Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia, a dysfunction of the autonomic nervous system, which controls the automatic functions of the body such as heart rate, temperature regulation, sweating, digesting, resting, blood pressure, pupil regulation, vascular control and fight or flight response.
Before POTS was formally recognized as a diagnosis in 1993,1 many with the condition were misdiagnosed and not managed very effectively. Symptoms of POTS occur on a spectrum; some patients have very mild symptoms and continue to function normally in daily life while others face more severe symptoms that make it difficult to even stand up, cause syncope, and lead to patients becoming bedbound and relying on a wheelchair to get out of bed.2 Some patients will experience remission, while others may become progressively worse.3
Females are affected more than males in a 5:1 ratio,4 and it takes an average of four to five years to be diagnosed with POTS.5
Many patients with POTS also have or develop other illnesses and syndromes. The most commonly associated illnesses and syndromes are:
- Hypermobile Ehlers-Danlos syndrome6
- Mast cell activation syndrome6
- Sjogren’s syndrome7
- Hashimoto’s disease8
- Myalgic encephaloymyelitis/Chronic fatigue syndrome (ME/CFS)9
- Reynaud’s syndrome10
- Peripheral and small fiber neuropathy11
Researchers continue to try to identify the cause of POTS. There is increasing evidence that shows promise, describing POTS as an autoimmune disorder, as elevated antibodies have been detected in POTS patients.12 POTS has also been reported as developing following a viral infection, such as Epstein-Barr virus (EBV), and now COVID-19 “long-haulers” are also being diagnosed with POTS post-COVID.13, 14
How Is POTS Diagnosed?
Because so few physicians and healthcare professionals are familiar with POTS, a formal diagnosis can take years and may involve cardiologists and neurologists as well as internal and family medicine providers.
The necessary autonomic testing is usually performed in the hospital or clinic setting, with the Tilt Table Test being the most common. During this test, the patient’s heart rate, blood pressure, and cardiac rhythm are monitored. A diagnosis of POTS is made if the heart rate rises 30 beats per minute or more upon 10 minutes or less of upward tilt. In children, the diagnosis is made if the heartbeat rises 40 bpm or more. Fainting is also a common sign. Other autonomic tests that can be used to diagnose POTS include sweat tests, EMGs, and blood volume testing.15
How Is POTS Treated?
Currently there is no cure for POTS. Symptom management is the standard of practice. The symptoms are managed through medications that control blood pressure, heart rate, and blood volume. Medications to block adrenaline, antidepressants, and anti-anxiety drugs are also used, along with electrolytes and salt to maintain blood volume with IV fluids as a last resort for those who are unable to maintain blood volume.16
Diet modification is also often necessary since POTS can cause GI tract impairment. Small meals are recommended, as problems with digestion lead to an increase in cardiac symptoms, diarrhea, nausea, and constipation due to motility dysfunction.16
Adaptive equipment is often used to assist patient with POTS when it comes to ADLs and mobility. Both physical and occupational therapy are useful and necessary, as is mental healthcare to help patients develop coping skills and work through the process of grieving loss of function in those with more moderate to severe impairment.
Physical Therapy and Occupational Therapy for POTS
Physical and occupational therapy are highly useful to patients with POTS. Many become quite debilitated, presenting with decreased ADLs, decreased ability to stand or maintain an upright position, and decreased strength. Exercise intolerance is common.
As therapists, we can assess each patient and develop a treatment plan to build strength, along with tolerance to being upright and cardiovascular endurance. Many treatment plans for POTS begin with recumbent exercise while vital signs are monitored. It should, however, be noted that exercise is contra-indicated in cases where POTS is comorbid with ME/CFS and long-COVID.17
One popular treatment protocol is the Levine Protocol, developed by Benjamin Levine, MD, for astronauts in Dallas, Texas.3 This program begins with recumbent exercise and progresses to upright cardiovascular exercise with longer durations. Strength training is also addressed, often with exercises like leg presses and those that target upper body strength.
