The holiday season was just around the corner and Noah Whittington couldn’t stop throwing up. The cause was a mystery.
A junior at Yorktown High School at the time, the 16-year-old had suffered a concussion during a hockey game earlier in the fall of 2017. Shortly after he was cleared to play again, he came down with a virus that had been circulating among his teammates. But what started as a run-of-the-mill flu turned into a prolonged inability to keep food down.
“Thanksgiving was the following week and he just couldn’t eat,” remembers his mom, Melanie Whittington.
Suffering through weeks of nausea and vomiting and unable to get out of bed, Noah saw his pediatrician and then a gastroenterologist.
“No one could find anything wrong with him,” Melanie says. “Doctors kept saying he had anxiety, but that didn’t seem right. My kid wouldn’t wake up from a dead sleep and start throwing up just because of anxiety.”
The next several months were no better. Noah’s symptoms expanded to include rapid heart rate, fatigue, fogginess, dehydration and profuse sweating. “I would check on him four or five times a night, and he would be soaked,” his mom recalls. “His adrenaline was pumping all the time.”
Doctors prescribed a fleet of medications to regulate Noah’s sleep, blood pressure, nausea and presumed mental health issues, but his symptoms persisted. He missed school. He couldn’t participate in sports or social activities.
His parents dragged him from one specialist to the next, until finally an anesthesiologist at an endoscopy appointment asked: “Have you ever heard of POTS?”
“Doctors kept saying he had anxiety, but that didn’t seem right. My kid wouldn’t wake up from a dead sleep and start throwing up just because of anxiety.”
POTS, or postural orthostatic tachycardia syndrome, occurs when a patient’s autonomic nervous system (which regulates involuntary functions such as heart rate, blood pressure, breathing, perspiration and digestion) gets out of whack. The most prevalent symptom is a rapid increase in heart rate that occurs after standing up from a seated or reclining position.
Normally, when a person stands up, the autonomic nervous system tells the blood vessels in the lower body to constrict, working against gravity to maintain a steady flow of blood to the heart and brain. But in many individuals with POTS, that message short-circuits. The blood vessels don’t constrict, causing blood to pool in the lower extremities.
Inadequate blood flow to the brain can cause light-headedness or fainting. Other symptoms stemming from dysregulated blood pressure may include fatigue, headaches, neuropathy (nerve pain and tingling), trouble concentrating, tremors, chest pain, digestive issues and seizures.
“POTS is a neurological disorder that causes systemic effects throughout the body—everything from increased heart rate, to sweating, to tear production, to [difficulty] moving things through your GI tract,” explains Lauren Stiles, a research assistant professor of neurology at the Stony Brook University School of Medicine in New York. She’s also founder and president of Dysautonomia International, a nonprofit advocacy group fighting to increase awareness of and research funding for autonomic nervous system disorders. (Stiles herself developed POTS symptoms at the age of 31 after sustaining a concussion in a snowboarding accident.)
The nonprofit estimates that prior to Covid, some 3 million Americans were impacted by POTS. Post-pandemic research suggests that number could now be as high as 6 million, and that there may be a correlation between POTS and long Covid. Though POTS can strike at any age, it’s most commonly diagnosed in teens and young adults, particularly young women.
Prior to Covid, some 3 million Americans were impacted by POTS. Post-pandemic research suggests that number could now be as high as 6 million.
“About 25% of patients are wheelchair-bound or bedridden,” Stiles says, “and many are young. The peak age of onset is 14. A lot of kids miss out on their adolescence because of this.”
In the spring of 2018—five months after the onset of symptoms that kept him glued to the bathroom floor—Noah Whittington got an appointment with Tae Chung, director of the POTS clinic at Johns Hopkins Medicine in Baltimore.
Under Chung’s direction, Noah discontinued all of his previous medications and started a new regimen. “I began taking salt tablets, a blood pressure medication and a medical marijuana tablet [for nausea] called Marinol,” Noah says. “That was a life-changer.”
He started receiving saline infusions to increase his blood volume and began physical therapy, commuting daily from Arlington to Baltimore for the first eight weeks and then weekly for several more months.
Exercise proved critical to helping regulate his bodily systems. “I was so depressed back then. Learning about heart-rate recovery and doing physical therapy was the only way that I could get out of it,” Noah remembers. “My heart rate would get up to 200 beats per minute without me even noticing, and my vasovagal response would make me throw up. Once I learned how to keep [my heart rate] under 200 bpm, I could manage it.”
Even when he felt horrible, he was better if he could get up and move.
“The name of the disease is misleading,” says Chung, an assistant professor of physical medicine, rehabilitation and neurology at Johns Hopkins. (He’s referring to the “tachycardia” part of the POTS acronym, which is a medical term for a heart rate exceeding 100 beats per minute.) “It sounds like a cardiological problem, but actually you need to rule out a cardiac condition in order to diagnose POTS. It’s important to listen to the patient and get the whole picture.”
