Postural Orthostatic Tachycardia Syndrome (POTS) is a complex disorder of the autonomic nervous system, the body’s involuntary control center. This condition is characterized by an abnormal increase in heart rate upon standing, leading to symptoms like lightheadedness, fatigue, and cognitive impairment often called “brain fog.” Since the autonomic system regulates multiple body functions, finding a physician who understands this multi-system disorder is challenging. Successfully navigating the medical system requires an understanding of the roles different types of specialists play in diagnosis and long-term care.
The Critical First Step: Primary Care Screening
The initial point of contact should be a Primary Care Physician (PCP) or General Internist. The diagnostic process for POTS is fundamentally one of exclusion, meaning common, treatable causes of orthostatic intolerance must be ruled out first. The PCP will order basic laboratory tests to check for issues such as anemia, thyroid dysfunction, dehydration, and nutritional deficiencies.
The PCP can also perform a simple in-office assessment called the Active Stand Test to check for hallmark heart rate changes. This test measures heart rate and blood pressure while lying down and then standing for up to ten minutes. A sustained heart rate increase of at least 30 beats per minute in adults (or 40 in adolescents), without a significant drop in blood pressure, strongly suggests POTS. If these initial steps confirm a suspicion of POTS and rule out simple causes, the PCP provides the necessary referral to a specialist.
Key Specialists for Diagnosis and Confirmation
The definitive diagnosis of POTS is typically confirmed by one of two primary types of specialists: an Autonomic Neurologist or a Cardiac Electrophysiologist. Both utilize the Head-Up Tilt Table Test (HUTT), a procedure where the patient is secured to a table that tilts them upright while heart rate and blood pressure are continuously monitored. The HUTT provides the objective data required to meet the diagnostic criteria for POTS.
Autonomic Neurologists
Autonomic Neurologists specialize in the nervous system control of involuntary functions and are experts in dysautonomia. They focus on identifying the specific subtype of POTS, particularly the neuropathic form, which is associated with small fiber neuropathy. To confirm this, they may order specialized tests like Quantitative Sudomotor Axon Reflex Testing (QSART) or a skin biopsy to measure intra-epidermal nerve fiber density (IENFD).
Cardiac Electrophysiologists
Cardiac Electrophysiologists, a subspecialty of Cardiology, focus on the heart’s electrical activity and rhythm disturbances. They ensure that the rapid heart rate is not due to a primary cardiac arrhythmia, which can present with similar symptoms. These specialists are particularly adept at managing the hyperadrenergic subtype of POTS, which is characterized by high levels of the stress hormone norepinephrine and often an increase in blood pressure upon standing.
Navigating Specialized Autonomic Centers
For patients with complex or refractory symptoms, the highest level of comprehensive care is often found at specialized autonomic centers, typically located within major university medical institutions. These centers provide access to a multidisciplinary staff and advanced testing protocols that may not be available in a standard clinic setting. Accessing these specialized clinics, however, can be challenging due to the high volume of referrals and the limited number of experts.
Wait times for a new patient appointment at a nationally recognized center can range from several months to over a year, and some may temporarily close their waitlists entirely. To initiate the process, a comprehensive referral packet is needed, usually including a physician referral, extensive medical history, and reports from all previous testing, such as echocardiograms and autonomic function studies. Patients can often find lists of these specialized centers and POTS-aware physicians through patient advocacy groups like Dysautonomia International and the Dysautonomia Support Network.
Assembling Your Long-Term Management Team
Effective management of POTS requires a team-based approach after the initial diagnosis is confirmed. This team includes supportive specialists who address the various non-cardiac symptoms that commonly occur with the disorder. Physical Therapists (PTs) are instrumental in reversing physical deconditioning, which can worsen POTS symptoms, using protocols focused on recumbent exercise.
The goal of this recumbent exercise, often based on the Levine Protocol, is to strengthen the heart muscle and increase blood volume without triggering orthostatic stress. This involves aerobic activities like using a recumbent bicycle, rowing machine, or swimming, performed while seated or lying down. For the many patients who experience digestive issues, a Gastrointestinal (GI) Specialist is a necessary team member.
GI specialists focus on treating dysmotility issues, such as gastroparesis (delayed stomach emptying) and abnormal transit through the small and large bowel, often using specialized motility studies to guide treatment. Finally, a Mental Health Professional or Pain Management Specialist is frequently needed, as POTS often co-occurs with conditions like chronic pain, anxiety, and depression. These practitioners help manage the psychological burden of chronic illness and improve overall quality of life.