What is postural orthostatic tachycardia syndrome (POTS)?
POTS is part of a group of disorders that feature orthostatic intolerance. Orthostatic intolerance is the term used to describe symptoms that occur when a person stands up and can be relieved by lying down. Symptoms of orthostatic intolerance, which often include dizziness or fainting, happen because not enough blood flows back to the heart when the person moves from a lying down or seated position to standing up.
The classic symptom of POTS is a fast heartbeat. A person's heart rate may increase by more than 30 beats per minute or exceed 120 beats per minute within 10 minutes of standing. The rapid heartbeat usually improves when the person lies down again. In adolescents, the threshold for POTS is an increase of at least 40 beats per minute.
POTS can also cause lightheadedness or dizziness, fainting, and palpitations which often occur upon standing. POTS may also cause exhaustion, headaches, and other symptoms. Some people may have blurred vision or tunnel vision, weakness in the legs, chest pain or other pain, fatigue, sleep problems, digestive issues, shortness of breath, and difficulty concentrating. 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.
POTS symptoms may come and go over time (called relapsing-remitting pattern). In most cases, POTS symptoms improve over time, though some symptoms may remain or last a long time.
Who is more likely to get postural tachycardia syndrome (POTS)?
While anyone can be affected, POTS:
- Mainly affects people between the ages of 15 and 50, and;
- It is more common in women than men.
POTS commonly begins after a pregnancy, major surgery, puberty, trauma, or a viral illness. Some people report an increase in episodes of POTS right before their menstrual periods.
People with a family history of POTS or other related conditions are also at higher risk. Some people with Ehler-Danlos syndrome type III (also called hypermobile Ehlers–Danlos syndrome, or hEDS) may also be diagnosed with POTS. hEDS is an inherited connective tissue disorder that is caused by defects in a protein called collagen. 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 (see below), and migraine.
Some medications (anti-depressants, anti-psychotics, some medications used to treat high blood pressure and heart conditions, and diuretics) may cause or worsen symptoms of POTS. People with POTS should consult a healthcare provider before starting any new medication. They should also consult with a doctor before stopping any medications that may be contributing to POTS symptoms.
How is postural tachycardia syndrome (POTS) diagnosed and treated?
Diagnosing postural orthostatic tachycardia syndrome (POTS)
Diagnosing POTS can be challenging because its symptoms often resemble other conditions. This can lead to delayed diagnosis and the need to see specialists, like cardiologists or neurologists.
Doctors typically begin by reviewing a person’s medical history and discussing their symptoms. They may also measure heart rate and blood pressure and observe how the body responds to changes in position, such as standing up quickly.
A common diagnostic tool is the tilt table test. During this test, a person lies flat on a table that is tilted to a standing position. Doctors monitor heart rate and blood pressure throughout the test. A significant increase in heart rate without a significant drop in blood pressure strongly suggests POTS. In some cases, additional blood tests or other lab tests may be necessary to rule out other conditions.
While POTS may not be widely understood and recognized, awareness is increasing. If you suspect you may have POTS, discuss your concerns with a healthcare provider and ask questions.
Treating postural orthostatic tachycardia syndrome (POTS)
Scientists still do not know exactly what causes POTS. Current treatments focus on managing low blood volume and problems with blood flow. Some medications, like fludrocortisone and midodrine, can help by increasing blood volume and tightening blood vessels. These can offer short-term relief. However, researchers are still learning about how effective they are over the long-term.
Lifestyle changes can also help people with POTS minimize symptoms.
- Increasing salt intake and staying hydrated can help regulate blood pressure and increase the volume of blood in the body.
- Drinking at least 16 ounces (about two glasses) of water before getting up can provide a temporary boost.
- For some individuals, beta-blockers may offer relief. Beta-blockers are a type of medication that slows down the heart rate and reduces blood pressure. Beta-blockers can reduce the symptoms of dizziness, lightheadedness, and rapid heartbeat that often occur when people with POTS stand up. They can also help improve blood flow to the brain, which can help to relieve other symptoms of POTS, such as brain fog, headaches, tremors, and anxiety.
- Research suggests that cardiovascular rehabilitation with physical activity that slowly builds in intensity can also improve tolerance to standing. However, because some people with POTS also have exercise intolerance, this is not recommended for everyone.
- Wearing special compression garments can help. These garments, which are tight-fitting and go up to the waist, squeeze the lower body. This can help improve blood flow and reduce heart rate for people with POTS, especially when standing up.
