POTS: "The most common condition you have never heard of"

(CNN / Meredith) – Super Bowl MVP Nick Foles is thrilled to lead the Philadelphia Eagles to victory, but that is not the triumph that he celebrates every day. He gives this medal to his wife, Tori Foles, for what he calls his "incredible strength" in the fight against a little-known disorder called postural orthostatic tachycardia syndrome, or POTS.

"They told me that I had a virus," said Tori, "but I've never heard of it when you were dizzy all the time and I could not often get out of bed.

POTS is a dysfunction of the autonomic nervous system, which controls the involuntary functions of the body, such as heart rate, blood pressure, digestion, breathing, blinking and urination. Although it can affect and affect any part of this system, the most common symptoms are deep fatigue, gastrointestinal problems and frequent and almost constant dizziness.

"It was hard for me because I was still healthy," said Nick Foles, "and I could see what she was experiencing, but she is amazing and we are getting closer. "

The couple spoke Saturday at the annual meeting of Dysautonomia International, a nonprofit organization dedicated to research, education and patient empowerment.

"Patients with Potsville syndrome do not behave well with gravity," said Dr. Satish Raj, medical director of the Autonomous Investigative Unit of the Libin Cardiovascular Institute of Alberta.

"Normally, when you get up, your heart rate will automatically increase from about 10 to 15 beats per minute to increase blood pressure and blood flow, and then stabilize," he explained. "In the POTS, there are at least 30 beats per minute within 10 minutes, some can reach 60 beats per minute, the brain jumps to stop and you faint.

"Mayo Clinic's research shows that the quality of life of POTS patients is similar to that of congestive heart failure or chronic obstructive pulmonary disease," said Lauren Stiles, co-founder of Dysautonomia International and president of POTS.

It is estimated that the POTS affects between 1 and 3 million Americans. But as few doctors are aware of the symptoms, experts believe that the numbers could be much higher, both in the United States and in the rest of the world. POTS support groups are located in Australia, Brazil, Canada, Egypt, France, Germany, Ireland, Israel, Japan, Mexico, the Netherlands, New Zealand and the United Kingdom. United.

"How many people are there? God knows," said University of Toledo Dr. Blair Grubb, a cardiologist who specializes in heart rhythm and autonomic disorders. "Are there many people there ever diagnosed because they are only moderately disabled?"

"I call it the most common condition you've ever heard of," Stiles said, adding that the Mayo Clinic estimates that one in 100 teens is developing a POTS.

The Foles are committed to to raise awareness about the disease. Nick Foles dedicated a chapter in his new book, "Believe It", to Tori and his struggles with the condition.

"One of the most difficult parts was Nick was at the peak of his career and our life was just beginning," said Tori. "But mine was now at the lowest."

Tori met Nick at the university when he was the quarterback for the Arizona Wildcats and she was a passer by for the university volleyball team. Both became good friends and started going out after graduation. When Tori was diagnosed with POTS at age 23, Nick was there to support her. They got married in 2014.

"It's crazy, we spent a whole month at the Mayo Clinic" he told reporters in interviews a few days before the Super Bowl. "We got engaged at the Mayo Clinic, we were married two months later in a courthouse because we knew we were going to run.

"We have never had a wedding ceremony, we have never had a honeymoon, but … just to see its strength, and see its determination and health improve. .. it's amazing. I know she's busy with it every day and I'm grateful to be able to make this journey of life with her.

Have you looked in depression?

Eighty percent of POTS sufferers are women and about half, like Tori Girls, are young and relatively healthy when the condition strikes. For this reason, they often have trouble finding a doctor who will take their symptoms seriously. In his blog, Tori recounted his 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 shape, have you looked at depression or the # 39; anxiety? "

She remembers to be later returned to the same doctor and insist on further tests.

"
He made me get up and took my vital organs, "she writes." My heart rate has risen by about 40 bpm. BINGO. If your heart rate increases by more than 30 bpm at rest, you have POTS and your autonomic nervous system does not regulate things. It took a minute to understand. It makes me crazy to talk about it. "

Despite her difficulties, Tori Foles said that she was lucky. It only took six weeks to be diagnosed with a POTS. According to Vanderbilt and the University of Calgary, the largest POT survey to date has revealed that most people accessed an average of seven different physicians on average for four years before getting a POTS diagnosis . As bad as these statistics sound, it's better today than it was ten years ago, Stiles said.

"People were misdiagnosed for 10 years, 20 years, it was horrible," she said. "And it was not just one or two people, it was just about everyone."

The survey of 4 178 POTS patients diagnosed also found that, like Tori Foles, over 75% said that their symptoms were psychological; a quarter said that they had been treated for a mental disorder before obtaining an accurate diagnosis. These figures were echoed by a study of 779 patients in the UK: 48% were informed that they were suffering from a psychiatric disorder or were hypochondriacs.

