Hi everyone!
I was recently officially diagnosed with MCAS (mast cell activation syndrome) after a rare reaction to a nerve block prior to my styloidectomy. The wildest part? You could literally see the nerve path light up on my neck (photo attached)! My neurosurgeon, Dr. Bolognese, said it was an extremely rare presentation.
Before diagnosis, I had been managing seasonal allergies with daily low-dose Pepcid AC and Xyzal, plus Benadryl as needed when hives flared up. Now that we know what’s going on, my PCP is collaborating with an allergist at the clinic to dial in a more appropriate treatment plan.
My MCAS seems to flare hard with weather changes — which has had me seriously considering a move to the Southwest for more environmental stability. But if I can manage symptoms effectively without uprooting my life, that would be amazing.
I’d love to hear from others — what’s helped you get symptoms under control? Is there a go-to protocol or routine that works for you?
Thanks in advance, and feel free to check my profile if you’re curious about the rest of my journey. I’m so glad to be in this community.