What to Know About POTS, a Condition Marked by Dizziness and Fatigue That’s Often Misdiagnosed

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Back in 2014, Hailey Hudson was a healthy, active 16-year-old. She worked out several days per week and played competitive softball. Despite having Ehlers-Danlos syndrome (EDS), which caused her to have hypermobility in her joints, “I was in the best shape of my life,” she tells SELF.

Around that time, Hudson underwent surgery for her condition. During her first practice back after the operation, things felt…off. “I was running the bases and couldn’t breathe. It felt like my throat was closing up. I was dizzy and had spots in my vision,” she recalls. As the season went on, things got more intense. She continued feeling dizzy at practice but also developed debilitating fatigue once she got home.

Hudson was misdiagnosed with anemia, asthma, generalized chronic fatigue, fibromyalgia, and anxiety before learning what was actually happening: She had postural tachycardia syndrome (POTS)—a blood circulation disorder that affects your heart rate when you change positions (like going from sitting to standing). It can happen to anyone, but is way more common in women between 15 and 50.

POTS isn’t rare—about 1 to 3 million people in the US had it in 2019—and it seems to be on the rise, although actual numbers are hard to come by. The cause is unknown, but it can happen suddenly after a major health event, like surgery (as in Hudson’s case), pregnancy, puberty, or a bacterial or viral infection. That last one is a biggie given that research suggests some people can develop POTS after COVID, and an estimated 186 million people in the US have been infected with SARS-CoV-2.

“We have seen a huge uptick in people with this disorder, mostly women,” Robert Wilson, DO, a neurologist who leads the Cleveland Clinic’s POTS division, tells SELF.

It can be debilitating, and it has no cure, although a combo of lifestyle modifications and medications can help. But all too often, health care professionals mistake the symptoms for other issues. Here’s everything you need to know about POTS, including how to spot its symptoms and when to seek help.

What is POTS?

POTS is an acronym that stands for postural orthostatic tachycardia syndrome. It messes with your arteries’ ability to contract properly, which is known as vascular tone. As a result, “these people really cannot maintain blood flow,” Dr. Wilson notes. Nikki Bart, MD, PhD, a cardiologist at St. Vincent’s Hospital Sydney, tells SELF that POTS can interrupt some bodily functions you can’t control, like your heart rate, blood pressure, and body temp.

Normally when you stand up, gravity pulls the blood down to your legs, Dr. Bart explains, and your nervous system senses and corrects for that by getting your blood pumping up to your head. But if you have POTS, that doesn’t happen. “You might get this pool of blood in your legs and not enough blood to your brain, so you feel lightheaded, dizzy, or have palpitations,” she notes.

What are the symptoms of POTS?

This condition can manifest in subtle ways and masquerade as other conditions. For Hudson, it took six years after her first symptoms appeared before she was correctly diagnosed. Here are some things that doctors see:

Fainting or dizziness, especially when standing up or staying in one position for a while

Because your body has a hard time moving blood around, when you maintain a certain posture for too long or switch things up suddenly, you might feel super dizzy or like you’re about to faint. Typically, this feeling will go away once you lie down.

Sleep problems

Dr. Wilson says that people with POTS frequently have issues with their sleep. The prolonged horizontal posture can be a problem, and it can lead to insomnia, sleep disturbances, and daytime sleepiness as a result.

Fatigue and brain fog

If you have POTS, you may not get dizzy or faint, but you most likely will feel physically and mentally depleted, Dr. Wilson explains. “Fatigue has always been my worst symptom,” Hudson explains. “It affects my daily functioning in so many ways. I struggle to drive and walk through stores or down the street.” Unfortunately, Dr. Wilson says this symptom is often overlooked by health care providers. “If you wait for someone to faint, you’re going to miss [the diagnosis].” You might also have problems processing info in general—a.k.a. brain fog. “These people often have a mass reduction in their work production. You see a severe impact on their daily function,” Dr. Wilson notes.

A racing heart or shortness of breath

If your blood pools in your lower extremities and can’t work its way back up quickly when you stand, your heart (rightfully so!) freaks out a bit and works extra hard to get some circulation to your brain. This can result in a heart rate increase of more than 30 beats per minute (bpm), or a total heart rate exceeding 120 bpm within 10 minutes of standing up, per the National Institutes of Health (NIH). (That’s the tachycardia part, which essentially means that your heart is beating way too fast.) Palpitations can also happen after you lie down, and you might also feel a sense of breathlessness. A racing heart can also happen at night, which can contribute to your sleep troubles.

