Postural Orthostatic Tachycardia Syndrome (POTS) (FAQ)

Answers to questions families often have about caring for their child with postural orthostatic tachycardia syndrome (POTS)

Postural orthostatic tachycardia syndrome (POTS) is a condition that develops mostly in adolescents and includes chronic fatigue, dizziness, increased heart rate upon standing, and, often, abdominal discomfort or other forms of chronic pain. The symptoms of POTS are caused by problems with the autonomic nervous system (dysautonomia). The autonomic nervous system controls many of the body’s functions—heart rate, breathing, digestion, and other body processes. POTS is the most common type of dysautonomia.

The onset of POTS symptoms may be triggered by an injury or illness but the cause of the problems with the autonomic nervous system is unknown.

Typical symptoms in POTS include:

• Light-headedness or dizziness when standing that improves when laying down
• Tiredness, fatigue, lack of energy that lasts for 3 months or longer
• Dizziness and/or fainting when standing
• Nausea or other abdominal discomfort
• Poor temperature regulation that may lead to heat intolerance
• “Brain fog” – the feeling that they can’t think clearly or remember things
• Chronic pain
• Momentary loss of eyesight or seeing black

Some patients will also have anxiety or depression, which may be because of the other symptoms.

The diagnosis is based on the symptoms, history, and physical exam. Finding an increase in the heart rate of 40 beats per minute or more when standing after having been lying down is a typical finding. There are no x-rays or blood tests that help with diagnosis. Diagnosis may be delayed, largely because POTS is not thought of as a cause of the symptoms.

Most patients with POTS will improve with treatment. Improvement of symptoms will be gradual over months to years; most patients can return to activities in a few months. Daily lifestyle changes and management may be needed for recovery.

POTS is a chronic condition; as of right now there is no known cure. It can be managed with medications and lifestyle changes.

POTS is not contagious and does not spread to others. About 15% of patients with POTS have a first-degree relative with POTS but the risk to future children is not known – POTS was first described in the early 1990s, so no long-term studies have looked at that risk.

POTS is mainly managed with:

1. Increasing fluid intake, aiming for clear-looking urine
2. Increasing salt and other electrolyte intake, aiming to stop the dizziness
3. Compression pants or stockings may help some patients
4. Exercise to rebuild strength and stamina – this is key to recovery
5. Cognitive Behavioral Therapy (CBT) – a form of counseling/therapy – is very important to help with making the needed changes in lifestyle
6. Medications may be helpful for some patients
   • Medications to help the body retain fluid and salt (corticosteroids)
   • Medications to help control blood flow and heart rate
7. Treatment for depression and/or anxiety if present, which may involve
   • Counseling
   • Medications, like antidepressants
8. Raising the bed at the head so that the entire bed is on an incline can help

Adapting to your child’s fatigue, discomfort, and inability to participate actively in school, recreation, and family life can be hard. Learning how to support your child in taking in more fluids and salt and in exercising despite their fatigue is key. Working with their school and other activities to adapt expectations while encouraging progress takes time and energy.

Research on POTS is ongoing; there is still a lot that needs to be learned about this condition. Because of this, doctors may not think of POTS right away as a cause of symptoms, and many tests may be needed to rule out other causes. Because researchers are still working to understand POTS, there may be few specialists available to treat it. Learning what you can about the condition and talking about this information with your child’s doctor may help with diagnosis, management, and treatment of POTS. It can also be helpful to keep a Care Notebook with test results, notes, and other information related to your child’s condition.