A doctor said it was all in her head, but it was ‘the most common condition you’ve never heard of’Posted June 26, 2018
By Sandee LaMotte, CNN, June 26, 2018
Super Bowl MVP Nick Foles is ecstatic about leading the Philadelphia Eagles to victory, but that’s not the triumph he celebrates daily. He gives that medal to his wife, Tori Foles, for what he calls her “amazing strength” in fighting a little-known disorder called postural orthostatic tachycardia syndrome, or POTS.
“They told me I had a virus,” said Tori, “but I had never heard of one where you are dizzy all the time. There were a lot of times I couldn’t get out of bed.”
POTS is a malfunction of the autonomic nervous system, which controls the involuntary functions of the body, such as heart rate, blood pressure, digestion, breathing, blinking and urination.
While it can and does affect any part of that system, the most frequent symptoms are profound fatigue, gastrointestinal issues and frequent, almost constant lightheadedness.
Tori and Nick Foles, right, spoke about POTS at a conference this month.
“It was tough for me because I was still healthy,” said Nick Foles, “and I could see what she was going through. But she’s amazing and we’ve grown closer together.”
The couple spoke Saturday at the annual meeting of Dysautonomia International, a non-profit association dedicated to POTS research, education and patient empowerment.
“POTS patients do not do well with gravity,” said Dr. Satish Raj, medical director of the autonomic investigation unit at the Libin Cardiovascular Institute of Alberta.
“Normally, when you stand up, your heart rate automatically goes up about 10 to 15 beats per minute to increase blood pressure and blood flow and then stabilizes,” he explained. “In POTS, it’s at least 30 beats a minute within 10 minutes; some can be as high as 60 beats per minute. The brain jumps in to shut that down and you become faint.”
“Research from Mayo Clinic shows that the quality of life in POTS patients is similar in what is seen in congestive heart failure, or chronic obstructive pulmonary disease,” said Dysautonomia International co-founder and President Lauren Stiles, who is also a POTS patient.
It’s estimated POTS affects between 1 and 3 million Americans. But since so few doctors are educated on the symptoms, experts believe numbers could be much higher, both in the US and in the rest of the world. POTS support groups are found in Australia, Brazil, Canada, Egypt, France, Germany, Ireland, Israel, Japan, Mexico, the Netherlands, New Zealand and the United Kingdom.
“How many people are out there? God only knows,” said University of Toledo Dr. Blair Grubb, a cardiologist who specializes in autonomic and heart rhythm disorders. “Are there a lot of people out there never diagnosed because they are only moderately impaired?”
“I call it the most common condition you’ve never heard of,” said Stiles, adding that the Mayo Clinic estimates 1 in 100 teens develop POTS.
Categorized in: Ehlers-Danlos in the News