Calgarian shares her story about autonomic disorder

Postural orthostatic tachycardia syndrome (POTS) is an autonomic disorder that impacts up to 390,000 Canadians, causing the heart rates of patients to rise at least 30 beats per minute when standing.

The most common age of onset of POTS is 14. It causes debilitating symptoms like light-headedness, nausea, cognitive difficulties, fatigue and even fainting. 

Calgary’s Wynona Marleau was diagnosed with POTS at age 37 after suffering from sepsis following surgery. However, she has had symptoms – particularly fainting – for most of her life. 

“As early as Grade 2, I would struggle while giving presentations,” she says. “My face would go red, my heart would beat fast, then I would start shaking, and I would have to sit down.” 

Those symptoms were attributed to anxiety by the doctors she saw throughout her adolescence.

By the time she was a teenager, Marleau began fainting during exercise, and her heart rate would climb to 200 beats per minute. Doctors brushed off her episodes, calling her “a fainter,” and the young woman just assumed she wasn’t fit because of her rapid heart rate – despite working out several hours a week and eventually teaching yoga and fitness classes. 

What Marleau knows now is as she stood her body was unable to respond properly to gravity, causing her blood to pool and her heart to beat rapidly to compensate.  

At her worst Marleau says she fainted daily – while walking, climbing stairs or even standing up too quickly. 

“It was really hard, my quality of life was awful,” she says. 

Eventually, Marleau was referred to Dr. Satish Raj, MD, a world-renowned POTS expert and member of the Libin Cardiovascular Institute, who diagnosed her and started treatment. 

Today, Marleau finds regular exercise and other non-pharmaceutical treatments – like wearing compression garments and increasing sodium and fluid intake – to be extremely beneficial. Still, most of her life revolves around POTS. She works hard to manage her symptoms and dedicates her free time moderating POTS support groups on Facebook and educating herself by attending conferences and reading the latest science in peer-reviewed journals. 

Helping others has been fulfilling. 

“A lot of my role is sharing accurate information, connecting patients with resources, and supporting people with POTS across Canada and around the world,” says Marleau. “It’s great to connect and support others with this disorder.” 

When asked what she wants people to know about POTS, Marleau says awareness of the condition is critical. That’s because many Canadians—and even physicians—are unfamiliar with the disorder. This lack of awareness often leads to diagnostic delays. In fact, it can take up to six years to receive a diagnosis.  

Marleau says it’s also important to understand that while there is no cure, many interventions can help individuals with POTS lead meaningful lives. 

“It’s challenging, but there is hope,” she says. “We can better manage our symptoms with lifestyle changes and medications.” 

Marleau notes that emotional support is also available. She urges anyone suffering from POTS to reach out to a trusted counsellor, friend or family member. She also invites individuals to join the following support groups on Facebook: 

• POTS (Postural Orthostatic Tachycardia Syndrome) Support Group
• POTS - Canada
• Exercising with POTS Dysautonomia
• Dysautonomia International- Alberta Support Group

For more information about POTS and other autonomic disorders, visit Dysautonomia International.