syncope diagnosis + treatment
The first time I randomly passed out, I’d been practicing yoga in my parent’s living room. Miraculously, I’d been standing in front of a couch when I lost consciousness so I fell back on it and wasn’t injured. I remember waking up confused and disoriented on the couch – perhaps I’d just sat down to take a break?
After passing out a few more times that month, I visited a local cardiologist who ordered a tilt-table test. A tilt-table test monitors how your heart rate, blood pressure and oxygen levels respond when your cardiovascular system is forced to adjust during a prolonged period of standing. For those with vasovagal syncope, the slow and monitored transition from an upright to a laying down position can cause a dramatic drop in blood pressure, a decrease in heart rate and probably a loss of consciousness.
The test is normally administered for 10 to 60 minutes. I passed out within eight minutes and had an asystolic pause, or cardiac flat line, of 18 seconds.
For most people, vasovagal syncope is a failure of the brain and the cardiovascular system to properly communicate which results in fainting. However, I am one of the lucky few whose heart occasionally stops during a syncope episode.
Given that my heart actually stopped beating for such a long time, my local doctor recommended I visit the Mayo Clinic in Rochester, Minnesota to have a full cardiac workup. During my week at Mayo, I wore an ambulatory electrocardiogram that recorded the electrical activity of my heart while I went about my daily activities. As luck would have it, while wearing it I had another asystolic event that showed a cardiac pause of 40 seconds!
This was worrisome, to put it mildly.
Following that event at Mayo clinic, I had a heart-monitoring device called a loop recorder implanted in my pectoral muscle which would monitor my heart rate for the next six years. Although the pauses were infrequent, occurring about once for every five syncope episodes, they were nevertheless, unsettling.
To add further complications, I was also having episodes that manifested as seizures. As the seizure-like episodes and brain fog continued, I had several neurological evaluations completed, including two weeklong stays in Mayo’s Epilepsy Monitoring Unit. Unfortunately, we were unable to provoke an episode during these stays which left the jury undecided as to whether I actually had epilepsy in addition to my vasovagal syncope.
Throughout the next five years, and despite trying all manners of treatments (beta blockers, SSRIs, excessive fluid and salt intake, compression stockings, activities to increase orthostatic hypertension, etc.), I continued to have syncope episodes and seizures.
Finishing college was difficult as the brain fog, fatigue and seizures were often debilitating. Maintaining a healthy and balanced lifestyle in college was a challenge. A couple of professors were nervous to have me in their small seminars, worried that I would pass out or have a seizure during class! Fortunately, I was still able to graduate after four years and returned home to live with my parents in the Chicago suburbs to figure out my next step.
Over the next six months, my health seemed to improve – the episodes relented and the fatigue and brain fog subsided. I started an internship at a nonpartisan foreign policy think tank in Chicago and optimistically thought the worst was behind me.
During the winter of 2013, I was offered a job with Awamaki, a nonprofit based in Peru that connects Andean artisan weavers with global markets. I absolutely LOVE to travel and explore new cultures so to work in a role that would encourage financial independence and economic mobility for women was a dream job. I’d been episode-free for about six months and thought I was in the clear. I packed a big suitcase and moved to Ollantaytambo, a small town in the Sacred Valley of Peru.
My time in the valley was absolutely magical. I loved my job as a marketing and communications coordinator for Awamaki, knowing that I was actually making a difference by helping the local indigenous women become empowered and independent by selling their beautiful textiles. I’ll probably reminisce about Peru in a future blog post but for now, I’ll say that I was incredibly fulfilled.
Ollantaytambo is situated at an altitude of 9,000 feet and when I arrived I never experienced any typical altitude sickness. However, the high altitude slowly began to take a toll on my body - after a couple of months I started to experience syncope and seizures again. By the time I left, I’d be having a few each week and was struggling to function. I’d end up on the floor of the office, a restaurant, or curled up on my bed. My sweet boyfriend at the time brought me an oxygen tank to keep next to my bed to help speed up my recovery after the episodes, but I was still spiraling into a period of sickness and darkness.
