Postural orthostatic tachycardia syndrome (POTS) is a condition that affects 1 to 3 million people in the U.S., including Olympic swimmer Katie Ledecky and singer Halsey. POTS is a chronic disorder characterized by dizziness and an increased heart rate when going from sitting to standing. It affects the autonomic nervous system, which controls the body’s blood pressure, heart rate, and respiration.
“When people have frequent episodes of lightheadedness associated with upright activity, they should try to become more aware of what their heart rate is during those episodes,” says Richard Shelton, MD, a cardiologist at University of Utah Health. “With POTS, there is an increase of at least 30 beats per minute when going from lying down to standing up without a significant drop in blood pressure.”
Here are five important things to know about POTS.
1. It’s not life-threatening but might require some adjustments
If you’ve been diagnosed with POTS, don’t worry—it is not life-threatening and does not affect your life expectancy.
However, certain things can make your POTS symptoms worse. It’s important to know your triggers so that you can avoid or modify situations to avoid worsening unpleasant symptoms.
POTS symptoms may be exacerbated in the following circumstances:
- During or after a strenuous physical activity
- During sickness, like a viral illness
- Standing for significant periods of time
- In hot weather or when taking a hot bath or shower
- During menstruation or pregnancy
- After a surgery or serious injury
There is also a relationship between POTS and hypermobility. Patients with a connective tissue disorder that causes hypermobility, including hypermobile Ehlers-Danlos syndrome, can develop POTS without any other exacerbating conditions more commonly associated with it. These include viruses, traumatic brain injuries, or pregnancy.
2. It can greatly vary in severity
Some people diagnosed with POTS may experience occasional lightheadedness but otherwise have mild symptoms. However, POTS can be limiting or even debilitating to others.
“Patients with severe symptoms might have to limit their lifestyles and daily activities a great deal, to the point where they can’t work a full-time job that involves a lot of standing or walking,” Shelton says. “For patients with very severe POTS, working is not feasible, and many of them are confined to their beds and even have difficulty getting to the bathroom.”
3. It primarily affects women
POTS can affect anyone, but it’s primarily seen in women that are of reproductive age. The reason for this isn’t clear, but some conditions associated with POTS also primarily affect women, like hypermobile Ehlers-Danlos syndrome and autoimmune diseases.Some women report an increase in POTS symptoms just before or during their periods, or during pregnancy.
“Menstruating causes a monthly loss of blood volume, which can increase sympathetic nervous system activity and cause more lightheadedness and tachycardia,” Shelton says.
Some notice their symptoms improve during pregnancy due to volume expansion, which is common in pregnancy. Others develop it after a major trauma, generally a traumatic brain injury, or after a virus.
4. Diagnosis can be tricky
Many people go months or years before receiving a POTS diagnosis. This is partly because the wide range of symptoms often mimic other conditions, such as anemia, thyroid disorders, or vitamin deficiencies.
Besides dizziness and fainting, people with POTS often experience the following:
- Brain fog
- Fatigue
- Shortness of breath
- Heart palpitations
- Trouble sleeping
- Chest pain
- Anxiety
- Feeling unwell
If you have these symptoms and suspect you may have POTS, your doctor can order a tilt table test, which measures your blood pressure and heart rate when your body goes from lying down to an upright position.
5. There’s no cure, but you can still live a full life
There are many ways to manage your condition so that you can still lead a full and normal life. Your doctor will work with you to come up with an individualized plan best for you, but the following common lifestyle changes can lessen your symptoms:
- Exercise regularly as appropriate for your fitness level.
- Drink plenty of fluids, with water being the main source of hydration.
- Increase sodium in your diet. Your doctor may recommend taking a sodium tablet or electrolyte supplement, especially before exercise. Choose sodium sources like nuts, pickles, olives, or sardines instead of salty snacks like chips and crackers.
- Eat a heart-healthy diet with protein, vegetables, and complex carbohydrates.
- Have small, frequent meals instead of two or three large ones.
- Take any medications prescribed to you by your doctor.
POTS can be a challenging condition to live with and manage, but don’t lose hope. Patiently and persistently managing POTS alongside your health care team can help you take steps to regain control over your health.
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