Dysautonomia Awareness: Living with POTS

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By: Melissa Schenkman, MPH, MSJ

Summer Dashe always knew she was destined to be a journalist. While most kids do not become what they say they want to be when they grow up, Dashe’s decision was cemented when the foundation of her life was shaken, literally.

At just two years old, her mother placed her underneath a table for protection during the middle of the night when a big earthquake hit while the family was living in Los Angeles, California, near the San Andreas Fault. Dashe, terrified and crying, was suddenly not afraid anymore after her mother turned on the television to the local news.

Summer Dashe

“I thought the news anchors knew when earthquakes were going to happen, so I wanted to be a news anchor,” said Dashe, who as she got older understood that no one including news anchors had this knowledge ahead of time.

Yet, she was immediately drawn to the concept that news anchors knew things that could help other people and that they could learn from.

It’s a concept that has stuck with her to this day.

“That earthquake was the moment I was really first introduced to news and decided I wanted to go into the field,” Dashe said.

She was always a good writer, composing little books as early as first grade. Later on, she would steal her parents’ camcorder and film videos of her friends and make up stories.

By high school, she interned for her local newspaper, the Danville Weekly, where her first published story was about the hotly debated topic at the time of a housing policy on roof tiles. Too young for her driver’s license, Dashe remembers her mom driving her to “the scene” so she could take pictures of the roof tiles in question.

Little did she know at the time, how her determination and natural ability for creatively telling stories would one day allow her to educate and bring her own sense of calm to the public during uncertain times, first as a beloved local news reporter and anchor and later as an advocate for patients with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome.

What Is POTS?

At age 28, Summer was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS). 

Source: The Cleveland Clinic

POTS is a form of dysautonomia, a disorder of the autonomic nervous system–a highway of nerves throughout your body that actively and automatically at all times–while awake or asleep–controls our heartbeat, breathing, digestion, blood flow, and other functions. 

There are two divisions of the autonomic nervous system–the sympathetic and the parasympathetic. The sympathetic division signals to your body to activate its “flight or fight” response in times of stress or danger. This tells your body to do things including increase your heart rate, dilate your pupils, stop digesting, and dilate your airways. Turning on the parasympathetic division has the opposite effect. This signals the body to “rest and digest,” including activating stomach digestion, slowing your heart rate, and constricting your airways.

In POTS both systems and the blood flow involved in them become dysregulated. It’s “P,” for postural, because symptoms are related to the position of the body and are triggered while standing. 

“O,” orthostatic, means the body has a reduction in the amount/volume of blood that is circulating. Normally, when you stand up, the blood vessels in your lower legs constrict and your heart rate increases, signaling the body to pump blood back up to the upper half of your body and the brain. In POTS, your blood vessels don’t respond to the signals and blood pools in your lower extremities, leading to not enough blood in the upper half of the body and the brain. So, patients feel lightheaded, become fatigued, and have brain fog. 

“T,” is  for tachycardia, an increase in heart rate that occurs from the body having sent out messages via the hormones, epinephrine and norepinenphrine, to tighten the blood vessels and pump the blood back up. This may casue you to be shaky and sweaty.

Finally, “S,” stands for syndrome because POTS is a syndrome–a constellation of symptoms–not a disease. An entirely separate condition, Ehlers-Danlos Syndrome (EDS), often goes hand in hand with POTS as a large group of POTS patients are believed to develop the Syndrome because they have EDS. It’s important to remember though that not all POTS patients have EDS.

EDS is a connective tissue disorder. Connective tissue is the group of tissues in our body that provides cohension and support to our body’s structure. This includes our skin, joints, and blood vessels. 

Connective tissue is kind of like our own human rubber band, as it provides our bodies with elasticity and strength. For people with EDS, the rubber band has no limits to what it can do, so they have overly flexible joints and stretchy skin, and can easily dislocate their joints and have difficulty with healing injured skin.

