STARS Patient Information
Joyce's Syncope Story
Fainting has long been associated with 18th century women who wore their corsets too tight. “Why goodness, I feel faint,” was a common line in old movies or romance novel. So, as a woman who regularly ran three to five miles and lifted weights at the gym, as a woman who thought she was pretty tough, I was surprised when I started fainting.
I had fainted a few times as a kid – once getting a vaccine in a doctor’s office, another time after I banged my knee especially hard. But at age 24 I fainted on the subway one morning on my way to work. That’s when I became truly frightened. The experience of “coming to” on the floor of a moving train packed with staring commuters was horrifying. At work, I called my doctor who attributed my experience to dehydration and heat. She said I should come in if it happened again. It didn’t for a few years, but then it started happening every day.
Mornings were the worst. There were many days when my kids were late for school because “Mom had an episode.” My morning shower was a trigger, I discovered after waking up on the bathroom floor a few times. The caffeine in coffee was another trigger. My husband even witnessed a seizure one morning as I was reaching for the alarm clock – body clenched and eyes wide open; thank goodness it only lasted less than a minute. It wasn’t just the faint that was frightening, it was also how confused and queasy I felt for the following few hours.
Finding a diagnosis for vasovagal syncope can be just as scary as fainting. For me, the doctors started with brain scans looking for a tumor. Imagining a time bomb in my brain was stressful, and awaiting test results was a worry-filled experience for my husband and me. But, good news -- my brain looked okay!
The battery of tests for the heart were frustrating in a different way. It’s hard to catch a fainting episode during a heart scan or a stress test. Of course, when I wore the Holter monitor (a device with electrodes that stays on except when showering) I had an episode within a day or two. That morning, I had to phone the results into a monitoring service. The woman said, “You need to get to the hospital right away.” I knew I was okay, but still had to chat with my doctor to avoid a hospital trip.
Finally, the tilt table test was definitive. This test consisted of lying on a table tilted so that blood circulated toward the top of my body. After 20 minutes or so, the lab technician tilted the table upright into a standing position creating a sudden change in blood pressure. I had a major episode – both fainting and seizure-like symptoms. After weeks of testing, I had a diagnosis!
I soon learned that vasovagal syncope is caused by a sudden lack of blood to the brain often because of a shift in blood pressure. As a kid, mine was triggered by pain or stress. As an adult there was no specific trigger but it usually happened in the morning. My doctor prescribed fludrocortisone acetate; I’ve been on that medication for many years with very few episodes.
Since my diagnosis many years ago, I’ve learned to control the few episodes I have. In addition to medication, I drink a lot of water, limit caffeine, and avoid standing for long periods of time. When I feel any symptoms, which usually start with queasiness in my stomach, I always get down on the ground; falling is one of the most dangerous aspects of syncope. I’ll squeeze my thighs as hard as I can which brings my blood pressure back up. I can mostly avoid the actual faint, but I’m still groggy for a few hours.
While I feel I can handle my episodes, it’s important to remember how frightening and stressful they can be for those who witness them. My husband has described my seized up body, my eyes fixed, open, and dilated, and my jaw locked. He’s explained that these experiences are some of the scariest moments in his life, but at least he knew the episodes would soon subside. I can only imagine what I looked like on the subway all those years ago – certainly not like the stereotypical delicate woman swooning into a dramatic (but pretty) faint!
In reality, fainting can be both embarrassing and dangerous, whether you’re giving blood or commuting to work. And it’s incredibly common in children, men and women. We now know that vasovagal syncope is ubiquitous but very hard to diagnose. If you feel you’ve fainted more than the average person, or you know someone who faints, visit stars-international.org where you’ll find a helpful community and information on both diagnosis and treatment that you can discuss with your doctor.
Joyce’s stories have appeared in The Boston Globe Magazine, Parents Magazine and Family Fun Magazine.