For children and young adults with autonomic dysfunction (AD) and postural orthostatic tachycardia syndrome (POTS), a holistic treatment approach is important to improving functionality and quality of life. We provide multidisciplinary care in the Autonomic Dysfunction (AD) Clinic at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Our clinic is one of the only pediatric AD clinics in the Southeastern United States.

What is autonomic dysfunction?

The autonomic nervous system (ANS) regulates many of our automatic processes, such as blood pressure, breathing, digestion, and other functions we do not consciously think about. It also helps us feel and process sensations like hunger, happiness, anxiety and temperature. Autonomic dysfunction (sometimes called dysautonomia) describes a general state where the ANS is not functioning and communicating between organ systems as expected.

Postural orthostatic tachycardia syndrome (POTS) is one of several disorders that fall into the category of autonomic dysfunction. Patients with AD can experience inappropriate heart rates, stomach problems, brain fog, fatigue, dizziness, lightheadedness, temperature intolerance, and other symptoms. Mood disturbances like anxiety and depression, and attention issues, such as ADHD, are also common in AD.

AD and POTS can be difficult to diagnose. We have the expertise to recognize and appropriately diagnose our patients so they can receive the care that best meets their needs.

What causes autonomic dysfunction?

We’ve found through our experience and research that there is rarely a singular cause of autonomic dysfunction. This is part of what can make diagnosis and treatment challenging. Anything that causes dysregulation to the autonomic nervous system, such as an infection, an autoimmune response, and/or a traumatic life event, can lead to AD.

Additionally, disruption to other organ systems or bodily processes, including emotional disruption, can put stress on the autonomic nervous system and make it more susceptible to dysregulation.

How is postural orthostatic tachycardia syndrome (POTS) diagnosed?

Postural orthostatic tachycardia syndrome (POTS) is one of the most well-known disorders of the autonomic nervous system. In youth, specific criteria are needed for diagnosis including an increase in heart rate of 30-40 beats per minute during performance of orthostatic vital signs (changing positions from lying to sitting to standing) without a significant decrease in blood pressure.

However, diagnosis of POTS requires more than just identification of an increase in heart rate with position change. Individuals with POTS will also have abnormalities in other organ systems the autonomic nervous system is involved in regulating. Notably, patients do not have to have a diagnosis of POTS to experience challenging and impairing symptoms of AD.

Our Approach to Treatment

Our team includes cardiologists, a psychologist, an exercise physiologist, and a nurse practitioner, providing our patients with multidisciplinary care to maximize their quality of life while managing their condition.

Research shows there is often a combination of factors that contribute to a patient’s AD. While no two patients experience AD the same, we have found multidisciplinary treatment using a combination of three core strategies to be helpful in most cases and result in the best long-term outcomes.

Consistent hydration and salt

Consistent and adequate fluid and salt intake has been shown to help with many of the common AD symptoms, such as dizziness and fainting (syncope). We work with patients to set goals for daily fluid (water and electrolytes) intake, as well as salt (sodium) intake, which can be achieved by adding it to food or using salt supplements, such as tablets or electrolyte additives. 

Physical activity

An individually appropriate exercise regimen performed consistently has been proven to be an essential part of re-integrating the ANS and cardiovascular system, and increasing cardiovascular conditioning is one of the strongest predictors of long-term symptom improvement. Our exercise physiologist works with our patients to develop exercise plans that are right for them.

Mental wellness

Many individuals with AD deal with anxiety or other mood disturbance. For some, the mood disturbance was present before other symptoms of AD and for others, the mood challenges may have developed due to living with the complex symptoms of AD. Unfortunately, some individuals with AD and POTS have been told their symptoms are solely due to anxiety or depression. We know this to not be true; however, untreated or under treated mood disturbance will make it difficult to significantly improve ANS functioning and will often worsen symptoms of AD and POTS. We know that the psychological mind and physical body do not operate independently of each other, so coping activities are critical to adjusting to and managing symptoms.

Additional treatments as needed

Once these strategies have been implemented, we may add supplemental therapies, such as medications, that can be helpful in reducing specific symptoms, depending on the patient’s individual needs.

It is also important to identify other sources of abnormal input into the autonomic nervous system from other organ systems. Conditions like anemia, thyroid disease, autoimmune disorders, chronic infections, and sleep disorders can stimulate the ANS in abnormal ways, resulting in development of symptoms similar to those of autonomic dysfunction and POTS. Over time, if some of these conditions are not identified and addressed, they can result in changes to how the ANS functions and processes signals. Our team monitors patients for signs of these conditions and can provide referrals to related specialists at Johns Hopkins All Children’s as needed.