Kim,
What you describe is TYPICAL MASTO! You're descibing the inicial steps of anaphylaxis, Dear!
What happens is that we can begin triggering - a chain reaction kind of trigger. When you came in out of the heat, took that cold shower, you counter acted the triggering, but it's like a tsunami in that although you may have stopped the cause of the wave, you still didn't stop the wave itself. which is why you kept feeling awful. In taking the Benedryl, you began to counteract the wave. I really doubt that it was the 2 benedryl which caused you to be knocked out, it was the reacting which did this! I've had that horrendous exhaustion come on me following those exact same situation you have - heat, skin rashing up, nausea - this IS anaphylaxis, only you didn't go over the very edge into a crisis. The exhaustion is part of the symptoms and the reason why I say this is because when you woke up you still feel exhausted - why, because your body becomes depleated!
But what happened with today that you are still on the verge of dizziness and nausea - the wave has not been stopped, Kim! It's still rolling inland!
Anaphylaxis isn't just a one time, done deal. Not with mastocytosis! The reason why is because these are NOT IgE mediated reactions.
An IgE mediated reaction is a big explosion reaction - you eat a peanut, the enzymes of the peanut activate all of the mast cells all at once and there is a hyper/super/explosive reaction for your entire body to have to deal with. This is why IgE mediated anaphylaxis is so deadly! But mastocytosis does NOT respond this way. Most of the time our mast cells are triggered by other means and they are partially triggered or only in certain areas/systems. This is why sometimes you will have what we call breakout symptoms which would be diarrhea or angioedema, or urticaria, or flushing, or rashes or perhaps a combination of rashes and diarrhea, etc. The triggering of the mast cells is not always total and complete as it would be with an IGE mediated allergic reaction! And the reactions don't always lead into full anaphylaxis. And when it does go into full anaphylaxis it doesn't mean that it's going to go full systemic either! I had an anaphylaxis attack which presented with only INTENSE diarrhea and weakness and flushing. The major symptom was the diarrhea and even my doctors were surprised by it for they had no ideia that anaphylaxis could present with ONLY diarrhea as the major reaction! These things are one reason why our doctors can't recognize our more severe reactions as anaphylaxis for they are trained to recognize only the IgE mediated explosion.
However, a word of great caution!! We masto patients can be lulled into complacency thinking that we don't or won't explode! WE CAN AND DO!
If you had ignored your symptoms and not taken that shower or benedryl you would have kept getting worse and it could have taken you to the ER! Seriously! Heat is one of our WORST ENEMIES and it MUST not be taken lightly! It is a KNOWN MC ACTIVATOR as is contrast, anxiety, red wine, opioids and other meds. These things are proven to activate mast cells and therefor you can not fool yourself thinking that you can handle driving over to the market just to run in and get a pound of butter and a gallon of milk at 2 PM on a hot summer afternoon! IT WON'T WORK!! You WILL trigger and you WILL feel the effects in some form or manner - PERIOD! I don't care how brief you are in the heat, even if it's only a matter of 3 or 4 minutes while you get in and out of the car! You are going to trigger, period! We're talking about the laws of chemistry here and you can't fool them.
Yet, once you trigger, then what you did is PERFECTLY 100% CORRECT! You got to a place where you could cool your body core temperature down, you took medicine, and you rested! PERFECT SCORE FOR KIM!!
The only thing you didn't know is that you aren't medicated properly and you didn't keep resting. You didn't stop the wave, you only wiped it up a bit. If you were on proper medication, Kim, then you would have stopped the wave.
I know because you are not properly medicated, you're not in a good spot as far as combating it all Your zyrtec isn't high enough and yes, you need it twice a day an the zantac too.
I'll bet too, Kim, that you would responde very well to singulair, but you are going to have to wait for Afrin to put you on that one, dear. It's terrific medicine and has given me a lot of stability to the point I almost dont'feel sick anymore! This is what I am hoping for you!!!!!!!!
I hope this helps!!
Lisa