“Death by tuna sandwich? Not on my watch!” bellowed the emergency room physician as I sat hooked up to a 12-lead electrocardiogram. “Your heart does some crazy things.”
My heart does do some crazy things. It stops when I eat.
It’s called swallow syncope, and it’s extremely rare. Only about 100 cases have been reported around the world.
Oh — and I diagnosed myself.
My swallow syncope had a very insidious start. So insidious that I can’t even recall exactly when it began, other than it was around 15 years ago.
I would swallow a big bite and start enthusiastically on the next, when sometimes —maybe once a month or so — it would feel as if the food simply stopped going down. Then came the lightheadedness, tunnel vision and muffled hearing.
At first, it was fleeting and would usually pass without any of my meal partners noticing. But over the years, I’ve needed to lower my head and hum to release the spasm in my throat, a strategy that became especially awkward in restaurants or while having lunch with my boss.
For years, I just chalked it up to eating too quickly or not chewing enough. But about a year ago, it started happening more frequently and the tunnel vision turned to total blackness. By now, my family was familiar with my head-on-the-table meditation drill, and I was starting to worry this was something more serious.
I started researching on the internet (I’m a medical journalist) and found a case report about a 25-year-old British woman with similar symptoms. But it seemed too bizarre — and too scary, partly because the condition was described as “potentially fatal.”
This past month the episodes increased in frequency: every day, every meal, sometimes multiple times per meal — until one day I actually fainted on the kitchen floor. Now I knew I had to see a doctor and get a diagnosis — for my own safety.
“How do you feel about your patients walking in with a fistful of internet printouts announcing that they have a rare disorder?” I ventured.
My doctor smiled. My stomach sank.
“Great,” she replied. “It makes my job easier. But don’t tell me what you think it is, just tell me your symptoms.”
I took a deep breath. “So, I was standing at the kitchen counter eating this tuna sandwich. Next thing I knew, everything went black, and I was on the ground….”
She had me fitted with a 24-hour Holter monitor. When she called the next day with the results I was walking into a restaurant. “Don’t eat, don’t drive, go straight to the E.R.,” she commanded.
The Holter results had shown that my heart had stopped nine times in that 24-hour period, sometimes for as long as five seconds. The sobering medical report said “high-grade atrioventricular block,” which can progress rapidly to complete heart block, cardiac arrest or sudden cardiac death.
For the first time it really dawned on me: Death by tuna sandwich could actually have happened to me.
I was hospitalized and sentenced to a puréed diet.
The fourth doctor I saw in the hospital, a cardiac surgeon, had thankfully seen swallow syncope once before — a decade ago when he was just a resident. He prescribed the treatment I had been avoiding: A pacemaker is now hooked up to my perfectly healthy, athletic heart. It springs into action with every swallow.
The problem, I keep repeating as a mantra, is not with my heart. After every cardiac test in the book, my 52-year-old ticker is in perfect shape. It’s propelled me twice to the peak of Mt. Kilimanjaro, crossed the finish line of many a half-marathon, and survived the seemingly endless contractions of a 26-hour unmedicated labor.
The problem is actually with the vagus nerve — one of the longest nerves in the human body — which happens to control both heart rate and the swallow reflex, among other things.
For reasons that are not yet understood, people with swallow syncope sometimes get their vagus signals crossed. For me, swallowing something bulky, like a thick, dry tuna sandwich, seems to “stun” the vagus nerve: my esophagus constricts, my heart stops, and sight and sound recede.
Thankfully, the pacemaker now reboots my heart when that happens.
But life as a medical aberration remains daunting, because there is no instruction booklet for this orphan disorder. Nobody knows why my vagus nerve signals my heart to stop, or what this means for me down the road.
As a medical journalist, I had the immense honor of knowing and profiling David Colman, director of the Montreal Neurological Institute, in 2011. He inspired me with his offbeat curiosity and penchant for serendipity.
He quoted Louis Pasteur, “chance favors the prepared mind,” and wrote “we must also teach how to prepare the mind to accept the unexpected discovery, because most often, serendipity provides the real breakthroughs.”
His insight endures. It captures a philosophy that energized me in my search for a diagnosis, and nourishes those doctors who practice the true art of medicine.
Kate Johnson is a freelance medical journalist based in Montreal.
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