November 1, 2017
Five years ago, Kevin Perry, 57, went on a mountain bike ride, a hobby he’d had for years. It wasn’t unusual for him to get some periodic soreness — a consequence, he reasoned, of being a middle-aged athlete.
But the lower-back pain he felt after this ride was unlike any he’d ever had before. Nothing improved it, and it worsened over time to the point where Perry could barely stand up, let alone ride his bike. He also felt chronically exhausted.
Over the next three years, he visited a total of nine different specialists but did not receive a helpful diagnosis or treatment. Eventually, he met with Johns Hopkins neuromuscular medicine specialist Tae Chung, who diagnosed him with postural orthostatic tachycardia syndrome (POTS).
POTS is a condition in which a standing position triggers an increase in heart rate of at least 30 beats per minute, or more for children. Although everyone experiences a small heart rate increase upon standing, such a large jump is thought to stem from a miscommunication between the autonomic nervous system and the heart.
Studies estimate that POTS affects between 0.5 million to 3 million individuals in the U.S., although Chung — one of the few doctors treating adult patients with POTS in the country — says this number is probably low. “Some patients diagnosed with chronic fatigue, fibromyalgia or who struggle with no diagnosis probably have this condition,” he says.
Chung explains that POTS symptoms include extreme fatigue, chronic pain, headaches, a rapid heartbeat and an inability to concentrate, or “brain fog”— problems that patients and practitioners often attribute to other causes. To make an accurate diagnosis, he typically performs a physical exam and blood work to rule out other causes, as well as a tilt table test, the gold standard for diagnosing POTS. As patients transition from a prone to upright position on the table, those with POTS experience dramatic increases in heart rate. Many faint, like Perry did.
The most effective treatments for this condition are relatively simple, Chung says. A majority of patients experience significant improvement by drinking large amounts of water — he recommends a gallon a day for adults — and increasing their daily salt intake. Both, Chung explains, help retain fluids to increase blood volume, which helps fill blood vessels and ensures that the heart receives an adequate amount of blood even during upright posture.
Most patients also start graded exercise, a program in which physical activity starts gently and progresses in intensity over weeks or months, gradually retraining the autonomous nervous system to allow greater exercise capacity. Additionally, some benefit from pharmacological therapy to increase blood volume, interfere with the release of epinephrine and norepinephrine or improve vasoconstriction.
After a few months on a water, salt and exercise regimen, Perry was on the road to recovery. He recently completed his first mountain bike race in years.
“It’s amazing,” he says. “After three years of just going downhill, I’m getting my life back.”