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By Leksi Schuchman
POTS patient getting an infusion. [Photo by Aleksi Schuchman]
Postular Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that affects individuals differently, with symptoms ranging from palpitations, dizziness, blurred vision, mental fatigue, collapse, shortness of breath, and chest pain.
It is a form of dysautonomia that affects one to three million Americans, the majority being women between the ages of 15 to 30.
On average, it takes nearly six years for POTS patients to receive a diagnosis. Additionally, 59% of patients report being told their symptoms were “all in their heads,” despite peer-reviewed research showing that POTS patients are no more likely to experience anxiety than the general population.
The syndrome is frequently misdiagnosed or identified late, which can severely impact a patient’s well-being and disrupt daily life. According to a Script Med Case Report, “POTS should be considered early in the differential diagnosis, especially in young women of childbearing age who complain of orthostatic intolerance.”
Despite women making up the majority of POTS patients, many struggle to receive an accurate diagnosis. Only 25% of POTS patients are diagnosed within the first year of experiencing symptoms, leaving most to navigate prolonged uncertainty and inadequate treatment.
College student Frankie Meehan was diagnosed with Postular Orthostatic Tachycardia Syndrome at the age of 15. Meehan received a concussion in early September 2018 and quickly noticed her symptoms were unusual and more intense than previous concussions.
She was extremely dizzy, fatigued, and was experiencing weird coloring in her extremities. Meehan’s concussion specialist immediately referred her to a cardiologist.
“I did this test where you lay down for five minutes, and then they take your resting heart rate and blood pressure and then you stand up and they take it again after a few minutes and then again after five minutes. They found that my blood pressure and heart rate weren’t responding like they were supposed to they weren’t coming back down,” said Meehan.
Meehan’s POTS diagnosis was confirmed through a procedure known as the tilt table test. Though Meehan received her diagnosis faster than most, it was only the start of her medical journey.
“In March of my sophomore year, I had a migraine that didn’t go away for 40 days,” Meehan said. When she sought help from a doctor, she was told, “I just needed to get used to life with migraines. This was just a new thing to adjust to,” she recalled. “And I was like, oh my gosh, I’m 16—don’t say this to me. I don’t want this to be the rest of my life.”
Meehan often attended doctor’s appointments alone, as her parents couldn’t afford to miss work. The isolation and frustration took a toll.
“It is so hopeless, so discouraging, and makes you feel like nobody cares,” said Meehan. She believes being a young woman influenced how seriously her pain was taken. “It wasn’t until my dad started coming to appointments that I felt like they listened to me.”
Now, six years after her diagnosis, Meehan shared her advice to young women struggling to receive a POTS diagnosis. She stated the importance of finding community and resources even though they are not easily accessible, and said above all else, “Don’t stop when someone gives you resistance.”
Meehan being treated in the hospital. [Photo courtesy of Frankie Meehan]
Meehan is not alone in her experience. April Friesen, a volunteer with Dysautonomia International and a POTS patient herself said, “In my time of being sick, I have probably talked to 20 to 30 potsies (POTS patients), and I think the shortest I have ever heard was 10 months.”
Friesen was diagnosed with POTS when she was just 13 years old. She said, “I became pretty extreme pretty quick, my resting heart rate was about 130(bpm).”
Even after her diagnosis, Friesen encountered skepticism. “When I was at the pain clinic at Children’s Hospital Colorado, I was doing physical therapy and my physical therapist– I said I have POTS – and she said ‘We don’t say that here.’”
Despite these challenges, Friesen is still hopeful. “It gets better,” she said.
She also highlighted the importance of having supportive people in your life.
“Having someone who not only will be like ‘I get it I’m so sorry’, but also someone who is going to say ‘get your ass up you need to fight,’” she said.
Turquoise Dysautonomia/POTS awareness ribbon. [Photo courtesy of Ribbon Factory]
Julia Creech, another POTS patient, shared her diagnostic experience detailing the lack of guidance she received after being diagnosed.
“The doctor that diagnosed me said ‘You have POTS and here’s a pamphlet on it, and really you just need to like drink more water and get up slower and eat more salty food,’” Creech said.
Creech recalled feeling uncertain and unsupported after her diagnosis.
She said, “After I left that (appointment) I was like, ‘Well that’s great that I’m diagnosed with this’ but I didn’t really know what I could do to help it besides what he had said, which didn’t really seem like much.”
Her doctor never followed up with her after delivering the diagnosis.
Still navigating the medical system, Creech shared her advice for other young women in her position: “Be firm in what you are saying and what you know about your body…It’s your body, and you know it better than they do.”
For many women, the road to diagnosis is filled with dismissal and misinformation.
College student Layne Rawlings recalled being dismissed by healthcare professionals, including a therapist who accused them of “seeking attention” and by an ER doctor who labeled their symptoms as “just a panic attack.”
“Going into the different hospital and medical settings as a young, female-bodied, person of color, (when) I’m often not conscious in these places,” Rawlings explained “It’s my girlfriend or my college friends that are trying to explain everything that’s going on and trying to get me help.”
After eight years of symptoms, Rawlings finally received a POTS diagnosis.
Since starting college, Rawlings said, “I’ve been able to find a really good community and start to figure out all of the things I have been experiencing symptoms of for as long as I can remember.”
As women with Postular Orthostatic Tachycardia Syndrome (POTS) continue to face delays, dismissals, and misdiagnoses, their voices and advocacy remain crucial in the effort to raise awareness and foster a deeper understanding of the chronic illness.
Rawlings offered a powerful reminder to others navigating medical struggles, “You are the person that knows your body the best, and you are the one that is in your body every day experiencing all of the pain and symptoms.”
