Fatigue mystery solved: Duluth teenagers cope with POTS
One is a competitive dancer; another plays hockey. There’s an actress and a swimmer.
All four are high-achieving freshmen or sophomores at Denfeld High School. And each was waylaid for months by a little-understood medical condition that sapped their strength and took them out of activities and school before it was even diagnosed.
Months later, the girls — Charleigh Frederick, 15; Cassie McClure, 15; Jessie Olson, 16; and Sara Schutt, 16 — still struggle with the condition, to varying degrees. In January, with help from assistant principal Marcia Nelson, the four formed a support group in their school to help them cope with a chronic syndrome that baffles their friends, requires a counterintuitive treatment regimen and promises no certain end date.
It’s called POTS, an acronym for postural orthostatic tachycardia syndrome, and it’s characterized by a sharp drop in blood pressure and rise in heart rate when the individual stands from a sitting or lying position. It can exhibit itself in dizziness, light-headedness or sometimes fainting; headaches; stomach pains, cramps and nausea; “brain fog”; and flushing, among other things — and especially in numbing fatigue. It’s often mistaken for other things, part of the reason it takes so long to reach a diagnosis.
“They said Lyme disease; Cassie had Lyme disease,” recalled Jason McClure, Cassie’s dad. “So she was put on 26 days of antibiotics, and it didn’t do anything. And then we were worried about lupus. … And then a brain tumor was mentioned at one time as a possibility.”
The four teenagers meet for a half-hour on Thursday mornings during the school’s WIN period. (It stands for What I Need, Nelson said.) Along with Nelson, they met with a reporter after school on the third Thursday of their support group to talk about battling POTS and how their group already was helping.
Olson and Schutt had known each other before the group formed, and Frederick and McClure had been in a class together, but none had known all three of the others. It was obvious, though, that their shared experiences had created a bond among them. There were a few tears, and quite a bit of laughter. They joked about how their legs can look purple and their hands can turn a brighter-than-sunburned red. They poked fun at themselves for how “brain fog” causes them to sometimes forget what they meant to say.
“I was going to tell my doctors I couldn’t remember stuff — and I forgot,” McClure said, to laughter from her friends.
Added Schutt: “I mean, it’s like you forget how to spell your last name.”
Schutt, who initiated the group’s formation, came armed with a publication from the Mayo Clinic called “Teens + Autonomic Dysfunction.” Schutt, McClure and Olson all eventually were diagnosed at Mayo; Frederick was scheduled to be seen there when a Duluth pediatrician reached the POTS diagnosis.
Shelley Ahrens, a nurse practitioner at the Mayo Clinic Children’s Center, explained in an email that POTS is a form of autonomic dysfunction, which she described as a physical illness.
“When you have autonomic dysfunction, your blood flow, body temperature and gastrointestinal system are out of balance,” Ahrens wrote. “These systems are regulated by your autonomic nervous system, which is your involuntary nervous system that you can’t control.”
Because it typically occurs in teens after puberty begins, it’s believed “hormonal influences” contribute to triggering POTS, Ahrens wrote. It’s also likely to follow an illness such as mononucleosis, influenza, viral illness or an injury requiring bedrest.
POTS was first recognized as a medical condition in 1993 and first reported in teens in 1999, Ahrens wrote. But a look at historical records suggests that adolescent soldiers with “Civil War Syndrome” had a condition that was very similar or identical to POTS.
It’s more common among Caucasians, teens with physical flexibility (such as gymnasts and dancers) and high achievers, Ahrens wrote, and about two-thirds of teens with autonomic dysfunction are females. It’s not known why it’s more likely to affect these groups, she added, but the fact that it’s most often diagnosed in whites suggests a genetic component.
At least three of those characteristics apply to all four of the Denfeld group members. Frederick, a freshman, has acted in local productions since she was 6 and is in theater and debate at Denfeld. McClure, also a freshman, excelled in sports with a special love for hockey but because of POTS now is serving as a manager for the Duluth Northern Stars. Likewise, Schutt went from swimming competitively to serving as a manager for the team; she’s also on the speech team. Olson had to give up competitive dancing — although she did choose to take honors classes at Denfeld, against the recommendations of the doctors at Mayo.
