Since publishing “Death by Tuna Sandwich” in The New York Times about my self-diagnosis of a rare condition called swallow syncope – six people have either commented or contacted me describing the same symptoms. Interestingly, all of them have been male, two are brothers, and only two have had a formal diagnosis and treatment with a pacemaker.
Several readers expressed surprise that it took me so long to seek medical advice about my heart stopping, but this is a common theme in the stories I’ve heard from other sufferers. That’s because the symptoms typically begin very mildly, over many years, with nothing dramatic that would initially suggest a cardiac problem or prompt a medical consultation. I could compare it to something like headaches, or light-headedness, which for many people might wax and wane in frequency and severity depending on their age and stage of life.
Although only an estimated 100 cases have been described, swallow syncope is likely grossly under-reported, both because of its innocuous beginnings, and its potentially eclipsing culmination. Indeed, a veteran New York paramedic who also posted a comment said that passing out while eating is a common emergency call in New York restaurants, and “cardiac arrest often leading to death is also fairly common while eating.”
Self-diagnosis stories carry a universal appeal, and mine is an example of how the internet dramatically enhanced what might have been a long, frustrating, and dangerous medical nightmare. For me, the aha moment came from a single case report entitled “Dangerous sandwiches” published in 2008 in The Lancet. That led me to Martha Bryce’s story published 2009 in the Washington Post.
But I still hesitated to go to the doctor, because I knew the fleeting symptom wouldn’t present itself on demand. In fact, I had actually undergone a thorough cardiac stress test a few years previously – before my second trip to Kili’s summit – and the results were normal. Finally, when my black outs got predictable, every meal, multiple times per meal, I realized an electrocardiogram (ECG) would now probably pick it up. But it couldn’t be just any ECG, it had to be an ECG that monitored my heart while I was eating.
That’s where my GP’s open-mindedness and the relationship we have built over the years tipped the balance in my favor. The internet and Dr. Google is dramatically changing the doctor-patient relationship but it doesn’t have to be a negative thing if both parties approach it the right way.
The downside of Dr. Google in this story is that what’s out there on swallow syncope glosses over the gravity of the condition (I guess the title of my piece – “Death by Tuna Sandwich” – might at least correct that!). Despite hours and hours of researching I was still not fully aware of what my ECG would eventually reveal: that my heart was stopping multiple times every day for as long as five seconds or more, and that this “high-grade atrioventricular block” is potentially fatal. Reading other case reports, I figured those patients were so much sicker than me. I told myself I was over-reacting – my heart could not be stopping, I was too well for that!
As I’ve learned from the reaction to my story, other swallow syncope sufferers seem to share the same misperception. Or is it a misperception? How can we be so sure that this condition could kill us? Most of us have lived with it for many years. All I know is that by the time I went for help – and this is what I’ve heard from others – my health was deteriorating, suddenly and alarmingly.
But I’ve also discovered that at least one patient has gone into a full four-year remission, after 10 years of wearing a pacemaker and finally getting it removed. Of course, the rest of us wonder if one day we’ll be free of the daily flutters that this device brings, as well as the lingering constriction that we feel when we swallow. Thankfully the internet has now brought a number of us together to share stories and support. Perhaps we can help push the science to find us some more answers.