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POTS: Mysterious Syndrome Causes Racing Heart and Other Symptoms

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Jumping out of bed in the morning and going about your day is something most people don’t think twice about. But what if the very simple act of standing up left you with a racing heart, dizziness – or even caused you to faint? These and other scary symptoms are the reality for people with postural orthostatic tachycardia syndrome, or POTS.

This little-known syndrome is actually quite common, affecting about one in 500 people, mostly women, between the ages of 15 and 50. But because it is not well known among the medical community, it is underdiagnosed. Many people with POTS are otherwise young and healthy, so when they start experiencing a range of symptoms, from fatigue and lightheadedness to GI complaints such as nausea, doctors are often stumped.

POTS has an average delay in diagnosis of nearly six years from the onset of symptoms, which frequently start in late adolescence or early adulthood. Many times, patients will see a variety of doctors and be misdiagnosed multiple times before getting a POTS diagnosis. The symptoms may be incorrectly attributed to depression or anxiety, or they may be written off entirely.

Once POTS is diagnosed, many patients find relief in knowing that the symptoms were not “all in their head.” They will also find relief in knowing that there are a variety of treatment options that can help manage their symptoms.

What Is POTS?

In simple terms, POTS is a group of symptoms that frequently occur when a patient goes from lying down to a standing position, the most prominent being a significant increase in heart rate. This blood circulation disorder falls under the broader category of dysautonomia, or autonomic nervous system dysfunction. POTS affects the body’s ability to pump blood from the legs to the rest of the body while standing. This lack of blood to the brain and other organs can cause a variety of symptoms, including:

  • Fainting
  • Fatigue
  • Brain fog
  • Inability to speak
  • Hot and cold spells
  • Weakness
  • Headaches
  • Blurry vision
  • Tremors
  • Nausea
  • Stomachaches and other GI symptoms

A person with POTS may feel chronically tired or rundown and experience any combination of these symptoms. POTS symptoms are also on a spectrum ranging from very mild and sporadic to extremely debilitating.

What Causes POTS?

Researchers are still not entirely clear on what causes POTS; it has only been recognized as a unique syndrome for about 30 years and studies on the condition are limited. In most patients, the structure of the heart is normal; symptoms instead are thought to arise from a lower volume of blood circulating in the body, excessive pooling of the blood below the heart when upright, and elevated amounts of certain hormones such as epinephrine (adrenaline) or norepinephrine.

There is some evidence that the onset of symptoms can be triggered by infections, both bacterial and viral. In fact, recent reports show POTS being diagnosed in patients who contracted COVID-19.

POTS is diagnosed using a standing test or a tilt table test. With a tilt table test, the patient will lie horizontal on the tilt table for several minutes while heartrate and blood pressure are continually monitored. Then the table will be tilted upward at an angle for several minutes. POTS may be diagnosed if the heartrate increases 30 beats per minute (BPM) in adults over age 20, or 40 BPM in adolescents ages 12 – 19. It should be noted that POTS is diagnosed only once orthostatic hypotension – or a significant drop in blood pressure while standing – is ruled out.

Your doctor may also order tests to rule out other conditions with symptoms similar to POTS – such as hyperthyroidism, dehydration, recurrent vasovagal syncope (fainting due to certain stress triggers) or chronic fatigue syndrome.

Exercise, Diet and Medication to Treat POTS

While there is no cure for POTS, there are treatments available that can help manage symptoms and improve quality of life. Exercise training is one of the most commonly prescribed therapies and is very beneficial for improving POTS symptoms. Patients can start with activities that don’t involve being upright – such as swimming or using a rowing machine or stationary bike – to avoid exacerbating their symptoms.

Other lifestyle changes include increasing fluid intake and adding extra salt to your diet, both of which have been shown to decrease POTS symptoms, and wearing compression stocking to help with blood circulation.

While some POTS patients can manage symptoms with lifestyle changes alone, others may be prescribed medications. Beta blockers are often prescribed, which work to slow the patient's heart rate. Another commonly prescribed medication is midodrine, a vasopressor and antihypotensive drug that tightens blood vessels to increase blood pressure.

POTS is condition that sadly goes undiagnosed for too long in many patients. But with a proper diagnosis and treatment plan, patients who have been plagued by the mysterious symptoms – often for years – can regain control over their lives.

Related Links

The neurology experts at University Hospitals provide specialized care for POTS and other autonomic nervous system and neurological disorders.

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