Now, Olson said, she’d simply like to be well enough to attend a Denfeld basketball game — but she goes to bed at 7 p.m.
“Jessie’s truly an old lady,” Schutt joked.
McClure added: “That’s what you feel like: A 90-year-old woman stuck in a 15-year-old.”
Frederick put in: “You’re out of breath getting to class and you’re like: ‘I am not this way. What is wrong?’ ”
‘TESTED FOR EVERYTHING’
Before POTS, all four of the girls seldom, if ever, missed school. (The one exception was Frederick in fifth grade, she said, because she had migraines.)
After they developed POTS, they missed substantial time from school. McClure still is attending only half days.
“Making it through a week is a big occasion,” Schutt said.
It was particularly difficult, the girls and their parents said, during the months when they didn’t know what was wrong.
“She was tested for everything,” said Chuck Frederick, Charleigh’s dad (and the editor of the Duluth News Tribune’s editorial page). “And everything came back negative. We never knew what the heck was going on.”
Olson was taken to gastrointestinal specialists at the University of Minnesota because her problems seemed to center on her stomach, said her mom, Denise Olson.
“One of the GI specialists told her it was all in her head and she needed to live with this,” Denise said. “You know something’s wrong. This isn’t who my daughter is.”
Bill and Jill Schutt experienced similar frustration and fear.
“It was really scary to watch your daughter have an echocardiogram at 14, or 13,” Jill said. “They could never figure out what was wrong with her.”
Jill Schutt still sounds angry when referring to a cardiologist who responded to Sara’s complaint that when she stood up she felt like she was going to pass out. The cardiologist said he has patients who do pass out.
“Basically, she wasn’t sick enough for him to care,” Jill said.
THE TILT TABLE
In addition to their own frustration, the girls were aware of their parents’ concern. When she was scheduled for an MRI, her mom and dad hadn’t told her that the possibility of brain cancer had been suggested, McClure said.
“After we got my MRI results and they turned out totally fine, they just started crying,” she recalled. “And I’m like: ‘What is going on?’ They told me, and I’m like: ‘I’m so sorry. I didn’t know that.’
“I didn’t want to scare them.”
When Frederick finally was diagnosed, it was with a simple test. Her heart rate was measured as she lay down and then as she stood. That produced a loud beeping sound from the monitor, she said.
Mayo uses a “tilt table,” in which similar measures are taken as the patient’s body is thrown from side to side. Schutt described it as “legitimate hell.”
There’s no magic pill for POTS, but there’s hope that it will eventually go away. Almost all adolescents with POTS are fully recovered by their early 20s, Ahrens said.
“We don’t know how long autonomic dysfunction will last in patients,” Ahrens wrote. “We are currently doing research so we can get some long-term outcome data. … POTS is not a life-threatening condition and is not associated with early death.”
In the meantime, the POTS treatment plan includes salt, fluids and exercise, Ahrens wrote, with the goal of increasing blood volume. Heavy salt intake runs counter to standard medical advice.
“These measures increase blood flow and improve circulation,” she wrote. “With better circulation, dizziness and fatigue tend to get better.”
Exercise — an hour a day — is the most important thing, Ahrens added. It improves sleep and circulation, increases blood flow, strength, stamina and endurance and decreases fatigue and pain.
Exercise doesn’t seem to make sense when you’re feeling constant fatigue, Schutt said. To her dismay, the exercise has to be vertical — such as walking — so swimming doesn’t count.
Of the four, Frederick seems to have had the most success fighting the syndrome. After coming down with a severe sore throat in November 2014, she and her parents were first told she had a virus and she’d be fine by Christmas.
“We thought: Well, she’s going to be better long before Christmas,” said her mom, Julie Frederick. “And then Christmas came and went, and Valentine’s Day came and went.”