In the spring of 2019, Noah returned to Yorktown full time and finished out his senior year. Today he’s at James Madison University, where he’s studying business management. He exercises regularly, plays club hockey and drinks a ton of water—“at least two gallons a day,” he says—to increase his blood volume. Life feels almost normal.
“I feel like Dr. Chung saved us,” his mom says.
POTS isn’t a new phenomenon. It’s had many names, including Civil War syndrome, Soldier’s Heart and DaCosta’s syndrome. The POTS acronym was adopted in the early ’90s, but the medical community has only recently begun to unlock its mysteries.
New research suggests a correlation between POTS and certain autoimmune disorders, although studies are ongoing. “About 20% of people with POTS have a known autoimmune condition,” Stiles says, such as Hashimoto’s disease, Sjögren’s syndrome or celiac disease.
Others have nonspecific immune markers, indicating there may be “a much bigger percentage of POTS patients who have an autoimmune condition that we don’t have a name for yet,” she adds.
Experts believe POTS may also emerge as a bodily response to external factors such as trauma, pregnancy or a virus, such as Covid.
“We do know that a lot of patients who have POTS have had a triggering event—an infection, concussion, surgery, non-concussion trauma—that can lead to autoimmunity, which in turn releases proteins that can confuse the immune system,” says Jeff Boris, a Philadelphia-based pediatric cardiologist who’s seen POTS patients since 2002. “We often see POTS patients who have markers of autoimmunity, but we haven’t nailed down the connection yet.”
POTS may be triggered by physical trauma, a concussion, an infection or a virus, such as Covid.
Diagnosis can be difficult, as the condition presents differently from one patient to the next.
“Everyone’s path to a POTS diagnosis looks so different,” says an Arlington parent whose daughter was diagnosed after more than a year of being bounced around to various specialists. “On the surface, the same condition may look totally dissimilar. One person could be vomiting; another might be fainting.”
Unsure of what they are dealing with, physicians may initially prescribe a variety of medications in hopes that one fixes the problem—a kind of pharmacological Whac-A-Mole approach.
“Often someone will come to me on a lot of antidepressants because the doctors they’ve been seeing think they’re crazy,” Chung says. “A lot of physical symptoms will get completely dismissed.”
Misdiagnosis isn’t just maddening, expensive and time-consuming. In the worst cases, it can cause compounding issues that require further treatment.
Julie (not her real name), an Arlington mom, describes how her teenage daughter—once an elite athlete and academic superstar—started experiencing gastrointestinal issues following a seemingly straightforward surgery in 2020. After more than a year of failing body systems, which necessitated a feeding tube, and physical pain that doctors could neither explain nor figure out how to treat, the girl became suicidal.
Feeling dismissed and abandoned by the medical community, she asked to be checked into a psychiatric facility.
“When there’s nothing they can see, and nothing shows up on tests, doctors say it’s psychological,” says Julie, whose daughter was ultimately diagnosed with POTS, along with several other autoimmune issues. “Just because you don’t know what’s wrong with her doesn’t mean it’s in her head. I have advanced degrees, great insurance, a supportive family, but I still couldn’t get anyone to help her.”
The road to diagnosis can be even harder for people of color. “Ninety-five percent of people who are diagnosed with POTS are White, but it’s not a White person’s syndrome,” says Stiles of Dysautonomia International. “How much harder is it for people who are already discriminated against in the medical system to get a POTS diagnosis?”
Chung of Johns Hopkins echoes this concern; “Nobody really knows why POTS shows up predominantly in Caucasian women. It may be socioeconomic factors, or it may be that women of color are less likely to be believed by their doctors.”
T.J. Petrizzo and his wife, Nicole, felt powerless in 2004 when their then 7-year-old daughter, Francesca, developed severe, unexplained abdominal pain. Over the next five years, Francesca saw dozens of doctors. She was prescribed handfuls of medications and numerous surgeries and treatments, including nerve blockers, Botox injections and replacing the stitches on a previous umbilical hernia repair. Her symptoms ballooned to include chronic headaches, body aches, nausea and exhaustion.
It wasn’t until Francesca landed in the office of Jeffrey Moak, a pediatric cardiologist at Children’s National in D.C., that she was diagnosed with POTS at age 12.
To this day, the cause of her initial abdominal pain remains a mystery. “I think what ultimately triggered her POTS was all the therapies, surgeries, acupuncture and medications,” says Petrizzo, a McLean-based lobbyist serving clients primarily in the health care industry. “So many things being tested on her created medical trauma. They had just worn a kid down.”
Even with a POTS diagnosis in hand, the family faced years-long waitlists for treatment. “We were like, what now? We had a 12-year-old lying in bed in constant pain,” Petrizzo says. “We couldn’t wait the 18 months to get her help.”
