Dysautonomia: A battle with an Invisible Illness
NEW ORLEANS (WVUE) - It’s been called the most common condition you’ve never heard of.
Dysautonomia affects millions of people, and many of them are told by doctors it’s all in their head. So, for many, it’s a rough road to diagnosis.
In 2013, Stacy Campo became an avid hunter of feral hogs in lower St. Bernard Parish.
“They’ll tear up levees and sides of roads. You can see them rooting up the ground. They cause a big problem,” she said.
In four years, she shot and killed almost 120 of the wild animals.
“Out of 365 days a year, I hunted at least 340,” Campo said. “Day and night by myself, cutting grass, putting out feeders, doing everything by myself.”
Until last year, when she noticed her blood pressure was extremely low.
“One day I killed a hog, and I said, I can’t do this.”
Her body’s fuel tank seemed to be on empty. She looked normal, but this wife, mother of five and grandmother was drained and dizzy. She began fainting when she stood up or exerted too much energy.
“Finally I said, something is really wrong, do any kind of test you need to do, we need to do something,” Campo said. “And the doctor said, ‘Oh it’s nothing, you’re just high-strung.’"
It would end up being much more than that. It was an invisible illness that a friend, Carmen Gonzales, had already been battling for years.
“Most people jump out of airplanes to get an adrenaline rush,” Gonzales says. “I just stand up.”
This single mom raising two kids got her first taste of it in 2009.
“I put my hands above my head to dry my hair and passed completely out. I fell right on my face, knocked my teeth out, broke my jaw, and got stitches under my chin,” Gonzales said.
Doctors suspected a heart problem and put in a pacemaker and defibrillator.
But Gonzales said it kept happening again and again.
“My heart rate was 230 beats a minute and my blood pressure was 60 over 30. Next thing I knew, they were life-flighting me to the hospital,” Gonzales said. “Twenty-eight times to the hospital in a two-year period is when they decided to send me to Vanderbilt. And when I got to Vanderbilt, they did all the same testing and doctors knew right away what it was.”
It was dysautonomia, a little known disorder that throws your whole body out of whack.
“Think of it as your automatic system is not working,” said Dr. Umesh Patel, a cardiologist in Covington.
He said the autonomic nervous system, which controls essential functions like heart rate, blood pressure and digestion, simply malfunctions.
“Each system looks okay on the outside, but it is actually the control system, which governs all of them, that’s not working,” Patel said.
As a result, a patient's heart races and blood pressure drops when they stand up. Some have trouble with digestion, and many suffer from profound fatigue.
“This fatigue is like it sucks it out of you fatigue,” Patel said. “You’re going around your entire life not having energy.”
It hit Victoria Moghadammi like a ton of bricks.
“December, February and January were the three worst months of my life,” Moghadammi said. “I was practically bedridden. I couldn’t stand up without feeling like I ran a marathon.”
Moghadammi's symptoms started after a car accident and concussion last year.
“In physical therapy on November 28th, 2017, I was dry-needled, which is similar to acupuncture. That’s when my entire world flipped upside down,” Moghadammi said. “The night I was dry-needled, I woke up in the middle of the night. I’m pretty sure I stopped breathing. I woke up and I was gasping for air.”
The 29-year-old online sports and entertainment reporter in Nashville was bedridden for three months. She was out of work for seven months.
She had never heard of dysautonomia when she was finally diagnosed with a form of it, called POTS, or Postural Orthostatic Tachycardia Syndrome.
“There were so many nights when I was afraid to go to bed. I was having so many palpitations and I couldn’t exhale all the way,” Moghadammi said. “My anxiety was through the roof. And I had doctors looking at me, telling me I was crazy, ‘It’s just anxiety, you’ll be fine.’”
Dysautonomia affects millions of people in the United States and tens of millions of people worldwide. It also affects more women than men. But patients are often labeled hypochondriacs because there’s a lack of knowledge about the disorder.
Dr. Patel has treated hundreds of patients in Louisiana, but said there are many physicians who don’t understand the symptoms and don’t make the connection.
“It does make you feel crazy. It absolutely makes you feel crazy,” Campo said.
There is no known exact cause and no cure for dysautonomia, but it is treatable. Campo said she is on a low dose of Midodrine to lower her heart rate and raise her blood pressure. Gonzales has made progress since starting on the drug Northera, which the FDA approved a few years ago.
“Now I’m off the front porch, I go to the grocery store, I can go visit my grandchildren, and I don’t need a 24-hour caretaker - it’s huge,” Gonzales said.
And Moghadammi is back at work. She chose a holistic approach, changed her diet and is learning how to manage and live with POTS.
But it's been a long road for all three women.
“It’s mortifying when you go to some of the most specialized doctors and they still don’t understand exactly what you have and they don’t even know what to tell you to do,” Moghadammi said.
Which is why all three have made it their mission to raise awareness. Gonzales plans to visit every parish in the state to talk about Dysautonomia. In October, the Mercedes-Benz Superdome was lit up in turquoise to draw attention to the mysterious condition. Those who suffer from it want the most common ailment you’ve never heard of to become a household name.
“We want to make sure the next person coming down the road doesn’t have to go five to seven years without a diagnosis,” Gonzales said. “We hope we could get a diagnosis right here in the state of Louisiana.”
Research is so critical since so little is known about exactly what causes the autonomic nervous system to malfunction. Patients can often trace the onset of acute symptoms to a specific illness or event, such as a viral illness, major surgery or trauma.
Doctors say stress could also be a factor.
To learn more about Dysautonomia, click here.
There’s also a Facebook page.
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