Postural orthostatic tachycardia syndrome – Basic Information

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Postural orthostatic tachycardia syndrome (POTS) is a condition affecting the autonomic nervous system that causes your heart to race and a range of other symptoms when you stand up from sitting or lying down. While there is no cure, understanding the condition and making targeted lifestyle adjustments can help many people manage their symptoms and improve their daily lives.

Understanding Who Gets POTS

Postural orthostatic tachycardia syndrome affects more people than many realize. Before the COVID-19 pandemic, experts estimated that between 1 and 3 million Americans were living with this condition. Since the pandemic began, that number is believed to have doubled, meaning roughly 2 to 6 million people in the United States may now be dealing with POTS.[2][1]

This condition does not affect everyone equally. The vast majority of people with POTS are women, particularly those between the ages of 15 and 50. Women are approximately five times more likely to develop POTS than men. The condition often begins during puberty or early adulthood, though it can develop at any age.[1][4][7]

Interestingly, in one large survey of people with POTS, about half of the participants reported that their symptoms started during adolescence, by around 14 years of age. The condition typically appears after a significant health event or stressor, rather than developing gradually over time without any apparent trigger.[11]

What Causes POTS

The exact cause of postural orthostatic tachycardia syndrome remains unclear, and researchers are still working to understand why some people develop this condition. What is known is that POTS represents a malfunction in the autonomic nervous system, which is the part of your nervous system that automatically controls functions you don’t consciously think about, such as heart rate, blood pressure, breathing, and digestion.[6][7]

Think of the autonomic nervous system as your body’s autopilot. It has two main branches that work together to keep everything balanced. The sympathetic nervous system acts like your body’s “fight or flight” response, kicking in when you’re stressed or need to react quickly. The parasympathetic nervous system is your “rest and digest” mode, helping your body calm down and recover. In people with POTS, this balance is disrupted.[7]

POTS often appears after specific triggering events. Many people first notice symptoms following a viral illness, such as mononucleosis or a serious infection. The condition has become increasingly recognized after COVID-19 infections, which has contributed to the dramatic rise in POTS cases since the pandemic began. Other common triggers include pregnancy, major surgery, physical trauma like a head injury, or simply going through puberty.[1][4][6]

Some people report that POTS symptoms become more pronounced right before their menstrual periods, suggesting that hormonal changes may influence the condition. Additionally, there appears to be a genetic component, as some people have family members who also have POTS or related conditions.[4][14]

Risk Factors for Developing POTS

Certain factors increase a person’s likelihood of developing postural orthostatic tachycardia syndrome. Understanding these risk factors can help people recognize when they might be at higher risk and seek medical attention if symptoms develop.

People with certain autoimmune conditions face a higher risk of developing POTS. These conditions include Sjogren’s syndrome, lupus, and celiac disease. The connection between autoimmune disorders and POTS suggests that immune system dysfunction may play a role in the development of the syndrome.[1]

Those with connective tissue disorders, particularly hypermobile Ehlers-Danlos syndrome, are also at increased risk. This genetic condition affects collagen, a protein that provides structure to many parts of the body, including blood vessels. Some people with this form of Ehlers-Danlos syndrome also receive a POTS diagnosis.[4]

⚠️ Important
People who have experienced significant illnesses, physical trauma, surgery, or pregnancy should be aware that they have a higher risk of developing POTS. If you notice symptoms of dizziness, rapid heartbeat, or lightheadedness when standing after one of these events, it’s important to discuss these concerns with your healthcare provider rather than dismissing them as normal recovery.

