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.

Katya, who moved to Maryland from Florida the summer before fourth grade, has always gravitated toward swimming. But in eighth and ninth grade she started suffering from muscle pain and fatigue. She had trouble making it through early-morning practices. Her club team coach suggested that she swim at a less competitive level that wouldn’t require as much intense practice, but the fatigue and pain persisted even though she began swimming less. “I remember in ninth grade, sitting in class and my legs wouldn’t stop hurting,” she says. She also would feel winded when climbing the stairs in school, and playing the alto sax in band class caused her muscles to hurt.

Like many high school students, Katya wasn’t getting enough sleep, averaging about seven hours a night. But the lack of sleep—experts say teens need nine to 10 hours—couldn’t account for the leg pain and bouts of feeling faint that plagued Katya, often rearing up during seasonal temperature changes. The summer after her freshman year, Katya became more fatigued and was often sleeping 13 hours a day, including falling asleep between heats during meets in her summer swim league. “People just assumed I did not get a lot of sleep because I was always tired,” she says. A test for Lyme disease came back positive, and Katya began taking antibiotics, which didn’t seem to help.

Then, one day in January 2016, the teen’s mother was out running errands in Rockville when she got a call from her daughter, who was at home. “Mom, I fainted and I’m all bloody,” she said. She told her mom that she had cut her nose and chin when she fell.

Katya was scheduled to see the integrative medicine doctor who was treating her for Lyme disease two weeks later. At that appointment, the doctor suggested that she had POTS and recommended that she see Abdallah for an official diagnosis. At Abdallah’s office, Katya underwent the classic test for the syndrome: She was strapped to a table that was then moved from horizontal to vertical. During the tilt table test, a patient’s heart rate and blood pressure are measured before and after the change in position. Abdallah diagnosed Katya with POTS, as well as Ehlers-Danlos syndrome, even though her heart rate increase was just under the threshold for POTS because of the medication she was taking to help her adrenal glands function.

Diane Damskey can tell when POTS is most affecting her daughter because that’s when her grades drop. Temperature changes can affect her blood flow, so Katya can find it difficult to think when the weather turns colder, like it did last spring during the two weeks that AP exams were being administered. “She couldn’t finish her AP bio test. She just couldn’t think,” Damskey says. So-called brain fog is a common symptom of POTS, says Abdallah, who has seen patients whose memory and cognitive skills are so impaired that “they really look like young people with Alzheimer’s.”

Before her teachers learned of her diagnosis, Katya had to deal with their skepticism when she wasn’t feeling well. “In the beginning, her teachers weren’t very sympathetic, her swim coach at first was just mad at her,” Damskey says. “POTS kids just get screwed because they don’t have a broken leg, they don’t have cancer. They look fine. It is invisible. You have no idea that they are suffering.”

Katya now takes a daily regimen of medications to stimulate the constriction of her blood vessels and treat her other medical conditions. She tries to get at least eight hours of sleep each night, swims when she can, drinks plenty of fluids and consumes lots of salt. The regimen seems to be working, and Katya has been feeling much better this school year. Still, Damskey has to wake up her daughter on school days so she can take her medication, which helps get her body moving. Then Damskey comes back a half hour later to wake Katya again. “Mornings are tough,” Damskey says.

Because the symptoms of POTS can vary in degree and also can be attributed to a number of other conditions, diagnosing the syndrome can be difficult. “Like any condition, to diagnose, you have to have some sort of objective measure, whether that test is a blood test, which we don’t have for POTS, or there are findings that are not just explained by psychological reasons,” Abdallah says. The dramatic change in heart rate upon standing is a sign that cannot be ignored. “Normally, our heart rate from laying down to standing should increase by 10 to 15 beats. So if it goes up then 30 or 40 [beats], you know there is something wrong.”

Mildred Devereux, a college sophomore who lives in Silver Spring, was diagnosed with POTS three years ago, six months after she got a bad cold the summer before her junior year at Montgomery Blair High School. Her parents noticed that she didn’t seem to fully recover and was more tired than usual. A skilled softball player, Mildred was playing on a travel team, and her coaches noticed that she wasn’t tolerating the heat well and that her level of play had slipped. Then, after heading back to classes that fall, she started missing school because of fatigue and dizziness; she couldn’t get herself out of bed in the morning. A similar bout of symptoms had caused her to miss two weeks of middle school in eighth grade.

College student Mildred Devereux of Silver Spring maintains a healthy lifestyle and takes medication to alleviate the symptoms of POTS. Photo by Mike Morgan.

Over the next few months, Mildred saw physicians who specialized in allergies and infectious diseases, but no one could figure out what was wrong with her, though an infectious disease doctor prescribed salt pills to help with the dizziness. Finally, an endocrinologist who examined her at Children’s National hospital in D.C. suggested that she see a pediatric cardiologist on staff who was studying POTS. The cardiologist at Children’s tested Mildred twice on the tilt table, and she passed out both times that the table was vertical. The doctor diagnosed Mildred with POTS and sent her to a neurologist who specializes in it. She also learned she had Ehlers-Danlos syndrome and hypothyroidism.

