Joan
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Hi Star,
Sorry you had that experience! You're definitely not crazy (or we both are!)! It was likely an atypical anaphylactic (or anaphylactoid) event, probably from the Xolair or some ingredient in it. I'm glad you're okay now!
I've had most of those symptoms during "episodes" except the chest pressure, but including flushing, feeling like I was going to pass out, seeing black blotches, high BP, but no breathing difficulty. I don't get as many flushing episodes anymore, but when I do, I immediately take 50 mg. Benadryl, 40 mg. of Pepcid, 10 mg. Singulair, and a 10 mg. Zyrtec. (Of course, there are other meds that would work). I take the Benadryl because it's fast-acting. I also get out my Epipen, just in case. When I felt like I might pass out, I did the epi. I also usually have tachycardia with it, but you didn't mention that. It feels like my heart is pounding out of my chest.
Don't know if you've read about Kounis syndrome, but it's essentially a "mast cell heart attack," from the little I know about it. There are a lot of mast cells in and around the heart that can and do degranulate. It's possible that was part of what happened, although you can have very similar symptoms and it not be Kounis. It's written up a number of places you can find on Google. Ramona can correct me, because she knows a lot about it, but I believe quick-acting H1 antihistamines are the recommended first line treatment for it. I don't know if H2s help, too, but I don't know that it could hurt either.
If I were you, I'd have my doctor write a very specific letter for you to carry that says exactly how to treat the symptoms you had. The hesitation to give epi, as you probably know, was that your BP was very high and you were having chest pressure. Giving antihistamines for those symptoms is counter-intuitive, and they wanted to rule out a heart attack before giving you something like epi that could make one worse.
If your personal doctor won't give you a letter, a mast cell specialist will. The one I got says to give antihistamines and epinephrine and that BP can be high or low. I've thought about putting a letter into my file at the local hospital along with the Emergency Info packet so they'll have it if I every come into the ER. As you might know, BP can spike and then crash, so an IV should be started immediately, too, just in case.
I think they'll discontinue the Xolair, but if they want to try again, be sure to have someone drive you to the appointment and keep somebody with you at all times for the rest of the day (at least), carry Benadryl and epipens, and pre-medicate a lot before the shot. Those reactions can come on so fast!!
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