Therapists can also address standing tolerance, adaptive equipment, and mobility aids. Aquatic therapy is also a great modality for recumbent exercise. Splinting may be beneficial for those with hypermobile joints in the wrists and hands.
Many patients with POTS also experience dystonia, headaches, and what is sometimes referred to as “coat hanger pain,” suboccipital and paracervical pain that worsens in an upright position and is believed to be caused by poor blood flow to the muscles of the upper back and neck. Physical therapists can use soft tissue treatments to manage pain and muscle spasms.
As researchers continue to better understand the causes and treatments of POTS—and especially as the connection between POTS and COVID-19 is further researched—we can hope that we will gain more understanding of how to address this debilitating condition and, eventually, perhaps even find a cure.
- Schondorf, R. & Low, P. A. (1993). Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia? Neurology, 43(1), 132–7.
- Stephenson, D. (2020). Postural orthostatic tachycardia syndrome. Practical Neurology. Retrieved from https://practicalneurology.com/articles/2020-mar/postural-orthostatic-tachycardia-syndrome
- Fu, Q. & Levine, B. D. (2018). Exercise and non-pharmacological treatment of POTS. Autonomic Neuroscience: Basic & Clinical, 215, 20–27.
- National Institute of Neurological Disorders and Stroke. (2019). Postural tachycardia syndrome information page. Retrieved from https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page
- Schmidt, L. L., Karabin, B. L., & Malone, A. C. (2017). Postural orthostatic tachycardia syndrome (POTS): Assess, diagnose, and evaluate for POTS treatment (ADEPT). Integrative Medicine International, 4(4), 142–153.
- Kohn, A. & Chang, C. (2020). The relationship between hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). Clinical Reviews in Allergy and Immunology, 58(3), 273–297.
- Pasadyn, S. R., Warren, C. B., & Wilson, R. G. (2020). Utility of salivary gland biopsy in diagnosing Sjogren’s syndrome in a POTS patient population. Autonomic Neuroscience, 227, 102694.
- Blitshteyn, S. (2015). Autoimmune markers and autoimmune disorders in patients with postural tachycardia syndrome (POTS). Lupus, 24(13), 1364–9.
- Shanks, L., Jason, L. A., Evans, M., & Brown, A. (2013). Cognitive impairments associated with CFS and POTS. Frontiers in Physiology, 4, 113.
- Oztunc, F., Atik, S. U., Dedeoglu, R., Alp, F. E., & Gokalp, S. (2016). Cooccurrence of postural orthostatic tachycardia syndrome with two different clinical entities. Case Reports in Pediatrics, 2016, 8542158.
- Gibbons, C. H., Bonyhay, I., Benson, A., Wang, N., & Freeman, R. (2013). Structural and functional small fiber abnormalities in the neuropathic postural tachycardia syndrome. PLoS One, 8(12), e84716.
- Gunning III, W. T., Kvale, H., Kramer, P. M., Karabin, B. L., Grubb, B. P. (2019). Postural orthostatic tachycardia syndrome is associated with elevated G-protein coupled receptor antibodies. Journal of the American Heart Association, 8(18), e013602.
- Linkhorn, T. (March 16, 2021). Persistence brings new understanding to unique medical condition. The University of Toledo. Retrieved from http://news.utoledo.edu/index.php/03_16_2021/persistence-brings-new-understanding-to-unique-medical-condition
- Ward, M. (March 26, 2021). Long COVID brings welcome attention to POTS. Medscape. Retrieved from https://www.medscape.com/viewarticle/948174
- Johns Hopkins Medicine. (n/d). Postural orthostatic tachycardia syndrome (POTS). Retrieved from https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
- Cleveland Clinic. (2020). Postural orthostatic tachycardia syndrome (POTS). Retrieved from https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
- Phelan, D., Kim, J. H., & Chung, E. H. (2020). A game plan for resumption of sport and exercise after coronavirus disease 2019 (COVID-19) infection. JAMA Cardiology, 5(10), 1085–1086.