He leaned on his professional network to fast-track an appointment with Phil Fischer, a POTS specialist at the Mayo Clinic in Rochester, Minnesota, where Francesca was treated with a combination of beta blockers and a blood pressure medication called Midodrine. “That helped her get her life back,” Nicole says.
Now 26, Francesca has a degree from the University of Washington and works as a senior account executive at a real estate company. She exercises daily, takes medication to keep her symptoms at bay and finds strength in online POTS support groups. Her dad is aware of how lucky they were to have his lobbying connections.
“At least we knew what we were fighting,” he says. “What about those families who don’t know the system? Who can’t get in to see the right doctors? Who never get an accurate diagnosis? If the health care system can be confusing even for me, how do we expect parents who don’t have inside information and connections to be able to find treatment for their kids?”
Though there is no cure for POTS, the medical community is figuring out how to identify and manage it. In the most common diagnostic tool, called a tilt table test, the patient is secured to a table that changes positions. A technician measures changes in heart rate and blood pressure as the table’s angle moves from horizontal to vertical, pivoting the patient from lying down to standing up.
Some POTS symptoms are observable without tests—such as when a patient’s feet or legs turn purple from blood pooling in their lower extremities.
Some POTS symptoms are observable without tests—such as when a patient’s feet or legs turn purple from blood pooling in their lower extremities.
For many patients, a key treatment goal is increasing blood volume, which improves circulation and helps push the blood “uphill” from the legs to the heart and brain. Drinking copious fluids and taking salt tablets to retain fluid are part, but not all, of this strategy. Some patients take medication (vasoconstrictors) that cause their blood vessels to constrict, and herbal supplements that help their kidneys retain fluid. Building muscle mass is also key.
“Drinking water and electrolytes isn’t enough to increase blood volume,” says Johns Hopkins’ Chung. “Patients also have to change their lifestyle. Exercise is one of the most significant ways to increase blood volume.”
But therein lies a catch-22. “Exercise intolerance is one of the biggest issues POTS patients face,” he says. “I tell patients that it’s going to take a long time, and they need to be prepared for that. They need to go to a physical therapist who understands POTS. Patients may be motivated and ambitious, but it’s not easy. My strength as a rehab doctor is helping them understand lifestyle modification. Our team is just the coach. The patient is the player.”
Katherine Hamilton remembers times when she felt too tired and dizzy to even sit upright, much less work out.
It started in late 2020, midway through her sophomore year at Washington-Liberty High School. She began feeling light-headed and, a few days before Christmas, had her first fainting spell, followed by a grand mal seizure. She was taken by ambulance to VHC Health and then moved to Children’s National. (Hamilton’s father is Arlington Magazine publisher Greg Hamilton.)
The doctors at Children’s conducted a battery of tests, ruling out epilepsy, a brain tumor and heart issues. Through a process of elimination, the team diagnosed her with an anxiety disorder called psychogenic nonepileptic seizures (PNES).
A cardiologist and her pediatrician agreed with the conclusion that she suffered from anxiety so severe it caused her to pass out and have seizures, often multiple times a day.
“For 10 months, I was incorrectly treated for PNES with antidepressants and anti-anxiety meds, but my condition never improved,” says Hamilton, now 18.
One day a classmate shared openly that she suffered from several forms of dysautonomia, including POTS. “I listened to her describe her symptoms,” Hamilton says, “and I was like, that’s me. I have POTS.”
Hamilton’s parents made an appointment with Hasan Abdallah, a pediatric cardiologist with Children’s Heart Institute in Herndon. Abdallah and his wife, also a cardiologist, specialize in diagnosing and treating POTS and other forms of dysautonomia. Hamilton was informally diagnosed almost immediately.
“He had me stand up and take off my shoes and socks,” she says. “My feet went from pink to red to purple, my blood was pooling, my hands were clammy, my eyes were dilated. He said, ‘Nothing about this is psychiatric.’ ”
“I listened to her describe her symptoms, and I was like, that’s me. I have POTS.”
After several more weeks of appointments and tests, including a tilt table test, she was formally diagnosed and prescribed appropriate medications.
Hamilton also has Ehlers-Danlos syndrome, an inherited connective tissue disorder, and Hashimoto’s disease, an autoimmune condition that affects the thyroid.
“It’s not surprising that, as a young woman, my POTS was misdiagnosed as an anxiety disorder,” she says in retrospect. “The doctors didn’t look deeper than what seemed obvious.”
Though the prevalence of POTS remains hard to quantify, cases seem to be on the rise. “Post-Covid, we’re estimating that [cases in America] have doubled,” says Stiles. “Our support groups, social media and conferences have all seen an enormous growth in interest. Covid isn’t just causing POTS; it’s causing all kinds of dysautonomia.”
