My siblings and I all faint. Some of our kids do, too. We had always been told that this condition, syncope, was benign; for many people that may be true. But my heart ❤️ stopping for 25 seconds seemed like a big deal to my doctors.

I have hereditary alpha tryptasemia syndrome HATS and neurocardiogenic syncope (NCS) with cardiac inhibitory response (block). In January 2012, my heart stopped for 25 seconds, and I received a pacemaker that afternoon.

Realizing that I had some sort of a cluster, my electrophysiologist and endocrinologist researched--and eliminated--a number of potential causes*. Oddly, it was the electrophysiologist who questioned whether mast cells could be triggering the cardiac inhibitory response, referring me to the inventor of the tryptase test, Dr. Lawrence Schwartz at Virginia Commonwealth University, just a smidge over 5 miles from my house.

The syncope diagnosis helped to diagnose the trifecta that pointed toward hereditary alpha tryptasemia, along with increased tryptase, hypermobility, a history of extreme allergic reactions, and a lifetime of flushing. The trifecta usually presents with Postural orthostatic tachycardia syndrome (POTS); Dr. Schwartz reasoned that NCS was still within the dysautonomia bucket. He and his wife, Dr. Irani, helped our family pull everything together to enroll in studies at the National Institutes of Health (NIH). Once they tested all of my children, we realized that while only 1 of my children had HATS, 2 of them had NCS. 

Tilt table testing determined that they demonstrated the cardiac inhibitory response, as well. One even has an inferior vena cava that collapses upon inspiration, pointing to some structural abnormalities. In the early stages, medicines like Fludrocortisone and Midodrine can mitigate the hypotension. If, like me, they suddenly begin experience an increase in the fainting events, at some point they may need pacemakers as well.

One nice thing about my pacemaker, is that it generates a solid record of all of the NCS events (with low pressure/ bradycardia) and all of the POTS events (with tachycardia). I also experience premature ventricular complexes (PVCs). Understanding the multiple causes for these kinds of events influences so many of our decisions in life, and for me, it reduces fear--I understand what is happening, and sometimes can predict why it is happening.

This past Tuesday, my pacemaker* was replaced. Today, 2 days later, I was able to return to my water aerobics. I am very grateful for the AQUACEL™️ surgical dressings, which allow a person to take a shower or bath after surgery. My exercise modifications: I did not lift my left arm, I stayed in the shallow end the whole time, and I wore a sports bra (because a full suit may have wicked water up to the bandage). I'm also about to take a nap, before I head back to work this afternoon.

I'm grateful for every day that I'm alive, that my last pacemaker lasted 10 2/3 years, that the FDA has approved leaving my previous leads for another 11 years, and that the newer pacemaker now allows me to get an MRI, if needed.
Co-morbidities *neuroendocrine tumors, or NETs

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