Elaine Atha and Valerie Kraft, both 18, are familiar with this attitude. "I was told that I was anxious and depressed," said Atha. "Several doctors have said that I was just going through puberty."

Kraft said her first cardiologist had told her "it was a woman's affair" and that everything was in her head. "Other doctors told me that I was doing it to attract attention and that some anxiety meds would clear it up," she said.

"I was told you were doing this because you are 31 years old and you do not have babies yet and you are trying to get your husband's attention," he said. Stiles recalls. "It was my favorite."

Approximate route to diagnosis

Stiles was a New York lawyer with an active and sporty spirit when she suddenly developed POTS symptoms after a snowboard accident in 2010. POTS patients can often screen for the onset of acute symptoms to a disease or condition. a specific event, such as a viral illness, surgery or trauma.

In four days, Stiles was bedridden. She said the doctors diagnosed her everything from "Everything is in your head" to rare neuroendocrine cancer. The doctors even started a cancer treatment, but after two months of research for a tumor "that did not exist," she said the doctors were confused and wanted to release her.

"So, I put on my lawyer's hat and I thought," I can not go home, you do not discharge me until you understand me, I'm glad it's not cancer, but what is it? "Stiles remembered asking for a doctor." And the doctor literally shrugged and walked out of my hospital room.

Frustrated and scared, Stiles went on the Internet and began to googling his symptoms. She found what seemed to be the answer: POTS. She printed 30 journal articles, highlighted her symptoms, and wrote her test results in the margins where they fit a description. Then she handed the papers to her neurologist and asked her to read.

"Of course, the neurologist told me," Do not go on the Internet, "said Stiles." But he brought them home, he read it overnight and he came back the next morning and I did not kidnap you, "he said. "Holy *** You have POTS."

A life changing event

For Stiles, his fight with POTS was a call to action. In 2012, she started Dysautonomia International and started filling her board of directors and medical advisory committees with all the stand-alone experts she could find who were familiar with POTS and other forms of dysautonomia. She commissioned the website with support groups, tips on how to deal with POTS, information on how to find a competent doctor, and education for doctors, employers, and family. and friends.

An annual meeting attracted a growing number of patients and their loved ones eager for information and support. Stiles began inviting major research institutions to lectures, and excited about the opportunity to review hundreds of people diagnosed with POTS in one place, they began to collect family history, test results medical and blood serum samples.

According to experts, research on POTS is essential because so little is known about dysfunctions of the autonomic nervous system. The symptoms vary from one person to another and can be triggered by a wide variety of underlying diseases and conditions.

The researchers are studying a possible link between POTS and autoimmune markers, genetic markers, hormones such as norepinephrine, and activation of mast cells – a kind of allergic response. Other scientists are taking a closer look at the devastating symptoms of POTS, including cognitive dysfunction, gastric distress, fainting and poor sleep.

POTS treatment

At this time, treatment for POTS is limited. Some drugs, used off-label, may help in the short term; the long-term effectiveness is not known. They are told to treat their symptoms with lifestyle adjustments, including drinking two to three liters of fluid a day, wearing compression stockings to improve blood circulation, and doing exercises for one hour a day such as swimming, rowing or lying down.

"When you're in a state of chaos or almost bedridden, exercise may seem impossible," Stiles said. "But you just have to do the right kind of exercise, at the right pace and develop a tolerance." Dysautonomia International has suggested exercises for each level on its website.

Considering the company's push to limit salt due to the explosion of hypertension, the most unusual recommendation given to POTS patients is to add up to 10,000 milligrams of salt. one day to their diet.

"They should take off their hair," Raj said. "Add V8 tomato juice, soy sauce, lots of salty foods, or take salt supplements with three liters of water. You want to increase blood volume and flow to the heart. "

While the condition can be devastating – the POTS survey found that 33% of respondents had claimed disability benefits – most people can lead a somewhat normal life. A Mayo Clinic study asked pediatric POTS patients seen between 2003 and 2010 for their long-term prognosis. Nineteen percent of respondents stated that they had fully recovered; 51% had persistent but improved POT symptoms; and 16% had intermittent problems.

"It's variable," Stiles said. "There are patients who have a flat bed and can not even go to the doctor, and there are others who can literally climb mountains.

For Nick and Tori Foles, their "mountain" added a baby to their family. The daughter Lily James was born in June 2017.

"I've always known that I wanted to have children, but there were days when I could not take care of myself," said Tori, "so how could I take care of a baby? ? "

But while she was focusing on healthy eating, meditation, sleep, liquids, and exercise, she found that she was able to meet the challenge.

"I had to be more disciplined to take care of her," Tori said. "Having a system and a routine is important."

Nick added, "We have put our priorities, our faith, our family, and everything afterwards in order. straight ahead."

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