Feeling anxious

Dr. Wilson points out that POTS is frequently misdiagnosed as anxiety. That’s because when you have a racing heartbeat that’s paired with fatigue, you become what he calls “wired and tired.” “You feel like you have the flu, but also like you’re over-caffeinated. Your blood pressure is dropping, then the body overcompensates to fix that,” he says. These symptoms can mimic those of anxiety, especially if a doctor can’t determine any other causes.

Here are a few other common POTS symptoms:

  • Increased sweating

  • Issues with your bowels or nausea and vomiting

  • Skin discoloration (especially bruising) on your feet or legs

  • A sensitivity to heat and having a harder-than-usual time exercising due to shortness of breath

Diagnosing POTS can be tricky.

Since POTS isn’t technically life-threatening, if you’re fatigued or fainting, have a racing heartbeat, a doc will likely scan you for other, perhaps more immediately dangerous, things before considering POTS. During this process, Dr. Bart says it’s common for them to examine you for heart disturbances and give you tests to rule out other issues.

If they suspect POTS, your doctor (either a primary care physician, neurologist, or cardiologist) may perform something called a tilt-table test, where you lie on a (literally) tilting table while a health care provider measures your heart rate and blood pressure. If your readings are abnormal or your symptoms get worse in response to changing positions, there’s a chance you have it. They are more likely to diagnose you with POTS if you’ve been feeling wonky for months and may order other heart and nervous system tests to confirm it’s not something else. Again, no one really knows what causes POTS, but researchers have noticed a connection between having an autoimmune condition, like Sjögren’s syndrome, and developing POTS. In addition, people with connective tissue disorders, like Hudson’s EDS, are also much more likely to develop POTS. (It’s thought that anywhere from 40% to 70% of people with hypermobility or EDS have the condition.)

Dr. Bart says that experts also don’t know why people assigned female at birth are more likely to have the syndrome, but there are some theories. “The hormones experienced during pregnancy, perimenopause, and then menopause—all of those things can affect the autonomic nervous system and the cardiovascular system,” she explains. POTS symptoms may also get worse before or during your period.

POTS is manageable with lifestyle changes and medications.

There are certain things you can do to make the condition a little easier to live with, experts say. Here’s a breakdown:

1. Try POTS-friendly exercises

Building strength, particularly in your midsection and legs, is super helpful, per Dr. Bart. “Reclined aerobic exercise, like swimming, rowing, or sitting on a bike, really benefits your core and leg muscles,” she explains, adding that the recumbent nature of these activities avoids the posture problem. Plus, if you’ve got stronger legs, your body has an easier time pumping blood back up to your brain and heart, Dr. Bart notes. She says that walking can also be a solid exercise choice too—just make sure you’ve got the green light from your doc first, especially if you’re going to cover long distances alone. Physical therapy can be a helpful alternative if doing these things feels like too much (which is the case for Hudson).

2. Snack on salty foods and sip lots of liquids

Dr. Bart often advises people with POTS to up their sodium intake. “Salty snacks are really important in a POTS diet,” she notes. This is because it might help you keep more water in your bloodstream and get blood to your heart and brain faster. A person with POTS should also be drinking a lot of water—roughly 2 to 2.5 liters per day. Alcohol and caffeine can sometimes make symptoms worse, Dr. Bart adds.

3. Tweak your sleep habits

“Lying flat can be really challenging for people with POTS, so we often encourage patients to raise the head of their bed and try to get enough sleep in general,” Dr. Bart says. You can consider putting blocks or stilts under your bed frame to raise the top of it: Aim for 6 to 10 inches, keeping the entire bed at an angle. Your body temp might ebb and flow, so sleeping with blankets that can easily be removed and keeping the thermostat as low as possible might also help.

4. Turn to medications

In some cases, a doctor might prescribe a handful of medications to help combat symptoms, including fludrocortisone (which helps you retain salt), pyridostigmine and beta-blockers (which can help with the tachycardia or fluttering heartbeat), and midodrine (which causes vasoconstriction, or the tightening of your blood vessels).

Hudson, who’s now 25, no longer plays softball. She says the only time she’s really active is when she’s in physical therapy—even with her medications and lifestyle changes, she says the syndrome still impacts her day-to-day. However, she acknowledges that her symptoms have become a lot more manageable. That’s due, she believes, to the fact that her doctors have a better understanding of the condition thanks to more conversations about it in the medical community and in the media. This might be leading to better treatment—or at least some validation that the condition is serious and can have a huge impact on a person’s quality of life.

That’s something both Dr. Bart and Dr. Wilson are particularly adamant about, as the disorder can be incredibly debilitating for a lot of people, Dr. Wilson says. “Instead of being a diagnosis of exclusion, POTS should be an inclusion. This should be top priority.”

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Originally Appeared on SELF