Postural orthostatic tachycardia syndrome, also known as POTS, is a nervous system disorder that affects about 1 million to 3 million people in the U.S., according to the group Dysautonomia International.
Many people have not heard of POTS, but there’s growing awareness of the condition due to more recent media coverage of its occurrence in some people with long COVID. The majority of those with POTS are female and teens or young adults.
Symptoms of POTS
POTS can be hard to diagnose because its symptoms affect several parts of the body. One major symptom is having a heart rate that increases when going from a lying down to standing up position. In adults, it can increase by 30 beats a minute. In teens, the heart rate can increase by 40 beats.
Although your heart rate rises, your blood pressure doesn’t. As a result, this increase in heart rate is often accompanied by dizziness and lightheadedness. Those symptoms make it hard for those with POTS to tolerate many daily activities, says cardiologist Dr. Peng-Sheng Chen of the Smidt Heart Institute at Cedars-Sinai Medical Center in Los Angeles. Chen recently started a clinic for POTS patients.
Other symptoms of POTS include:
— Brain fog.
— Chest pain.
— Fainting regularly or feeling as if you’ll faint.
— Intolerance of alcohol.
— Intolerance of major changes in heat and cold.
— Not being able to exercise.
— Poor sleep.
— Shortness of breath.
What Causes Postural Orthostatic Tachycardia Syndrome?
The problem with POTS starts with the autonomic nervous system, says Dr. Jarrett Linder, pediatric cardiology attending at Ann and Robert H. Lurie Children’s Hospital and assistant professor of pediatrics at the Feinberg School of Medicine at Northwestern University, both in Chicago. This is the part of the nervous system that controls functions you can’t consciously control, such as your blood pressure, heart rate and sweating. When you have POTS, the autonomic nervous system doesn’t control heart rate and blood pressure appropriately in response to body position changes.
People with POTS tend to have blood that pools in their lower extremities, such as the legs. This leads to a decreased return of blood to the body’s organs. When there is low circulating blood volume, according to Linder, the heart rate increases rapidly to make up for it and to preserve blood flow to the heart, brain and other organs.
Some people develop POTS in the weeks after an infection or illness, such as the flu or mononucleosis. This can occur even in active, highly functioning people who then experience debilitating POTS symptoms, says Dr. Tae Chung, director of the Johns Hopkins POTS Clinic Program and assistant professor of physical medicine and rehabilitation and neurology at Johns Hopkins University in Baltimore.
POTS and COVID-19
Health providers have recently also observed POTS in some people who’ve had COVID-19. This could be due to the occurrence of POTS post-infection.
POTS also may be related to a secondary health condition, such as:
— Ehlers-Danlos syndrome, a genetic disorder that affects the body’s connective tissue and causes overly flexible joints.
— Mast cell activation, which is when the body repeatedly has severe allergic symptoms such as hives, trouble breathing and diarrhea. These symptoms are caused by an overactivation of the body’s mast cells, which are associated with allergic reactions.
Because POTS is not as well known as other disorders, it can take a long time to get a diagnosis. A patient may see a cardiologist for the rapid heart rate, a gastroenterologist or primary care doctor for the GI effects and a dermatologist for skin lesions. That makes it hard to bring together all the symptoms for the right diagnosis. “On average, our patients have seen seven different providers prior to reaching our POTS clinic,” says Jillian Myers, an electrophysiology advanced practice nurse and POTS program coordinator at the Ann and Robert H. Lurie Children’s Hospital of Chicago.
Those with POTS may experience a 6-month to 6-year delay in diagnosis, according to the results of a POTS survey reported in 2019 in the Journal of Internal Medicine.
How Is POTS Diagnosed?
Health providers use several types of tests to diagnose POTS, including:
— A physical exam.
— A review of medical history.
— An echocardiogram of the heart to look at the heart’s structures.
— An electrocardiogram to measure the heart’s rhythm and electrical activity.
— A tilt table test, which requires a person to lie flat on a special table for 10 minutes or more. Then, the table is moved up to a standing position. The person’s blood pressure and heart rate are monitored to see how they change when changing position. This test helps to mimic what triggers some of the lightheadedness and faint feeling associated with POTS. Some people pass out during a tilt table test.
— Blood tests.
— Use of a special monitor for a day or more to check for any abnormal heart rhythms.
Several of the tests used to diagnose POTS help to rule out other potential health problems that may have similar symptoms. These may include thyroid problems, vitamin deficiencies or cardiac abnormalities.
What Is the Treatment for POTS?
There are several treatments for POTS. Treatments may not completely cure POTS, but they can help you function normally enough for work, school or other responsibilities, Chung says. In some people, POTS will spontaneously disappear even without treatment; in others, it may recur in the future.
Treatments for POTS include:
— Drinking more water throughout the day. This helps to build blood volume in your body. Your health provider can guide you on how much water you need. You should try to track how much water you’re able to drink each day, Chung says.
— Consuming more salt or taking salt tablets. Salt can help to maintain water in your blood, and that makes it easier for blood to reach the brain and heart.
— Following an exercise training program with the help of a physical therapist. This may start out with exercises done while lying down if that’s all you’re able to tolerate. The POTS program at Lurie Children’s will tailor exercise recommendations for each patient based on their needs and what equipment they have in their homes, Myers says. It may take three to six months before a patient feels confident exercising in an upright position, Chen says.
— Talking with your doctor about any foods or drinks to avoid, such as alcohol.
— Using medications such as beta blockers to help lower the heart rate and drugs to help with other symptoms such as GI issues, low blood pressure and retention of sodium in the kidneys. Not everyone with POTS requires medications.
Tips for Living With POTS
Living with POTS can be challenging, but there are some ways you can learn to better manage the condition. Here are some coping tips if you have POTS:
— Follow your doctors’ instructions regarding how much water to drink or salt to consume. While adding salt and fluids may be helpful for some patients, for others, particularly those who have other conditions such as high blood pressure, heart failure or kidney problems, it may not be a good idea. Talk it all through with your health care provider before making any changes.
— Don’t hesitate to seek help from a mental health professional. Living with POTS can make you feel as if you’re not keeping up with your peers, Linder says. That’s where help from a counselor or similar mental health professional, as well as building a good support system, can come in handy.
— Don’t blame yourself for your inability to tolerate exercise or other activities, Chung advises. He has observed parents or others who tell those with POTS to try harder to exercise. With POTS, the problem isn’t trying harder — it can be a true inability to do certain activities. “It’s just the nature of the disease,” Chung says.
— Do your best to stay organized, Chung recommends. Many of his patients are tech-savvy and use apps, fitness trackers or other tech tools to track their heart rate, blood pressure, how much water they drink and other health information. Having this information makes it easier to manage POTS.
— Keep your environment comfortable to avoid extreme temperature and positional changes. One tip from Chen: Plan to take a lukewarm shower at night. This relates back to the intolerance of heat that many with POTS may feel. When waking up in the morning, going from lying down to standing up can be hard, and then it can feel worse when taking a hot shower due to problems tolerating heat. This is why Chen recommends a lukewarm shower before bedtime.
— Know when to seek urgent care. Having your heart rate increase drastically when you have POTS can be scary, but it’s also a routine symptom — making it hard to know when to seek urgent care for the condition. If you already have a POTS diagnosis but have new or increased heart symptoms along with persistent fainting, let your primary health provider know or seek urgent medical help. That can help rule out a heart problem. You should also seek medical attention if you feel especially fatigued. For example, Chen has seen POTS patients who were particularly fatigued because they were dehydrated.
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Update 01/11/22: This story was previously published at an earlier date and has been updated with new information.