What are the latest updates on postural tachycardia syndrome (POTS)?
NINDS, a part of the National Institutes of Health (NIH), is the leading federal funder of research on the brain and nervous system. NINDS supports new and innovative research to better understand, diagnose, and treat POTS. NINDS-supported research projects cover a wide range of topics on POTS, such as improving current treatments and testing new potential medications that can treat POTS.
COVID-19/Long COVID and POTS
Recent studies suggest there is a link between COVID-19 and the development of POTS, and some people with Long COVID have developed POTS. Scientists are still working to understand why this happens.
Some long-term neurological symptoms of POTS linked to COVID-19 include:
- Brain fog: Trouble concentrating, remembering, or staying focused
- Cognitive problems: Difficulty with problem-solving, decision-making, and thinking clearly
- Anxiety and depression: The ongoing nature of POTS and its symptoms can lead to mental health issues like anxiety and depression.
- Sleep problems: Trouble falling asleep, staying asleep, or getting restful sleep
More research is needed to find better ways to diagnose, treat, and prevent POTS in people with Long COVID. By understanding how COVID-19 affects the brain, scientists hope to develop treatments and preventions for POTS and other long-term health issues.
Emerging Research
An ongoing study is comparing a medication called pyridostigmine to a placebo pill to treat POTS. A placebo is something that looks like real medicine but doesn't have any active ingredients or effects. In general, a placebo can be a pill, a shot, or even a treatment that doesn't change the condition, but a person may feel better because they believe it's helping them.
Currently, pyridostigmine is mainly used to treat myasthenia gravis, a disease that causes muscle weakness. It helps improve muscle strength by increasing a chemical that allows nerve signals to reach muscles. Researchers hope that pyridostigmine will also help lower heart rate and stabilize blood pressure in people with POTS. Another current study aims to identify different types of POTS, understand their underlying causes, and develop more effective treatment strategies for each.
NIH-funded scientists are looking at identifying tools and testing methods to improve diagnosis of POTS, as well as personalized treatment approaches. They are also examining whether the impaired cognition or "brain fog" of POTS, which is a major feature of the disorder, is related to differences in brain activity when compared to people without POTS.
Researchers also think that in some individuals, POTS may be linked to an autoimmune reaction. This means that the body's immune system mistakenly attacks its own tissues. Stimulating the vagus nerve might help calm down this overactive immune response. The vagus nerve is the longest cranial nerve in the body, stretching from the brain to the stomach. It's like a superhighway, carrying messages between the brain and important organs like the heart, lungs, and digestive system. It helps control heart rate, digestion, breathing, immune response, and even mood. Researchers will test people with POTS and healthy people to identify antibodies and measure the effects of nerve stimulation.
Future Directions
There's a growing need for more research on how POTS happens. In one area of current research, scientists are looking at genetic mutations, which have been linked to POTS in some families. However, genetic and epigenetic factors in POTS are still not well understood. Epigenetics is a way to turn genes on or off without changing the DNA code—like a dimmer switch for genes. It can affect how a body grows, develops, and responds to things like stress or diet. Large-scale studies are needed to explore why POTS often runs in families and why it affects more women than men.
Further research is also needed to understand how the immune system contributes to the development and progression of POTS and how the condition impacts cognitive abilities and brain function.
Research using donated brains of people who had POTS can help researchers understand if the disease damages the parts of the brain that control heart rate. Registering to donate brain tissue after death can help scientists learn more about how the brain affects the body.
How can I or my loved one help improve care for people with postural tachycardia syndrome (POTS)?
Consider participating in a clinical trial so clinicians and scientists can learn more about postural orthostatic tachycardia syndrome (POTS) and related disorders. Clinical research with human participants helps researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of participants are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with postural orthostatic tachycardia syndrome (POTS) at Clinicaltrials.gov
Where can I find more information about postural tachycardia syndrome (POTS)?
Information may be available from the following resources:
Dysautonomia International
631-202-1720
info@DysautonomiaInternational.org
Dysautonomia Youth Network of America, Inc.
301-705-6995
info@dynainc.org
National Dysautonomia Research Foundation
651-327-0367
ndrf@ndrf.org
The Familial Dysautonomia Foundation
212-279-1066
info@famdys.org
Dysautonomia Support Network
401-830-4480
info@dysautonomiasupport.org