After 20-Year Search, 'Undiagnosable' Patient Gets Answer: POTS
After Experiencing Debilitating Symptoms, Including Regular Fainting Spells, for Two Decades, Kim Ryberg Finally Got Answers—and Her Life Back—at the Smidt Heart Institute
Kim Ryberg, 33, remembers the first time she fainted at age 13. Over the next two decades, Ryberg experienced life-altering symptoms like regular fainting spells, extreme vertigo and excessive hot and cold flashes. Her symptoms diminished her quality of life, leaving her unable to drive, work or have children with her husband, for fear of fainting and causing an accident. She sought answers from more than 50 doctors, but never received a diagnosis.
“I was repeatedly dismissed by medical professionals—and it was crushing,” said Ryberg, a Tarzana, California singer/songwriter. “I cannot tell you how many doctors told me my symptoms were a figment of my imagination, anxiety, stress or depression. I knew that wasn’t the case, so I continued advocating for myself and searching for answers.”
It wasn’t until Ryberg was referred to the Smidt Heart Institute at Cedars-Sinai that she received a firm diagnosis—and validation—that her declining health was in fact, real.
Her seemingly mysterious symptoms were diagnosed as a condition known as postural orthostatic tachycardia syndrome, or POTS.
POTS is associated with nervous system dysfunction and results in an abnormal increase in heart rate that occurs after sitting up or standing. The condition typically affects young women in childbearing age. The distinguishing symptoms of POTS are a rapid increase in the heartbeat of more than 30 beats per minute and a heart rate that exceeds 120 beats per minute, within 10 minutes of standing.
Many patients diagnosed with POTS, including Ryberg, also receive a diagnosis of Mast Cell Activation Syndrome and Ehlers Danlos Syndrome. Both can affect the heart and cause a myriad of other complicated symptoms.
Peng-Sheng Chen, MD, a national expert in the condition and Ryberg’s cardiologist, says POTS is easy to spot and diagnose, if medical professionals know what to look for. However, Chen says many physicians are still unfamiliar with the condition, which leaves patients like Ryberg often feeling helpless and frustrated.
“These patients are young and otherwise healthy, yet left unable to work, drive, exercise, have children or experience many of life’s ‘normalcies’ for fear of fainting,” said Chen, who leads one of only a few POTS clinics in the nation. “When my patients hear that their condition is real, and treatments exist to remedy many of its side effects, it often changes everything for them.”
For Ryberg, her diagnosis brought “unimaginable relief.”
“That is the only way I can describe the feelings of finally, after so long, having a real diagnosis and game plan for how to get my life back,” said Ryberg. “I went from feeling alone to suddenly having an entire team of experts surrounding me and rooting for me.”
Ryberg’s expert team includes not only her cardiologist, Chen, but also a psychologist, nurse, exercise physiologist and registered dietician. From this team, she learned that important lifestyle modifications—like drinking more water and wearing compression clothing—could greatly improve her symptoms.
POTS and Cardiac Rehabilitation
In addition to lifestyle modifications and beginning a new medication regimen, Ryberg was also referred to Cedars-Sinai's cardiac rehabilitation program led by Chrisandra Shufelt, MD, co-Director of the Preventive and Rehabilitative Cardiac Center and associate director of the Barbra Streisand Women's Heart Center.
While cardiac rehabilitation is rooted in exercise, Shufelt says it is more than just a workout.
“Most of our POTS patients feel fearful of exercise since it can immediately raise their heartbeat and activate symptoms,” said Shufelt, the inaugural Anita Dann Friedman Chair in Women’s Cardiovascular Medicine and Research. “Cardiac rehabilitation aims to not only strengthen the heart and body but give back confidence to patients through a supportive and monitored exercise program.”
For POTS patients participating in the cardiac rehabilitation program, Shufelt says slow and steady wins the race. Patients begin with seated equipment exercises only, and over the course of several weeks, incorporate upright exercises.
“Cardiac rehabilitation was frustrating at first, because I was used to pushing my body past its abilities,” said Ryberg. “The program taught me to learn my limits and accept those limits. It wasn’t easy, but I’m so much stronger and healthier for it today.”
Shufelt, who researched and developed a POTS-specific rehabilitation protocol, says this slow and controlled regimen makes for long-lasting results.
“We want these young and vibrant patients to leave rehabilitation with the tools and resources they need to maximize their health and wellbeing each day,” said Shufelt. “Most of all, we want patients to regain their quality of life.”
Regaining her quality of life has been Ryberg’s goal, too. After completing her cardiac rehabilitation program, adjusting to her new medical regimen and modifying her diet, Ryberg's health—and mindset—has improved drastically. Now she is more confident to drive and says she is feeling capable and more functional.
“Today, I am far kinder and more patient with myself,” said Ryberg. “I’m finally giving myself permission to not do everything, ask for help and accept that my body doesn’t function like others. These changes, coupled with my incredible care team, is transforming my life.”
Read more from the Cedars-Sinai Blog: Fighting Heart Disease in Young Women