Chung offers a similar assessment. “I wouldn’t be surprised if [POTS affects] 1% of the population and about 10% of people who have long Covid,” he says. “The main change in POTS diagnoses since the pandemic is that people are getting diagnosed faster—especially if they’ve had Covid.”
Lyme disease may be another trigger. James (not his real name) was a three-sport athlete and straight-A student in middle school until he contracted Lyme disease from a tick bite.
“I stopped playing sports. I lacked motivation in school, and my grades were getting worse,” says the Falls Church resident, now 20. “Honestly, I just didn’t know what was wrong with me. I was getting sick so often that it was hard for me to get up in the morning. It was like I was in a constant fight with myself.”
A doctor prescribed medication for depression and anxiety, which didn’t work. It wasn’t until James received a POTS diagnosis that he finally had an explanation for his extreme fatigue, his tendency to zone out in the middle of a conversation, his occasional struggle to communicate.
These are typical POTS symptoms, says Boris, the Philadelphia pediatric cardiologist. “I often see the smart kids who, in class, understand what they’re being taught, then walk out of class and forget what they just learned.”
James’ road to wellness wasn’t easy. He missed most of the second half of eighth grade. His family fought for a 504 plan to accommodate his disabilities, and he ended up changing high schools. After graduation, he spent a year getting his GPA back on track, earning college credits through an alternative academic program. This fall, he’ll enter his junior year at a university in New England.
Lindsay Burtle endured two years of stomach pain and headaches before she was diagnosed with POTS as a freshman at Yorktown. “I had to stop playing travel soccer because of the physical toll it was taking on me,” she recalls. “I lost my ability to read books, which I used to do all the time.”
Depression and anxiety may not be the cause of POTS, she says, but they can certainly follow. “It turns your life completely upside down.”
Burtle transferred to Fusion Academy, a private school in Tysons, for two years while getting her illness under control. She returned to Yorktown for her senior year, graduated on time in June 2020 and is now a rising senior at the University of Vermont.
Her symptoms aren’t gone, but she’s learned how to manage them. She wears compression socks, eats salty snacks, carries a big water bottle wherever she goes and has learned to recognize her body’s signals.
“I’ve gotten really good at learning how to take care of myself and knowing when not to push myself,” she says. “I ask teachers to turn on closed-captioning for their videos or use peer note-taking to help deal with my auditory processing delay in lectures. I personify my symptoms—like, my pain is being such an asshole today—so that I can separate myself from my chronic illness. I’ve started an amateur soccer league with my friends. I’m reading more books again. I’m really happy to be getting back to normal.”
“Sometimes it’s awkward to have a disability that no one can tell just from looking at you. Strangers see me faint and think that I’m doing drugs.”
Lately POTS has been getting more airtime. Advocacy groups say it still isn’t enough. “NIH spends more than $100 million a year on Parkinson’s research, but POTS impacts more people than Parkinson’s,” says Stiles.
Research funding for Parkinson’s currently works out to about $100 per patient. By comparison, “We estimate that NIH spends about 33 cents per patient in their POTS research,” says T.J. Petrizzo, whose activism has been fueled by his daughter Francesca’s harrowing experience.
“We’re asking them to allocate $50 million in funding to help bring this cause to the forefront of medical research. Pediatricians are the front line. If we can help increase awareness among pediatricians, we may find ways to mitigate the suffering that the kids go through until we find some cures.”
Petrizzo encourages other POTS families to share their stories. “When I talk about it, I find out that other people are dealing with the same issue,” he says. “That’s been the most surprising aspect. There’s more awareness now, which leads to more testing.”
This fall, Katherine Hamilton will begin college at James Madison University. It’s a hard-fought achievement for a young woman who spent nearly three years of high school staring down a medical condition that was misdiagnosed and largely misunderstood—amid a global pandemic to boot.
As a co-founder of Washington-Liberty’s Chronic Illness Support Group, she leaves behind a student support network that she didn’t have at the start of her journey.
“Sometimes it’s awkward to have a disability that no one can tell just from looking at you,” she says. “Strangers see me faint and think that I’m doing drugs. People who are dealing with invisible disabilities shouldn’t have to suffer alone.
“It’s okay to reach out and ask for support,” she adds. “When I’m out in public and I know I might faint, I always try to find someone who looks nice and say, ‘Hey, I have a medical condition, and sometimes I pass out or have seizures. If I do, can you not call 911, and stay with me until I can call my mom?’
“I tend to rely on the kindness of other people,” she says. “Every time I’ve asked someone for help, they’ve been kind. Having POTS has helped me to not only use my own voice, but also realize that the world is actually not such a terrible place.”
Adrienne Wichard-Edds is a writer and writing coach based in Arlington. Find her online at theessaycoaches.com.