Growing Up with Ehlers-Danlos Syndrome

Growing up in California—a fairly healthy food state—eating a well-balanced diet and exercising were the norm. So, beyond those basics, Dashe didn’t really think about her health as a kid.

“All of my interactions with doctors growing up were for run of the mill normal health issues like getting the flu or strep throat and then going to the doctor who would give me an antibiotic, and then I would go home and get better,” she said.

“I did have a health condition though. I just did not have the experience or knowledge yet to know what would happen to me, or what was happening.”

How could she? She was a very, very active child and always thought she was healthy. Dashe was a competitive gymnast, on the cheerleading squad, and on the dance team, all sports that are particularly good for people who are flexible. And boy was it easy for her to make her body flexible!

“People with Ehlers-Danlos Syndrome, which makes your body extra flexible or appear to be very flexible—tend to be drawn to these activities because bendy bodies at that age can excel at bending in lots of different ways,” Dashe recalls. “All of the sudden your coach is like ‘Wow, you are good at doing the splits,’ so you do more of them. All the while not knowing that probably the reason you are really good at splits is because you have a connective tissue disorder.”

When she looks back now, she remembers several other symptoms none of which stood out to anyone at the time. Dashe had headaches as young as elementary school, but since they weren’t debilitating no one thought much of them. She also remembers complaining of back pain in middle school when she was cheerleading.

One vivid memory is when her mom noticed huge stretch marks on Dashe’s hips. At the time, Dashe thought it meant she was fat because that’s what she associated them with, but at the time she was only a 90-pound, 11 -year-old.

“I didn’t know that the symptoms I had were symptoms because they were my normal,” Dashe said. “The stretch marks, headaches, and back pain are actually all classic signs of Ehlers-Danlos Syndrome, but having those separately would never have indicated that I had some issue going on because none of it was severe.”

So, year after year she continued competing and headed off to college never knowing she was living with Ehlers-Danlos and what that would mean for her life in the years ahead.  

Determined to Anchor the News

Dashe who describes herself as “another level of driven” and “the most determined person you’ll ever meet,” pursued her career and later on, her diagnosis, in exactly that way.

She began applying to internships at the major news stations in Dallas, even before she was technically old enough to hold one, when she was just a college freshman majoring in Convergence Journalism—print, broadcast, and digital training—at Southern Methodist University in Dallas, Texas. At age 18, a random PBS pilot series offered her a position.

Dashe preparing to go out and report in the field. Learn more about her amazing work at http://summerdashe.com/

“I was a child who had wanted to be a journalist since she was like two or three years old, so I was ready to go,” Dashe said. “Put me in coach!”

She went on to intern at KTVU news in San Francisco, and land her first “real job” after graduation as a multimedia journalist at KLTV in Tyler, Texas. There, she shot, edited, and wrote all of her own stories.

“People think the life of a TV reporter is glamorous. Let me tell you, in Tyler I was running around in mud with wild hogs filming them, getting my camera covered in poop,” Dashe said.

But her grit paid off. She worked her way up to producing and anchoring some of her own shows and two years later, landed the weekend morning anchor job at WPDE-TV, the ABC-affiliate in Myrtle Beach, South Carolina.

“I think that I grew the most as a journalist there and the opportunities that the station offered me changed my whole career in a wonderful way,” Dashe said. “After about a year of anchoring weekends, I was miraculously promoted to main evening anchor for the Monday through Friday newscasts.” She was just 25 years old.

Dashe also became the managing editor of the entrie news station at WPDE-TV and launched the station’s first investigative team called ABC 15 investigates.

“Going back to the day under the kitchen table as a toddler, I wanted to be the person who held people accountable, so I loved investigative work. It was where I felt like I was making the most difference,” she said.

After Myrtle Beach, she landed her dream job: main anchor with a management title, Director of Storytelling, at WATE-TV in Knoxville, Tennessee. In her role, she got to train reporters, photographers, and news managers in storytelling techniques.

But little did viewers on the air know nor most of the time her own colleagues, how she was feeling every day and what it took for her to be on the air.

