February 21, 2014 at 1:00 am

Home Life

POTS disorder derails the young and healthy

Megan Scholl, 39, a physician's assistant at Troy Beaumont Hospital spent three months searching before she was properly diagnosed with POTS or Postural Orthostatic Tachycardia Syndrome. (Marney Rich Keenan / The Detroit News)

She will always remember the date, Aug. 24, 2009, because it was the day that changed her entire life.

That Monday, Megan Scholl, a physicians assistant in the operating room at Troy Beaumont Hospital, felt her heart rate take off like a speeding train. She had stabbing chest pain and shortness of breath. In the ER, a workup indicated nothing was wrong. Indeed, a month earlier, she had her regular physical and was a perfectly healthy 35-year-old mother of two. Doctors told her the tachycardia (rapid heart rate) was likely caused by stress.

The next day, Scholl, now 39, readied herself for work, thinking the symptoms would pass. Instead the shortness of breath and chest pain returned. She was admitted to the hospital. This time, she got a diagnosis: pericarditis, an inflammation of the sack that holds your heart.

At the time, Scholl says: “It was the only thing that made sense.” In short order, however, it ceased to make sense. The treatment — a boatload of inflammatory meds — never did slow down her racing heart. The fatigue, anxiety and chest pain never abated. The emotional toll of a being a mother (her kids are now 8 and 5) who could not help her daughter cut out paper shapes for a school project or make it through her son’s meet-and-greet at preschool was mounting. Later, an MRI showed her pericardium was fine.

Over the next several months, she would leave doctor’s offices feeling the same way: empty-handed and frustrated. She went through a revolving door of specialists in the fields of pulmonology, neurology, rheumatology, cardiology and endocrinology at three different medical institutions. Her weight dropped to 90 pounds and she was told she was anorexic: “I couldn’t breathe well enough to get food in my mouth.” She was out of work for nine weeks and had to hire someone to help take care of her kids.

“Here I was in the medical profession and baffled by my own illness,” Scholl said recently during a break at the hospital. “I kept thinking, ‘I know I’m not crazy: There is something wrong with me.’ I went from being totally healthy to being totally debilitated. And to keep getting no answers and handed a prescription for Zanax, it was so disheartening.”

Finally in May 2010, Scholl was diagnosed by Dr. Blair Grubb at the University of Toledo with POTS, Postural Orthostatic Tachycardia Syndrome. POTS is a malfunctioning of the autonomic nervous system, which is like the thermostat of whole body. The autonomic nervous system controls most everything our bodies do automatically, such as heart rate, blood pressure, digestion, body temperature, even pupil dilation.

With POTS, circulation is thrown out of whack. The most identifiable symptom is a pooling of blood and fluids to the legs and lower body upon standing. Low blood pressure is a key factor. The heart rate increases dramatically because the body is attempting to compensate for the drop in blood pressure.

Its causes are unknown, although most experts agree it stems from some kind of assault to the autonomic nervous system. While Scholl’s POTS struck her like a lightning bolt, others can develop symptoms over time. In kind, some sufferers are severely debilitated, others’ lives are impacted only minimally. Experts say POTS is five times more likely to develop in women than in men. Also, one in 100 teenagers is likely to develop it.

My niece Hannah Rich is one of those teenagers. Hannah was diagnosed February 2013 after three years of seeing several different physicians for rapid heart beat, anxiety and chronic fatigue.

Medications prescribed by psychiatrists only set her back further. While Hannah graduated from high school, she’s had to take two medical leaves from college. “Hard as I tried, I still could not get out bed to go to school. I felt sick 24/7.”

Now on a treatment plan that includes medications, supplements, small and frequent meals, lots of exercise, high salt intake and lots of fluids, Hannah says she is on her way back to health. But she has no illusions. “It’s one of the most complicated diseases with the most vast array of symptoms. ... Like they say, the most predictable thing about POTS is that it’s unpredictable.”

For Megan Scholl, POTS will flare up from time to time, but for the first time in years, she feels stable. “It was the biggest fight ever of my life, but I want people to know there is a light at the end of the tunnel. You can get yourself back. I love the saying: ‘Quit waiting for the storm to pass; you got to get out there and dance in the rain.’ ”

For more information check out Scholl’s website, www.paforpotsawareness.com.