Michael B. Goodkin, MD, FACC and Cathy L. Pederson, Ph.D.
It is no secret to postural orthostatic tachycardia syndrome (POTS) patients that physician performance is not as good as it should be. The diagnosis is often missed and finding a skilled physician to treat POTS is difficult. We need to do more to prepare our practicing physicians about POTS.
The problem is that POTS crosses a lot of medical boundaries. It’s a neurological illness with multiple causes in which almost all patients have cardiac symptoms. Many times, the medical team includes cardiologists, neurologists, gastroenterologists, rheumatologists, allergists and other specialties. Unfortunately, no one specialty has claimed primary responsibility, although most patients get the vast majority of their care from a cardiologist or neurologist.
Almost all adult POTS patients have cardiac symptoms. POTS is the most common serious cardiovascular problem in premenopausal women and needs to be taken seriously by cardiologists. The vast majority are referred to a general cardiologist. If they make the diagnosis, the cardiologist often refers patients to a cardiac electrophysiologist – a specialist in heart arrhythmias which they treat with medications, ablations, pacemakers and defibrillators. They created the tilt test where the diagnosis was traditionally made and became the POTS “experts”. The problem is that there are only about 3,000 electrophysiologists who will see the ~400,000 adult POTS patients. Clearly, general cardiologists need to pick up some of the load. Any cardiologist should be able to diagnose POTS and treat the related cardiac problems.
POTS patients often see a neurologist due to syncope, dizziness, cognitive dysfunction, headaches, sleep disturbances, and small fiber neuropathy. POTS is an illness of the autonomic nervous system, similar in incidence to Parkinson's disease and multiple sclerosis. Neurologists need to consider POTS as a possible diagnosis, do a standing test to confirm the diagnosis and treat POTS specific neurologic problems. Neurologists need to be aware of Ehlers-Danlos syndrome related neurological problems. The main long-term hope for POTS patients is for neurologists to find ways to modify the autonomic nervous system.
POTS is one of the most common serious chronic illnesses in young people and deserves more attention in the medical community. POTS is an illness of the autonomic nervous system, similar in incidence to multiple sclerosis and Parkinson's disease, but gets far less attention. We need more POTS education for general cardiologists through the American College of Cardiology (email: firstname.lastname@example.org) and for neurologists through the American Academy of Neurology (email: email@example.com). If you have had difficulty finding a knowledgeable cardiologist or neurologist to treat POTS, please take a few minutes to send an email to these organizations. Over time, better physician education will translate to better patient care.
Dear American College of Cardiology (or American Academy of Neurology),
I am writing today to share my story of living with postural orthostatic tachycardia syndrome (POTS) … (and then share your story of diagnosis and treatment).
As a patient community, we insist on better education for practitioners about postural orthostatic tachycardia syndrome (POTS). Physicians must be able to recognize POTS symptoms, perform and standing test (poor man’s tilt table) to diagnose POTS, and then be aware of treatment options for this disorder. It is one of the most common significant chronic illnesses in young people, rivaling multiple sclerosis. We need your help now to radically improve patient care for those suffering from POTS. Please develop continuing education courses on POTS for your members to decrease time to diagnosis and improve treatment of POTS symptoms.
Your name, Your city and state