Dashe’s symptoms of POTS began in South Carolina, and her journey to diagnosis ended in Nashville at Vanderbilt University.

Story of Summer’s POTS Diagnosis

She remembers when “everything went nuts” with her body, like it was yesterday. It was May 2017.

Dashe was at the top of her game professionally—main anchor at ABC 15—and physically—she had just won a fitness competition at her gym, losing 30 pounds.

But when she and her husband went for a weekend getaway in Beaufort, South Carolina, she couldn’t sleep, was agitated, and felt uncomfortable, and nauseaus.

“I had an awful time because I was so sick, and I didn’t even know I was sick,” Dashe recalled. “That’s when it all started and over the next two years the symptoms just piled on one after another, and I finally started noticing them.”

She developed bright white spots on her arms, which she later learned were called Bier spots—a vascular sign related to blood flow and position of your arm (up in the air versus down by your side). She would wake up severely nauseous daily and feel lightheaded, yet manage to be on the anchor desk on-air by evening.

“I would get up in the morning, and I was severely nauseous every single day. I would be out of breath sometimes, and I would just sit on the floor because I didn’t understand if I was going to pass out or throw up, but I knew I couldn’t be up. I would crawl to my bathroom. Sometimes I would throw up  and sometimes I would lay on the floor for a minute, and I was out of it,” Dashe remembered. “I wasn’t as articulate as I once was, so it was as if I was sitting there thinking: ‘This is bad, something’s wrong, and I don’t feel good. Anyways, I have to go to work now.’ It was bizarre.”

But it became her daily routine. Over time, she developed headaches, fatigue, and symptoms that her co-workers started to notice—tremors in her hands and excessive sweating.

As an evening news anchor, she only had about two and half hours when she was awake and available each day before she had to be at the news station. So, seeing a doctor to find out what was wrong, was a huge challenge.

“Getting to doctors’ appointments was brutal,”Dashe said. Her gynecologist finally was the one that sent her to a neurologist about a year and a half into her symptoms.

“I know you don’t know what’s wrong with me, I told her. Nobody does, but nobody’s listening to me. Nobody believes me. They say this is all anxiety,” Dashe said. “I told her all my symptoms and she goes, ‘Oh Summer, this is not anxiety.’”

Unfortunately, her visit to the neurologist was a dead end. Despite taking time off work and visibly sitting there a pale, shaking, sweaty, 26 -year-old with white spots on her arms, he diagnosed her with anxiety. He prescribed her a new anti-anxiety medication, a seizure medication for her tremors, and antiviral for fatigue.

“This was no longer an invisible illness, so I don’t know how this jerk let me walk out that door with that diagnosis,” Dashe said.

After such an upsetting blow, she sat in the parking lot inconsolable from the experience, calling her parents, and telling her boss, for the first time ever she couldn’t come into work because she was too upset to be on the air right now.

It would take seeing a total of 12 different doctors over two years before she finally received an answer and an accurate diagnosis.

Finally, Some Answers! 

Doctor number 12, Hank Jennings, MD, at Vanderbilt University, was the man with the answers.

At this point her mom kept saying it was time to go to the Mayo Clinic if Dashe’s symptoms continued, but already having planned a vacation to visit her sister who lived in Nashville, she decided to call Vanderbilt cardiology to see if they had an opening. Sure enough, they did.

In the two-year span of searching for help for her symptoms, she had one abnormal EKG. Armed with that test result and many others, plus her list of symptoms, she was determined to nail this appointment. In walked Dr. Jennings, “the cutest little man with the jolliest smile,” Dashe said. He looked up at her with his adorable glasses and said:

“I think I know what’s wrong, but I want to make sure I’m not missing something else. I’m a heart guy, so I’m gonna get my nurse practicioner. She kind of knows everything.”

So, he left Dashe and her mom, who joined her at the appointment, both kind of giddy. “I thought, ‘Oh my God, I’m not making it up, she said. “That’s what two years of this does to your mind.”

