I know a sign of shock is a drop in blood pressure but I have had times when my blood pressure was actually quite high and I was feeling like it was an allergic reaction.  The last time I went to the ER I was feeling horrible and started having palpitations and chest pains.  My BP when I got there was really high but I suddenly broke out in a rash all over.  They kept me overnight so they could ore-medicate me to do a few tests.  I had to change back into my own cloths because the gowns were making my skin flare so bad.  The next day I felt better but really tired and the tests were all fine.  
My blood pressure seems to be getting higher lately, which seems to be related to the addition of more allergy medication.  I'm thinking my blood pressure may actually be normally high but because the masto wasn't under control it may have appeared normal to low.  I've started trying to keep track but I don't know if it's a good idea to try to lower it or not?  It's been tracking around 138/80 lately and was normally 120/60 normally.  Sometimes it goes to 70/56 or so but that happens rarely and usually when I'm sick and can't keep my medication down.  
I have not found much information on this so if anyone has any experience or links I would be grateful.

Blood pressure is 147/78 today and I'm feeling really crappy.  Itchy but no rash yet, my stomach hurts  badly.  I don't know what's going on.  Maybe I'm just coming down with something?  Should I assume this is not masto because my blood pressure is high?  

POTS looks very intersting.  Thank you so much for the lead and the information.  I try very hard to understand all the mechanisms that lead to the physical experiences.  It's so hard to know what to do sometimes.
I really don't know what to relate my blood preasure too.  I just got a diagnosis with or SM but as with most, have suspected some type of mast cell disorder for a long time.  I've tried not to blame everything on my suspesions so I follow up on symptoms as if they were not related.  I use my brain to distract me from my body.  Research kind of gives me a way of seperating myself from my issues and become clinical and factual.  It keeps me from panicing.
My thoughts were exactly what you said your doctors are.  How can I convince them that I need to be treated for anaphlaxis if my blood preasure is high?  More so, should I be?   My doctor is at Yale and I know they are very interested in treating me and have had some activity with the Masto society.  I've thought about going to Brigims and Williams but I just want to find one person I can trust and this is where I was sent.  Since I really like this Dr.  who spent over 4 hours with me on my last appointment, I think that she has shown the commitment and it may help someone else if one more doctor has experience.  
I collect data on myself like it was my job.  Cold hard facts.  I think I started to do that in self defence.  The doctors always look a little dubious when I started talking about my symptoms but when I pull out charts and graphs it's hard to argue with numbers.  I felt it took the focus off of me and brought thier attention to figuring out what was going on.  
Today my preasure is 117/70, I am acutely aware of sents but not reacting to them, the diareha is back, and my thoughts are disorganized.  Feeling a little sad and sorry for myself even though this is not as horible as it gets.  These types of days I feel like I'm sleep walking with occational sprints to the bathroom.
Thank you for answering me!  I'm not sure I understand how to send you my email address??  Are there instructions?

daowebe wrote on 09/18/11 at 01:28:29:


This is EXACTLY the very same attitude I've taken since we ruled out the carcinoid!!   Yes! It's a definite self defense tactic and I think that it's a very healthy way to deal with everything for it helps you to STEP BACK from the situation and prevent it from becoming so very personal!  I only allowed myself to get closer to it when I was confronted with serious situations like my open heart surgery, then I had no choice and had to see myself in the midst of the sitaution and deal with it accordingly.  Yet this attitude and behavior allowed me to prevent any emotional damage to myself in that I didn't get myself emotionally distraught and wrapped up in things until I had DOCTOR CONFIRMATION!   This is the mistake that we patients make!   You see, doctors are able to deal with so many serious and dangerous situations because they step back and don't get personal about what they are dealing with.  This tactic allows them to look OBJECTIVELY at their patients and the disease and it protects them from a lot of serious emotional involvement.  In our doing this very same thing, by only allowing ourselves to get personally involved once a doctor has confirmed things, this helps us not to get so frightened with all of the SUSPICIONS!  Until you have FACTS to have to confront, it's really nothing more than "HERESAY" and "GOSSIP", if you understand what I mean.    When we deal with disease and symptoms, we can not allow ourselves the luxury of reading the literature and presuming that what we read is what we have!  We must use the facts of our lab tests as well as doctor confirmation as a means of bringing that "heresay and gossip" as to being "truth".   If you don't follow this practice, then you open yourself up to being swayed by any old thing and this will without a doubt affect your emotional well being.  

So, I'm right there with you in that I'm a fact gatherer as well.  There's another benefit to this behavior - your doctors learn to RESPECT you and to TRUST you for they see that you are dealing with your disease much as they do and so they are more OPEN to hearing what you have to say regarding your own case!

Now, as to sending me a PM, all you need to do is find my name on one of my posts and click on it.  This will open up a page dealing with my profile and it will give you the option to send me a message.  

