In order to fully understand POTS, you need to not only comprehend human physiology but also grasp the physics involved in the simple act of standing up.
Dr. Blair Grubb, distinguished university professor of medicine and pediatrics at the University of Toledo, has devoted more than 30 years to this very topic. Regarded as one of the world’s leading authorities on POTS, Grubb explains that when you stand, gravity attempts to pull down roughly one-third of your body’s blood volume. The brain senses the change and tells your heart to beat faster and more forcibly while also instructing the blood vessels in the lower half of your body to constrict to one-third their size.
“Once you’re upright, you have to maintain those changes because gravity will just keep on pulling on you,” says Grubb. Otherwise, the blood rushes from your brain, which leads to fainting. “If you can’t maintain, gravity wins, and you lose,” he says.
POTS falls under the umbrella of dysautonomia, a dysfunction of the autonomic nervous system. Although Grubb can point to medical papers from the 1870s that describe POTS, the condition was only officially diagnosed in 1993. An estimated 500,000 to 1 million people are living with the syndrome in the United States, although an exact number is difficult to determine because so little is known about it. A cause has not been definitively identified, there is no cure, and treatment — which ranges from dietary restrictions to beta-blockers to lifestyle therapy — varies depending on individual symptoms.
Grubb stresses that a key part of treatment involves attending to the mind as much as the body, because many afflicted with POTS often look the same as they did before the syndrome manifests.
“Patients can become angry, mean, bitter, tearful and withdrawn,” says Grubb. “Many become ostracized, lose their employment, surrender contact with the world and eventually fade into nothingness.”
Lauren knows that progression of emotions all too well.
Physically, her energy level is a fraction of what she calls her “old life.” Some days, getting off the couch is a monumental effort. She frequently needs a motorized cart for a run through the grocery store.
In late May, she returned to The Alan Cox Show, just in time for the annual Alan Cox Show Comedy Tour, a signature event she used as her goalpost to recovery. It was her first time back on the air since she had fainted months earlier.
“It was amazing to be able to talk about POTS on the air,” she says. “Putting words to all the pain I had been experiencing and starting to let people know about this mystery illness was emotional and empowering.”
Since then, Lauren spends less time at WMMS’ Independence studio than before the diagnosis. Instead, she wakes up around 6:30 a.m. and begins her daily routine of salty foods and hydrating with electrolytes. She spends as much time as possible with her feet up, gathering energy in her living-room-turned-sanctuary that’s decorated with fresh peonies, bright decorative pillows and wall wreaths she crafted herself.
At 10:30 a.m., she brushes up on the latest pop culture news or quirky stories that would make for good radio fodder. At the studio about two hours before the show airs, she sits in a special reclining chair that helps her blood flow by keeping her feet off the ground.
But even then, Lauren can begin feeling dizzy or faint during the four-hour afternoon-drive show and needs to lie down in a room just a few doors from the recording studio.
By 6:30 p.m., she’s wiped out, barely able to make it back home before completely passing out. Some days she is able to pull off this routine; others times, she can’t.
“When she has a decent day, we relish that day,” says Ver. “But they’re few and far between.”
Since her diagnosis, Lauren has cycled through several medications searching for an effective combination, from pills that slow down her heart rate to antidepressants that help manage the fainting spells. The treatments have wreaked havoc on her sleep schedule, which then exacerbated her already fragile mental state.
In April, one beta-blocker she took to manage her heart rhythms affected her sleep so dramatically that she found herself Googling different ways of suicide.
“I was out of my mind,” admits Lauren, getting choked up. “I couldn’t understand why I wasn’t getting better and just couldn’t accept that there is no cure to this thing that has destroyed my life.”
Still Lauren is determined to improve. She strictly adheres to her new lifestyle, including a low-carb diet and light exercise.
“I used to fly by the seat of my pants, forget my keys, be generally unorganized,” says Lauren. “Now I am constantly thinking ahead, writing reminder notes and keeping focused on sharing gratitude with those around me.”
It’s forced Ver to make changes, too.
“I miss being able to take Erika out for a simple dinner,” he says. “Now we spend a lot of great time at home together, but that’s a lot different than our lives out and about from only two years ago.”
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With the energy she can muster, Lauren is working to build awareness of POTS.
The profile of the syndrome got a significant boost in June when Philadelphia Eagles quarterback and Super Bowl MVP Nick Foles, whose wife, Tori, suffers from the condition, spoke at the annual meeting of Dysautonomia International, a nonprofit association dedicated to education, research and patient support.
“We need more people like that to come forward,” says Lauren. “There aren’t a lot of high profile events or fundraisers associated with POTS. Just a ton of blank looks when you try to explain this illness that has wrecked your life.”
In June, Lauren met a group with POTS at the Cleveland Clinic. Before that, she had never been able to sit and chat with others in the same situation. Most POTS patients are women; this group’s participants ranged from young women who could no longer play the sports they loved to middle-aged women whose friend circles disappeared when they could no longer attend social events.
“Before meeting those women, I felt like I was the only one in the world struggling in this way with POTS,” says Lauren. “It was so unbelievably validating to my experience. I’m looking forward to having that group over to my house at some point soon when I can get up the energy.”
But like so much in her life since the diagnosis, even that is uncertain. Her contract with The Alan Cox Show is up in 2019. Given her decreased participation this past year, she is not sure what is ahead for her in broadcasting.
“I just need to have a few good days in a row, and that hasn’t happened in a long while,” says Lauren. “There’s so much I want to do in life, but for right now, I just want to be able to easily get up off of this couch and give my friends a hug.”