Living with POTS: Postural orthostatic tachycardia syndrome self-care

According to Johns Hopkins Medicine, between 1 and 3 million people in the United States live with postural orthostatic tachycardia syndrome (POTS). POTS is characterized by a group of symptoms that occur when you change positions, such as from sitting to standing. While there's no cure, understanding postural orthostatic tachycardia syndrome self-care can help you manage the symptoms.

What is POTS?

To understand POTS, it's important to look at what each word means individually:

• Postural: Your body's position
• Orthostatic: Related to standing upright
• Tachycardia: Increased heart rate (over 100 beats per minute)
• Syndrome: A group of symptoms that occur together

The cause of POTS is unknown, but experts are learning more about the condition, says Dr. Alison Bailey, cardiologist and national physician director for cardiac disease at HCA Healthcare, our larger network.

"In general, POTS is a dysregulation of the autonomic system," Bailey says. "Your brain, heart and blood vessels need to function in sync to keep you from getting dizzy when you make position changes or exercise. But with POTS, there's some abnormality in that cycle that prevents this from occurring."

What are the symptoms?

Common POTS symptoms include increased heart rate, lightheadedness, trouble thinking and concentrating (brain fog), headache, heart palpitations and nausea. Other symptoms may include:

• Chest pain
• Dizziness
• Instability (feeling like you're about to fall)
• Fatigue
• Breathlessness

Who's at risk for POTS?

Anyone can develop POTS, but it's most common in women between the ages of 15 and 50. Some women experience more frequent symptoms before their period. POTS may also appear right after a pregnancy, major surgery or other health event. The condition may also have some association with connective tissue disorders such as Ehlers-Danlos syndrome.

POTS also tends to occur after a viral syndrome. In fact, Bailey explains that there has been a sharp increase in this condition, starting during the COVID-19 pandemic. POTS shares similarities with another syndrome called post-acute sequelae COVID cardiovascular syndrome (PASC-CVS), which has a wide range of cardiovascular symptoms.

How is POTS diagnosed?

Most people with POTS go to the doctor because they're experiencing dizziness, heart palpitations or a fast heart rate. But these symptoms can occur with conditions like anxiety, which may lead to a misdiagnosis.

"Patients and physicians can confuse the symptoms of POTS with a number of medical conditions. In addition, POTS can often be incorrectly attributed to anxiety and other behavioral conditions. As a result, it’s important to perform an appropriate medical evaluation," says Dr. Steven Manoukian, cardiologist and HCA Healthcare senior vice president and fellow of the American Heart Association. "Only after a thorough assessment of a patient’s symptoms can an accurate diagnosis be made."

Given its similarities to anxiety and other conditions, POTS may be a diagnosis of exclusion. “You need to think of it to diagnose it, so seeing a cardiologist may be helpful,” Manoukian adds. Since people with POTS tend to be otherwise healthy, its diagnosis may not be top of mind for most doctors.

"With POTS, patients may feel frustrated because they've had multiple episodes, perhaps over a long time and been told various things by numerous doctors. It often takes some time for patients to be heard and routed to the right doctor," he says. Patients often go to the emergency room and leave without a diagnosis because it's not on the shortlist of diagnoses and therefore not considered.

"A big part of being a doctor is being a little bit of a detective, and, at the same time, listening to the patient and not letting biases you might have influence what you think," Manoukian says.

If your doctor does suspect POTS, they'll confirm the diagnosis using either an office-based test with vital sign measurements during position changes or a head-up tilt table test. During these tests, they measure your heart rate, blood pressure and blood oxygen levels. Your doctor may suggest an echocardiogram or magnetic resonance imaging (MRI) scan of the heart. These tests can determine whether your heart is structurally sound and rule out abnormalities of your heart.

How is POTS treated?

Postural orthostatic tachycardia syndrome self-care is the main treatment for POTS. According to Johns Hopkins Medicine, this includes drinking about 2 to 2.5 liters of fluid a day and increasing your sodium intake from the saltshaker, salt tablets and healthy food sources, such as certain fruits and vegetables. Sodium helps keep water in the bloodstream, helping more blood reach your brain and heart. Self-care also includes avoiding stimulants like alcohol, which diverts blood from central circulation, and caffeine for some people.

Seated exercises, such as rowing machines or recumbent bikes, can also be beneficial for treating POTS. From there, gradually work your way to upright exercises. POTS symptoms can get worse with exercise, so start any exercise routine slowly and gradually increase intensity based on your tolerance.

Depending on what your doctor suspects to be the cause, they may prescribe medication. Medications for POTS are prescribed on a case-by-case basis and tend to focus on improving blood volume and helping the kidneys retain sodium.

Advocating for your health

Most people recover from POTS, especially if it begins after a viral illness. However, it can come back just as unexpectedly. Even if you're not having symptoms at the moment, that doesn't mean POTS is completely gone.

Patients who think they may have POTS shouldn't be afraid to advocate for themselves or seek a specialist, Manoukian says.

"Trust yourself, trust your symptoms," he says. "If you're not confident that your doctor has made the right diagnosis, don't give up trying to find the right one. Above all else, physicians need to be compassionate, compulsive and capable; it’s what I call the three C’s and it’s especially critical for diagnosing POTS.”