Postural orthostatic tachycardia syndrome

Postural Orthostatic Tachycardia Syndrome

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat much faster than normal when you stand up, leading to dizziness, exhaustion, and many other symptoms that can significantly impact daily life.

Table of contents

What is postural orthostatic tachycardia syndrome?

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance, which means your body has difficulty adjusting to an upright position.[1]

Each word in “postural orthostatic tachycardia syndrome” has a specific meaning. Postural relates to the position of your body. Orthostatic means related to standing upright. Tachycardia describes a heart rate over 100 beats per minute. Syndrome refers to a group of symptoms that happen together.[1]

The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more, or over 120 beats per minute, within the first 10 minutes of standing, in the absence of a significant drop in blood pressure. In children and adolescents, a standard of a 40 beats per minute or more increase has been adopted.[2][4]

Who is affected by POTS?

POTS is more common than many people realize. It affects approximately 1 to 3 million people in the United States, and experts estimate that the POTS population has doubled since the start of the COVID-19 pandemic.[1][2]

The majority of people with POTS are women aged 15 to 50 years, although men can also have POTS. It is more common in women than men, with females being around five times more likely to be diagnosed with POTS.[1][4][7]

You’re at a higher risk of developing POTS after experiencing certain stressors. These include significant illnesses, such as viral illnesses like mononucleosis or serious infections, pregnancy, physical trauma such as a head injury, or surgery.[1] POTS commonly begins after a pregnancy, major surgery, puberty, trauma, or a viral illness.[4] Some people report an increase in episodes of POTS right before their menstrual periods.[4]

People who have certain autoimmune conditions—conditions where the body’s immune system mistakenly attacks healthy tissue—such as Sjogren’s syndrome, lupus, and celiac disease, are also more likely to develop POTS.[1] People with a family history of POTS or other related conditions are also at higher risk.[4] Some people with Ehler-Danlos syndrome type III (also called hypermobile Ehlers–Danlos syndrome, or hEDS) may also be diagnosed with POTS.[4]

How POTS affects the body

Normally, your body’s autonomic nervous system—the system responsible for control of bodily functions not consciously directed, such as breathing, heart rate and blood pressure—balances your heart rate and blood pressure to keep your blood flowing at a healthy pace, no matter what position your body is in.[1]

When you stand up, gravity causes about 10% to 15% of your blood to settle in your abdomen, legs and arms. This means that less blood reaches your brain, which can cause brief lightheadedness. If you don’t have POTS, this lightheaded feeling doesn’t happen often because your leg muscles help pump blood back up to your heart.[1]

In addition, your autonomic nervous system turns on a series of rapid responses. To compensate for the lower amount of blood returning to your heart after standing up, your body releases the hormones epinephrine (adrenaline) and norepinephrine. These hormones typically cause your heart to beat a little faster and with more force. Norepinephrine also causes your blood vessels to tighten or constrict. This all results in more blood returning to your heart and brain.[1]

If you have POTS, your body can’t coordinate the balancing act of blood vessel constriction and heart rate response. People with POTS tend to pool a larger amount of blood in vessels below their heart when they stand. Their body responds by releasing more norepinephrine or epinephrine to try to cause more squeezing of their blood vessels. For several reasons, their blood vessels don’t respond normally to these hormones. Because their heart remains able to respond to the norepinephrine and epinephrine, their heart rate often increases.[1]

POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation.[2] Approximately 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves.[2]

Signs and symptoms

While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate. Symptoms of orthostatic intolerance often include dizziness or fainting, and happen because not enough blood flows back to the heart when the person moves from a lying down or seated position to standing up.[2][4]

Some symptoms happen when you stand up and can get better when you sit or lie down, such as:

  • Dizziness or lightheadedness
  • Noticeable heartbeats (heart palpitations)
  • Chest pain
  • Shortness of breath
  • Shaking and sweating
  • Fainting or nearly fainting[3]

You may also get other symptoms, such as:

  • Problems with your stomach or digestion, such as feeling sick, being sick, diarrhea, constipation, bloating and tummy pain
  • Headaches and problems with your sight, such as blurred vision or tunnel vision
  • Your hands and feet looking purple—this may be more difficult to see if you have brown or black skin
  • Weakness and extreme tiredness (fatigue), not being able to do much exercise, and sleeping badly
  • Problems with thinking, memory and concentration (brain fog)[3]

Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, and shortness of breath.[2] Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.[2]

You may find your symptoms are worse in the morning, and they may change from day to day.[3] POTS symptoms may come and go over time, called a relapsing-remitting pattern. In most cases, POTS symptoms improve over time, though some symptoms may remain or last a long time.[4]

Causes and triggers

It’s not clear what causes postural tachycardia syndrome. It can develop suddenly or gradually over time.[3] POTS is considered a syndrome—not a single disease—because it can have many potential causes.[5]

