POTS is a disorder of the nervous system that primarily affects women of childbearing age and causes symptoms such as rapid heartbeat, dizziness, fatigue and nausea when standing up

A Calgary student living with an autonomic disorder that makes her heart beat faster has discovered a finding dispelling long-held myths about how long the condition lasts.

University of Calgary medical student Kate Bourne is the lead author on a new study that dispels the idea that patients living with postural orthostatic tachycardia syndrome (POTS) always recover fully in the long term.

POTS is a disorder of the nervous system that primarily affects women of childbearing age and causes symptoms such as rapid heartbeat, dizziness, fatigue and nausea when standing up.

Bourne was diagnosed with the disorder when she was 24. She first began experiencing symptoms when she was 12.

“I was a very active child,” she said. “I played lots of sports . . . I was always out doing things and was very busy.”

At 12, she fell ill. “I had gastrointestinal symptoms,” she said, as well as fatigue. It got so bad that some days she couldn’t get out of bed.

It took more than a decade for her symptoms to be diagnosed. “One of the challenges I think for me was that I had periods of time where I felt better,” she said. Those periods were always temporary.

The study was published on Tuesday and involves other University of Calgary researchers, including Dr. Satish Raj, a professor with the university’s department of cardiac sciences.

The study involved surveying 44 patients at Vanderbilt University in Nashville, Tenn,, whom clinicians there had been seeing for decades.

“We learned two things. One, almost no one gets totally better,” he said. “But just under half of the patients reported that they were improved than they were when they first presented, I think largely because of treatment.”

The University of Calgary estimates the condition affects up to 450,000 Canadians.

POTS is often treated with medication, lifestyle changes or a combination of both. Lifestyle changes include increasing fluid and salt intake, exercise and sleep adjustments and wearing compression garments, according to Harvard Medical School.

Prior to her diagnosis, living with POTS significantly impacted Bourne’s life. It forced her to do an extra year of high school and eight years to complete her undergraduate degree, she said.

Since being diagnosed and treated, her life has much improved. “I’ve become quite good at noticing my symptoms and I have strategies to get on that right away and not let it get worse,” she said.

Now, at 36 years old, Bourne’s symptoms are well controlled with available treatments. While she still has bad days, she’s got a good hold on managing her condition.

As a medical student, she is pursuing a PhD in POTS with the goal of becoming a clinician or a researcher to help other women and girls with the condition.

Another study she’s involved in explores the employment and economic impacts on those living with the condition.

“It’s just important to share that people may think of POTS and assume it’s just your heart rate going a little too fast when you’re standing, but you’re not really considering the significant impact that it has on that person,” she said.

While the results of this study don’t merit discoveries on a cure, Raj said there is room for more research into the nuances of why the condition affects people differently.

“We need information that we can share with patients. We need better diagnosis. We need more people to specialize in this,” he said.

The university runs a clinic that specializes in autonomic disorders such as POTS. “There are very few like ours across the country and we have long waiting lists,” he said. “I’d love to see that go down.”

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