As to the hypotension episodes, I've found that they improve with more antihistamines just as my pressure will lower with more antihistamines.  Yes, this is a shocker to doctors as well!  My doctors ran a stress test on me and it put me into anaphylaxis.  My pressure went to 170/110 with the reaction and they kept me hooked up to the machine while I was struggling with the reaction.  They gave me my allegra and within 10 minutes, as the dyspenea, weakness, near syncope, flushing and abdominal pain began to subside, my BP came down as well!  They were SHOCKED!

This is because the MCs are releasing their mediators.  Although epinephrine is the way to directly deal with the mast cells, we can improve our sitautions by dealing with the histamine release.  It doesn't stop the reacting of the MCs themselves, they continue to release their mediators.  However, by mopping up the mess those mediators make, we help to stop the MCs from continuing reacting, which eventually allows things to return to normalcy.  This is why the antihistamines help to increase or decrease our BP because what has caused the hypo and hypertension is the overdose of histamine coursing through your body.  Granted, there are other mediators but, histamine is the most abundant and by blocking the effect of the histamine upon other parts of the body, it ends up not reaching those things which change the blood pressure which is why it helps to return the pressure to normal.

So, does that make any sense?

So, what I do, is take an extra antihistamine and if the fatigue is too much, I GO TO BED and allow the complete turning off of my body to help combate the situation.  I also keep a low profile for the rest of the day!

I hope this helps!

Lisa

No no!!  You misunderstood me, the antihistamines are NOT responsible for the hypo-hypertension!  The masto is the cause for those fluctuations.  Instead if I am hypotensive, the antihistamines will help return my pressure to normal.  If I'm hypertensive, they they will help to lower it back to normal.  This is because the mechanisms which are causing the pressure to rise too high while in crisis or to fall while in crisis are being regulated and returned to normal by the antihisatamines.  They are not the cause for the fluctutions in the pressure.  However, they thankfully will help to eliminate the cause and restore everything to normala instead.   Understand?

It's all very, very confusing, I know, but as time goes on, it will make more sense to you.  

You see, the mast cells have a great deal of histamine within them.  When the mast cell triggers, it releases histamine and many more chemicals into the blood stream.  Histamine is of the greatest quantity and when released in large quantities it creates all kinds of reactions which you see in itching, flushing, hives, reflux, diarrhea, dyspnea, anaphylaxis, etc.  We masto patients release this on a chronic basis - as a constant dumping situation.  This is why we live constantly with some kind of grief or another.  By taking antihistamines, or as they are called by the doctors, histamine blockers, we end up blocking the effects of these chemicals within the body.  This helps keep our reactions in check.  The minute the balance tips too far over into the histamine range, our reactions come out again and we need to take more medicine to once again keep everything in check.  

So, when you are reacting too much, your pressure will either rise or fall.  This is why, when you take an antihistamine, it will help to return your pressure to normal ranges.  Yet this is why the hypertension meds also won't keep your pressure from rising when you are reacting - this is because it's an acute reaction and one which is not caused by the normal processes.  Because your pressure is shot up by a chemical process, this makes it so that your hypertension medication will not be as affective during this acute reacting.  However, deal with the cause of the acute reacting and you will indirectly deal with the result of it which is the hypertension.  

I hope this makes it more clear.  

Lisa

So, 168/81 before meds, 130/71 half hour after.  Guess the proof is in the pudding.......  I plan on doing the before and after a few more days to see if the results are consistent.  Either way, it's more data that might help the doctor to figure out if I need blood pressure meds or just more antihistamines.

No issues, I truly appreciate your feedback and fully understand that some days your focus is on just getting through the day.  I talked to my doctor (She actually called me to see how I was doing!) and she agreed that it may be useful to spread my medications out so I am taking them alternately throughout the day.  I am now alternately taking the Atarax and Allegra morning, noon, evening, and bedtime.  It's only been two days but my blood pressure is now stable and normal throughout the day.  
I feel that the high blood pressure was an important clue that I was missing and was being misinterpreted by my doctor and myself.  I am also sure that without the input I got here I may have been put on high blood pressure medication with disastrous results.  The tips that I got allowed me to use different search parameters and locate good information that detailed how mast cells can cause an increase in blood pressure.  This information will help my doctors feel more comfortable with giving me the right medication despite what they may initially feel is a contraindication.  I wanted to post the two articles that I will be adding to my information packet.  If anyone else is having this type of issue with high BP, I would strongly recommend that they begin tracking their BP both before and ½ hour after meds.  If they see a significant improvement after medication, use these two articles to discuss their findings with their doctor:  

http://www.sciencedaily.com/releases/2005/03/050325161302.htm
http://ip.cctec.cornell.edu/index.cfm/ts.details?tk=K4AB0824112409574604&from=se...

Thank you again!