Last year the day before Mothers Day I had a pretty intense shocking episode. I only mention it now because I recently got important lab results that point to that day.

I started with usual symptoms, flushing, itching like crazy, hives all over me, then it progressed to intense stomach cramps and uncontrollable diarrhea where I felt I would pass out. I called 911 and away we went to the hospital.

Usually when I shock, I dont have throat constriction or swelling ( did 1 time only). Instead I skip that and go straight into cardiovascular collapse. My symptoms of cardiovascular collapse are, my BP goes way up to about 210/110 then down quickly and they lose it.  They have trouble getting an IV in me. I started having some heaviness on my chest and a little bit of chest pain but not much.  I broke into a cold sweat and felt as if I was going to pass out.  The hives turned into angio edema--which means the hives continued to swell until they joined together and I was extremely swollen--face, hands, etc.

At the time the medical staff told my adult kids they thought I was having a heart attack, I didnt think so but I did feel horrible. After giving me lots of Solumedrol IV , Benadryl IV and Zantac IV, it finally turned around, things calmed down and they let me go home.

About 3 months ago I had an 12 lead ekg done. Then my DR ordered an echo-cardiogram.  (its a 3 D picture of the heart). Then they did a 2nd one. I didnt know until last month that the results showed I had a heart attack and it dated it to May 2010--that extreme shock episode. I was upset--first that no one had told me the results or what it meant, I found out by asking for all my lab reports for the last year.

The report said, "left anterior wall infarction" dated aprox May 2010. I immediately started researching what caused it and what it meant to me. I found someone who also has cardiac symptoms with her masto--starting with tachycardia. She was a huge help, giving me the direction to look and what to look for. This is what I learned.

Masto patients who shock, AND who also have angina (chest pain) with any type of vascular symptoms (swelling, veins collapsing too), are possibly experiencing a syndrome called Kounis Syndrome. It is also called "ALLERGIC ANGINA". It means that there are H1 and H2 receptors in the heart and if mast cells are stirred into reacting, it makes those receptors in the heart react too.

This can be stopped very quickly and easily--by taking more H1 and H2 meds (antihistamines) and taking Cortisone or Solumedrol IV.  

It also seems that this same group of people might have a problem with epi pens--because they have a preservative of sulfite in it. People with Kounis Syndrome react worse to epi pens and it might throw them into heart problems. This is what happened to me. I had 2 doses of epi before I reached the hospital and I think I remember a 3rd dose in the ER.

This too, can be avoided very easily by asking the person who wants to give me epi to "Please use sulfite free epi."  They used to have injectables of these but dont make them anymore. They DO have vials in ambulances and ERs of it though, so it is an easy request.

I know this is the cause of my heart attack because I went from Kounis syndrome (with NO cardiac history or risks) into Takotsubo syndrome--and my report said, "Left anterior wall infarct" which is the telling fact, thats exactly what the tests would say.

What does this mean for me? When I shock I keep Zantac 300 mg, Benadryl 50 mg, and Prednisone 60 mg in my ER kit (besides my epi pens). I will take that AND I will also take another H1 and H2 antihistamine to protect me from going into that syndrome. I will also wait to take my epi and ask for sulfite free epi immediately.

This is MY plan only and I dont suggest it to you. I DO suggest you keep close track of the way you shock and do some reading about this syndrome, to make sure you are not part of that group and to know how to avoid it if you think you have a risk of it.

Im going to be posting some articles by NIH in the New Mast Cell Research, Studies, and Trials category near the bottom of the board for those of you who want to know more about this.

As mast cell patients, we must be proactive in our care and constantly researching what might affect our care and health. Be wise and be safe.
Hugs
Ramona