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6 FAQs about POTS, a debilitating chronic condition that many people develop after a bout of long COVID

Business Insider India logo Business Insider India 28-09-2022 Emily Swaim,Jason McKnight
6 FAQs about POTS, a debilitating chronic condition that many people develop after a bout of long COVID © Aitor Diago/Getty Images 6 FAQs about POTS, a debilitating chronic condition that many people develop after a bout of long COVID
  • As many as one in seven people with long COVID develop POTS, according to emerging research.
  • Common symptoms of both conditions include persistent fatigue, brain fog, and exercise intolerance.

Long COVID affects 1 in 13 adults in the US, according to the most recent statistics from the Centers for Disease Control and Prevention (CDC). And many people with long COVID develop a condition called postural orthostatic tachycardia syndrome, or POTS.

Medical term: Experts use "long COVID" as an umbrella term for health conditions that last at least 12 weeks after a SARS-COV-2 infection.

POTS is a type of dysautonomia, or disruption of basic bodily functions like heartbeat and breathing.

POTS symptoms are most noticeable when you change body position. After sitting or standing up, you may experience:

Given how widespread SARS-COV-2 has become, more people are developing POTS than ever before.

POTS can have a major impact on your quality of life, but recognizing the signs can help you get the right diagnosis and treatment.

Note: Long COVID is more common in adults, and women are 22% more likely to develop it. POTS cases are even more skewed by gender, with four in five cases affecting women ages 15-50. However, both conditions can affect people of any age or gender.

1. Can long COVID lead to POTS?

Up to one in seven people with long COVID go on to develop POTS.

And contrary to popular belief, you don't need to have a severe case of COVID-19 to develop long-term complications. In one Cleveland Clinic study, 38 out of 39 POTS patients had a mild case of COVID-19. Even asymptomatic COVID-19 infections can cause POTS.

Of course, POTS doesn't only show up with long COVID. It's the most common form of dysautonomia in the United States, affecting one to three million Americans.

"Even before COVID, a majority of POTS patients developed POTS following a viral or bacterial infection. We didn't call this Long EBV, Long Influenza or Long Mycoplasma. We just called it POTS if people met the POTS criteria," says Lauren Stiles, research assistant professor of neurology at Stony Brook University and President of Dysautonomia International.

2. Does POTS raise your risk of long COVID?

There isn't enough research yet to tell whether pre-existing POTS can increase your chances of developing long COVID.

That said, having any respiratory condition before infection raises your risk of long COVID by 43%. And since more than 65% of people with POTS have some kind of breathing difficulty, the condition may increase the risk of long COVID.

In addition, a bout of COVID-19 can temporarily exacerbate your POTS symptoms. You may feel more tired or dizzy than usual during the infection period or for a few weeks afterwards. However, this increase in symptoms is usually temporary — it's not the same as long COVID.

3. Did COVID-19 cause my POTS?

It can be hard to tell whether your POTS symptoms are caused by COVID-19, another infection, or a different condition entirely.

Long COVID often proves particularly difficult to diagnose, for two main reasons:

  • Your symptoms may show up months after the original infection.
  • No laboratory test can officially diagnose long COVID.

In general, though, if you develop POTS symptoms after a COVID-19 infection, and you can't explain them better via another diagnosis, then they are likely due to long COVID.

When COVID-19 triggers POTS, your symptoms may differ slightly from the average POTS symptom profile. You are:

  • More likely to have perpetually high adrenaline levels that make you feel "on edge"
  • More likely to have sleep issues
  • Less likely to have nerve damage, which can cause numbness or tingling in your hands and feet

4. What are the symptoms of COVID-related POTS?

Both long COVID and POTS symptoms can vary quite a bit from person to person.

Your symptoms could be irritating but otherwise mild, or they could completely disrupt your ability to function in daily life. What's more, symptom severity may wax or wane depending on your activity level.

When people with COVID-related POTS overexert themselves, they can develop something called a post-exertional crash, or "push crash," says Sunjya Schweig, MD, Founder and President of the California Center for Functional Medicine.

A push crash can last hours, days, or even longer, Schweig says.

Note: This symptom flare, also known as post-exertional malaise, may also happen with long COVID, whether you have POTS or not.

"For many, it is very hard to predict what level of activity is feasible," Schweig says.

One day, a walk to the mailbox can feel perfectly doable. But the next day, that same walk could have you lying exhausted on the couch for an hour afterward. These ever-changing symptoms can greatly disrupt your career and financial health.

Evidence suggests both long COVID and POTS may have a significant impact on your ability to work:

  • A Lancet study found 46% of people with long COVID needed to reduce their hours to continue working.
  • A Dysautonomia International survey found 72% of people with POTS needed job modifications, including cutting back their hours, to continue working.

