Myth: POTS is rare.

Fact: POTS is more common than you might think! According to studies conducted between 2019 to 2020, it was estimated that 500,000 to 3,000,000 individuals just in America alone had POTS (Raj et al., 2021). This number is much higher now given the incidence of post-COVID-19 autonomic disorders, many in the form of POTS, seen in some individuals with Long COVID (Blitshteyn et al., 2021). See our COVID-19 Infections section to learn more.

Myth: POTS is caused by anxiety.

Fact: Although POTS itself can be frightening and lead some to understandably feel anxious or appear anxious when experiencing their symptoms, researchers have found that individuals with POTS do not have excess cognitive anxiety (Raj et al., 2009).

Myth: POTS only impacts individuals who are young and who had an assigned female gender at birth.

Fact: Although 80-85% of individuals with POTS had an assigned female gender at birth and are between the ages of 13 to 50, that still leaves out 15-20% of individuals with POTS (Garland et al., 2007)! It is important for us to recognize all individuals living with this diagnosis as well, who may have had an assigned male gender at birth, or who may have developed symptoms when older. It is important for us to be inclusive of everyone living with these conditions!

Myth: Living with POTS means you only have a high heart rate sometimes.

Fact: POTS is a form of autonomic dysfunction (also known as dysautonomia), which can impact many different parts of the body and organ systems. See our Dysautonomia section to learn more. Because of the intricacy of the autonomic nervous system and its responsibility for controlling so many involuntary functions throughout our body, individuals with POTS can experience a number of symptoms. The symptoms experienced can vary from person to person, but common symptoms include gastrointestinal symptoms (nausea, diarrhea, constipation, vomiting, altered gastric motility), cardiac symptoms, blood pooling, lightheadedness, abnormal sweating, unexplained fevers, exercise intolerance, dry mouth, brain fog, fatigue, numbness or tingling in limbs, migraine headaches, and urinary symptoms such as urgency or increased frequency (Raj et al., 2022; Raj, 2013). This does not include all symptoms experienced by individuals with POTS. For a longer list of symptoms, see our POTS Symptoms section.

Myth: In order to have a diagnosis of POTS, your blood pressure has to drop when standing.

Fact: A diagnosis of POTS is dependent on meeting certain heart rate criteria, and a drop in blood pressure is actually a separate diagnosis of orthostatic hypotension (Raj et al., 2022). Looking for a drop in blood pressure upon standing is not a part of the POTS diagnostic criteria. See our What is POTS section to review the diagnostic criteria.

Myth: You need to faint in order to have POTS.

Fact: It is actually less common to faint with POTS and more common to experience lightheadedness and/or presyncope (Raj, 2013). Individuals with POTS can certainly faint, but that is not a part of the diagnostic criteria.

Myth: If you have POTS, all you need to do is drink more and eat salty snacks to feel better.

Fact: POTS is a form of autonomic dysfunction (dysautonomia) that can vary in severity with symptoms that can impact many parts of the body. It is complex, can be quite debilitating, and thriving with this illness can require a multi-disciplinary approach. Although increasing fluids and salt intake can be beneficial, individualized care is essential, and thriving with POTS for many is more complicated than merely increasing salt and fluid intake. Physical therapy, occupational therapy, other non-pharmacologic methods, and pharmacologic methods may all be needed. Given that there are different forms of POTS, and some individuals with POTS may struggle to consume large amounts of fluids given their gastrointestinal symptoms, we must recognize the complexity and the need for a multidisciplinary approach. Minimizing the syndrome can be very damaging for individuals with POTS.

Myth: Only POTS specialists can diagnose POTS.

Fact: Primary care providers and other providers who are not specifically POTS specialists can diagnose individuals with POTS using the “Poor Man’s Tilt Table Test” and following the guidelines for other diagnostic criteria (Raj et al., 2022). We need more primary care providers to diagnose and be able to recognize POTS given the incidence post-COVID infections. To read more about this and the diagnostic criteria, see our What Is POTS section, and to read more about the relationship between POTS and COVID-19 infections, see our COVID-19 Infections section.

Sources:

Blitshteyn, S., & Whitelaw, S. (2021). Postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders after COVID-19 infection: A case series of 20 patients. Immunologic Research, 69(2), 205–211. https://doi.org/10.1007/s12026-021-09185-5

Garland, E. M., Raj, S. R., Black, B. K., Harris, P. A., & Robertson, D. (2007). The hemodynamic and neurohumoral phenotype of postural tachycardia syndrome. Neurology, 69(8), 790–798. https://doi.org/10.1212/01.wnl.0000267663.05398.40

Raj, S. R., Fedorowski, A., & Sheldon, R. S. (2022). Diagnosis and management of postural orthostatic tachycardia syndrome. Canadian Medical Association Journal, 194(10). https://doi.org/10.1503/cmaj.211373

Raj, S. R. (2013). Postural tachycardia syndrome (POTS). Circulation, 127(23), 2336–2342. https://doi.org/10.1161/circulationaha.112.144501

Raj, V., et al. (2009). Psychiatric profile and attention deficits in postural tachycardia syndrome. Journal of Neurology, Neurosurgery & Psychiatry, 80(3), 339–344. https://doi.org/10.1136/jnnp.2008.144360

Raj, S. R., Bourne, K. M., Stiles, L. E., Miglis, M. G., Cortez, M. M., Miller, A. J., Freeman, R., Biaggioni, I., Rowe, P. C., Sheldon, R. S., Shibao, C. A., Diedrich, A., Systrom, D. M., Cook, G. A., Doherty, T. A., Abdallah, H. I., Grubb, B. P., Fedorowski, A., Stewart, J. M., … Vernino, S. (2021). Postural orthostatic tachycardia syndrome (POTS): Priorities for Pots Care and research from a 2019 National Institutes of Health Expert Consensus Meeting – Part 2. Autonomic Neuroscience, 235, 102836. https://doi.org/10.1016/j.autneu.2021.102836

In addition to these POTS myths, we are working on developing pages for common myths specific to other conditions commonly seen within our community. We will make an announcement when these pages are available!