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Mcad Folks.... Can You Describe One Of Your Anaphylaxis Shock Episodes That Doesn't Involve A Trigger Of Any Kind?


hilbiligrl
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Hey all. I've been trying to piece together my 9-10 year history of these severe 'attacks'/'episodes' that I had been having up to the point of starting on mcad meds about a year ago.

It seems my attacks where never thought to be anaphylaxis shock due to the fact that i never had any known allergies. So, docs never thought of it at the time in the er when i would be admitted over a period of a few days. (My doc now is going to pull up those records and see if they tested me at any of those er times for, is it the triptase level???? im sooo not sure on that one..... yall can fill me in on the correct test for it).

But what I would really, really, truly like to know is how you describe your anaphylaxis shock (not any due to a known trigger, such as peanut, etc, but ones that are due to the mcad and an unknown trigger is at play).

I know from the beginning, mine started with just 2 or 3 symptoms..... severe inability to breath for no reason and severe weakness to the point of being comatose/paralyzed and unable to communicate because i was focusing on my diaphram and breathing and panting like a dog the whole time. Of course, over the years, more symptoms would jump aboard these attacks.... maybe as the mcad got worse?

But, it would help significantly if i could hear from you how/what your anaphylaxic shock episode felt like and if you would say that it was a huge intense amount of suffering with it, along with a feeling you were dying (for me this IS NOT ANXIETY... but a true deep feeling like my body was closing up and shutting down on itself...... yet the docs could find no answer over all these years to these attacks of mine).

Ok..... if any of you can help.... I WOULD BEEEE SOOOOOO GRATEFUL!!!!!!!

Thank you all!!

tennille

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Hey Tenille!

My episodes are like this; all of the sudden I get really hot (like inside out) like a heat flash and my face and trunk get patchy, itchy and red, shortness of breath, my head feels congested, very high heart rate,high blood pressure, nausea, feel not right (like I am stroking out), after a bit my blood pressure starts to go low and I have chills, so cold!!! and I start to feel very tired and the shortness of breath gets worse...sometimes I have to be taken to the hospital before passing out. I am just recently being treated for mast cell issues...when I asked the specialist about my episodes he said they could def be the start of anaphalaxysis so to be careful.....now when I feel this coming on I right away take benadryl to try to head it off.....hope thats a little bit helpful to you :) I am sure everyone reacts differently though....hang in there

Hugs

Bren

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Thank you Bren :) I think one thing that stands out about my attacks that is different than most, is that i never have had any red rashes or whelps or swelling that i can ever remember at any time ever, even in my life without the attacks. Everything else, basically is so much similar or right on....... gradually adding symptoms from the severe breathing issues and weakness to those 2 symptoms always plus many more added over a 9 year period.....

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