Managing PoTS: Tips for Living with the Chronic Illness Affecting Millions

Newsweek

11-05-2025

Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources.
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Imagine standing up and your heart suddenly races as if you've sprinted a mile—except you haven't budged. For millions of Americans with Postural Orthostatic Tachycardia Syndrome (PoTS), this dizzying, exhausting reality is their daily norm.
Though not fatal, PoTS profoundly disrupts everyday life, causing a spectrum of symptoms—dizziness, near‑fainting, brain fog, palpitations, fatigue, tremors, chest discomfort, headaches, nausea and gastrointestinal distress.
Recent data suggest PoTS is on the rise. "PoTS can be triggered by SARS‑CoV‑2 infection as part of long COVID," said Dr. Svetlana Blitshteyn, professor of neurology at the University at Buffalo. A 2025 study in The American Journal of Medicine found that nearly 80 percent of long‑COVID patients met the diagnostic criteria for PoTS.
"Prior to the pandemic, at least 3 to 5 million people had PoTS, which has likely doubled after the pandemic," Blitshteyn told Newsweek.
"We still don't know exactly how many Americans currently have PoTS, but it is estimated that millions more Americans are now suffering from this disease," added Dr. Brit Adler, a professor of medicine in the division of rheumatology at Johns Hopkins University.
File photo: a doctor checks a patient's heart rate and blood pressure in a clinic.
File photo: a doctor checks a patient's heart rate and blood pressure in a clinic.
Klaus Rose/dpa via AP
What Is PoTS?
PoTS is described as an abnormality in the functioning of the autonomic nervous system, the system controlling breathing, gut function, heart rate, blood pressure and many other bodily functions.
It can also be linked to problems like "low blood volume, vascular dysfunction, or other mechanisms," Adler said, adding that those with hypermobility syndromes like Ehlers-Danlos Syndrome often had the condition as well.
PoTS comes as a result of the autonomic nervous system's "adjustment to being upright not functioning properly," Professor Lesley Kavi, the chairperson of the U.K.-based charity organization PoTS UK, told Newsweek.
As many basic tasks in the day require postural changes and standing, a person with PoTS is constantly being put under strain as they navigate simple tasks. Symptoms tend to lessen when a patient is horizontal, but it can sometimes take a long time for symptoms to ease off once flared.
Things like heat, prolonged standing, dehydration, stress, intensive exercise, viruses, infections, and menstruation can all worsen PoTS symptoms.
Kavi said that major surgery, injuries such as concussion, and exposure to a traumatic event can trigger an onset of PoTS, but she added that there isn't enough data and research yet to be able to determine precisely what mechanisms are going wrong within the body.
Dr. Zachary Spiritos, a specialist in gastroenterology and hepatology at North Carolina's UNC Health, told Newsweek: "Many people may be born with a vulnerability, and then something in the environment - often an infection or injury - triggers the onset of symptoms. It's multifactorial, and the exact blend is different for everyone."
How Common Is PoTS?
Prevalence estimates range widely: the Cleveland Clinic cites 1–3 million U.S. cases, while Dysautonomia International reports 3–6 million.
This variability stems largely from under-recognition—most clinicians seldom consider PoTS during evaluation, according to Spiritos. Women account for approximately 80 percent of cases in the U.S., according to Dysautonomia International, likely due to hormonal influences and autoimmune predisposition.
"This is partly because the X chromosome carries many immune-related genes, and women have two copies, which can lead to more robust, but also more error-prone, immune responses," Spiritos said, "[And] we see anecdotal patterns where estrogen can worsen PoTS symptoms, while testosterone may be protective."
What The Experts Recommend For PoTS Patients
Lesley Kavi from PoTS UK said that avoiding symptom triggers can be a good place to start for managing the condition, although this is very individual. For some, this could include avoiding prolonged standing, dehydrating things like the heat, alcohol, and caffeine, she added.
Increasing fluid intake is essential, Kavi said, adding an adult with PoTS should aim to drink between two to three liters of water a day, or more if they exercise or are in a hot environment.
In order to ensure the water stays in your system, increasing sodium intake is also important, Kavi said. Patients are advised to increase their sodium intake to as much as 10,000-12,000 mg per day, but each patient will respond best to a different amount.
Compression clothing, particularly tights or leggings that cover the abdomen, are helpful in boosting blood circulation too, Kavi said. Typically medical grade compression is required of between 20 to 30 mmHg.
"Exercise can be something that helps the most for some people, but the problem with exercise is that it can make others feel really terrible afterwards, even for a day or two," Kavi added.
Starting "low and slow" is always the way to go, Kavi said, adding that it was important to get expert input. The best forms of exercise to start with are horizontal, she added, pointing to exercise bikes, Pilates, rowing machines, and swimming.
Although, it is always best to get professional support, Blitshteyn said. "While there are no cures, there is treatment to help you improve and function better in your life."
It is also important to remember "you're not alone and PoTS is a real, physiologic disorder," Adler said. "Many people go years without a diagnosis and are often told that their symptoms are from anxiety and it is in their head."
Spiritos said it's a good idea to educate yourself, as "understanding the condition is empowering," and recommended listening to the POTScast and Bendy Bodies podcasts.
"Ultimately, community and knowledge are power, and with the right tools, you can get better," he added.