By the time patients with postural orthostatic tachycardia syndrome (POTS) meet Tae Chung, director of Johns Hopkins’ POTS program, many have reached the end of an arduous journey. With a mysterious collection of symptoms — including extreme fatigue, chronic pain, headaches, a rapid heartbeat and an inability to concentrate — people often see specialist after specialist to find an answer, obtaining none.

“It takes dedicated expertise to understand, diagnose and treat POTS,” says Chung, a neuromuscular medicine specialist. “We are one of the few places worldwide that offers long-term care for these patients.”

Since Chung launched the POTS program in 2017, he and his team have helped thousands of patients alleviate their symptoms. Following treatment, they are often able to work, spend meaningful time with their families and restart hobbies that have been on pause for months or years. None of this would be possible without the approach of the care team’s experts in rheumatology, cardiology, neurology, ophthalmology, gastroenterology and other disciplines — all of whom collaborate to treat the vast array of symptoms that POTS can cause.

During visits to Chung’s clinic, he confirms patients’ diagnosis by taking a thorough medical history, performing blood work and giving them a physical exam, which often includes a tilt-table test. If their heart rate increases more than 30 points during the transition from horizontal to vertical (40 points for pediatric patients), a POTS diagnosis is likely. Chung says that this symptom is thought to stem from a miscommunication between the autonomic nervous system and the heart.

Although the condition’s incidence and prevalence are unknown due to a lack of research, some data and anecdotal evidence suggest that POTS numbers have increased since the COVID-19 pandemic — with a notable increase in patients developing acute POTS symptoms in the months following their COVID infection. These findings add evidence that for some people, POTS is autoimmune.

Because inadequate blood circulation is thought to cause many of POTS’ other symptoms, most patients receive therapy to increase blood volumes — Chung recommends optimizing hydration and salt intake. Most patients also do graded aerobic exercise, which means they increase exertion over time to retrain the autonomic nervous system to allow greater exercise capacity.

Although no pharmaceutical treatment is approved for POTS, patients often benefit from drugs that increase blood volume or improve vasoconstriction, among others. Because of the syndrome’s tie to autoimmunity, clinical trials at Johns Hopkins and elsewhere are testing the ability of immune-modulating drugs to control POTS. Chung and his colleagues also run a patient registry and biorepository, both of which could eventually shed light on the condition and identify biomarkers and new therapies.

The POTS program is based in the Department of Physical Medicine and Rehabilitation, but POTS’ diverse symptoms, which sometimes affect the heart, eyes or gastrointestinal tract, can necessitate referral to experts throughout Johns Hopkins who are familiar with the syndrome, Chung says. He and other clinicians in the program, including four physicians and two nurse practitioners, manage patients’ long-term follow-up care.

“The 1,600 or so patients we saw this year came from 41 states and several foreign countries,” Chung says. “Our goal is to serve as their medical home, helping them gradually improve their function and get back to their lives.”

Visit the POTS program website for more information. Call 443-997-5476 to refer a patient or make an appointment.