Medical Mystery: Could It Be POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects the autonomic nervous system. This part of the nervous system is in charge of “automatic” bodily functions like heart rate, blood pressure, and digestion. Many people with POTS discover they have it later in life, but it can happen in kids and teenagers, especially females. 

Understanding the symptoms—both obvious and subtle—is crucial for parents navigating this complex condition.

The classic symptom of POTS is an excessive increase in heart rate when moving from lying down to standing, by about 40 beats per minute. This usually happens within 10 minutes of standing and results in palpitations or feeling lightheaded.

Is there anything that triggers POTS?

While doctors aren’t sure of the exact cause, it’s often associated with viral infections, autoimmune conditions, or periods of rapid growth like puberty. Doctors also believe emotional and physical trauma is a factor, like a stressful event or a concussion.

The obvious symptoms of POTS

The most recognizable signs of POTS in children include:

• Dizziness or lightheadedness: One of the most common complaints, especially after standing up, as the body struggles to regulate blood flow.
• Rapid heart rate: A noticeable and sustained increase in heart rate after standing.
• Fatigue: Severe, chronic (doesn’t go away) fatigue that doesn’t improve with rest and can interfere with daily activities.

Some symptoms of POTS can seem like symptoms of other conditions. Here are some subtle signs to watch for:

• Digestive issues: Many children with POTS have nausea, abdominal pain, bloating, or even inflammatory bowel disease (IBD)-like symptoms. This is because the autonomic nervous system is connected to digestion.
• Temperature regulation problems: Children may struggle with feeling very hot or very cold.
• Brain fog: Difficulty concentrating, forgetfulness, and mental fatigue are common, especially in school-aged children.
• Exercise intolerance: While many kids enjoy physical activity, those with POTS often feel weak, dizzy, or exhausted after even mild exercise.
• Pale skin or skin marked with spots or colors: Poor blood circulation can cause visible changes in skin tone, especially in the hands and feet.
• Frequent headaches or migraines: Headaches, including migraines, are a common but often overlooked symptom.
• Sleep disturbances: Insomnia or unsatisfying sleep can aggravate daytime fatigue and brain fog.

Again, many of these symptoms may or may not be part of another condition. We encourage you to turn to the ones parents trust to find pediatric specialty care 100% dedicated to kids.

Why seeing a pediatric cardiologist matters for POTS

Diagnosing POTS requires specialized testing to measure changes in heart rate and blood pressure and rule out pathological arrhythmias (abnormal heart rhythm). Pediatric cardiologists with experience in autonomic disorders are best equipped to identify and treat POTS in children.

The earlier the diagnosis, the better, because untreated POTS can significantly impact a child’s quality of life. Children may miss school, struggle socially, or have anxiety about their symptoms. A pediatric cardiologist can guide you through treatment options, which may include:

• Lifestyle changes: Increasing fluid and salt intake, wearing compression garments, and doing specific exercises to improve blood flow.
• Medications: Beta-blockers, fludrocortisone, or other medications may be part of the plan to manage symptoms.
• Physical therapy and exercise: Physical therapy and biofeedback can help children regain strength and learn coping strategies.

Waiting for a POTS diagnosis? Advocate for your child. 

Work with your child on keeping a symptom diary that answers the following:

• What are the symptoms?
• When do the symptoms happen?
• What triggers them?
• Any other patterns you notice?

Bring this information to your child’s pediatrician and request a referral to a specialist if needed.

POTS can be an overwhelming diagnosis for both parents and children, but with the right care and support, most children can learn to manage their symptoms and lead fulfilling lives. Trust your instincts, stay informed, and don’t hesitate to seek out the expertise of a pediatric cardiologist to ensure your child gets the care they need.