What is Postural Orthostatic Tachycardia Syndrome?
by: Lisa Hurley
Postural Orthostatic Tachycardia Syndrome (POTS) is a chronic invisible illness that is caused by dysautonomia: a malfunctioning in the autonomic nervous system (ANS). The ANS controls (among other things) the heart rate, blood pressure, respiratory rate, digestion, metabolism, balance of water and electrolytes, and production of bodily fluids.
The term POTS was coined in 1993 by a team of researchers from the Mayo Clinic, however the syndrome has also been known historically as Chronic Orthostatic Intolerance, DaCosta’s Syndrome, Hyperadrenergic Orthostatic Hypotension, Irritable Heart, Mitral Valve Prolapse Syndrome, Partial Dysautonomia, Soldier’s Heart, Neurocirculatory Asthenia, Orthostatic Tachycardia, Postural Tachycardia Syndrome, and Vaso-regulatory Asthenia.
Although POTS is a conglomeration of symptoms (which we will detail later), its primary symptom is recurrent dizziness upon standing, caused by an elevated heart rate (tachycardia). The syndrome can affect anyone but occurs most frequently in women between the ages of 15 and 50.
It is estimated that POTS affects between 500,000 and 1 million people in the United States.and that 80% of sufferers are female.
What causes POTS?
The exact cause of POTS is unknown, but there is some evidence that it can be triggered after trauma, surgery, pregnancy, immunizations, or a viral illness.
There are no known risk factors as such, but there are underlying conditions that can be associated with POTS, including:
- Celiac’s Disease
- Ehlers Danlos Syndrome
- Multiple Sclerosis
- Sjogren’s Syndrome
- Small Fiber Neuropathy
- Vitamin deficiencies
What are the symptoms of Postural Orthostatic Tachycardia Syndrome?
POTS is characterized by a variety of symptoms, the main one of which is dizziness or fainting when moving from lying down to standing up. Other symptoms include:
- Abdominal pain
- Adrenaline rush
- Blood pooling in the extremities
- Blurry vision
- Bradycardia (slow heartbeat)
- Brain fog
- Chest discomfort/pain
- Cognitive impairment
- Exercise intolerance
- Gastrointestinal problems
- Graying out
- Frequent urination
- Gastroparesis (rapid gastric emptying)
- Hypersensitivity of the skin
- Joint/muscle pain
- Menstrual irregularities
- Mood swings
- Muscle weakness (mostly in the legs)
- Neuropathic pain
- Orthostatic intolerance
- Rapid gastric emptying
- Sensitivity to light or noise
- Shortness of breath
- Sleep abnormalities
- Thermoregulatory issues
- Tingling in the legs
- Tachycardia (rapid heartbeat)
- Tunnel Vision
- Visual Disturbances
How is POTS diagnosed?
According to the National Institutes of Health, the diagnostic criteria for Postural Orthostatic Tachycardia Syndrome are as follows:
- Heart rate increases to greater than 30 beats per minute within 10 minutes, when the patient moves from lying down to standing up. For patients 12-19 years old, the threshold is over 40 beats per minute.
- Symptoms become worse with standing, and improve when patient is lying down/at rest.
- Symptoms last for more than 6 months.
- There are no other causes of tachycardia present, such as medication or acute dehydration
There are 7 tests used to diagnose POTS.
- The main one is a Tilt Table Test. The tilt table test is meant to mimic the movement from lying down to standing—under controlled conditions, so that there is no danger of the patient falling. The patient lies down on the tilt table for about 30 minutes, and then is brought rapidly to an upright position (the doctor straps the patient to the table in order to keep them safe). If the patient’s heart rate increases to over 30 to 40 beats per minute as described above, then they are diagnosed as having POTS.
- Blood tests (to rule out other conditions)
- Brain imaging (to rule out other conditions)
- Heart rhythm test
- Heart function test
- Standing test
- Quantitative Sudomotor Axon Reflex Testing (QSART): sweat production test
What Treatments are available for POTS?
- Medications such as beta-blockers, SSRIs, and fludrocortisone can be taken to alleviate some of the symptoms, however a multi-disciplinary treatment protocol that includes occupational therapy and psychological therapy is recommended. That said, most of the recommended treatments involve lifestyle modifications that POTS patients can implement in order to minimize the impact that the syndrome has on their daily lives. The most frequently recommended lifestyle modifications are:
- Aerobic exercise: Light to moderate exercise can help to improve circulation. However, patients should start very slowly and gradually increase the length, frequency, and intensity, as too much too soon could worsen symptoms. Exercises that can be done while sitting or lying down (for example gentle yoga stretches, rowing, swimming, or recumbent cycling) are best.
Compression garments: Waist-high compression stockings can help improve circulation and minimize blood pooling in the legs. Abdominal binders and compression sleeves can also be helpful.
- Diet: Patients should eat mostly unprocessed foods. Sugar, sugary foods, white flour, alcohol, energy drinks, and caffeine should be avoided. Some patients may also benefit from eliminating gluten and dairy.
- Elevating the bed: Tilting/raising the head end of the bed can help patients with gastro-intestinal issues such as acid reflux.
- Elevating the legs: This helps improve circulation and minimize blood pooling.
- High fluid intake: Drinking 2 to 3 liters of fluid per day is recommended, in order to increase blood volume.
- Salt: A diet high in salt is usually advised, but may be contra-indicated if the patient has a condition such as hypertension. As always, it is best for patients to check with their doctor first.
- Shower chair: It can be safer to remain seated while showering, in order to avoid a potentially dangerous fall, and in order to minimize the onset of symptoms caused by standing for too long.
- Small, frequent meals: Large meals can exacerbate symptoms, so eating smaller amounts multiple times a day, rather than the standard 2 to 3, can mitigate against that.
- Standing slowly: Symptoms can become worse if patients stand suddenly. Remembering to get up slowly can help minimize the occurrence of symptoms.
- Temperature control: POTS can cause the body to experience extremes in temperature, so dressing in layers and keeping a shawl close at hand can make it easier to manage any fluctuations.
How does having POTS impact everyday life?
POTS can have a significant, long-lasting impact on a sufferer’s lifestyle, quality of life, and ability to work or study. Getting out of bed, taking a shower, driving, standing for too long; all of these basic everyday activities turn into challenges to be overcome.
Is there a cure?
There is no known cure for Postural Orthostatic Tachycardia Syndrome, and the long-term prognosis varies widely from patient to patient. Some POTS patients – usually those who develop the syndrome during adolescence – have been known to recover fully. About 50% of patients who develop POTS post-virally recover in 2 to 5 years. Those with a mild case may become symptom-free, while people with severe cases can suffer lifelong effects. The lifestyle modifications mentioned above can help improve overall quality of life, and joining a support group can help with maintaining a positive outlook.
Lisa Hurley is a writer, Reiki practitioner, and certified sun-seeker. She is originally from Barbados, and now lives in Jersey City, New Jersey with her Jack Russell terrier King. She also happens to have an invisible illness (uveitis), and a chronic pain condition. She is passionate about helping other chronic pain warriors find the information they need to navigate their struggles, and feel stronger, more supported, and less alone.
Lisa’s educational background includes a Bachelor’s in French, Spanish & Linguistics from the University of the West Indies, a Master’s in Music Business from New York University, and a Mini-MBA™ in Social Media from Rutgers University.
If you’d like to connect with Lisa, you can find her on Instagram, Facebook, and LinkedIn.