Personal Health: POTS affects up to 1 percent of teenagers and causes symptoms including a racing heart, dizziness, extreme fatigue and headaches.
Patrick Fox, now 14, considers himself lucky. It took only a year to find out why he was always tired, his heart raced and he ached all over, why he became overheated easily and had terrible headaches almost every day. Once a happy, active child and good student who enjoyed school, by age 12 he could hardly get out of bed.
Various medical specialists — pediatrician, cardiologist, rheumatologist and geneticist — failed to find a physical cause for his symptoms. Some said he should see a psychiatrist because he was a malingerer, lazy, depressed, manipulative or overly anxious.
Instead, after his racing heart caused chest pains that felt like an impending heart attack, his mother whisked him off to the Mayo Clinic in Rochester, Minn., where in just two hours he learned he had a form of autonomic dysfunction known as POTS, short for postural orthostatic tachycardia syndrome.
It has taken some youngsters with the syndrome as long as a decade to get a proper diagnosis, by which time their teen years are a washout. Patrick, who lives in Columbia, S.C., said he was telling his story in hopes that it would help others with the syndrome, which affects up to 1 percent of teenagers, get to the bottom of their problem more quickly.
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Patrick’s mother, Jacqueline Fox, said physicians needed to be better educated about the disorder so that it is promptly and accurately diagnosed and patients are treated before years of their youth go down the drain. In young people, POTS is almost always eventually outgrown, but proper treatment can give them their lives back in the meantime.
“I can go to school now, which I couldn’t do for a couple of years, and I can play sports,” Patrick said.
Now a high school freshman, he’s in honors classes.
A DISABLING SYNDROME
The autonomic nervous system regulates bodily functions that are not under conscious control, like heartbeat, blood pressure, body temperature, digestion and breathing. Depending on which part of the system malfunctions, the symptoms can be wide-ranging and confusing, as well as debilitating.
In POTS, the dysfunction involves the messages that nerves deliver to blood vessels, telling them when to expand and contract. When you stand up after lying down, blood vessels are supposed to contract so that more blood is pumped to your head. But in POTS, explained Dr. Philip Fischer, a pediatrician at the Mayo Clinic, “blood vessels are too dilated, and the blood puddles in the lower part of the body. When you stand up, not enough blood gets to the brain,” leaving one dizzy and lightheaded.
That causes the heart to race, a condition called tachycardia, as it tries to get more blood to the head.
“These people can’t remain upright,” said Dr. Julian M. Stewart, who studies the disorder at Westchester Medical Center and New York Medical College. “They can experience a 20 percent to 30 percent drop in cerebral blood flow when they try to stand up. This causes cognitive difficulties; they can’t think well on their feet.”
But a racing heart, dizziness and foggy brain are only three of many symptoms of POTS, which can include any or all of the following: fainting, extreme fatigue, headaches, stomach pains, nausea and vomiting, difficulty concentrating, weakness in the legs, unusual feelings of hot or cold, excessive sweating, blue or purple discoloration of the legs or feet and, perhaps as a result of all of the above, feelings of anxiety or depression.
Those at greater risk of the disorder are high-achieving teenagers or adolescents as they enter a growth spurt. Patrick’s problems began as he shot up to 6 feet 2 inches. The disorder is also more likely to occur in people who are very flexible or double-jointed and those with other affected family members.
But even though some people may be genetically predisposed to developing POTS, Fischer said in an interview that an environmental insult seems to trigger its onset — an illness like mononucleosis, flu or a bad cold; an injury; major surgery or trauma; or even weight loss. Fischer said prolonged bed rest often precedes the condition.
Fox said Patrick had had a severe case of the flu before developing symptoms of POTS. At first she thought his persistent fatigue was simply the aftermath of the flu.
POTS is most often diagnosed by having the patient lie on a tilt table. From a prone position, the patient is abruptly raised upright. A heart-rate increase of 30 beats per minute is a classic sign of POTS, although further testing is needed to rule out other conditions.
Although there is no cure for POTS, measures to counteract its effects can bring relief until the syndrome abates on its own. Most important are to increase blood volume and reverse the loss of energy and strength. The Mayo Clinic outlined the following measures in a booklet for teenagers with autonomic dysfunction.
Add lots of salt to your foods, consuming more than five grams of salt a day. Salty blood holds more water. Patrick carries foods like beef jerky and drinks triple-concentrated bouillon.
Drink three to four liters of fluids every day, preferably noncaffeinated beverages like water, sports drinks, milk, juices and soups. Having colorless urine is the goal.
Do both aerobic and strengthening exercises daily, building up gradually. Strong muscles enhance blood flow. Fox, who makes sure Patrick lifts weights and swims regularly, said he calls POTS “an ironic disease” because “you have to do the opposite of what your body wants you to do,” which is rest.
Although not always needed, certain drugs can help control symptoms, among them beta-blockers, which lower the heart rate; midodrine, which constricts outlying blood vessels; fludrocortisone, which increases salt retention and blood volume; and antidepressants that raise serotonin levels in the brain.
Get at least nine hours of sleep a night and avoid naps.
Go, or go back, to school. Maintaining normal social contact is important to well-being.
“Don’t let the disease rule you,” Fischer emphasized. “The messages of how you feel are not reliable. You have to make your mind rule your body.”
Patrick was helped by acupuncture treatments that normalize heart rate, presumably by improving blood flow to the brain. Stewart, whose research is supported by the National Institutes of Health, said he would like to test the effects of acupuncture in a controlled clinical trial.