I posted this somewhere else I think in the wrong place, just curious if anyone else gets this. When I have a very bad flare up I get very tachycardia and get high blood pressure. Now at least i know too increase my meds and it gets better but I still have this problem of urinating every 15 min after a bad flare. I wonder if its the mast cell causing this I mean the bad flare or the tachycardia, I know my cardiac DR said some hormone is stimulated when you get sustained tachycardia for a period of time and causes you too urinate more. Just curious if this happens to anyone else its very annoying since I am so feeling like fainting when this happens and I keep having too get up too use the bathroom hainging on the walls and such .

Goldie, this does happen to many of us.   Begin taking your BP when you are feeling this way.  Keep a log.   If you find this to be consistant, the most likely the use of antihistamines will help return your system to normalcy.  You should also ask your doctor if perhaps this and a pinch of salt might help.

When I went through my crisis with the perfume 2 weeks ago, due to the intense vasoplegia that happens, I was a in really bad state.  I´d taken PLENTY of meds and yet I was still struggling with the low BP.  My doctor told me to not take more, I was already at a high quantity, however, she really surprised me by telling me to take a spoonfull of salt and rub a finger full at a time in my mouth along the gums and mucus membranes and then to do the very same with sugar.  I was really surprised how well this worked!     You may want to consider doing the something similar, but speak with your doctor first.


Lisa

When I get one of those spells, if I do a urine test, I have really high white blood cell counts (as in levels you would have in an infection)...not sure what all that means, but it is interesting.  Perhaps just a byproduct of IC or maybe it is coming from somewhere else?  Ideas why this would happen????

when this is happening its always after a very bad attack and my heart rate is tachy and my BP is always elevated never low. Interesting I never get low BP and I am on clonodine patch .1mg daily. I have a lot of syncope that has not gone away with all the antihistamines I am on. i think it's manily due too my dysautonomia/ POTS along with the mast cell problem I think a lot of my problems are due too POTS. Although I did see Dr. Castells recently for a second opinion she was wonderful and is repeting all my blood tests. She added singular too my mix but did not want too up my antihistamines or change any of my meds yet. She did agree with the dx of MCAD but wanted too rule out systemic mast cell disease first. I wonder sometimes what came first the POTS? DYSAUTONOMIA or the Mast cell problem. And by the way she did tell me about four weeks for the tryptase too come back it goes too Virginia,  for it too be done properly mine although has always been about 9.8 never higher.

Hi Goldie,

Yes, I get this too.  The mast cells might be releasing mediators (chemicals) that get that whole thing going.  I sometimes swear that more comes out than what went in!  (though that is impossible of course).

Now if you already have  LOW pressure problems from the masto, then all your fluids are coming out, then you get dehydrated and the fainting feelings start.  Your blood pressure drops, your brain senses that you aren't getting enough oxygen up there to your brain, and it sends a signal to your heart to speed up and start pumping in more blood to get more oxygen up to your brain ( welcome our friend, Mr. Tachycardia!).  At that point, you should lay flat, and elevate your feet over the level of your head and heart (put your feet up).  The blood will flow easier into your head, and the tachy should drop down and then you won't feel so faint.  

When I get this ridiculous stuff happening, then I go to the store and stock up on the Peidalyte (I recommend the grape, chilled of course!).  Will keep your electrolytes in and help with the "fainties".  Be careful of the sugar though if you are diabetic.  Eat some salty snacks too, that can help, followed by a big glass of water.

Also, there could possibly be a vagal response going on here. Here's a link that explains it:

http://en.wikipedia.org/wiki/Micturition_syncope

Anyone have any thoughts on my WBC question above? I dump massive WBC's in my urine after a flare up.....

Yes, and all are fine when I am not...maybe a few extra WBC's all the time.  Also, my bp is okay.  So, maybe is just a product of IC, with mast cells firing off in the bladder.  It is really weird though, because they can be at "infection" levels, but no protein, RBC, etc.