You can help people living with this disease that's hard to diagnose

You might have experienced an occasional sleepless night at some point in your life. Work or family stresses can make it difficult to fall asleep or make you wake up after only a few hours. Sometimes though, sleeplessness can be an indicator of something far more serious.
 
Pat Friedman, a healthy wife and mother of two grown daughters, knows that all too well. Her life drastically changed when she started having trouble sleeping.
 
Pat took a proactive approach and scheduled an appointment with her primary care doctor, who recommended she take a sleeping aid. But she began experiencing other odd symptoms, and her sleep did not improve. Walking down the soup aisle at the grocery store made her dizzy. Working in the garden, her favorite activity, was making her feel nauseous and faint. Everyday things were starting to affect her. She startled when the phone rang or when cars quickly passed her on the freeway.
 
After a second appointment with her doctor and further tests, Pat was referred to Dr. Ryan Cooley, an electrophysiologist at Aurora Medical Center in Grafton. She was diagnosed with postural orthostatic tachycardia syndrome, known more commonly by the acronym POTS.
 
POTS is a form of dysautonomia, which occurs when there’s a malfunction in the autonomic nervous system — the part of the body that controls heart rate, blood pressure, digestion and other automatic processes. The key symptom is a sharp rise in heart rate upon standing, which can cause people with POTS to feel dizzy, faint, and nauseous when they stand up.
 
“Getting an accurate diagnosis is such a relief for our patients because the average time to a correct diagnosis is around five years,” explained Dr. Cooley, who leads the clinical team at The Dysautonomia Center at Aurora Medical Center Grafton. “Patients with POTS usually have very complicated symptoms so it’s not uncommon for them to have seen several doctors before seeing us.”
 
Fortunately for Pat, her diagnosis came approximately six months after experiencing her first symptoms.
 
“I was in the right place at the right time and was so fortunate to have seen Dr. Cooley,” she said
 
According to Dysautonomia International, POTS can strike any age, gender or race, but 80% of patients are female between the ages of 15 and 50. Currently, there is no cure for POTS, but with proper lifestyle adjustments, exercise, diet and medical treatments, many patients see an improvement in their quality of life.
 
It has been 14 years since her diagnosis, and Pat is still learning how to live with POTS. Medication allows her to live her life with adjustments.
 
“I am still learning what my triggers are and then I adjust my activities as needed,” she said. “I have had to change my lifestyle and give up some activities like spending less time outdoors in the heat because that is a trigger for me.”
 
Pat said she feels fortunate to have a relatively mild case and getting an early diagnosis has allowed her to manage her symptoms and focus on the things that are important to her, like her two grandchildren that she watches full time while their parents are working.
 
Charitiable gifts support The Dysautonomia Center at Aurora Medical Center Grafton. To make a difference in the lives of people like Pat, visit give.aurora.org.

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