While it's too early for experts to assess the recovery time needed for COVID-related POTS, research on POTS suggests 80% of people eventually notice improvement in their functioning. You may have residual symptoms, but treatment can help improve your quality of life.

5. What are the potential causes of COVID-related POTS?

Experts don't yet know why so many people with long COVID develop POTS.

One theory suggests the SARS-COV-2 virus directly damages your cardiovascular system. The virus has been shown to damage ACE2 proteins, which your body needs to regulate its blood pressure.

Another theory focuses on inflammation. Many people with COVID-related POTS have pre-existing inflammatory conditions, including:

The virus may dial up your body's already-high inflammation to extreme levels, creating a "hyperactive" nervous system. This may explain why POTS causes problems all across the body, not just in your cardiovascular system.

Why is POTS often misdiagnosed as anxiety?

POTS, especially COVID-related POTS, may cause a hyperactive fight-or-flight response. In fact, many people with this condition are first diagnosed with an anxiety disorder, since symptoms like a racing heartbeat or breathlessness can resemble panic attacks.

However, older 2008 research suggests people with POTS have roughly the same rates of anxiety disorders as the general population.

People with long COVID and POTS are frequently dismissed as having health anxiety rather than a medical condition. Consequently, it may take more time for them to get the right diagnosis and treatment. In fact, people with POTS wait an average of two years, according to pre-pandemic research.

6. What does treatment involve?

If you notice signs of long COVID or POTS, you'll want to connect with a healthcare professional as soon as possible.

Your doctor will likely recommend the tilt table test to diagnose POTS. For this test, you'll be strapped to a table that swivels from flat to upright. If your heart rate increases by 30 beats per minute within the first 10 minutes of standing, you may have POTS.

"Research is underway to try to develop more targeted treatments, but right now long COVID POTS is treated the same way all POTS is treated," Stiles says.

Here are the three main forms of treatment for POTS:

1. Non-pharmacological treatments

Non-drug interventions are often the first line of treatment. Current POTS guidelines recommend:

  • Compression socks: These apply pressure to your legs so blood won't pool in your feet when you stand.
  • Counterpressure maneuvers: These moves can increase your blood pressure and prevent fainting. A common one is crossing your legs and tensing the muscles in them.
  • Avoiding excessive physical activity: Any prolonged exertion can prompt a push-crash, even if most people wouldn't consider the activity "intense." Listen to your body, and don't hesitate to take breaks when you need them.
  • Levine protocol: This form of physical therapy involves gentle exercises in a horizontal or sitting position.

Quick tip: One exercise you can try at home is the straight leg raise. Lie on your side, with the bottom leg slightly bent and your top leg straight. Slowly lift your top leg 8-12 inches, then bring it back down. For a bit more of a challenge, you can add an elastic exercise band around your thighs for resistance.

2. Medications

Stiles says a majority of people with POTS also typically require one or multiple of the following medications:

  • Beta blockers or ivabradine to slow down a fast heart rate.
  • Midodrine, a vasoconstrictor that narrows blood vessels.
  • Fludrocortisone, which expands blood volume.
  • Pyridostigmine, which reduces inflammatory markers known to be elevated in POTS.

Important: Check in with your doctor before adding any vitamins or supplements to your care regimen, as these can sometimes interact with prescription medications.

3. Support groups

Communities of chronic illness survivors have a rich tradition of sharing knowledge and resources with one another.

Many people also find the emotional support and validation they gain in these groups quite healing.

If you have COVID-related POTS, you may find it helpful to check out:

  • Body Politic: Body Politic describes itself as a queer feminist wellness collective, and the organization offers a support group for anyone with long COVID conditions, including POTS.
  • Dysautonomia International: This organization has support groups in every state and in countries around the world. The POTS Pals Program is one of the few support groups intended for children under 13 with POTS.
  • Dysautonomia Support Network: This nonprofit offers four regional support communities in the United States. Anyone with dysautonomia can join.
  • Standing Up to POTS: This nonprofit is specifically for people with POTS. It has one support group for teens and one for adults.

Insider's takeaway

Long COVID may contribute to POTS, a condition where your body has trouble regulating its own heart rate and blood pressure when you change posture. POTS can cause a variety of symptoms, from fainting to fatigue, and it can seriously interfere with day-to-day functioning.

Because long COVID is a fairly new phenomenon, researchers are still learning a lot about COVID-related POTS, including the long-term outlook for this condition.

Research may be limited at the moment, but treatments do exist, and they can go a long way toward improving your overall health and quality of life. A healthcare professional can offer more guidance and help you explore your treatment options.

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