heart attack

Allergic angina (Kounis Syndrome) in mast cell disease patients alvin February 13, 2018 - 9:14pm

Everyone tells me that the cardiologist I see is the best heart doctor in Boulder, Colorado, so on Thursday we were talking and I was telling him that it looks like I have mast cell activation disease, and said, “So that fake heart attack I had last May may have been allergic angina, you know, Kounis Syndrome. If we had known about MCAS at that time I might not have needed that angiogram, yada yada yada.” Then he said, “Wait, what was the name of that disease?”

At first I was upset that he didn’t know what this was, but then I realized how rare mast cell disease is. Statistically there are only 26 other people in Colorado with this disease, and if I was still in Alaska there would only be three or four of us. (This is the same doctor who knew what a Pheochromocytoma is, and told me to get to the Mayo Clinic.)

The good news is that I was able to give him all of the information I have on mast cell disease and Kounis Syndrome, so hopefully in the future he can try giving patients who present unusually some Benadryl and see if that helps. (I started to write, “Give them Benadryl instead of an angiogram,” but the stress test showed a possible dead spot in my heart, so I was getting that angiogram one way or another.)

(This image comes from the book, Never Bet Against Occam: Mast Cell Activation Disease.)

Kounis syndrome (allergic angina)

Per Wikipedia, Kounis syndrome, also referred to as allergic angina, is “a group of symptoms that manifests as unstable vasospastic, nonvasospastic angina, or acute myocardial infarction and is triggered by the release of inflammatory mediators following an allergic insult.”

Lisa Klimas adds this: “The phenomenon we now called Kounis Syndrome has previously been called by names like morphologic cardiac reactions, acute carditis and lesions with basic characteristics of rheumatic carditis. It is sometimes still referred to as allergic angina or allergic myocardial infarction/heart attack depending upon the presentation. Allergic angina, which affected patients as microvascular angina, was first noted to progress to allergic heart attack in 1991.”

From my perspective as someone just learning about mast cell activation disease, it’s interesting to see that this was known in 1991, but mast cell activation diseases weren’t really recognized until 2007 to 2010.

My week in review

FWIW, my week leading up to the Memorial Day weekend went like this:

Tuesday: Went to the liver doctor, he said my numbers are greatly improved, no worries, keep up the good work. A couple of hours later I started having chest pain, and eventually went to the ER. Their first two tests didn’t show any heart issues, but they wanted me to take a stress test the next day.

Pay attention as if your life depends on it

I really like this quote about “paying attention as if your life depends on it.” One night last spring I laid in bed, unable to move because of severe pain in my chest. Any time I tried to move the pain got worse, so I laid as still as possible. I was laying on my right side, looking at a bedside table, and all I could do was breathe and look at that table, what was on the table, and see the light coming in from outside. At the time I was going through tests to see if there was a hole in my heart, and at that moment I thought I was going to die, so I can tell you, I’ve never ever focused on my breath like I did at that time. I kept that state of mind until I passed out.

This quote comes from a book titled, “Mindfulness for Beginners,” by Jon Kabat-Zinn.

Tue, May 7, 2002

On Saturday, May 4, 2002, the day of the Kentucky Derby, Jim Kimmel, a friend and co-worker, passed away. He had a heart attack while doing something he loved, riding his bike with his friends. You are missed very much Jim.