But after she was diagnosed last May, Charleigh Frederick slowly progressed as she followed the salt, water and exercise regimen, her parents said. By August, she was feeling much more herself, and instead of taking salt tablets she simply makes sure to drink plenty of water and put extra salt on her food.
Olson said she has been handling it better since taking a two-day program at Mayo to teach kids with POTS how to live with it. “There were just a lot of helpful things — just how to manage it, how to deal with it, how to cope with it,” she said.
Part of the challenge is learning how to deal with POTS socially, the girls said. Her friends didn’t understand how sick she was, Schutt said, and when she often turned down invitations to go shopping, the invitations stopped coming.
Other kids don’t always know how to respond to a chronic illness, the girls said.
“It’s very easy to feel alone with this,” Olson said.
“The hardest part of it is the social,” said Jill Schutt, Sara’s mom. “They make arrangements to go to a movie and then they feel crappy so they can’t go. They become more isolated.”
That’s why her daughter decided to see if she could form a support group.
“Denfeld jumped all over it,” Jill said. “It’s amazing. (Nelson) was unbelievably helpful and supportive.”
‘YOUR OLD SELF IS GONE’
They talk about the difficulty of leaving parts of their old lives behind.
“I got sick in the middle of swim season,” Schutt said. “And swimming was my life. They’re my family.”
People are judgmental, McClure said. They think you’re faking your illness for attention. Adults say you’re just being teenagers.
Added Olson: “One thing that’s really hard is you kind of need to let go of your old life, and that can be one of the hardest things to do because you’re not how you used to be. Your old self is gone. Acceptance is one of the hardest things.”
Part of the adjustment is understanding that it’s a chronic condition, Schutt said. If another student comes down with a cold, she might miss Spirit Week, but she’ll be fine the next week. “Ours is like: I’ll miss Spirit Week, I’ll miss Prom, I’ll miss x, y, z because it’s just not possible.”
But, the encouragement the students found in their support group was evident right away, Nelson said.
“The first day that they met together, they were all glowing,” she said. “And when I hear stories about how their other friends react to them, that makes it really clear to me why they were glowing. It’s from the opportunity to talk with somebody who finally understands.”
Olson, whose sense of humor emerged frequently, put it this way: “When I find a new POTS person, it’s like finding an alien. It’s so exciting. It’s like: My people!”
To have four POTS students in the same school seems rare, she said. “When I was down at Mayo, no one ever knew anyone in their high school who had POTS.”
In actuality, it’s estimated that 1 percent of teenagers may have POTS, so at Denfeld, with a student body of just over 1,000, there easily could be 10 students with the condition — although some might have it and not know it.
‘I FEEL LUCKY’
POTS is almost never diagnosed quickly, according to the Mayo Clinic, because so many other possibilities have to be eliminated first. But it’s still a mystery to the parents that they had to wait so long — and in three cases travel to Rochester — to get an answer.
“You think of Duluth as a medical hub,” said Jason McClure, who is Duluth police liaison officer at Denfeld. “We have great medical facilities up here. (But) no one really had an answer for what was going on.”
But having been to Rochester, Cassie McClure and her dad have seen teens with POTS who are in far worse condition, she said. “I feel lucky that I’m just fighting to be a normal kid and not fighting for my life,” she said.
Showing perspective far beyond what one might expect of a 15-year-old, McClure said she and her friends ultimately will gain from the experience.
“I kind of think of this as a blessing in the wierdest way,” she said. “Like how much of a greater person we’re all going to come out — either if we never get cured or if we do. … We don’t take things for granted ...
“There’s definitely a lot of faith and hope that gets you through the day.”
SIDEBAR: SYMPTOMS OF POTS
The individual with POTS might have some of the following symptoms:
- Dizziness / light-headedness
- Stomach pains or cramps
- Difficulty concentrating or “brain fog”
- Vision changes or loss of vision
- Feelings of hot or cold
- Profuse sweating
- Increased heart rate
- Chest pain
- Weakness in the legs
- Color changes in the legs (blue or purple discoloration)
- Mood changes, including anxiety or depression
Source: “Teens + Autonomic Dysfunction,” Mayo Clinic