After seven months in Peru, I was depleted, defeated and finally moved back home with my parents. To be honest, I don’t remember much of the months that followed - I was physically weak, experienced crushing fatigue and brain fog, and continued to have episodes. My mom recalled that she was nervous to leave me alone in a room in case I passed out.
It took me six months to recover from my time in Peru. Slowly, I regained my strength and energy. I started working part-time then transitioned into a full-time job for a tech startup. My episodes eventually subsided, and I resumed a relatively normal and healthy lifestyle – and moved into an apartment downtown Chicago!
I have absolutely no regrets about living and working in Peru despite the resulting hardships – I loved my job, had a wonderful boyfriend and met two incredible boss babes who are to this day, still among my closest friends.
For the next two years, I was episode-free! I had accepted a job at a large consulting firm and started traveling for work about a week per month (which is literally the perfect amount). Since research stated that some people with vasovagal syncope may outgrow it by their late twenties, I was hopeful that this was the case for me.
I was onsite with a client in the LA area for a week. One morning, I took a very early conference call with our team in Amsterdam. I’d been sitting in my bed on the call and the next thing I knew, I woke up slumped and disoriented in my bed. I realized I had passed out, assuming that my heart had likely stopped. (Because of my implanted loop recorder, I eventually learned that my heart did stop for 20 seconds). I was too woozy and nauseous to travel to the client site so I stayed at the hotel. Within the next six hours I proceeded to have two seizures. I don’t remember much of what happened over the next couple of days – but a close friend of mine in LA picked me up and took care of me until I could fly home to Chicago. I probably shouldn’t have traveled as soon as I did, but I was desperate to get home.
A month later, I finally decided to have a pacemaker implanted. Approved by the FDA in April 2016, the Micra™ is the world’s smallest pacemaker – a small leadless pacemaker that’s implanted directly into the wall of the heart via a vein in the leg. It’s seriously so cool – plus it has fewer medical complications and post-implant restrictions.
Unfortunately, I continued to experience extreme fatigue, nausea, brain fog and muscle weakness. I took a leave of absence from work, praying that I’d recover quickly. Due to my continued fatigue, I eventually visited a Doctor of Osteopathy (similar to conventional medical doctors but often more open to natural approaches for healing), who was the first doctor to ask if I’d ever been tested for Lyme disease. I had not so I was open to the idea, but seriously doubted I had Lyme – plus I didn’t really know anything about it. Turns out I did have Lyme disease AND Epstein Barr Virus which has been linked to chronic fatigue syndrome.
On the bright side, I had a new, logical explanation for my constant fatigue, brain fog, weakness, and memory loss. But it also sucked. To be honest, I was in denial for the first couple of months. I just wanted to stop having my vasovagal symptoms of syncope and seizures so I could return to work as quickly as possible. I went four weeks without an episode, deciding that the worst was behind me and that I was healthy enough to start working again. WRONG.
I started working from home, hoping that it would be easier on my body, but the fatigue was killing me. Even after sleeping 10-12 hours, I literally could not keep my eyes open throughout the day. I’d take a call, sleep for 30 minutes, take another call, then take along nap at lunch, etc. I continued like this for two weeks before I finally admitted the Lyme was wreaking havoc on my body.
With the support of my managers, I took another leave, this time indefinitely.
I started this blog in November 2018 with the hope of creating an outlet to share my story and journey to wellness. While I’m still on a medical leave from work, I remind myself that my job doesn’t define who I am or my worth as a human being. This is challenging for me since society has conditioned us to evaluate someone based on their job responsibilities, title or external accomplishments. It’s taken me a long time to let go of worrying about temporarily losing the opportunity to advance in my job, but I’ve still got a long life to live – plenty of time to work, follow my passions, listen to my heart, feed my soul and most importantly, to heal my body.