What’s Happening to Me?
Find out about a little-known disorder that’s affecting teens
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Diane Damskey, left, helps her daughter, Katya, deal with her daily regimen of medications. Photo by Michael Ventura.
Some high school seniors choose an easier course load after a grueling junior year, but Katya Damskey is taking three AP classes at Walt Whitman, plus playing in the band and swimming competitively for the Bethesda school and a club team.
She often makes it through her packed day just fine. But other times she’s sitting in her second-period class when her mind suddenly goes blank. She knows that if she puts her head down on her desk, she’ll be asleep in seconds. It might happen twice in one week.
On those days, Katya heads to the school nurse’s office to call her mother for a ride home. Then she crashes into a deep sleep that may last four hours, and when she wakes up she feels much better. The next day, if she’s up to it, she heads back to school not knowing what the day will bring.
Even though Katya now knows why she often suffers from these bouts of crushing fatigue, she still doesn’t understand how her body can suddenly betray her. “Sometimes it just hits me,” the 18-year-old Bethesda resident says. “I’m like, I was fine this morning. What happened?”
Katya is among a number of local teens who have been diagnosed in recent years with postural orthostatic tachycardia syndrome (POTS), an illness that medical experts say affects one in 100 teenagers, predominantly girls. The syndrome is a form of dysautonomia, an umbrella term covering illnesses caused by the malfunctioning of the body’s autonomic nervous system. In POTS patients, the nervous system sends the wrong signals, causing blood vessels to not constrict enough. That significantly reduces the volume of blood that returns to the heart when a person stands up after lying down, according to the National Institutes of Health.
The lack of blood flow causes the heart to beat abnormally fast—increasing 30 to 50 beats per minute—which can make a person feel faint, dizzy and nauseous. People afflicted with POTS also often experience other symptoms that can range from mild to debilitating, including chronic fatigue, headaches, anxiety and depression, and digestive problems.
Though awareness about POTS has been growing, the syndrome is still not widely recognized by doctors, leading to misdiagnoses and despair as families spend months and even years visiting specialists in a search for answers. Some teens are told by doctors who don’t know about POTS that their feelings of fatigue, anxiety and depression are no different than those suffered by most of their sleep-deprived peers. “It’s the most common illness that nobody has ever heard of,” says Ellen Kessler, a Potomac mother of two college-age children who have been living with POTS since adolescence. Kessler is a co-founder of Dysautonomia International, a nonprofit dedicated to raising awareness and money for research about dysautonomia. “A lot of these teens are told, ‘It’s all in your head.’”
Dr. Hasan Abdallah, a pediatric cardiologist who has been researching POTS since the early 1990s and diagnosed Katya, finds it disheartening that the symptoms experienced by his adolescent patients are often dismissed by other doctors. “How does it feel when we are at our most sincere, trying to project to somebody what we feel, and the other person tells us, ‘No, I don’t believe you.’ And now you go to another person and get another diagnosis of ‘I don’t believe you,’ ” says Abdallah, director of The Children’s Heart Institute in Herndon, Virginia, where his patients include teens from Bethesda and Rockville. “What does that do to the psyche of a 16-year-old girl?”
Nobody knows what triggers POTS, although research has shown that some patients began exhibiting symptoms after contracting viruses such as Epstein-Barr, which causes mononucleosis, or suffering a concussion. What Abdallah and other experts have found is that something has affected the nerves that signal blood vessels, and that POTS patients sometimes have other underlying medical conditions. The actual culprit remains a mystery. “Is it a virus making that circuitry impaired? Is it an antibody? Is it structural damage?” Abdallah says. “We have not put our hands strongly on anything. But most of these patients, their illness is preceded by a [viral] infection.”
Abdallah says several factors probably have contributed to the growing prevalence of the syndrome, including increasingly sedentary lifestyles, additives in food, the expanded use of antibiotics and the rise of autoimmune diseases. Though Abdallah says he and others studying the syndrome initially had “a hard time convincing people” that POTS existed, attitudes have begun to change over the last five years. “People have accepted this condition as real, and we have started to see more research, more medical students knowing about it,” he says.
There is no cure for POTS, although Abdallah says about 60 percent of his institute’s adolescent patients outgrow it. Patients manage the condition with medications and lifestyle changes, including an increased consumption of salt and fluids to boost blood volume, and regular exercise, which helps “retrain the autonomic nervous system to regulate blood flow correctly,” according to the Mayo Clinic website.
Katya, who was adopted by her mother from Belarus when she was 20 months old, was dealing with problems with her adrenal glands and Lyme disease when she was diagnosed with POTS in February 2016. Looking back, she and her mom, Diane Damskey, now realize that there were signs that something was wrong while she was growing up. Katya remembers back to fourth grade, when her eyes would “go black” when she got up in the morning. The pediatrician said the sensation was probably related to blood pressure and “that was it. No ‘take her to a cardiologist’ or this or that, and so I didn’t do anything,” Damskey says.
Katya is able to bend her body in ways others can’t. She can “shut the refrigerator using just her shoulder blade,” according to her mom. Such hypermobility can be the hallmark of a connective tissue disorder called Ehlers-Danlos syndrome that causes muscles to be flabby and veins to be stretchy and unable to constrict properly. People with the syndrome have a higher chance of developing POTS.