Spotting the Invisible – My Story

It only takes an instant for your life to change. But, with POTS, it takes weeks, months, years to know that the change is real.

My story starts off like many others. I was a happy, active, and normal girl. I tumbled across the floor, while family cheered my gymnastics team on. I went off to college, a bright-eyed, 18 year old, with honors and AP courses behind her. The only demon that had come my way was labeled as anxiety, this intense dread that would overtake my body, threatening to strike me down if I moved too fast. Or so I thought.

The years came and went smoothly, as I navigated college like anyone else. And then  I began experiencing intense pain in my abdomen at 20 years old. A pain that felt like a knife twisting itself into my gut, keeling me over. No biggie…maybe I’m lactose intolerant. So I changed my diet.

Nope. Not it. Ahhh…gluten must be the culprit. So I kissed my buns goodbye and faked a smile as everyone around me gobbled up buttery bread, laced with garlic at dinners. Yet, that wasn’t it either.

So I began to get blood tests, urine tests, and tests where the sun don’t shine. Nothing.

As the frost rolled in, so did a new symptom…a much scarier one. I was with my brother Daniel one night, and as I stood I started to feel very sick. I sprinted to the bathroom, because I knew my dinner didn’t want to stay put.

I never made it there.

It began with a few black spots before the blackness enveloped my vision. Think of the last time you stood up too fast out of a hot tub. Like that, but crank up the intensity a few notches.

I woke up confused on the ground, my brother shaking my lifeless body, and a dull throbbing in the back of my head. At first I thought I went to bed on the bathroom floor, but Daniel would confirm it was a sudden thud, leaving me with a concussion and a new fear of blackness.

Within a few days, everything returned to normal.

And it stayed normal for another 5 months. As the flowers began to bloom, and the sun’s heat beat down, I started feeling sick. Really sick.

I would get short of breath and see the world spin. The pattering in my chest increased, until it felt like it would give out. I went to a North Shore Medical Center, only to be told by the doctor I was completely healthy. My EKG was healthy, my vitals (sitting) were normal. It was all in my head; most likely anxiety. Crazy doesn’t even begin to cover how I felt.

Except, in a few days, I was due to board a plane and jet off to Italy for a summer internship. And I was damned if I wouldn’t go. Miracles can happen and 2 days before I departed, my symptoms vanished. And I had a blissful 7 weeks, devouring carbs and speaking the most romantic language in the world.

And then I went to Spain.

Everything was normal. Except, I was running on too little sleep and too much Red Bull. And at 4 AM, walking Las Ramblas with a friend, a man stopped us to ask directions.Two words in, my world came crashing down. I couldn’t see straight, couldn’t walk. I knew (well, thought) in that moment that I was dying. Sleep barely came and went and my friend wanted to explore. I feebly made my way around the old city, clutching her arm to even stumble down the street. By the time we boarded the plane that night, my energy had faded and I felt every organ in my body start to shut down.

The Italian hospitals had little to offer, other than they thought there was a tumor in my brain. Days would come and go and I would stay in bed, trembling if I dared stand up. Migraines raged through my head, sending piercing icepicks behind my eyes.

I returned home to the US, and instantly went to a neurologist. An MRI and MRA later and fortunately, no tumor was found. I looked like the picture perfect vision of health. Yet, that’s the farthest thing I felt. I spent my days curled up with deafening migraines, cramps, bowel issues, frequent urination (talking like 20x a day!), dizziness, confusion, vomiting and fatigue, so crippling, no amount of sleep would suffice. I could barely return to school, skipping my classes unless they were necessary.

I began to see a cardiologist and him and my mother, a pediatrician herself, unearthed a chronic illness that sounded oddly similar to the symptoms I was experiencing: POTS, short for Postural Orthostatic Tachycardia Syndrome.

In short, POTS is a form of Dysautonomia where the autonomic nervous system, the unconscious processing (such as heart rate, breathing, urination, digestion), goes all out of whack. The trademark symptom: a heart rate that rises 30 BPM or more when standing. Before even getting tested, they put me on a medication called Fludrocortisone to raise my blood volume and force me to hold onto fluids.

I went in to get a Tilt Table test. It was a good day, I didn’t faint. I barely even felt symptomatic. Yet, as I was lifted up, I felt a heat creep into my cheeks and that all too familiar sensation of the world spinning on its side. Unlike the typical POTS patient, my heart rate didn’t rise right away.

Yet, rose it did. I began with a resting heart rate in the low 50s. By the time they brought me down, my heart was pushing a rapid 130, almost 80 beats per minute faster, just from being upright.

I had it. A diagnosis. Finally. It wasn’t anxiety. It wasn’t a tumor. And it damn sure wasn’t all in my head. As relief washed over me, a new feeling came on. Fear. What does this mean? Why did this happen? Will I be like this forever

Two years later, I still suffer pretty brutal symptoms, on and off throughout the year. But doctors are continuing to learn more about this chronic and very tiring illness. And through more and more testing, I’m continuing to learn more about myself, and why this is happening.