackets, because my upper arms are so weak, but I didn't realize that, then. Now it's clear that it is (and was) directly caused by the sensory difficulties.
I bring that up because it sounds to me like you might be being a little hard on yourself, but I don't know. You're the best judge of that :-).
It is really good to talk to you, too!!
Linn
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