Hi Everybody, I'm looking for some serious feedback please.  

Some of you know me by now and know that I've got some pretty strange reactions to things.  Any kind of emotional basis for these reactions has been ruled out.  We're beginning to think it's neurological.  I go through what is called a Prolonged Syncope.  This is an extremely rare reaction that only masto patients do and it's when the inflammatory responses of the mediators are so intense that they case the vascular system to totally open up and the blood flows too swiftly through the veins and creates a syncope which is of a longer duration than normal.  This has been studied only once by cardiologists but never neurologists.  The patients are known to be either totally unconscious or at times semi-consious.  The syncope can go for as little as 15 minutes or for hours at a time.  When I asked amoungst us about 2 years ago if anybody else went through this one woman said she was seen in syncope for up to 8 hours following surgery.  Another said up to 2 hours following anaphylaxis.  I've been seen up to 2 hours following things like colonoscopes and my BMB, 5 hours following gallbladder surgery and 6 hours following CT contrast injection.  I do this ALL THE TIME!!

Dr. Escribano calls this Stress Anaphylaxis and I've spoken with him about this several times because I seem to be the champion amongst of for this syncope.  I've written to masto authorities around the world trying to find another case like mine but even they have never heard of a case like mine!

Well, it's not just to these major provokers that I react to.  I will also react to the EFFECTS of medications like laxatives and blood pressure meds which bring my pressure down too quickly.  The higher my pressure was, the stronger the reaction when the medication kicks in.  It's not the medicine itself I'm reacting to, but the effect of it.  Laxatives are not know to create anaphylaxis amongst us, but if they cause my intestine to release with too much force, it will put me into anaphylaxis.  This Dr. Escribano calls stress anaphylaxis - something that stresses the system.  If lightening hits too close and frightens me too quickly, this will trigger me!  If I travel for too long of a distance, I will faint!

Yet, this isn't the only weird stuff I go through.  In December I had to do an MRI without contrast.  I was perfectly fine prior to the exam - no flushing even.  Yet, no sooner did the machine begin to do it's job, I began to flush and I fainted!!  Has anybody else done this?

Yesterday, I had to do a nuclear scintigraphy exam.  I was given the nuclear isotope solution which is considered completely innocuous!  I researched it and although this scan has been used to detect bone lesions in masto patients, there's not a single case of any of us reacting to it.  There's not a single case of ANYBODY reacting to it!!   I DID!!!   As the solution was injected my vein began strong stinging.  Today my vein is inflamed and bruised looking! The contrast did it!!  Yet, as it began flowing through may veins, I could feel changes going on!  When it reached my right shoulder and neck, I began feeling it rise up into the right side of my head and with it I began to flush and feel bad.  I felt it going down into my chest and with it began the dyspnea!  I got so fuzzy headed I almost couldn't ask for my purse in Portuguese (I live in Brazil)!  The doctor who was attending was called and he was shocked to see what I was going through for I got very weak and was flushed enough to be rashing on my neck and chest!  Fortunately the antihistamines are very effective for me and I didn't faint, but I would have if I hadn't responded with the meds quickly enough.  But this reaction was very strong and I had to take a 2nd dose of antihistamines about 20 minutes later because I wasn't well at all!  I ended up having to hit in with the Prednisone too later on and keep my antihistamines very high, but fortunately I didn't faint nor did the reactions progress.  I kept it all in check, but here I am now 2 days later still dealing with the ongoing reactions to this substance.


My doctors are going to do a neurological investigation into this.  We feel that something more is going on that makes me so very supersensitive.  To the very best of our knowledge, there has never been a formal investigation into those of us who are known to have this stress anaphylaxis.  

This is why I'm writing.  I'm taking a poll amongst us to find out how many of us react to physical stimuli like this.  For example, I've had a vaginal exam cause me to immediately faint.  Dr. Castells said that this was caused by the release of acethyl Cholamine and this in turn triggered a vaso-vagal reaction.  My doctors, when they have pressed on my vagus nerve under my sternum or in the upper abdominal region, this will trigger reacting and fainting.  About 2 months ago I was feeling the scar tissues on my sternum from my recent open heart surgery and I caused myself to immediately faint!  If the doctors ask me to hold my breath for an exam, or to breath deeply to listen to my lungs, this will case me to faint!!   These are neurological symptoms, not cardiovascular!!  What is the issue here?


