Meanwhile, others must take care of your newborn because you’re just not strong enough to hold him, and you’re terrified you’ll drop him if you do — all because of your mystery illness. Wendy Baruchowitz, 44, of Rye, New York, survived this nightmare scenario and came through it a thoroughly changed woman. She now dedicates much of her time to helping others who have the mysterious condition known as POTS, or postural orthostatic tachycardia syndrome.
What Is POTS?
POTS is an unusual condition in which your heart rate speeds up by 30 or more beats per minute with little or no change in blood pressure. Such an increase in heart rate may mean that your cardiovascular system is working as hard as it can to maintain blood pressure and blood flow to your brain. According to the Rare Diseases Clinical Research Network, POTS affects about 500,000 Americans, most of whom are women under age 35. “POTS is typically not life-threatening, but it is life-altering,” says Svetlana Blitshteyn, MD, clinical assistant professor at the University of Buffalo School of Medicine and Biomedical Sciences and director of the Dysautonomia Clinic in Williamsville, New York. It’s also characterized by lightheadedness when standing, notes the National Institute of Neurological Disorders and Stroke. POTS may have multiple causes, Dr. Blitshteyn says. Dysautonomia International, a nonprofit organization that provides support for and educational materials about POTS, has found that it tends to occur in younger, premenopausal women like Baruchowitz, according to an ongoing patient survey. Before she had POTS, Baruchowitz was a busy, active mother who worked at an advertising agency in New York City. “I lived what most people would call a normal life — I was a mom, I commuted to work every day, I traveled, and I attended parties and social events with friends and family without giving it a second thought. I took things for granted, as I had no idea what lay ahead on my horizon,” she recalls.
POTS Symptoms, but No Diagnosis
While she was pregnant with her second son, Baruchowitz, then 39, experienced minor complications and her doctors ordered bed rest for several months as a precaution. Just a week before her due date, she was thrilled to get the green light to move around again. But when she stood up for the first time, she immediately knew something was wrong. “I could feel the blood draining from my head and pooling in my feet. My heart was racing. I was dizzy and nauseous,” she says. Baruchowitz asked her husband, Mitch, to take her pulse, which was 160 — about twice what it should be for a woman nearing her due date. She and her husband explained away her symptoms as simply the result of being out of shape after long weeks of bed rest. But a week after little Blake was born, they knew something far worse was happening. “I had lost the ability to function. I was petrified and became despondent,” recalls Baruchowitz. She was also desperate for answers. Her desperation drove her out of bed, and over the next few months, she saw dozens of doctors — all of whom dismissed her symptoms as nothing serious. “Neurologists, internists, and cardiologists all told me that I was suffering from postpartum depression or that I had anxiety from the birth of my son,” she recalls. The solutions the doctors offered insulted her: psychological counseling or anti-anxiety medication, as if her terrifying symptoms were all in her head.
A POTS Protocol for Gradual Recovery
After an exhaustive search for a diagnosis that made sense to her, she finally found Blair Grubb, MD, director of both the Clinical Electrophysiology Program and the Clinical Autonomic Disorders & Syncope Center at the University of Toledo Medical Center in Ohio. Dr. Grubb, a POTS expert, was finally able to correctly diagnose Baruchowitz and created an individualized POTS protocol for her that would ultimately restore her to a semblance of her former life. That protocol, which might not work for everyone who has the condition, includes daily exercise, a high-salt diet, and drinking 60 to 80 ounces (2 to 2.5 quarts) of water every day. The main thing Baruchowitz wants everyone with this baffling condition to understand is that “You can regain control of your body and significantly improve over time,” she says. When she first started swimming, she was barely able to eke out one lap in the pool. But she worked with a personal trainer, swam every single day, and over a few months progressed to swimming 30 minutes a day. Only then was she ready to exercise on solid ground. Swimming is a perfect exercise to begin with because you’re horizontal, and swimming defies gravity — the enemy to a POTS patient, she notes. Strengthened by her swimming, Baruchowitz then began working out on the treadmill, at first walking just one to three minutes a day. “Today, I can walk/run two miles a day and I also walk 11,000-plus steps a day — roughly 5.5 miles,” she says proudly. Plus, she weight trains three times a week. Weight training is particularly important for people with POTS, because building muscle mass is critical for pumping blood back to the heart, which helps prevent fainting. Thankfully for Baruchowitz and others who face the challenges of POTS, there’s more research interest and knowledge about POTS than in the past, says Blitshteyn. “There is some evidence that POTS may have an autoimmune basis in some patients,” she says, noting that certain antibodies — alpha 1 adrenergic receptor and beta 1 andrenergic receptors — have been found in some people with POTS. Researchers are currently studying 400 patients to see if POTS is, in fact, an autoimmune disease, says Blitshteyn. Genetic factors may also play a role. “The two most important are excessive joint flexibility, often from a benign form of Ehlers-Danlos syndrome, a type of inherited excess joint laxity,” explains Louis H. Weimer, MD, professor of neurology and codirector of the Columbia Neuropathy Research Center at the Columbia University Medical Center in New York City. Or it could be triggered after an acute viral infection such as the flu, he notes. POTS patients commonly report that they’ve had some kind of bacterial or viral infection, such as mononucleosis, flu, or gastroenteritis, adds Blitshteyn. “They appear unable to recover and continue to experience fatigue, flu-like illness, dizziness, nausea, and headaches,” she adds.
Patient Advocates for POTS Awareness
Baruchowitz created POTS Take A Stand as a platform to raise funds and awareness for POTS research. Partnering with Dysautonomia International, she helped organize a one-mile walk last October in Rye, New York. The event raised $20,000 for Dysautonomia International’s POTS Research Fund. Baruchowitz recently joined the group’s patient advisory board, a vantage point that allows her to connect with and help patients, parents, and caregivers affected by POTS. Since then, she says, countless people have reached out for support in finding doctors, advice about protocols, exercise regimens, and dietary tips. “It’s been so gratifying helping these people, especially since I know how difficult life can be living with POTS,” she says.