Having long COVID, myalgic encephalomyelitis (also known as chronic fatigue syndrome), or joint hypermobility syndrome also increases the likelihood of developing POTS. The connection between POTS and long COVID is particularly strong, with many people reporting new onset of POTS symptoms following COVID-19 infection.[3][4]

Various other conditions have been associated with POTS, including traumatic brain injury, irritable bowel syndrome, and migraine. This overlap with other health conditions can sometimes make diagnosis more complicated, as symptoms may be attributed to these other conditions rather than recognized as POTS.[4]

Recognizing the Symptoms

The symptoms of postural orthostatic tachycardia syndrome can vary significantly from person to person. Some individuals experience mild symptoms that only occasionally interfere with daily activities, while others face severe symptoms that make even simple tasks challenging. The hallmark of POTS is that symptoms primarily occur when standing or transitioning from lying or sitting to standing, and they typically improve when sitting or lying down.[3]

The defining symptom of POTS is a rapid increase in heart rate upon standing. In adults, the heart rate increases by at least 30 beats per minute within 10 minutes of standing. In children and adolescents under 20 years old, the threshold is higher, at 40 beats per minute. The heart rate may also exceed 120 beats per minute. This rapid heartbeat often comes with a sensation of palpitations, where people can feel their heart racing or pounding in their chest.[2][4]

Dizziness and lightheadedness are extremely common symptoms when standing. Many people describe feeling as though they might faint or pass out, and some do experience actual fainting episodes. The feeling of being unsteady, as if about to fall, is also frequently reported.[3][6]

Beyond the heart-related symptoms, POTS affects many other body systems. Extreme fatigue and weakness are common complaints, with many people finding it difficult or impossible to do much exercise. Sleep problems are frequent, and the exhaustion doesn’t necessarily improve with rest. Some people with POTS feel as tired as patients with conditions like chronic obstructive pulmonary disease or congestive heart failure.[2][3]

Digestive symptoms trouble many people with POTS. These can include nausea, vomiting, diarrhea, constipation, bloating, and stomach pain. The digestive system is partly controlled by the autonomic nervous system, so when that system isn’t working properly, digestion can be affected.[3]

Cognitive difficulties, often called “brain fog,” are frustrating symptoms for many. People describe problems with thinking clearly, remembering things, and concentrating on tasks. This mental cloudiness can make work or school particularly challenging.[3][2]

Many people with POTS experience headaches, including migraines. Vision problems such as blurred vision or tunnel vision can occur. Some people notice that their hands and feet take on a purple or reddish color when standing, which is caused by blood pooling in the lower extremities. This color change may be more difficult to see in people with darker skin tones.[3][2]

Shortness of breath, chest pain, shaking, and sweating can all be symptoms of POTS. Some people experience coldness or pain in their hands and feet. Problems with body temperature regulation are common, with people feeling too hot or too cold when others around them are comfortable.[3][7]

Symptoms often follow patterns. Many people find their symptoms are worse in the morning. Symptoms can change from day to day, and may come and go over time in what’s called a relapsing-remitting pattern. Certain situations tend to make symptoms worse, such as being in hot environments, standing or sitting upright for long periods, eating (especially foods high in refined carbohydrates), not drinking enough fluids, drinking alcohol, resting too much, exercising, being on your period, or experiencing stress.[3][4]

The Impact on Daily Life

Postural orthostatic tachycardia syndrome can have a profound effect on a person’s ability to function in everyday life. The severity of this impact varies widely. Some people with POTS continue with relatively normal work, school, social activities, and recreation. For others, the symptoms are so severe that basic daily activities become extremely difficult.[2]

Simple tasks that most people take for granted can become challenges. Bathing, doing housework, eating while sitting upright, and even just standing or walking can be significantly limited. Physicians who specialize in treating POTS have compared the level of functional impairment they see in POTS patients to the impairment seen in people with chronic obstructive pulmonary disease or congestive heart failure. This comparison helps illustrate just how debilitating POTS can be for those severely affected.[2]

The economic impact can be substantial. Approximately 25 percent of people with POTS are unable to work because of their disability. Research has found that the quality of life for people with POTS is comparable to that of patients who are on dialysis for kidney failure. This striking comparison underscores the serious nature of the condition and its effects on overall wellbeing.[2]

For young people, POTS can disrupt education and development during critical years. Since the condition often begins during adolescence or young adulthood, it can interfere with finishing school, starting a career, and establishing independence. The unpredictable nature of symptoms, which can vary day to day, makes planning activities and commitments difficult.[13]

Prevention Strategies

Because the exact cause of POTS is not fully understood, there are no guaranteed ways to prevent the condition from developing. However, for people who already have POTS, there are strategies that can help prevent symptom flare-ups and make daily life more manageable.

