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POTS: When Standing Up Causes Symptoms

woman with pots experiences dizziness

Standing up. Exercising. Thinking clearly. These are activities that most of us take for granted every day. But for those with Postural Orthostatic Tachycardia Syndrome —also known as POTS – those simple activities can feel like insurmountable obstacles.

What is POTS?

POTS is a chronic disorder of the autonomic nervous system, the part of the nervous system that controls automatic functions such as heart rate, blood pressure and digestion. People with POTS experience an abnormal increase in heart rate related to positional changes such as standing up, according to Nimrod Lavi, MD. Dr. Lavi is a clinical cardiac electrophysiologist with Yale New Haven Health and assistant professor of Cardiovascular Medicine at Yale School of Medicine.

“In adults over 19 years of age, POTS is typically diagnosed when your heart rate increases by at least 30 beats per minute within 10 minutes of standing, without a significant drop in blood pressure, over a period of at least three months,” he said, adding that the criteria for diagnosing POTS in adolescents who are younger than 19 is at least 40 beats per minute in the same time period.

The key point in the definition of POTS is that there should not be a significant orthostatic blood pressure drop upon standing, according to Dr. Lavi. “If someone has a blood pressure drop of 20 mmHg systolic or 10 mmHg diastolic or more, that meets the definition of orthostatic hypotension rather than classic POTS. However, some patients can have features of both disorders, and interpretation should be made by a clinician familiar with autonomic disorders,” he said.

What are the symptoms of POTS?

POTS is a disorder that can easily be overlooked or misdiagnosed because of the wide array of symptoms that accompany the syndrome. Symptoms can vary widely from person to person and range from mild to debilitating. They often occur shortly after standing and improve when lying down.

Common symptoms include:

  • Rapid heartbeat or heart palpitations
  • Dizziness or lightheadedness
  • Fainting or near-fainting episodes
  • Severe fatigue
  • Difficulty concentrating, often called "brain fog"
  • Headaches
  • Exercise intolerance
  • Blurred vision
  • Nausea and digestive issues
  • Weakness or shakiness

For Brighid, a 32-year-old fitness instructor from New London, the symptoms started gradually over the course of nearly two years. “I had a bunch of symptoms that didn’t connect. I was dizzy but thought it was low blood sugar. And I felt anxious and panicky, but there was no reason why I should feel that way,” she said. Other symptoms included joint pain and swelling and circulation problems in her feet.

In the end, a new watch sent her in search of answers. “I got an Apple watch, and it started giving me an alert that my heart rate was spiking when I stood up,” she said. A friend had recently been diagnosed with POTS and advised her to make an appointment for an evaluation. Testing confirmed that Brighid also has POTS.

Who is at risk for POTS?

While anyone can develop POTS, it most commonly affects women and is often diagnosed in adolescents and adults between ages 15 and 50. “Ninety percent of patients are female and of child-bearing age,” Dr. Lavi said.

It’s not known exactly what causes POTS. Researchers have found that symptoms may be associated with:

  • A viral illness
  • Pregnancy
  • Major surgery
  • Physical trauma
  • Puberty
  • Significant stress

People with a family history of POTS or certain connective tissue disorders, such as hypermobile Ehlers-Danlos Syndrome, may also be at higher risk.

Getting a diagnosis

Before receiving a diagnosis, many people with POTS endure months or even years of confusing symptoms and repeated medical visits. “There are often so many systems involved that it can be difficult to pin them together as a common problem. In addition, POTS often overlaps with the diagnoses of other conditions,” Dr. Lavi said.

To diagnose POTS, your doctor will conduct a physical examination that includes a review of your symptoms and medical history while measuring your heart rate and blood pressure while you are lying down and standing. Additional testing may also be done to rule out other causes of symptoms as well as any interconnected conditions such as Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), small-fiber neuropathy or (Median Arcuate Ligament Syndrome (MALS).

“If you have other overlapping medical issues, it can make it harder to treat POTS. Any associated conditions must be diagnosed, addressed and treated as well,” Dr. Lavi said.

Treatment and symptom management

There is currently no cure for POTS, but many patients can improve their symptoms and quality of life through a combination of lifestyle changes, exercise and medication.

“POTS can be debilitating for many patients, but rest is not the solution. Staying in bed for a long time makes it worse for your body because you start to lose muscle mass. If your symptoms are impairing your daily function, make an appointment to talk to your doctor because there are treatments that can help you manage them,” Dr. Lavi said.

Treatment plans are individualized based on symptoms and overall health, but may include:

  • Increasing fluids and salt to help maintain blood volume.
  • Compression garments that reduce blood pooling in the lower body.
  • A structured exercise program that begins with seated or recumbent exercises and progresses over time as endurance improves.
  • Some patients benefit from medications that help regulate heart rate, improve blood vessel function or increase blood volume.

For Brighid, treatment has helped but hasn’t completely eradicated her symptoms. Knowing what may trigger or worsen her symptoms has taught her how to pace herself. “There wasn't a magic fix," she said. "But now there less days where I feel like I can’t function.”

Her advice to others who are struggling with the confusing variety of POTS symptoms: Learn to advocate for yourself. “Track your symptoms and what triggers them, so you can present the doctor with a specific list of what you’re feeling and experiencing,” she said. “And if you don’t get any answers, be persistent and get another opinion. Being able to speak up for yourself is valuable and necessary.”

Learn more about the Heart and Vascular Center at Yale New Haven Health.

A young adult patient talking with a doctor

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