It’s likely that many have not heard of POTS syndrome, but if you are living with it, you know the realities of the condition all too well. Many people are still seeking answers and have not yet been diagnosed, but POTS is gaining recognition, and as more physicians understand the etiology of the disease and its symptoms, more people are able to be identified and treated.
Without treatment, POTS (Postural Orthostatic Tachycardia Syndrome) can seriously interfere with quality of life to the point where a person is unable to go to school or work and is fainting regularly, along with other terrifying symptoms. POTS is an unusual condition in which the heart rate may speed up by 30 or more beats per minute with minimal change in blood pressure. Such an increase in heart rate usually means that one’s cardiovascular system is working desperately to maintain blood pressure and blood flow to the brain. When that fails to occur, sweating, dizziness, nausea, vomiting, and fainting can occur. According to the Rare Diseases Clinical Research Network, POTS affects about 500,000 Americans (although the number of undiagnosed cases may be many more) and most of the individuals affected are women under age 35. However, that doesn’t mean men can’t be affected, and therefore being a male and having this syndrome may make it ever more difficult to get a proper diagnosis and treatment, as many physicians may consider it a female’s disease.
According to Yahoo, 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, says that although POTS may have multiple causes, it is usually characterized first by lightheadedness when standing. Wendy Baruchowitz is a mother of two. She has POTS syndrome and knows the sundry truth of day-to-day life with POTS.
“POTS is typically not life-threatening, but it is life-altering. 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.”
Shortly after the birth of her second child, that all changed when she found herself having intense dizzy spells that would lead to heart rates of 160 — a heart rate that many don’t even achieve with vigorous exercise.
“I could feel the blood draining from my head and pooling in my feet. My heart was racing. 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.”
But many days she could barely get out of bed because of the extreme weakness, dizziness, and fatigue. She pressed on for answers. She was offered anti-depressants and anti-anxiety medication, but none of those did anything to help the symptoms. After months of looking, she found someone who seemed to offer a different perspective on her situation, and a possible treatment plan. 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, is a POTS expert. She was able to correctly diagnose Baruchowitz and prescribed a very specific POTS protocol for her that would allow her to have some quality of life back.
One of the most important things to remember is that if you’re very dizzy or fainting when you stand up, it’s vital that you press to get answers. One doesn’t normally faint because they are anxious — they get anxious because they know they are going to faint. Finding a healthcare provider that understands POTS is not a psychiatric condition is crucial.
Treatments may vary, but one important aspect is to stay very hydrated and have an adequate salt balance. This can stabilize blood pressure and avoid fainting. Another is to have a moderate exercise balance because staying in bed causes muscle atrophy which can add to problems. Above all, though, a coping mechanism, such as a support group of people with POTS, is vital to sharing frustrations, triumphs, and treatments — and surrounds you with people who know this is not all in your head.
[Featured Image by Sasha/Getty Images]