Postural Orthostatic Tachycardia Syndrome (P.O.T.S.) might be the most common condition you've never heard of. Despite being estimated to affect one to three million Americans, most patients take years to be diagnosed and face struggles ranging from limited access to care, to being disbelieved by both family and medical providers, to being misdiagnosed or unable to get effective treatment.
What is p.o.t.s.?
P.O.T.S. is a form of dysautonomia
Dysautonomia is a disorder of the autonomic nervous system - the branch which regulates things like heart rate, blood pressure, sweating, and body temperature.
Postural: related to the position of your body
Orthostatic: related to standing upright
Tachycardia: increased heart rate
Syndrome: a group of symptoms
According to the Cleveland clinic, "Patients may develop POTS after a viral illness, serious infections, medical illness, pregnancy and trauma such as head injury. The condition may develop as aftermath of a significant illness (especially associated with hospitalization and prolonged immobilization)."
The majority of P.O.T.S. patients are women, many of them young women between the ages of 15 and 50. Often, they appear healthy on the outside, making P.O.T.S. an "invisible" disease.
We'd like to introduce you to three of them
Often overlooked or undiagnosed, P.O.T.S. is increasing in visibility as more and more patients are presenting with symptoms after recovering from COVID-19.
The process of getting a P.O.T.S. diagnosis can be extremely frustrating and disheartening. Many patients say they felt "crazy" as they tried to convince family, friends, and doctors that something was wrong.
"I'm going to suggest the answer is...You're seeing them [POTS patients] but you just don't recognize them."
Thomas S. Ahern, M.D.
The diagnostic criteria for P.O.T.S. is a heart rate increase of 30 beats per minute within the first 10 minutes of standing.
The body increases its heart rate in an effort to prevent blood from pooling in the lower limbs. P.O.T.S. patients' blood vessels can't do this efficiently, starving the brain of blood and leading to symptoms like lightheadedness and fainting.
The test monitors heart rate and blood pressure changes as the body changes posture and position. A healthy person's heart rate will increase about 10-15 beats per minute within 10 minutes after standing, about 15-20 beats per minute less than a P.O.T.S patient.
Living with P.O.T.S.
The journey to a P.O.T.S. diagnosis can be long, challenging, and frustrating. Being able to put a name to symptoms and have their experiences recognized and validated changes the way patients view themselves and are viewed by others.
With a diagnosis, patients can focus on their lives going forward - how are things different? What do I need to manage this syndrome? What does long-term care look like?
"We suggest you take an active role in your care"
Peter C. Rowe, M.D.
Daily life with P.O.T.S. requires constant management of energy and activity. For many patients, taking an active role in their own care can dominate their lives, fundamentally changing the way they spend time and prioritize energy.
"It's definitely a struggle every day of my life. not one day of my life is easy."
Emily Wilson
More faces of Pots
POTS can be an isolating syndrome, so we want to create community and awareness through story telling. Want to share your story or the story of someone you love? Send us a message and we will post your story here. Email: lsteincartford@sandiego.edu and koleksak@sandiego.edu for more information.
Olivia Chatman, 22
Swimmer Olivia Chatman was diagnosed with POTS at age 14. Check out her story below (Source: JasonCarterSports)
Flori Witenstein, 24
Diver Flori Witenstein was diagnosed with POTS at age 23.
"I never felt the same since a long recovery from concussion. It took almost a year to find the right medical team. I was told I was stressed about graduating or just dehydrated. After many tests the tilt table and a great medical team diagnosed me with hyperadrenergic POTS and persistent concussion symptoms. and my long list of symptoms were validated. Trust your gut and keep fighting for yourself. Although getting a diagnosis is hard to comprehend, it’s helpful to know more in order to heal your body. With help from meds., research, and many therapies including occupational and physical therapy recovery mode began. Over the course of a year, I went from the couch to working part time, walking a mile, and doing forward roles! The healing process continues as I work toward my daily life goals and professional goals to attend grad school for a Masters of Occupational Therapy. Athletes are trained to work for the win and now I've learned work is also resting, healing, and seeking help. I'm learning to trust my body again."
what can you do?
Get vaccinated against COVID-19 if you can. While POTS arises from many factors, contracting COVID-19 was a significant contributing factor for two of the three women in our group. Getting vaccinated lowers your risk of contracting COVID-19, which lowers your risk of developing POTS as a long-COVID symptom.
Educate yourself. POTS isn't the only "invisible" disease out there, and sufferers often have to spend precious time and energy educating others simply to get their basic needs met. Become an ally by learning about the requirements and accommodations POTS patients needs, and help whenever and however you can.
Actively listen. When someone describes what they're going through, give them your full attention. Listen in good faith, and try to see things from their point of view. Being doubted and disbelieved about what you're going through is incredibly stressful and can compound the problem. Having support and a listening ear, on the other hand, can make the whole ordeal a little easier to bear.
Learn more
Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness, and patient empowerment programs.
Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) Program is located at one of the few POTS centers in the US and is dedicated to treating adults and children with POTS
The National Institute of Neurological Disorders and Stroke supports and conducts research on dysautonomia, aiming to discover ways to diagnose, treat, and ultimately prevent these disorders.
references
American College of Cardiology. (2021, March 10). Is POTS a Long-Haul Post-COVID-19 Symptom? https://www.acc.org/latest-in-cardiology/articles/2021/03/10/20/13/is-pots-a-long-haul-post-covid-19-symptom
Aubrey, Allison. (2021, May 22). After Months of a Racing Heart and Burning Feet, a COVID Long-Hauler Gets a Diagnosis. NPR. https://www.npr.org/sections/health-shots/2021/05/22/996533041/after-months-of-a-racing-heart-and-burning-feet-a-covid-long-hauler-gets-a-diagn
British Heart Foundation. (June 13, 2014). British Heart Foundation - Your guide to tilt test – YouTube [Video]. YouTube. https://youtu.be/0zYwKl-YBtQ
Cleveland Clinic. (n.d.) Postural Orthostatic Tachycardia Syndrome (POTS). https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
Chung, Cindy. (2020) [Tilt Table Test Infographic] [Infographic] Very Well Health. https://www.verywellhealth.com/tilt-table-testing-1745418
DiGiulio, Sarah. (2021, March 24). 1 mom's story of living with POTS, a long-hauler symptom of COVID-19. Today. https://www.today.com/health/mom-pots-symptom-covid-t212641
Dysautonomia International. (2011). What is POTS? [Video] Vimeo. https://vimeo.com/dysautonomia/pots
Johns Hopkins Medicine. (n.d.) Postural Orthostatic Tachycardia Syndrome (POTS). https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
Raj, Satish R. (2013). Postural Orthostatic Tachycardia Syndrome (POTS). Circulation. 127 (23), 2336-2342. https://www.ahajournals.org/doi/10.1161/circulationaha.112.144501
Rowe, Peter C. (2014, March). General Information Brochure on Orthostatic Intolerance and Its Treatment. Dysautonomia International. http://dysautonomiainternational.org/pdf/RoweOIsummary.pdf
Thomas S. Ahern, M.D. (2019). Postural Orthostatic Tachycardia Syndrome [Video]. Vimeo. https://vimeo.com/338941906. Used with Permission
World Nature Video. (Feb 26, 2017). Sleep Sounds -1 Hour: Heartbeat Sound of Human Heart and Pulse - Sleep Video [Video].YouTube. https://youtu.be/OMqkv5RIPjk
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