Penn Township physical therapist helps to fill gap in care for fast heart rate syndrome

Doctors have pitched countless theories to Irwin resident Lauren Karcher regarding the laundry list of health problems she had experienced in the past 15 years.

Emergency room doctors suspected she suffered from transient ischemic attacks — also known as mini-strokes — and a rheumatologist told her she was in the early stages of multiple sclerosis.

Others brushed aside her symptoms — migraines, skyrocketing heart rate from climbing a set of stairs and swollen legs following a long day of teaching students at Norwin’s Sheridan Terrace Elementary School.

“One of the doctors at the emergency room said ‘Oh, there’s no way you’re in this much pain. You’re too happy. You’re smiling too much,’” she said.

“And it just kind of pushed me back even further on the journey. I thought ‘Maybe he’s right. Maybe I’m just not able to deal with this and I just need to suck it up and take a pill and move on with my life.’”

Karcher, 35, went from playing soccer and completing high-intensity workouts to barely mustering the energy to take care of her children — Harper, 5, and Everett, 3. She took Tylenol regularly to combat pounding headaches. A doctor prescribed her an antidepressant.

“I didn’t know what it felt like to feel good,” she said.

But for the past nine months, Karcher’s health has been on the upswing with the help of a Penn Township physical therapist and a proper diagnosis — Postural Orthostatic Tachycardia Syndrome, also known as POTS.

Journey to diagnosis

Kelsey Botti, 35, of Penn Township earned her physical therapy license in 2015, opening her own practice in a one-room Murrysville office seven years later.

But it wasn’t until Botti went through her own POTS diagnosis that she decided to help patients experiencing the same condition.

After scouring the internet, Botti discovered that the Cleveland Clinic was the nearest care provider to her home — and that was more than two hours away.

That’s why in September Botti adapted her physical therapy practice into a POTS clinic out of an office building along Trafford’s Seventh Street. Between the clinic and an accompanying mobile app Botti created last year, the Penn Township resident has helped about 100 patients in Western Pennsylvania and beyond.

POTS impacts the body’s autonomic nervous system — including functions such as blood pressure and heart rate. Patients, as a result, rely on adrenaline to pump blood throughout their body when they stand upright.

But the human body is not designed to handle an all-day adrenaline rush, said Cleveland Clinic’s Dr. Robert Wilson, who’s been a neurologist for 25 years.

“The body’s response starts working against the patient,” he said.

The treatment plan is slow, low-impact aerobic exercise paired with hydration and electrolyte intake. But because the symptoms could apply to a variety of conditions, patients often have to visit a handful of specialists before receiving the proper diagnosis.

“I think the symptoms are more what we call vague or not as clear — dizziness, headaches, wooziness, lightheadedness, nausea,” said Wilson, noting that 10% of syndrome patients experience fainting episodes.

“When they all start coming together, it might not be easy for a person as a medical provider to say ‘Oh, this could be POTS,’” he said.

Botti experienced episodes of illness off and on for about eight years, stemming from a concussion she suffered in 2012. But when her now 4-year-old son Camden was born in 2020, the symptoms became constant.

She battled with extreme fatigue, high heart rate, dizziness and gastrointestinal issues for more than a year. If Camden’s cries awoke her in the middle of the night, she struggled to drag herself to his crib.

After visiting multiple specialists, Botti was diagnosed with the syndrome in 2021 by a cardiologist following a tilt table test — a procedure used to evaluate a patient’s heart rate and blood pressure.

She was prescribed water and electrolyte consumption and advised to avoid long periods of standing or sitting.

“I was like, ‘I have two kids. I think I’m going to need more than that,’” Botti said.

The POTS Life

Botti’s clinic subscribes to a yearlong treatment plan she’s dubbed “The POTS Life.”

Each week, Botti walks patients through three days of stationary bike training — aimed at teaching the body how to properly pump blood again — and three days of strength training tailored to their physical ability.

She advises patients considering additional treatment methods — such as medication and compression garments — and an in-house nutritionist assists patients with dietary questions.

Patients can use The POTS Life app to follow along with prerecorded exercise videos; track their symptoms, workouts and nutrition; message Botti with questions or progress updates; or chat with other patients via a community message board.

“This is a lifestyle change, so if we don’t make something that is adjustable and works with their life, who would ever stick to it?” Botti said. “It’s hard to stick to anything, but then you already feel so sick and you have all these symptoms…

Twelve patients have completed the program, continuing a maintenance level of care to ensure their symptoms don’t worsen again.

Gap in treatment

In the past month, Botti has fielded calls from health care providers in Western Pennsylvania and Canada seeking a specialist for their patients. Through her app, she has helped patients as far away as Indonesia and Pakistan recover from the illness that once crippled her life.

“They want to give their patients something,” she said, “but they don’t have anything outside of us. They were so grateful.”

In Botti’s experience, local medical professionals often don’t feel confident enough to diagnose the condition or provide direct care.

“There’s some piece missing,” she said. “I didn’t learn about this in (physical therapy) school. I had no idea.”

Former emergency room nurse Megan Kukic never learned about the syndrome while studying at UPMC St. Margaret School of Nursing in Blawnox.

Kukic, 31, of Irwin, worked in the emergency room for more than a year, leaving the field upon the onset of the covid-19 pandemic. After undergoing fertility treatments, she opened her own fertility practice — 412 Fertility — in March of 2023.

An avid weightlifter, Kukic put a pause on her exercise routine during fertility treatment, as advised by her doctor. But after stopping treatment and returning to her gym routine in May, Kukic noticed something was wrong.

“I was on the gym floor for 25 minutes with a heart rate in the 170s, just not able to get it down,” she said. “I was like ‘OK, something is wrong. This is not normal.’

“But trying to dig up my ER nurse brain, nothing was really popping out at me, because even working in the emergency room years ago, I had never treated anybody with POTS and I had never really heard of it either.”

Her heart rate spiked when she knelt down to fill up food and water bowls for her pitbulls — Roman, 11, and Jada, 9. She struggled through fatigue and brain fog to perform daily tasks, later visiting a rheumatologist to assess her severe joint pain.

“(It wasn’t) pain from doing a really good workout and you feel sore and it’s almost a good sore,” she said. “This was a miserable discomfort, almost like I wanted to rip my muscles off the bones of my legs.”

Kukic learned about Botti’s clinic via social media. She began POTS treatment in September after receiving a formal diagnosis from a cardiologist.

Research finds tie between long covid, POTS

The pandemic has further complicated the care shortage for POTS.

Viruses such as mononucleosis have been linked for years to a POTS diagnosis, Wilson said, and medical researchers have noticed a similar tie with long covid.

“A lot of viruses sort of shock the autonomic nervous system. The autonomic nervous system does things reflexively, automatically like digestion, blood pressure,” he said.

“We will see these patients that, after covid, their body is in a very heightened physiological stress that they can’t let go — like a fight-or-flight state.”

Medical clinics across the U.S., U.K. and Canada anecdotally reported an uptick in POTS diagnoses following the pandemic, according to a 2021 study by the American Autonomic Society. Though research is silent on the extent of the increase, Wilson suspects local health care providers are overwhelmed by an influx of POTS patients.

But as research into POTS continues, Wilson is hopeful to make better sense of the condition.

“Some people develop it from pregnancy. What makes those people susceptible?” he said. “If we can figure out why and get people early on in the onset and there’s treatments for it to prevent that cascade of people going down that road, that would be really exciting.”