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Hi all, does anyone have dysautonomia caused by nerve damage, specifically to the neck/head, which lead to neuralgia? If so, what have you tried so far?

In addition to tryptalines, gabapentin, and topamax (all unsuccessful, and caused other dysautonomia-related GI issues), I have tried Botox and nerve blocks (unsuccessful), chiropractic (helps about 30%), rhizotomy (helps about 30%).  

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catlady, I'm sorry. Sounds so hard. Some of my symptoms seamed to precipitate after a concussion I had way back in high school. So though I think my underlying issues are familial, I can't help but wonder if there was some brain stem disruption that triggered/flared something that before that was pretty benign. IV fluids, desmopressin, and mitodrine have been helpful for me, but one of the only things I've found that helps when my neck and head are flared up is a hot bath with with rosemary and lavender essential oils. Though I come out dizzy and winded from the BP drop, it can bring my pain from pretty yucky to almost gone. Have you found things that help on the pain front? I'd be curious to know.


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