Postural Orthostatic Tachycardia Syndrome (POTS): An Underdiagnosed Condition That Doctors Said Was All in Her Head

About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common than Parkinson’s and multiple sclerosis. Those statistics were of no comfort to POTS patient Balqis Heggie.

In a recent online article for Malaysian-based MakChic, Balqis writes about her six-year quest to find out what was causing her illness. The average diagnostic delay for POTS is four years.

It was also not comforting to be told by a doctor that her illness was a product of her imagination.

The Onset of Her Illness

At age nineteen, Balqis was a student at the London School of Economics. She had been attending a concert in Leicester Square. At the end of the show when she rose to leave she fainted and was taken to the local hospital’s emergency unit by paramedics.

The attending doctor at the hospital performed an electrocardiogram (ECG) after which he gave Balqis the alarming news that her condition could be fatal.

After ten days at the hospital, and as Balqis says, many invasive tests, the doctors were unable to come up with a diagnosis. She was told only that their initial concern about a fatal condition was no longer applicable.

Balqis refers to the hospital stay as just the start of her journey.

Finally, the Diagnosis

Balqis does not give details of how or where the final diagnosis took place. She just refers to “many invasive medical tests” and her relief in finding the “actual diagnosis” of POTS.

After briefly celebrating the findings, Balqis realized that there is currently no cure for POTS.

About POTS

The average person is able to stand up quickly with just a slight increase in heart rate. A normal heart rate indicates proper blood flow to the brain and heart.

When someone with POTS attempts to rise to a standing position, an insufficient supply of blood flows to the heart. This is called orthostatic intolerance.

The list of possible symptoms is long and includes heart palpitations, fainting, headaches, weakness and fatigue, and blurred vision. Digestive and sleep issues are common.

About twenty-five percent of patients have such debilitating symptoms that they are not able to work or attend school.

To date, there is no cure. No medication has been approved for POTS by a health authority anywhere in the world. There may be unapproved medications being prescribed in an off-label circumstance.

Balqis considers herself lucky. Other than a few days that she terms “bad days”, her condition has become manageable. By sheer determination, Balqis was able to graduate from the University and to work without taking too many days off due to her illness.

Until 2016

Balqis’ worst flareup occurred in 2016 when it was clear that the medication she had been taking was no longer effective. She had no choice but to take extended time off until she recovered. Balqis was and still is grateful for a very compassionate employer.

Determined to get better in time for her upcoming wedding, Balqis changed her diet and also followed an exercise regimen developed for people with POTS. The flareup was so severe that many days she was unable to follow the exercise protocol.

Somehow, after three agonizing months, she managed to (in her words) feel like a normal person again.

With Help From A Patient Advocacy Group

Balqis attributes much of her determination and recovery to the Dysautonomia International Organization. The term dysautonomia refers to autonomic nervous system diseases.

Balqis is only one of three recognized POTS patients in Malaysia. She believes it is vitally important to raise awareness of the disease. She began with Dysautonomia Awareness Month in October and the color turquoise as its theme.  The spire, Menara Kuala Lumpur, the fourth-highest telecommunications tower in the world, will feature turquoise lights for a day as part of the program.

Prompted by her own experiences, Balqis is trying to reach doctors nationwide and suggesting to patients that they should advocate for themselves. That would include suggesting medication and tests.

A New Life

Balqis reports having a normal pregnancy and a healthy baby boy. Again she feels lucky that her symptoms have remained at a manageable level.

The new mother admits that there is always a reminder that her symptoms can flare-up. She feels stronger now and believes that she can cope with any situation just as she did before.

For more information about POTS or dysautonomia please visit www.dysautonomiainternational.org, a worldwide patient advocacy organization.

 


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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