Postural Orthostatic Tachycardia Syndrome (POTS) is a condition where the autonomic nervous system, which functions involuntarily, does not operate correctly. POTS is characterized by an abnormal rise in heart rate (tachycardia) that occurs when someone stands up. Other common symptoms of POTS include lightheadedness, fainting, fatigue, brain fog, and nausea.
As an adolescent medicine specialist, I previously created and led a POTS program serving adolescents in Northern California. Although the cause of POTS is not entirely understood, several elements of the treatment plan are very beneficial, and I hope to share my learnings here.
My take home messages about POTS:
Management Requires a Multidisciplinary Team: People with POTS benefit from a collaborative approach involving specialists from multiple disciplines experienced in managing POTS. These specialists may include adolescent medicine specialists, pediatricians, physical therapists, psychologists, psychiatrists, cardiologists, and neurologists.
Physical Therapy is Key: An experienced physical therapist specializing in POTS is crucial for recovery.
Evaluate and Treat Eating Disorders First: Weight loss and malnutrition can also cause an abnormal rise in heart rate with standing and related symptoms. Weight restoration is an essential first step in managing these symptoms. Therefore, it's crucial to focus on treating eating disorders first and then re-evaluate to determine if a person has POTS.
Rule Out Other Conditions: Other conditions that can mimic POTS, such as iron deficiency, thyroid disease, and dehydration, should be ruled out.
Medications Play a Minor Role: The most effective treatment strategies for POTS are not pharmacological. Medications are not nearly as effective as improving sleep, doing supportive physical activity, ensuring adequate nutrition and hydration, and using cognitive behavioral therapy for pain and symptom management.
Involve the Family: Parents can play a crucial role in helping young people feel better. Managing POTS typically requires comprehensive lifestyle changes, and parents should be equipped and educated to provide the needed support.
Maintain Hope: A common and heartbreaking part of the story I often hear is a feeling of hopelessness. However, people can absolutely recover from POTS. As a wise cardiologist I used to work with would say, "this is good news." The heart and brain are healthy; in POTS, the machinery is okay, but the messaging is not. We can retrain the messaging. It takes time, but it does happen.
