CLEVELAND — Heart palpitations, fainting nearly every day, chronic pain and fatigue — they are all symptoms of “POTS" or Postural Orthostatic Tachycardia Syndrome.
It’s a condition that has become increasingly more common over the years and is often connected to “long COVID.”
However, most patients suffer in silence and are never properly diagnosed.
A local Cleveland Clinic patient is sharing her story on national POTS Day to raise awareness and encourage others to get the proper care.
For Kelsey Botti, it took nearly a decade to figure out exactly what was wrong with her and treat it properly.
"I'm getting, like, sicker. How — how is this happening?" said Kelsey Botti.
It's a question Kelsey Botti asked herself for years. Could it be Lyme Disease, Rheumatoid Arthritis or even MS? She wasn't sure.
When Botti looks back at photos of herself appearing lifeless, curled up in a hospital bed, she admits she doesn’t recognize who that person was.
However, that was her day-to-day— unknowingly living with POTS.
"No one could find an answer. Just pretty much like, you know—it is what it is."
The active 32-year-old mom of two says it all started back in 2012 after experiencing a concussion during a snowboarding accident.
Lingering headaches, tremors and feelings of repeated fainting would become her daily norm over time.
A second baby boy brought along debilitating GI issues and spiking heart palpitations.
"I was carrying up a load of laundry two flights of stairs to my son's room. And I thought, oh, gosh, here I'm going to pass out."
Years of agony eventually led to a number of tests from a Pittsburgh doctor who told her it was POTS, and to simply drink water, eat some salt and get up slowly.
But Botti says she wasn't going to live her life in slow motion.
She took to Facebook and discovered other POTS patients through a series of Facebook groups.
They led her to the Cleveland Clinic for the next level of care. It's where they say they experienced true success.
"Some studies show it can take six or eight different medical providers—many years before people get diagnosed," said Dr. Robert Wilson, Neurologist and Director of the Autonomic Center in the Department of Neuro Muscular Medicine at Cleveland Clinic.
"It makes you feel a little less crazy because he confirmed like, yes, these are the symptoms. This explains it. I was losing hair. I mean, hair was just coming out," said Botti.
Wilson says POTS is caused by reduced blood volume when a person stands up — specifically, intolerances to postural changes and the body's inability to regulate blood volume.
It’s most common in women ages 15-50, but men are frequently diagnosed as well.
Wilson says POTS can be caused by a severe head injury, viruses — like COVID-19, and autoimmune issues.
Botti says the team at the Cleveland Clinic ultimately eased her into an exercise regimen on a stationary bike.
They essentially helped retrain her brain on how to process physical activity and provided her with the necessary medications and dietary guidelines.
Botti is now on the mend, exercising five days a week, running her own physical therapy business in Pittsburgh catering to women, and being the best mom she can be.
"They saved my life," she said. "They gave me my life back for my two boys and my husband and everything."
Botti says she never had COVID.
However, Wilson says there are likely millions of people unknowingly experiencing POTS due to long COVID.
Botti says being your own medical advocate is critical in getting answers and improving your health. She says don't be afraid to ask questions and do your own research.
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