Diagnosis: Unusual

A doctor said it was all in her head, but it was 'the most common condition you've never heard of'

Tori Foles, left, and her husband, Nick Foles of the Philadelphia Eagles, celebrates after the NFC Championship game in January 2018.

Story highlights

  • POTS is a little-known disorder causing heart palpitations and fainting
  • It's mistaken as a "teenage syndrome" but affects ages 12 to 50, mostly women

(CNN)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.
    The Foles are committed to raising awareness about the disorder. Nick Foles has dedicated a chapter in his new book, "Believe It," to Tori and her struggles with the condition.
    "One of the hardest parts was Nick was at the top of his career and our life together was just beginning," said Tori. "But mine was now at rock bottom."
    Tori met Nick in college when he was the quarterback for the Arizona Wildcats and she was a setter for the university's volleyball team. The two became good friends and began dating after graduation. When Tori was diagnosed with POTS at age 23, Nick was there to support her. They married in 2014.
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    "It's crazy, we spent a whole month at the Mayo Clinic," he told reporters in interviews just days before the Super Bowl. "We got engaged at the Mayo Clinic, we got married at a courthouse two months later because we knew we were in for a run.
    "We've never had a wedding ceremony, we've never had a honeymoon, but ... just to see her strength, and to see her determination and her health continue to improve ... it's amazing. It gives me strength because I know she deals with it every single day. I'm grateful that I get to go on this life journey with her."

    'Have you looked into depression?'

    Eighty percent of POTS sufferers are women and about half, like Tori Foles, are young and relatively healthy when the condition strikes. Because of that, they often struggle to find a doctor who will take their symptoms seriously. In her blog, Tori related her experience with a cardiologist:
    "I will never forget when he looked at me in his office and said: 'You are young and healthy. You are in perfect condition. Have you looked into depression or anxiety?' "
    She recalled going back later to the same doctor and insisting on further tests.
    Diagnostic criteria for POTS

    In adults:

    • A heart rate increase of 30 beats/minute within 10 minutes of standing typically diagnosed with a tilt-table
    • Absence of orthostatic hypotension

    In children:

    • A heart rate increase of 40 beats/minute within 10 minutes of standing
    • Absence of orthostatic hypotension

    Additional testing may include:

    • QSART test (measure of autonomic nerves that control sweating)
    • Thermoregulatory sweat test (measures sweat pattern)
    • Gastric-emptying tests
    • Skin biopsy to examine small fiber nerves

    Source: Dysautonomia International

    "
    He had me stand up and took my vitals " she wrote. "My heart rate went up by about 40 bpm. BINGO. If your heart rate is increasing by more than 30 bpm upon standing, then you have POTS and your autonomic nervous system is not regulating things. It took 1 minute to figure out. It makes me mad just talking about it."
    Despite her struggles, Tori Foles said she was lucky. It only took six weeks before she was diagnosed with POTS. The largest survey on POTS to date, done by Vanderbilt and the University of Calgary, found most people saw an average of seven different doctors over an average of four years before getting a POTS diagnosis. As bad as those statistics sound, it's better today than a decade ago, said Stiles.
    "People were getting misdiagnosed for 10 years, 20 years, it was horrible," she said. "And it wasn't just one or two people, it was pretty much everyone."
    The survey of 4,178 diagnosed POTS patients also found that, like Tori Foles, more than 75% were told their symptoms were psychological; one-fourth said they were treated for a mental disorder before they got an accurate diagnosis. Those numbers were echoed by a study of 779 patients in the UK: 48% were told they had a psychiatric disorder or were hypochondriacs.
    Elaine Atha and Valerie Kraft, both 18, are quite familiar with that attitude. "I was told I was anxious and depressed," said Atha. "Several male doctors told me I was just going through puberty."
    Kraft said her first cardiologist told her "it was a woman's thing" and was all in her head. "Other doctors told me I was doing it for attention and some anxiety meds would clear it up," she said.
    "I was told you're just doing this because you're 31 and don't have babies yet and you are trying to get attention from your husband," recalled Stiles. "That was my personal favorite."

    Rough road to diagnosis

    "I was bedridden and my GI tract had stopped working. I was getting weird, stabbing pains all over my body," Stiles said.
    Stiles was a successful New York lawyer with an active, athletic lifestyle when she suddenly developed POTS symptoms after a sn