Understanding POTS: Insights from Dr. Jeffrey Boris

This blog is taken from the recent interview I did with Dr. Boris. You can listen to the conversation on the "Conquering Your Fibromyalgia Podcast," a show dedicated to unraveling the complexities of fibromyalgia and related invisible illnesses. The mission is to bridge the gap between the latest medical research and everyday experiences, empowering both patients and healthcare professionals with evidence-based insights. Whether you're a long-time sufferer seeking understanding and validation or a medical professional looking to deepen your knowledge, our episodes are designed to be both informative and approachable.

Together, we'll explore cutting-edge research, practical self-help tips, and personal stories to create a comprehensive resource for managing fibromyalgia and related invisible illnesses. Join us on this journey towards better health and a more informed community.

In this blog, we delve into an episode that focuses on fibromyalgia and other nociplastic chronic pain conditions. While fibromyalgia epitomizes nociplastic pain conditions or centralized pain conditions, there are other conditions under that broader umbrella, such as Postural Orthostatic Tachycardia Syndrome (POTS). Today, we are privileged to have a special guest, Dr. Jeffrey Boris, a leading expert in POTS.

Who is Dr. Jeffrey Boris?

Dr. Jeffrey Boris is a medical doctor specializing in pediatric cardiology and general pediatrics. Since 1997, he has been dedicated to caring for patients with POTS, and he has been involved in treating POTS since 2002. Over the years, Dr. Boris has worked with patients who have multiple other diagnoses alongside their POTS, including hypermobility (with and without Ehlers-Danlos syndrome), concussions, mast cell activation syndrome, Sjogren's syndrome, eosinophilic esophagitis, and more.

He uses a multi-pronged approach to help children return to school, sports, and other aspects of their lives. Dr. Boris has also published research in acclaimed medical journals to help doctors better understand POTS, thereby making more physicians available to treat it and join research efforts to better understand this disorder.

In 2016, Dr. Boris was named Physician of the Year by Dysautonomia International, a leading organization seeking to improve the lives of people with autonomic nervous system disorders. He was recognized for his warmth, compassion, and tireless commitment to his pediatric and young adult patients.

How Did Dr. Boris Become Interested in POTS?

Dr. Boris's journey into understanding POTS began in 2002, shortly after starting his practice in pediatric cardiology. During his early years, he encountered a patient with severe lightheadedness who was not responding to conventional therapies. This prompted him to explore further, leading him to discover the term "POTS" (Postural Orthostatic Tachycardia Syndrome) in medical literature. A pivotal moment came when he cold-called Dr. Blair Grubb, an adult cardiologist and a leading expert on POTS, which led to a two-and-a-half-hour conversation that significantly influenced Dr. Boris's understanding and approach to the condition.

Over the years, Dr. Boris continued to see POTS patients, initially during his payback time with the United States Air Force and later in private practice. His move to the Children's Hospital of Philadelphia (CHOP) in 2007 marked a significant point in his career, where he became the go-to expert for POTS, with patients coming from all over the country.

What is POTS?

POTS, or Postural Orthostatic Tachycardia Syndrome, is a type of dysautonomia, which means it's a malfunction of the autonomic nervous system. The autonomic nervous system controls heart rate, blood pressure, gastrointestinal motility, sweating, pupillary size, and other involuntary bodily functions. When this system malfunctions, as in POTS, patients experience significant debilitation.

The hallmark of POTS is orthostatic intolerance, where patients feel lightheaded, experience tachycardia (a rapid heartbeat), and other symptoms primarily when they are upright. These symptoms can be triggered by standing, but some patients even experience them while seated. Other common symptoms include nausea, headaches, brain fog, cognitive dysfunction, gastrointestinal issues, muscle and joint pain, and venous pooling (where the hands or feet turn purple, blotchy, swollen, or red).

Patients with POTS often experience significant functional impairment. For example, a POTS patient might have a good day where they exercise like a typical person, only to be nearly bedridden for the next three days, barely able to function.

Diagnostic Criteria for POTS

To diagnose POTS, there must be at least three months of chronic orthostatic intolerance, combined with a sustained increase in heart rate upon standing. For adults, this increase is defined as at least 30 beats per minute (bpm), and for adolescents aged 12 to 19, it's 40 bpm. However, Dr. Boris notes that the exact diagnostic criteria can vary, and there are ongoing debates within the medical community about the most accurate methods for diagnosing POTS.

Historically, the tilt table test has been the gold standard for diagnosing POTS. During this test, the patient lies down on a table that is mechanically elevated to an upright position, and their heart rate and blood pressure are monitored. However, some physicians now use a simpler 10-minute standing test, where the patient stands for 10 minutes after lying down, to measure the heart rate response.

The Challenge of Diagnosing POTS

One of the biggest challenges with POTS is that patients often suffer for years before receiving a proper diagnosis. Dr. Boris explains that many patients initially attribute their symptoms to anxiety or are dismissed by healthcare providers. This can lead to a lengthy diagnostic process, where patients see multiple clinicians before finding someone who recognizes their condition.

A study from Vanderbilt University in 2016 highlighted this issue, showing that it took at least seven clinicians for half of the patients to receive a POTS diagnosis, with 23% of patients seeing 10 or more clinicians before being diagnosed. The lack of awareness and understanding of POTS among healthcare providers contributes to this diagnostic delay.

