Solange Says She’s Living With This ‘Debilitating’ Condition — And Diagnoses Are Rising
Solange Knowles recently shared that she’s been living with “debilitating” and “confusing” symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) after model Shaun Ross posted on social media last month that he developed the condition after experiencing long COVID.
The “Cranes in the Sky” singer took to the comments section of one of Ross’ Instagram posts to share that she’d also been struggling with POTS. The condition is an autonomic nervous system disorder that causes an exaggerated increase in heart rate when transitioning from lying down to standing, according to Johns Hopkins Medicine.
Knowles, who has talked about living with health issues before, said she was diagnosed with POTS and two other medical conditions in 2018. She also deals with Sjogren’s syndrome, an autoimmune disorder that targets moisture-producing glands, and Mast Cell Activation Syndrome (MCAS), a condition that “causes intense episodes of swelling, shortness of breath, hives, diarrhea, vomiting and other symptoms” per the Cleveland Clinic.
On Instagram, Knowles praised Ross for publicly sharing his journey with POTS while describing her own experience with the disorder as a “lonely” one.
But while it may feel isolating, Knowles and Ross are part of a growing group of people living with the disease. Diagnoses of POTS have been rising, and researchers are continuing to study links between the disorder and COVID-19 and long COVID.
What are the symptoms associated with POTS?
Symptoms for POTS vary from person to person but may include severe fatigue, brain fog, lightheadedness, forceful heartbeats, headaches and intolerance of exercise, among other symptoms.
“If you have POTS, your body can’t coordinate the balancing act of blood vessel constriction (squeezing) and heart rate response,” according to the Cleveland Clinic, which notes that the imbalance can cause dizziness and fainting when transitioning to standing upright.
The disorder is estimated to affect 1 to 3 million people in the U.S. But POTS could be more prevalent than what’s been reported.
“POTS can be underdiagnosed because the symptoms are not unique and specific to the syndrome and there is no identified gene associated with it,” Dr. Susan Cheng, associate dean for public health practice at Tulane University’s School of Public Health, told HuffPost.
What causes POTS?
Researchers aren’t exactly sure what causes the condition, which is a form of dysautonomia, which is an issue that occurs when the body’s automatic nervous system doesn’t function as it should. The majority of people diagnosed with POTS are women.
Cheng said that while the exact cause is unknown, there are several theories about what causes the condition, such as familial links, viral triggers and immune system insufficiency. She added that POTS could develop after another chronic condition.
Researchers and medical experts are also currently researching the links between COVID-19, long COVID and POTS.
Dr. Amesh Adalja, a senior scholar at the Johns Hopkins Center for Health Security, told HuffPost that “the actual mechanism linking COVID-19 infection and POTS has not been fully discovered,” but “several hypotheses such as autoimmunity, autonomic nervous system dysfunction, and others are being investigated,” he said.
Someone is considered to have long COVID when their symptoms from COVID-19 persist for more than 12 weeks after contracting the virus. Some people experiencing ongoing symptoms after contracting COVID-19 may actually have POTS, according to an article published by Johns Hopkins.
Cheng pointed out that while reports suggest that some patients first notice symptoms of POTS after a COVID-19 infection, it’s “difficult to discern whether this is a correlation or causation without establishing detailed timelines.”
Dr. Arthur L. Jenkins, a neurosurgeon who specializes in nervous system disorders such as POTS, explained to HuffPost that while hypotheses about the links between COVID-19 and POTS “haven’t been definitively proven yet,” there does “appear to be more POTS in patients who have had COVID, than those who haven’t.”
“But I also suspect we’re also looking for it more now than we did 10 years ago,” he added.
Is POTS becoming more prevalent overall?
Research has suggested that cases of POTS have increased since the start of the pandemic, but there could be several factors contributing to the rise in reported cases.
Jenkins said that he’s seen more “general recognition” of POTS and that he believes in the past, people with the disorder had more commonly experienced “medical gaslighting” when discussing their symptoms, in addition to misdiagnoses.
He also explained that while there’s ongoing research and hypotheses about how long COVID could affect the autonomic nervous system, the virus could also magnify the symptoms associated with POTS, which could, in turn, lead to more awareness and diagnoses of the disorder.
What do I do if I suspect I have POTS?
People who suspect they have POTS should refer to a medical professional for an evaluation.
There is no known cure for POTS, but for most patients, the condition can be managed with diet, exercise and medications, according to Johns Hopkins Medicine.
Jenkins added that it’s important that people not assume the symptoms they’re experiencing are “normal.”
“Don’t just assume it’s purely COVID or long COVID,” he said, urging people to seek out medical professionals who specialize in dysautonomia, as well as the consequences of COVID-19.
“Be your own best advocate,” he said. “Not everybody will validate everything you believe, but that doesn’t mean you have to take every ‘No’ as a final ‘No.’”