Before she was diagnosed, Mildred would try to convince herself that she must be “faking” her symptoms because no one could find anything wrong with her. She now knows she was in a sort of “mental haze” that was impacting her thinking. “I thought everybody would see spots and get dizzy if they stood up too quickly,” she says. “And the fatigue came on so slowly that I assumed that I was just getting lazy. I guess I wasn’t reflective enough to realize the reason that I didn’t want to go to school was because I felt so tired that I couldn’t concentrate or pay attention or stay awake.”

Getting a diagnosis and going on medication to help her body retain salt and constrict her blood vessels has helped Mildred feel “so much” better and accept that she has an illness. “It’s not until you get that final validation from a doctor that you truly believe you weren’t just faking it,” she says. “The first day I was on those drugs, it’s like I looked around and the world was clear and I hadn’t been alive before and finally I could see and think.”

Eight years ago, Ellen Kessler endured feelings of hopelessness and frustration for five months while struggling to get a diagnosis for her then 10-year-old daughter, who was suffering from debilitating headaches. Kessler took her daughter to two neurologists, a cardiologist and an ear, nose and throat specialist, and says none of them could find anything wrong with her. The girl’s blood work, MRIs and CT scans were normal. After the fifth-grader missed most of the first half of the school year because she was too exhausted to go to class, her pediatrician, who’d recently seen a patient with POTS, finally took her vital signs while she was standing up. The doctor then sent the family to a POTS specialist.

Ellen Kessler, whose two college-age children have been living with POTS since adolescence, co-founded a nonprofit to help raise awareness about the illness. Photo by Michael Ventura.

 

The lack of awareness among physicians about POTS and her struggle to find help drove Kessler to co-found Dysautonomia International in 2012 in an effort to bring together other parents as well as patients, physicians and researchers. The nonprofit, which has an office in East Moriches, New York, also provides resources for people dealing with POTS and other forms of dysautonomia.

Kessler credits the group’s efforts for reducing the amount of time it takes for patients to receive a POTS diagnosis. “As more people know about it, the more people are being diagnosed,” says Kessler, whose son was diagnosed with POTS at age 12, about 18 months after his sister.

Abdallah says education is the first step of treatment for patients and their families at his institute so everyone can understand the nature of the chronic illness and how it can psychologically affect a patient, leading to anxiety, depression and low self-esteem. While medication and lifestyle changes can help patients control POTS, dealing with the illness impacts all aspects of a teen’s life and requires the cooperation of others who may not understand the illness, Abdallah and other experts say. Students with POTS often need special accommodations to make it through the school day. After Damskey met with Walt Whitman Principal Alan Goodwin and worked with Katya’s guidance counselor and teachers, things got much better. “All of her teachers have been very understanding. They know what she is going through. They know she can only take one test per day,” Damskey says. “If we didn’t have the high school supporting us, I don’t know what it would be like.”

Goodwin knows of a half dozen Whitman students diagnosed with the syndrome. He has had to educate himself and his staff as families have sought help for their children in recent years. “Five years ago, I [had] never heard of POTS,” he says.
Colleen Desmond, a longtime guidance counselor at Bethesda-Chevy Chase High School who retired in 2016, says she has helped several students with POTS whose symptoms ranged from mild to debilitating. One teen, diagnosed around age 15, was tutored at home for two years through a program provided by Montgomery County Public Schools. “He really was weak,” she says. “He couldn’t even come to school.”

More often, students may need a place to rest during the school day, or extra time to complete assignments. Goodwin says he has asked teachers to forgive some assignments or adjust deadlines, and he also hands out passes that allow students to sit in his office if they need a place to rest. It’s a “very disheartening illness,” he says, and because symptoms vary, it can be difficult for teachers to understand. “When kids are feeling fairly well, they present as almost normal,” Goodwin says, “so it’s challenging for teachers to know when to let up on expectations.”

Katya and Mildred aren’t letting POTS define their lives. Katya is planning to study marine biology at Eckerd College in Florida, where the warm climate should help keep her symptoms at bay. Meanwhile, she continues to swim when she can. “Swimming is the best thing for Katya. The pressure forces your blood to flow,” Damskey says.

After Mildred was diagnosed during her junior year, her parents adopted what she calls a form of “tough love,” pushing her to get up and go to school for at least half a day. Her mom would wake her at 5 a.m. and they’d go work out at a gym before school. “It’s like kick-starting your heart or jumping a car,” says Mildred, who quit travel softball during her junior year, but continued to play on the Montgomery Blair varsity team. Now majoring in biology at DePaul University in Chicago, she exercises daily to keep “brain fog” from occurring, and makes sure she takes her medication and eats regularly. She knows that maintaining her healthy lifestyle helps ensure that she has more good days than bad.

Mildred’s experience with her illness, coupled with lessons she learned in an AP biology class, sparked a passion for understanding the molecular interaction of cells, specifically how the tiniest mutation can result in the formation of a disease. “I thought that was fascinating, that such a small effect can have such a large consequence,” she says. “You don’t really appreciate the complexity of a system until it breaks.”

Julie Rasicot of Silver Spring is the managing editor of Bethesda Beat, Bethesda Magazine’s online news service.

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