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How My Anxiety Led to a Dysautonomia Diagnosis

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When I first left home for college, I was nervous. I didn’t really know what to expect, I just knew I was “ready.” I was graduating while still 17, so there was also a part of me that secretly wondered if it was too soon… was I equipped? Would the world take me seriously? After a few weeks on my own, the honeymoon phase ended and I knew my answer: I was not ready, and the world didn’t owe me anything. As deadlines crept closer and grades were flowing in, I began experiencing anxiety for he first time.

This. Was. Stressful.

Fast forward a few years (and several big changes) later, the anxiety felt out of control. I tried medication. I tried therapy. I even tried diet and lifestyle changes. I was convinced that I just wasn’t a “meditator” since not even mindfulness made a difference. Over time these anxiety episodes began evolving – I would black out, or feel faint. I remember commiserating with a friend about our shared anxiety diagnoses, and seeing her expression as I explained that I had begun feeling the heart racing, followed by blackouts. She was worried about me and insisted I get those anxious thoughts under control. I was worried too, but what could I do? I was juggling everything as best I could. I was diving into spirituality. I was creating and relaxing when I could, but bills still needed paying, and deadlines at work weren’t going away. I felt stuck.

I went to a new church one Sunday, hoping to make connections and ask for prayer from a young adults group. I openly admitted that I probably needed guidance getting my anxiety under control, because my situation had escalated to regular blackouts (seemingly) due to stress. Across the room from me there was an older woman; she had a fun, spunky style which caught my eye. When I finished speaking she immediately chimed in that she felt prompted to give me her business card. She was a cardiologist and she liked taking on “Dr. House style” cases, and she would love to help me free of charge. I was speechless – so was everyone else in the room.

In my first appointment we did tons of paperwork and medical history, EKG and an echocardiogram to look at my heart. The EKG alerted her to how my body’s blood pressure adjusted to supine, sitting and standing positions (hint: I adjusted poorly), and the echo showed that I have a minor heart defect called mitral valve prolapse. This partially explained my spontaneously racing heart, which was a relief. It was a relief to know I wasn’t just the world’s worst anxiety patient… but it did leave us both asking more questions. She issued me a heart monitor for 30 days and we waited.

It didn’t take long for data to begin rolling in: I experienced three strong arrhythmias while wearing the monitor. Two of these were while I was at work, just walking around (not emotionally stressed or heavy lifting) and the third was while I was eating dinner, watching “Smallville.” It was at that point that my doctor called me, asking me to meet her at the hospital immediately for a stress test. We needed to rule out a stress-related disorder, and I passed.

The next action step was to issue a tilt test, which I failed miserably (fainting even before the full dose of medication was administered). This helped rule things out, but it hadn’t ruled things in yet, so I began Googling.

I don’t generally encourage people to use “Dr. Google,” but in my case (with the wealth of lab work and testing we had already done), Google was incredibly accurate with a potential diagnosis: dysautonomia. Dysautonomia is a dysregulation of the autonomic nervous system. That means unpredictable functioning of one’s automatic, behind-the-scenes functions – like heart rate, blood pressure, digestion, bladder function, sweating and even lung function. Since the autonomic nervous system controls numerous systems in the body, it could basically link all of my long-standing “health quirks” under one umbrella diagnosis. My mind was blown, so I contacted my doctor: “Could it be?” She shouted, “Yes! That’s what causes your syncope!”

So something super cool came from this, because once I stopped seeing these symptoms through a lens of “out of control anxiety” and saw them for what they truly were, my quality of life improved. Like the idea of the chicken and the egg, which came first? Turns out I would begin feeling the heart racing and lightheadedness and it made my thoughts fuzzy and scattered, leading to anxiety about keeping my life together. When I stopped falling down the rabbit hole, because I understood what was happening in my body, my mental health improved dramatically.

To this day I experience lightheadedness, blackouts and fainting, among other things… but I know to pause, or slow down, instead of race to catch all of the plates before they fall. This journey of misdiagnosis taught me a lot about self-awareness and emotional intelligence, which ultimately helped me find my calling as a writer and advocate. There are hundreds of doors out there to find answers for your situation, you need only begin opening them.

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Getty Image by Zinkevych

Originally published: February 12, 2018
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