Staying well hydrated is one of the most important preventive measures. People with POTS should aim to drink approximately 2 to 3 liters of fluids per day. Water, milk, and electrolyte drinks all count toward this goal. Proper hydration helps maintain blood volume, which can reduce symptoms.[1][20]

Increasing salt intake is typically recommended for most people with POTS, as salt helps the body retain water in the blood vessels. This can elevate blood pressure to normal levels and prevent it from falling when standing. Many people with POTS need between 3 to 10 grams of salt per day, which is significantly more than the standard dietary guidelines recommend for the general population. Salt can be consumed through naturally salty foods, by adding extra salt to meals, or by taking salt tablets. It’s important to discuss the right amount of salt intake with your healthcare provider, as recommendations can vary based on individual circumstances.[3][16][20]

⚠️ Important
When consuming high amounts of salt, you must accompany it with plenty of fluids to prevent dehydration. Salt and water work together to increase blood volume. Taking salt without adequate fluids can lead to dehydration and make symptoms worse rather than better.

Wearing compression garments can help prevent blood from pooling in the legs when standing. Compression socks or stockings with 20 to 30 millimeters of mercury pressure are commonly recommended. Compression can also come in the form of leggings, bike shorts, or an abdominal binder worn around the waist. Research has shown that wearing both an abdominal binder and compression socks provides particularly good results for people with POTS.[3][10][16]

Making dietary adjustments can help prevent symptom worsening after meals. Eating several smaller meals throughout the day instead of two or three large ones can reduce the amount of blood redirected to the digestive system at any one time. Avoiding or limiting foods high in refined carbohydrates, such as white bread and sugary items, may also help some people. Including lean protein with each meal can be beneficial.[20]

Avoiding triggers when possible can prevent symptoms from flaring. Staying out of hot environments and high humidity, not standing for long periods, avoiding getting up too quickly after lying down, and limiting caffeine and alcohol are all strategies that can help. Learning to recognize and avoid personal triggers is an important part of managing POTS.[3]

Gentle, regular exercise is important for preventing deconditioning, though it needs to be approached carefully. Starting with exercises that can be done while lying down or recumbent, such as swimming or using a recumbent bicycle, can help build exercise tolerance without triggering severe symptoms. Gradually increasing activity over time, under the guidance of a healthcare provider or physical therapist, can improve symptoms in the long term.[10][13]

How POTS Affects Your Body

Understanding what happens in the body during POTS helps explain why the symptoms occur. In a healthy person, when you stand up, gravity naturally causes about 10 to 15 percent of your blood to settle in your abdomen, legs, and arms. This means less blood immediately reaches your brain, which could cause brief lightheadedness. However, your body has systems in place to prevent this from being a problem.[1][9]

Your leg muscles help pump blood back up toward your heart when you’re standing. At the same time, your autonomic nervous system triggers a series of rapid responses to maintain proper blood flow. To compensate for the reduced amount of blood returning to your heart after you stand, your body releases hormones called epinephrine (also known as adrenaline) and norepinephrine. These hormones cause your heart to beat a little faster and with more force. Norepinephrine also causes your blood vessels to tighten or constrict. All of this ensures that enough blood continues flowing to your heart and brain despite the change in position.[1][9]

In people with POTS, this coordinated response doesn’t work properly. When they stand up, a larger amount of blood pools in the vessels below their heart. The body responds by releasing more norepinephrine or epinephrine to try to squeeze the blood vessels. However, for reasons that aren’t completely clear, the blood vessels don’t respond normally to these hormones. The heart, on the other hand, remains able to respond to the hormones, so the heart rate increases significantly. This creates an imbalance that leads to the characteristic fast heartbeat and other symptoms of POTS.[1][9]

Many people with POTS have hypovolemia, which means they have lower than normal blood volume circulating in their bodies. Studies have shown high levels of norepinephrine in the blood when people with POTS are standing, reflecting increased activity of the sympathetic nervous system. About half of people with POTS have damage to small nerve fibers called small fiber neuropathy that affects nerves controlling sweating and other functions.[2]

