Uncovering and Adjusting to Life with POTS

Alexis Ballvé started her junior year of high school unsure why she was experiencing nausea, mental fog, fatigue and diminished concentration. 
“We really noticed symptoms at the end of August and it almost seemed like a light switch went off where everything was completely normal and then all of a sudden she’s saying, ‘I feel dizzy,’” said Eric Ballvé, Alexis’ father. “We realized something’s not quite right.” 
On November 12, 2015, Ballvé was diagnosed with Postural Orthostatic Tachycardia Syndrome. 
“POTS is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing,” said POTS: Explained by Doctors & Patients webpage on MyHeart.Net. “Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate is greater than 120 beats per minute within 10 minutes of standing up.” 
This syndrome causes many different symptoms that include nausea, mental fog, fatigue and diminished concentration. Ballvé experienced all of those at beginning of the school year along with weight loss and sleepless nights.
POTS “is estimated to impact between 1,000,000 and 3,000,000 Americans,” said Dysautonomia International’s webpage on POTS. This syndrome disproportionately affects women and may seem uncommon, but it is often misdiagnosed.
Before her diagnosis, Ballvé visited doctors for months and tried to live a normal life while experiencing the symptoms. Ballvé and her parents began by seeing her pediatrician who referred them to a gastroenterologist because of her nausea and a neurologist, due to tingling in her hands and feet, as well as mental fog. 
“It is really hard to get appointments with specialists, so my appointments were a month out for both of those, and meanwhile I was still miserable,” Ballvé said.  
They continued to return to their nurse practitioner where she tried to eliminate other illnesses and syndromes. The nurse told her family it could be anything from Lyme disease to cancer or just something common. 
During this time, Ballvé was a member of her school’s marching band. She functioned fine at practice when she was moving around, but as soon as she slowed down her symptoms would resurface. 
“I would go to a competition, and during the bus ride there I would feel horrible,” Ballvé said. “When we competed, I would feel fine, but on the bus ride back I was a mess.” 
On one ride home she experienced such an intense episode that her father had to carry her off the bus because she was unable to walk. 
Her diagnosis did not come until her fifth appointment with her primary care provider. Her nurse practitioner walked in, dropped her pen and paper and then explained that she thought Ballvé had POTS based on her symptoms. Ballvé and her family were referred to a cardiologist, Dr. Hasan Abdallah, who is one of the leading POTS researchers. The cardiologist confirmed the POTS diagnosis.
“The average diagnosis time, I believe, is six years,” Ballvé said. “Me, I got sick at the beginning of September and I got diagnosed by early November, so for me it was frustrating but wasn’t as long as some other people.”
In most cases, it is difficult for doctors to determine what causes POTS. Ballvé had a concussion in December 2013, and doctors believe that may have made her more susceptible to POTS. In addition, it is believed that she had mononucleosis in the fall. 
“What they think actually started it is mono, and they think I got it in September, but all the tests came back negative,” Ballvé said. “They are still pretty convinced it was mono because a lot of people get it either from mono or Lyme disease.”  
Ballvé also learned in a December appointment that she was born with Ehlers-Danlos syndrome Type 3, which may have also made her more susceptible. Many people who have POTS also have EDS. Prior to this diagnosis, Ballvé conducted her own research to determine the cause of her joint pain.
”Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues-- primarily your skin, joints and blood vessel walls,” according to the Mayo Clinic webpage on EDS. “People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.” 
POTS has no specific cure, so after Ballvé was diagnosed she began to try different medications to see what would ease her symptoms. Unfortunately, she had negative reactions to a few of them. Midodrine Hydrochloride was a drug that was supposed to help, but instead her younger sister, Kayla Ballvé, witnessed Ballvé’s negative response to this medication. Ballvé decided to take a shower, but friends soon grew concerned because she stopped responding to texts. They asked her sister to check on her. 
“I went in there and I had to pick the lock,” said Kayla, Ballvé’s sister. “She was lying on the bathroom floor shaking and mumbling things, and I didn’t know how to help her. She just wasn’t making sense and it was really strange.”
While Ballvé has had negative reactions to a few medications, some of them have been quite effective. Once she was on a regime of Cyproheptadine, her appetite returned. Ballvé also took Fludrocortisone, which helped her retain fluids and remain hydrated. Her family calls the medication Adderall a “miracle drug.” The drug helped Ballvé start acting like herself again, get out of bed in the morning, as well as focus at school. 
“Some of the medicine like Adderall has been a blessing, and other medicine like Midodrine was not a blessing,” Ballvé said. 
The family was told it would take two years to find the medications that work best, but they decided to take a faster route to speed up the process to determine the best course of action. They evaluated the effectiveness of different medications and adjusted her daily regime as needed.
In the fall, school was almost impossible for Ballvé. Always a strong student, she started out the year unable to focus and most of her teachers attributed this to a lack of motivation. 
“The frustrating thing is my teachers thought I was a slacker, and once I got a diagnosis I could prove, ‘Hey I’m not crazy,’” Ballvé said. 
Along with the medication there have been a few activities that have helped to reduce symptoms. Exercise is very important, as well as drinking water, and taking salt pills. Ballvé drinks eight bottles of water a day and takes salt pills to increase fluid retention. 
Spring ushers in softball season for Ballvé, but this year it means even more. Since the start of softball, her grades improved and she feels more energetic.
  “I kind of refer to it as my therapy, so if I have a big test coming up I would go to softball practice,” Ballvé said. “It would kind of be a priority over school sometimes.” 
Her parents explained that part of the problem with POTS is that Ballvé looks physically healthy. Ballvé uses the spoon theory to inform family and friends about living with this syndrome. The spoon theory originated when a girl with Lupus tried to explain what a normal day is to her friend. The girl grabbed all the spoons on the table and began to explain that only 12 spoons were available for the day, so decisions had to be made. One spoon represented getting out of bed and another to shower. Each task in the day takes a spoon. She approaches daily life with this in mind, knowing she must make decisions based on the spoons she has left. 
“When I send them the spoon theory explanation, they really seem to understand it more because I think it kind of puts it into visual perspective,” Ballvé said. “That really helps explain it to people.”
Ballvé’s current challenges include preparing for the ACT and SAT along with deciding what college might work best for her in the coming years. In addition, she has Advanced Placement exams coming up. She also has to manage feeling extremely moody at times, and her family has to adjust to this as well. 
Since the diagnosis, Ballvé has traveled to Argentina to visit family and friends as well as explore her family’s heritage. Striving to ensure this syndrome does not limit her, Ballvé continues to participate in activities she loves, like softball. 
“I really admire her, because she has a really good attitude and is a fighter,” said Nicole Ballvé, about her daughter. “We support her the best we can. We are all learning.”
Ballvé and her family continue to research new options to alleviate her symptoms. She seeks opportunities to educate others about POTS, and her mother believes that one day Alexis Ballvé may be a speaker or advocate to promote awareness of POTS.