When Dr. Jennings returned with his nurse practicioner, she said to him, “I think she has POTS,” and he goes “classic POTS.”

“I think he said it in a way that was a little giddy because the Vanderbilt cardiologists are familiar with this condition and they know what these patients have been through to get to the point of a diagnosis,” Dashe said. “And I think he was happy that he could be that doctor for me, the one who changed everything and figured it out finally.”

He explained that they had an autonomic clinic for patients with Postural Orthostatic Tachycardia Syndrome. A month later Dashe had an appointment there where her POTS diagnosis was confirmed with a tilt table test—a test to see how you blood pressure and heart reacts when you are completely upright for 10 minutes.

In 50% of patients, POTS is triggered by a viral illness, which is why we are seeing more of this coming out of the COVID-19 pandemic.

However, Dashe hadn’t had a virus before her symptoms started. After she shared that, the doctor started doing a physical exam asking her to do things like bend her fingers. So, she did, bending them all the way backwards like she had her whole life. That’s when he told her she had Ehlers-Danlos Syndrome.

“It took me probably two years to accept that I did have Ehlers-Danlos Syndrome because I don’t have the type that can be tested for in your DNA. I have hypermobile Ehlers-Danlos Syndrome, which is strictly based on your clinical presentation meaning the things your body does that are unusual, like bending your fingers backwards,” Dashe said.

“I was in denial because I was hoping that I had something else triggering POTS that was curable. So, then I could cure the underlying thing and not have any of this anymore. If I had Ehlers-Danlos Syndrome, that meant I was really stuck with this.”

Dashe experiencing symptoms and trying to alleviate them after a flight to see her family in California.

A Day in the Life

What she did accept is that in order to continue being a journalist she was going to have to make some changes.

While she still shoots some of her own stories and reports from the anchor desk, Dashe left the daily grind of anchoring local television news television newscasts. She now works in Communications for the United States Department of Energy Office of Environmental Management and launched a monthly newscast for them called Energycast. 

She also anchors a monthly medical news show for WATE, in Knoxville, and in between all that she teaches journalism at the University of Tennessee and works on a crime documentary. So, she basically left one massive job for four! 

However, the flexibility is helpful to maintain the best quality of life that she can with her symptoms. She regularly posts TikTok videos about what a day in the life of Summer Dashe can look like—the good and the bad. She is also very active in spreading awareness about POTS @summerdashenews on her Instagram and Twitter pages.

Dashe’s day in the life of a POTS patient TikTok video.

Dashe was diagnosed with a type of POTS called hyperadrenergic POTS, which means her body releases way too much norepinephrine—a chemical messenger that stimulates the body to be in constant “flight or fight mode.” This tells her body to constantly increase her heart rate and stay awake among other things. So, she doesn’t usually go to sleep until 2am.

She starts her day slowly around 9:30 am and lets her medications work for a while before trying to stand up. She’ll lie in bed doing some work or checking email, and then float in the bathtub for a half hour because it seems to help acclimate her to getting up right. Then, she’ll stand up and start to get ready, which causes her to overheat, pouring sweat from the excess norepinephrine in her body. A reason she carries a towel with her everywhere she goes.

She is nauseous for half the day, so she generally doesn’t eat for the first time until the afternoon or later, and then has a midnight snack.

While having insomnia is common amongst POTS patients, she points out that many symptoms vary tremendously. “You can’t judge one patient’s experience based on another patient’s symptoms because they are different,” Dashe said.

However, there is one thing that all POTS patients and the millions of people suffering from chronic illnesses can share: their voice.

“I never liked it when people would say that journalists give a voice to the voiceless. I disagree. You don’t have to be the big news anchor to make a difference,” Dashe said. “Everybody has a voice that matters. I just have a megaphone. So, I will keep screaming to try to help people as long as I’m able to because I have a megaphone.”

To learn more about POTS and Ehlers-Danlos Syndrome, visit Dysautonomia International and the Ehlers- Danlos Society

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