Triggers and Contributing Factors for POTS

The most common trigger for POTS is infection, with viruses like Epstein-Barr and SARS-CoV-2 (the virus that causes COVID-19) being significant contributors. Other triggers include concussions, surgery, non-concussion trauma (such as fractures), growth spurts, and the onset of menses in adolescents. There is also some evidence, though not definitive, suggesting that certain vaccinations, like the human papillomavirus (HPV) vaccine, may be triggers.

Interestingly, studies have shown that even severe deconditioning can induce POTS-like symptoms in individuals who do not have the condition. For example, astronauts subjected to prolonged bed rest in a head-down position developed orthostatic intolerance, though their symptoms resolved with reconditioning. This highlights the importance of distinguishing between deconditioning-induced symptoms and true POTS.

The Two-Hit Hypothesis: Genetics and Triggers

Dr. Boris suggests that POTS may be explained by the "two-hit hypothesis," where a genetic predisposition is the first "hit," and a triggering event, such as an infection or trauma, is the second "hit" that activates the condition. Not everyone with a genetic predisposition will develop POTS, and many factors are still not fully understood.

How Dr. Boris Treats POTS

Dr. Boris takes a comprehensive and individualized approach to treating POTS. His first step is obtaining a detailed medical history to identify any comorbid conditions that may be present. POTS patients often have other related conditions, such as joint hypermobility, mast cell activation syndrome, small fiber neuropathy, and more. By understanding the full scope of a patient's health, Dr. Boris can tailor a treatment plan that addresses all contributing factors.

Validation and Education

One of the most important aspects of Dr. Boris's approach is validating the patient's experience. He acknowledges that POTS is a complex and poorly understood condition, and he emphasizes that it is not the patient's fault. He educates patients about the current state of knowledge regarding POTS, including the possibility of an autoimmune basis, though this has not yet been proven.

Non-Pharmacologic Interventions

Dr. Boris emphasizes the importance of non-pharmacologic interventions as the foundation of POTS management. These include increasing fluid and salt intake, elevating the head of the bed, using compression garments, and employing cooling techniques. While these strategies may not work for every patient, they are essential components of the overall treatment plan.

Pharmacologic Interventions

When it comes to medication, Dr. Boris takes an individualized approach, focusing on the patient's three most debilitating symptoms. He avoids a one-size-fits-all approach, recognizing that each patient's needs and responses to treatment are unique. By targeting the most severe symptoms, he aims to improve the patient's overall functionality and quality of life.

Exercise and the Levine Protocol

Exercise is a critical component of POTS management, and Dr. Boris uses a modified version of the Levine Protocol, an eight-month exercise program designed for POTS patients. The protocol gradually increases the intensity and duration of exercise, starting with recumbent exercises (such as cycling or rowing) and progressing to upright activities. The goal is to build tolerance and improve cardiovascular fitness without exacerbating symptoms.

For patients who are severely debilitated, Dr. Boris tailors the exercise program to their current capabilities, starting with simple activities like sitting up or standing for short periods and gradually increasing as tolerated. The key is to avoid triggering a post-exertional crash, where the patient is incapacitated for days after exercising.

The Importance of a Multidisciplinary Approach

While Dr. Boris practices solo, he recognizes the importance of a multidisciplinary approach to managing POTS. Depending on the patient's needs, he may refer them to other specialists, such as neurologists, gastroenterologists, or physical therapists, to address specific symptoms or comorbid

 conditions. Collaboration with other healthcare providers is essential for comprehensive care.

The Role of Lifestyle Modifications

In addition to exercise and medication, lifestyle modifications play a significant role in managing POTS. Dr. Boris advises patients to avoid prolonged standing, stay cool in hot weather, and pace themselves throughout the day to avoid overexertion. He also encourages patients to listen to their bodies and rest when needed, recognizing that POTS can be an unpredictable and fluctuating condition.

The Long-Term Outlook for POTS Patients

The long-term prognosis for POTS patients varies widely, with some patients experiencing significant improvement over time and others continuing to struggle with symptoms. Dr. Boris emphasizes that POTS is a chronic condition that requires ongoing management and that relapses are common, particularly in response to stress or illness.

However, with appropriate treatment and lifestyle modifications, many patients can achieve a good quality of life and return to their normal activities. Dr. Boris is optimistic about the future of POTS research, with ongoing studies aimed at better understanding the underlying mechanisms of the condition and developing more effective treatments.

Dr. Boris's Message to POTS Patients

Dr. Boris's message to POTS patients is one of hope and empowerment. He acknowledges that living with POTS can be incredibly challenging, but he emphasizes that patients are not alone. There is a growing community of healthcare providers, researchers, and patient advocates working to improve the understanding and treatment of POTS.

He encourages patients to be proactive in their care, educate themselves about the condition, and advocate for their needs. Dr. Boris also emphasizes the importance of self-compassion, recognizing that POTS is a complex and unpredictable condition that can take a toll on mental and emotional well-being.

In conclusion, Dr. Boris's approach to POTS is holistic, patient-centered, and grounded in the latest research. By validating the patient's experience, focusing on individualized care, and incorporating a range of therapeutic strategies, he aims to help POTS patients achieve the best possible outcomes and lead fulfilling lives.