You may be more likely to get POTS if you have long covid, myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), or joint hypermobility syndrome.[3] A number of other diseases can be associated with POTS, including traumatic brain injury, irritable bowel syndrome, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, and migraine.[4]

Some things can also make your symptoms worse, such as:

  • Being in a hot place
  • Standing or sitting upright for long periods of time
  • Eating, especially refined carbohydrates like white bread
  • Not drinking enough fluids
  • Drinking alcohol
  • Resting too much
  • Exercise
  • Being on your period
  • Stress[3]

How POTS is diagnosed

Measuring blood pressure and heart rate while lying down, then while standing, can help doctors diagnose POTS. Within 10 minutes of standing, the heart rate rises at least 30 beats per minute (40 beats per minute for adolescents) in POTS and, importantly, the blood pressure remains stable. These findings, along with symptoms of orthostatic intolerance, must be present for at least three to six months for a person to be diagnosed with POTS.[10][13]

If you have symptoms of postural tachycardia syndrome, a doctor may check your blood pressure and heart rate before and after you stand up. You may also have some blood tests and an electrocardiogram (ECG)—a test that measures the electrical activity of the heart.[3]

POTS is often diagnosed by a tilt table test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the lying down and standing up position at 2, 5 and 10 minute intervals. This is called the Active Stand Test. Unfortunately, the Active Stand Test may miss some cases of POTS, so while it is appropriate to use to help diagnose POTS, caution should be used in ruling out POTS with an Active Stand Test when a patient has symptoms consistent with POTS.[2]

You may be referred to a specialist if making changes to your lifestyle does not help, you’re very unwell, or it’s not clear what’s causing your symptoms. The specialist may perform more tests, such as blood tests, urine tests, heart and blood pressure tests, and a tilt table test, where you lie on a flat bed that’s tilted upwards so your heart rate can be monitored.[3]

Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, and gastric motility studies.[2]

Because many doctors are not familiar with POTS, and since there is no laboratory test to confirm it, people often experience symptoms for several years before being diagnosed.[10] It can take time for people to be diagnosed with POTS, as the symptoms are similar to other conditions.[3]

Impact on quality of life and daily activities

While POTS isn’t life-threatening, it can greatly interfere with daily living and tasks.[1] Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited.[2]

Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. Approximately 25% of POTS patients are disabled and unable to work.[2] Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.[2]

It may be difficult for people with POTS to exercise or be physically active because of the increased heart rate, fainting spells or dizziness that occur in an upright position.[4] POTS can lead to marked functional disability, often limiting work or schooling.[13]

Treatment and management

There’s currently no cure for POTS, but it can be managed with changes to your lifestyle, or sometimes treatment with medicines.[3] Each case of POTS is different. People with POTS may see symptoms come and go over a period of years. In most cases, with adjustments in diet, medications and physical activity, a person with POTS will experience an improvement in their quality of life.[1]

If you’re diagnosed with postural tachycardia syndrome, finding the right treatment for you can take time. A doctor or specialist may suggest lifestyle changes first, such as drinking more fluids, eating small meals low in refined carbohydrates, and wearing compression clothing.[3]

While some people with POTS will require medications, most will improve with three behavioral changes alone: higher sodium (salt) intake, compression garments, and gradual exercise.[10]

You may be prescribed medicines to help control your symptoms, such as steroids, medicines used to treat heart conditions and manage your blood pressure, and selective serotonin reuptake inhibitors (SSRIs)—a type of medication commonly used to treat depression and anxiety. You may also need to try several different medicines or combinations of medicines.[3]

Lifestyle adaptations

Increase fluid and salt intake

It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. A fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day. Some patients can consume this much sodium by eating salty foods such as tomato juice, broth, pickles, and olives. Others prefer to use high-sodium electrolyte drinks or take salt tablets.[10][20]

Individuals with POTS should be drinking approximately 2-3 liters of water, milk, or electrolyte drinks per day. When consuming high amounts of salt, you must have fluids to accompany them to prevent dehydration.[16]

Wear compression garments

Compression garments push blood into the deeper veins, preventing it from pooling in superficial veins of the lower legs. This is especially important during periods of standing, to help the body overcome the force of gravity. There are many types of compression garments, including knee-high socks or footless calf sleeves, leggings, and bike shorts. A recent study showed that wearing a girdlelike garment called an abdominal binder and knee-high compression socks provides the best results for people who have POTS.[10]

Try abdominal compression, compression socks and/or gloves with 20-30 mm Hg of pressure. There are some really cute compression socks with fun colors and designs.[16]