Please, if any of you find that your bodies are extremely sensitive to physical stimuli, when undergoing medical testing of some sort, or if your breathing causes you issues, or if you've been triggered by MRIs or some kind of situation similar to those which I am describing, (not to foods or medications please), my doctors would really appreciate having some feedback please.  

If you would rather not post this publicly here, then please write to my email with your replies.  

I would greatly appreciate your input please!!

Thank you!!!


Lisa

Hey Lisa,
do you want feedback about people that go into syncope from stress or become anaphylaxis?
We just had testing done at NIH and my youngest daughter has exercise and stress induced anaphylaxis. She will start to get hives, nausea and wheezy and strenuous exercise will cause her to because pre anaphylactic.  

My husband just had an MRI with out contrast and did start flushing, sweating, nausea but managed  to finish the procedure.

Its interesting that you say that because I when my husband gets startled its so much worse than if I get startled... when he gets startled its magnified times 10 and he can start to react (sweating, gassy stomach, flushing you know). When we have to go some where he over thinks things and goes over every little detail, gets stressed and starts reacting. If he has to speak in public hell start to sweat, sometimes when we go talk to these researchers or an important doctor he'll get nervous, sweat profusely and react.

About the magnetic pull from the MRI machine my husband has said that at times when hes on the computer or ipad he starts sweating & flushing...we have these grounding pads that we use to sleep on and use when on the computer...its supposed to ground you and cut out harmful effects from the electromagnetic field. When he uses the grounding pad and hes on the computer no sweating or flushing...really interesting.

Its almost like every stressful aspect about life he hyper exaggerates or its magnified 10 fold which makes him react.

Im sure his brain is releasing certain stress hormones that must trigger mast cells. I believe there is so much doctors still dont know and have no idea how difficult it is to live with this day to day. All the big and little symptoms and mysterious things that happen to your body.
I tell people my husband is a porcelain doll and Im the crazy glue trying to keep him together.

Before my husband got sick my daughters and I would joke that he was bipolar and road rage was his middle name. Since his symptoms have calmed down his temper has as well. As tragic as this past year has been my husband has become much nicer, more patient and gentler person...we give him a lot of leeway now when he has his masto moments.  

Lisa,

Don't know if this will help at all, but....  Regarding stress anaphylaxis, I flush from stress.  An Ativan/Benadryl combo usually does the trick.  I did react to what I think was CT contrast, but it could have been stress.  There's no way for me to tell the difference.  I've also felt like I was starting to react when I'm in distress from needing a bathroom, for example, when we're on the road going somewhere and no gas stations in sight.  I've thought that could be a vaso-vagal event.  

While I haven't noticed reactions from CTs without contrast or MRI's, I always pre-medicate before them, just in case.

Don't know if this means anything, but I have a friend who has some nerve damage in his hip area, and whenever he tries to go for a walk, after a block or so, he has to use the bathroom and quickly.  His doctors think it's neurological.

It all seems connected, but how?  I have no idea....

I get some goofy reactions at times too.  If I get anxious in general, then I kind of tend to get more of the syncope like symptoms.  I think emotional upset is a huge triggor for me.

I started to do yoga relaxation tapes now when I feel like this, and it has helped somewhat I think.  I almost wonder if it doesn't train your body to handle stress better physiologically? Makes you more vascularly-fit, so to speak, better able to tolerate pressure changes?  No basis for this, just my own thinking and perseption from my own case.

Of course, prayers help a lot with that too!  Sending you tons of prayers Lisa..

I'm recently learning that loud, abrupt noises sets me on the edge of a reaction. Thankfully I'm able to quickly work at calming myself before it gets out of control!

Welcome back! We've missed you