Hi Jared,

I'm sorry you're acting up again.  

Sometimes it's not just one specific trigger, Jared.  Sometimes it's an accumulation of them.  The fact your doctors don't have you on higher doses of antihistamines may mean that you're just putting out way too many histamines for the antihistamines to handle.  Every time you do something else, it just adds to the bucket until the bucket overflows and you have these breakout reactions.

Yes, it does sound like a mast cell reaction and since mast cell activation is FULLY recognized to be a part of POTs, then yes, I'd say it was that!!  

Jared, when I'm doing major reacting I can't go and stand in lines or walk long distances or have conversations with people in the hallways.  I can't do anything after a full meal and nor is it easy to do anything cooking or washing dishes for they require me to be in only one position for too long and if I do, things start going haywire!!   I had to stand in one of my doctor's offices one day - it was packed!  I needed to pick up some paperwork, a request for some blood work and since there it was a small office filled with little old ladies with vascular problems in their legs I figured I could wrangle out a 5 minute wait for the paperwork.   BOY WAS I WRONG!

While I was standing there my stomach began turning and I began to feel really ill and I just kept concentrating trying to keep myself together hoping to get out of the office quickly.  Next thing I knew one of the nurses came up to me and asked me if I'd like to lie down in the next office cause it must have been pretty obvious to her that I was not doing well at all!!  Amazing thing is I didn't even hear her come up to me - she was just suddenly THERE!

She put me on the examination table of an empty office and by that time I'd begun reacting with dyspnea and stomach ache.  I asked her for some water and I took an antihistamine.  In the meantime she called my doctor out of her consultation to see me.  She took my BP - it was 230/110!!!!!   I was ready to blow!!!   She calmly asked me where my emergency BP meds were and I took a sublingual captopril.  She left me there thinking that all would be fine.   Well, the captopril brought my pressure down so quickly that this in turn triggered another reaction this time of anaphylaxis!!!  This put me into syncope and my doctor came back in to find me unresponsive.  She had to really work to bring me back to consciousness!

What we found out IN MY CASE is that I ended up having a hypertensive crisis due to the POTs.  This is what had sent my BP sky high!  It gave me SOME symptoms which are similar to anaphylaxis, but she told me that I hadn't done any flushing.   However, when she came in the second time and found me unconscious I was a SCARLET ALL OVER!!  This was proof that the second reaction was that of anaphylaxis.  

Were they both mast cell triggered YOU BET THEY WERE!!   And when we had to find out what happened with that second reaction I had to go to Dr. Castells to pin it down.   What we found out is that it wasn't the medication itself I had reacted to but to the EFFECTS of the medication.  It triggered my very sensitive system in bringing my BP down way too quickly.  I've had it happen several other times in that the higher my BP goes, and the quicker it's brought down, the greater the amount of MC degranulation is caused and this is what triggered the anaphylaxis.   The proof was due to the syncope as well as the overall intense flush it produced!!


Flushing is a MAJOR sign for anaphylaxis, Jared.  It's uncommon when a patient won't flush.  If the anaphylaxis is lightening fast, then sometimes it's too quick for the skin to flush.  Yet, if you are flushing, then this is usually the very first sign that trouble's brewing and that you MUST listen to what your body is saying to you.  

Until you get better medicated, for you are not medicated well enough you must learn how to cut down on the reacting once you end up triggering.   Personally, I would have taken an extra antihistamine right then and there for you were so very close to going over the edge it wasn't funny!!   But until you feel secure about using the antihistamines or until your doctors increase your doses, what you must do is STOP EVERYTHING you are doing.  Since you live in Florida, your heat is a major factor for triggering and when you're flushing like you are, then you need to cool your body down ASAP.   I would have hopped into the shower right away and tried to use some cool water to cool my body and face down.   So, yes, the hot water you were using was a major factor  -  why?  Because not only is the heat from the water heating up the blood in your hands and that's in turn being pumped back into your body but you are also breathing in the hot air from the water and everybody knows that we gain and lose more heat through our breathing than in any other place on our bodies.  So, just breathing in that hot air gets the mast cells triggering and you are only moments away from an attack.

So, lessons learned - NO MORE HOT WATER especially now that your Summer is virtually upon you!!  Especially when you are STANDING still.  You have a DOUBLE WHAMMY situation there and YES, I have had this issue too!!   I do not have hot running water in my sink, we have only cold water in these pipes.  So when I clean, I use tons of detergent, but I don't have any hot water triggering me.  However, just having to stand there will do it, Jared!!   When you have POTs, just standing still is a major trigger!   And it is well known that if you have just eaten, then standing still is a TOTAL NO NO!!   You must not stand still on a full stomach for you are inviting trouble.  So that means, LEAVE THE DIRTY DISHES IN THE SINK UNTIL 2-3 HOURS LATER!!   Then use COOL water to wash them.  

Here's a tip to hand washing dishes.  In the States we have 2 ways of washing dishes - fill up a basin with water and soap and use this to wash, OR put the soap on a sponge and apply that to the dirty dish - no basin required.   Well, I prefer the sponge and detergent method versus the dirty, soapy water.  First of all, it's more hygienic and get's the dishes cleaner, but you can also get away without using hot water!  That hot water is a MAJOR problem for us and you've really got to do your dishes without it.  So, a tip from me is to use a sponge with detergent and a small stream of running water to help keep the dish washing process going.  If you put the dishes under the thin stream of water and about every 4 dishes add more detergent to the sponge in order to keep things well soaped up you will find that your dishes come out very clean and yet haven't triggered you in the least!!   A happy medium!!


I hope you feel better!!   Keep a low profile until you recover!!!  By keeping your physical exertion down until you recover, you don't end up adding to the bucket and the bucket has a chance to deal with the reacting you've already got going on there.


I hope this helps!

Lisa