Gradually step up exercise

A cornerstone of POTS treatment is a gradual and progressive exercise program. While some people with POTS have trouble exercising because of symptoms, regular exercise is critical to strengthening and retraining the cardiovascular system. An ideal program starts with short sessions of low-intensity recumbent (lying down) or semi-recumbent (seated) exercise. Some of my patients with POTS start by exercising on a stationary recumbent bike, rowing machine, or in a swimming pool. After a few weeks, they slowly and progressively increase the duration and intensity of their exercise, until they reach 30 minutes a day, four to five days per week.[10]

Eat smaller, lower-carbohydrate meals

After eating a large meal, much of our blood is redirected to aid in the digestion process, which, for POTS patients, can increase symptoms. Therefore, it is recommended to eat several smaller meals throughout the day instead of two or three large ones.[20] Patients who notice a worsening of symptoms after eating may want to try consuming fewer simple carbohydrates (like refined sugars and flours) and consuming healthy protein with each meal.[20]

Strategies to prevent dizziness and fainting

If you suddenly feel faint or dizzy, you can try lying down and raising your legs until you feel better. If you cannot lie down, you can try:

  • Crossing your legs with one in front of the other while standing
  • Rocking up and down on your toes
  • Clenching your buttocks and tummy muscles
  • Clenching your fists[3]

Tighten and relax leg muscles before standing. Pumping your ankles or tightening the muscles in your legs about 10 times before you stand can help to constrict your blood vessels and reduce symptoms when you stand.[16]

Avoid prolonged standing—sit when possible. A small bar stool in the bathroom can save your energy when brushing teeth, washing your face, drying your hair and putting on makeup.[16]

Avoid bending over. Bending can alter blood flow and cause dizziness or fainting upon returning to an upright position. Instead, bend at the knees, keeping your head above your waist.[16]

Other helpful adaptations

Avoid high temperatures and high humidity. People with POTS often don’t regulate body temperature very well. On top of this, when hot our blood vessels dilate, which promotes blood pooling.[16]

Elevate the head of the bed. Take blocks of wood or bricks and put them under the legs at the head of the bed to raise it up by four to twelve inches.[16]

Examine your reaction to caffeine. Caffeine is helpful to some POTS patients and exacerbates symptoms in others.[20]

Living with POTS: What to expect

POTS symptoms may come and go over time. In most cases, POTS symptoms improve over time, though some symptoms may remain or last a long time.[4] Each case of POTS is different. People with POTS may see symptoms come and go over a period of years. In most cases, with adjustments in diet, medications and physical activity, a person with POTS will experience an improvement in their quality of life.[1]

The good news is that a variety of treatments and strategies can help improve symptoms.[1] Treatments for POTS can improve symptoms and function, and can be initiated in primary care.[13]

Ongoing Clinical Trials on Postural orthostatic tachycardia syndrome

  • Study on the Effectiveness of Human Normal Immunoglobulin for Adults with Post-COVID-19 Postural Orthostatic Tachycardia Syndrome (POTS)

    Not recruiting

    3 1 1
    Germany Italy Spain

References

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

http://www.dysautonomiainternational.org/page.php?ID=30

https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots

https://www.brighamandwomens.org/neurology/autonomic-neurology/postural-orthostatic-tachycardia-syndrome

https://kidshealth.org/en/parents/pots.html

https://potsfoundation.org.au/living-with-pots/

https://www.upmc.com/services/heart-vascular/conditions/postural-orthostatic-tachycardia-syndrome

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

https://www.health.harvard.edu/blog/pots-diagnosing-and-treating-this-dizzying-syndrome-202110062611

https://pmc.ncbi.nlm.nih.gov/articles/PMC8313187/

https://www.uscjournal.com/articles/narrative-review-postural-orthostatic-tachycardia-syndrome-associated-conditions-and?language_content_entity=en

https://pmc.ncbi.nlm.nih.gov/articles/PMC8920526/

https://www.childrensnational.org/get-care/health-library/dysautonomia-and-pots

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

https://www.standinguptopots.org/livingwithpots/pots-tricks

https://www.myadvantagept.com/blog/5-expert-recommended-tips-to-manage-pots-symptoms

https://www.missionhealth.org/healthy-living/blog/living-with-pots-postural-orthostatic-tachycardia-syndrome-self-care

https://www.awarenessforpotsies.org/daily-tips-and-tricks

http://www.dysautonomiainternational.org/page.php?ID=44

https://medlineplus.gov/diagnostictests.html

https://www.questdiagnostics.com/

https://www.healthdirect.gov.au/diagnostic-tests

https://www.who.int/health-topics/diagnostics

https://www.yalemedicine.org/clinical-keywords/diagnostic-testsprocedures

https://www.nibib.nih.gov/science-education/science-topics/rapid-diagnostics

https://www.health.harvard.edu/diagnostic-tests-and-medical-procedures

https://www.roche.com/stories/terminology-in-diagnostics