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When standing up makes you sick

Photographer: Julio Lopez

It was like opening a time capsule when I met up with my college roommate after 35 years. We laughed about our good times together and recalled all the confidence we had about our futures at age twenty. Then the conversation turned to our children, and she told me about her daughter’s long struggle to obtain a diagnosis of postural orthostatic tachycardia syndrome, or POTS.

Once that diagnosis became clear, it is easy to point to a distinguishing symptom. For people with POTS, standing upright triggers a debilitating racing of the heart, but for the 2-3 million people in North America estimated to have the condition, figuring it out is no easy job.

Experts are not sure why, but it is a condition that tends to strike young women, aged 15-35, most often from comfortable, and White families. This fits my roommate’s situation. It may be that POTS could be found in other segments of society, but neither patients nor doctors are making the connection.

The root cause of POTS lies in the body’s remarkable automatic control system (the autonomic nervous system) which manages heart rate, blood pressure, circulation, digestion, and temperature control.

When we stand, gravity pulls blood toward our legs. A healthy nervous system immediately responds. Blood vessels tighten, the heart adjusts, and enough blood continues to reach the brain.

In someone with POTS, that response does not work properly. The body struggles to maintain circulation when upright, and the heart often speeds up dramatically to compensate.

The result can be dizziness, fatigue, weakness, exercise intolerance, difficulty concentrating, and a pounding heartbeat. Some sufferers feel better when they lie down, but not all. When the autonomic nervous system is out of whack, all bets are off.

Historically, and to date, many patients have struggled to find an explanation, because routine heart tests and blood work may appear normal, some are told their symptoms are due to stress or anxiety.

During the American Civil War, physician Jacob Mendes Da Costa described soldiers who suffered from racing hearts, fatigue, chest discomfort, and poor exercise tolerance. The condition became known as soldier’s heart. Although it was not the same diagnosis as POTS, researchers believe these individuals may have had problems involving the autonomic nervous system.

Over the decades, doctors continued to encounter patients who became ill when upright, but it was not until the 1990s that researchers formally described and named POTS.

Scientists now understand that POTS is not one single disease. Different patients may have different underlying causes. In some, nerves that regulate blood vessels may not function properly. In others, there may be abnormalities involving the immune system, blood volume, or the body’s response to infection.

The COVID-19 pandemic brought unprecedented attention to POTS. Some people recovering from COVID developed persistent symptoms including rapid heart rate, dizziness, and exercise intolerance. Researchers began investigating whether viral infections could trigger autonomic disorders in susceptible individuals.

Although POTS is often associated with younger people, it can occur at any age. In older adults, symptoms may be mistaken for medication effects, dehydration, heart problems, or the normal challenges of aging.

For my roommate and her daughter, and like many other families, it was a long and frustrating journey to the diagnosis of POTS. Ultimately, it took a team of specialists at the Mayo Clinic to design and initiate a four-week intensive program of physical, mental, and behavioural changes to daily routines that enabled them to return to normal life.

With better knowledge about what is going on, there comes an appreciation for the extraordinary things the human body does, even when just standing up.

This column offers opinions on health and wellness, not personal medical advice.

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Dr. W. Gifford-Jones, MD is a graduate of the University of Toronto and the Harvard Medical School. He trained in general surgery at Strong Memorial Hospital, University of Rochester, Montreal General Hospital, McGill University and in Gynecology at Harvard. His storied medical career began as a general practitioner, ship’s surgeon, and hotel doctor. For more than 40 years, he specialized in gynecology, devoting his practice to the formative issues of women’s health. In 1975, he launched his weekly medical column that has been published by national and local Canadian and U.S. newspapers. Today, the readership remains over seven million. His advice contains a solid dose of common sense and he never sits on the fence with controversial issues. He is the author of nine books including, “The Healthy Barmaid”, his autobiography “You’re Going To Do What?”, “What I Learned as a Medical Journalist”, and “90+ How I Got There!” Many years ago, he was successful in a fight to legalize heroin to help ease the pain of terminal cancer patients. His foundation at that time donated $500,000 to establish the Gifford-Jones Professorship in Pain Control and Palliative Care at the University of Toronto Medical School. At 93 years of age he rappelled from the top of Toronto’s City Hall (30 stories) to raise funds for children with a life-threatening disease through the Make-a-Wish Foundation.  Diana Gifford-Jones, the daughter of W. Gifford-Jones, MD, Diana has extensive global experience in health and healthcare policy.  Diana is Special Advisor with The Aga Khan University, which operates 2 quaternary care hospitals and numerous secondary hospitals, medical centres, pharmacies, and laboratories in South Asia and Africa.  She worked for ten years in the Human Development sectors at the World Bank, including health policy and economics, nutrition, and population health. For over a decade at The Conference Board of Canada, she managed four health-related executive networks, including the Roundtable on Socio-Economic Determinants of Health, the Centre for Chronic Disease Prevention and Management, the Canadian Centre for Environmental Health, and the Centre for Health System Design and Management. Her master’s degree in public policy at Harvard University’s Kennedy School of Government included coursework at Harvard Medical School.  She is also a graduate of Wellesley College.  She has extensive experience with Canadian universities, including at Carleton University, where she was the Executive Director of the Global Academy. She lived and worked in Japan for four years and speaks Japanese fluently. Diana has the designation as a certified Chartered Director from The Directors College, a joint venture of The Conference Board of Canada and McMaster University.  She has recently published a book on the natural health philosophy of W. Gifford-Jones, called No Nonsense Health – Naturally!

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