When standing, people with POTS may experience reduced blood flow to the brain, a condition called reduced cerebral perfusion. This lack of adequate blood supply to the brain explains symptoms like dizziness, lightheadedness, difficulty concentrating, and in some cases, fainting. The body’s exaggerated “fight or flight” response from the sympathetic nervous system being overactive can cause symptoms like shaking, anxiety, and palpitations.[5]

Some people with POTS don’t experience a drop in blood pressure when standing, which distinguishes the condition from another disorder called orthostatic hypotension. In fact, some individuals with a specific type of POTS called hyperadrenergic POTS actually experience an increase in blood pressure when upright. However, despite these differences, the core problem remains the same: difficulty regulating blood flow and heart rate when changing positions.[2][5]

The problems with blood flow and autonomic regulation can affect many body systems beyond just the heart and blood vessels. The digestive system, which relies partly on autonomic control, may not function properly, leading to the gastrointestinal symptoms many people experience. Temperature regulation can be disrupted, causing unusual sweating patterns or difficulty staying warm or cool. These widespread effects throughout the body explain why POTS causes such a diverse range of symptoms.[7]

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

    1 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

FAQ

Is POTS a life-threatening condition?

POTS is not considered life-threatening, but it can significantly interfere with daily activities and quality of life. While the condition itself doesn’t directly cause death, it can make even simple tasks like bathing or standing difficult for those severely affected. With proper treatment and lifestyle modifications, many people can manage their symptoms and improve their daily functioning.

How is POTS diagnosed?

POTS is diagnosed by measuring blood pressure and heart rate while lying down and then again while standing. The diagnosis requires a sustained heart rate increase of at least 30 beats per minute in adults (or 40 beats per minute in people under 20) within 10 minutes of standing, without a significant drop in blood pressure. These findings must be accompanied by symptoms of dizziness or lightheadedness that have been present for at least three to six months. Some doctors may perform a tilt table test or use additional tests to evaluate the autonomic nervous system.

Will POTS go away on its own?

The course of POTS varies from person to person. Some people experience symptoms that come and go over time in a relapsing-remitting pattern. In most cases, POTS symptoms improve over time with appropriate treatment and lifestyle changes, though some symptoms may remain or last a long time. There is currently no cure for POTS, but with proper management, many people see significant improvement in their quality of life.

Can exercise help with POTS symptoms?

Yes, gradual exercise is considered a cornerstone of POTS treatment, though it must be approached carefully. Starting with exercises that can be done lying down, such as recumbent biking or swimming, can help build tolerance without triggering severe symptoms. Over time and under proper guidance, gradually increasing activity can improve symptoms. However, it may be difficult for people with POTS to exercise initially because of increased heart rate, dizziness, or fainting that occurs in upright positions.

Why does eating make POTS symptoms worse?

After eating a large meal, much of your blood is redirected to your digestive system to aid in the digestion process. For people with POTS, who already have difficulty managing blood flow when upright, this additional blood diversion can worsen symptoms like dizziness and lightheadedness. This is why eating several smaller meals throughout the day, rather than two or three large ones, is often recommended for people with POTS.

🎯 Key takeaways

  • POTS affects an estimated 2 to 6 million Americans, with numbers doubling since the COVID-19 pandemic began, yet many doctors remain unfamiliar with the condition.
  • Women are five times more likely than men to develop POTS, with most cases appearing between ages 15 and 50, often triggered by viral illness, pregnancy, or trauma.
  • The quality of life for people with POTS can be as impaired as those with kidney failure requiring dialysis, with about 25% unable to work.
  • Simple position changes from lying to standing cause blood to pool in the lower body, leading to a rapid heart rate increase of at least 30 beats per minute in adults.
  • Increasing daily salt intake to 3-10 grams and fluid intake to 2-3 liters can significantly help manage symptoms by increasing blood volume.
  • Wearing compression garments with 20-30 mmHg pressure, especially combining abdominal binders with compression socks, helps prevent blood pooling in the legs.
  • The autonomic nervous system malfunction in POTS means the body can’t properly coordinate blood vessel constriction and heart rate response when standing.
  • While there’s no cure for POTS, most people experience improvement in symptoms and quality of life with appropriate lifestyle changes, dietary adjustments, and sometimes medication.