East Grand Forks teen battles chronic condition

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that affects one out of every on hundred teens, and the struggle is well known by Diane and Mark Lien and their son Justin of East Grand Forks.

POTS is a form of orthostatic intolerance in which a person’s heart rate increases by at least 30 beats per minute, or over 120 beats per minute (bpm), within the first 10 minutes of standing. Many of those with POTS experience extreme fatigue, headaches, heart palpitations, and other symptoms.

Diane talked about how Justin began having noticeable problems around sixth grade. While he had issues with things such as eczema, asthma and allergies beforehand, he began experiencing extreme fatigue and in seventh grade had to be pulled from school due to missing too many days.

At first, the school thought Diane and Mark may have been neglecting to get their son to school. But Diane explained his difficulties with chronic fatigue and the process began to find the source of the problems. At that point, the family decided to take him to Mayo Clinic, where he had a tilt table test done to measure his resting and standing heart rates. They found out that his resting rate was over 100 bpm, and that during standing it would go to somewhere between 110 and 120 bpm.

At this point, they were able to determine that Justin had orthostatic intolerance. Their doctor told them that they could manage the symptoms through adjusting his diet, keeping his allergies under control, and adding sodium to his diet, which would help him to retain fluids that he wasn’t currently.

Justin finished out his seventh year and all of eighth grade online. In ninth grade, he was able to go back to public school, doing half of his classes at the school and half online.

In tenth grade, he joined the Speech team at the high school, which helped with feelings of disconnection which had been troubling him since the beginning of his struggles with POTS. After the fall quarter of his eleventh year, though, the fatigue hit hard and he had to withdraw from classwork entirely in January.

This February, the family got the recommendation to head to Mayo to get an official diagnosis. They got in for an appointment near the end of July, and after a long wait, were able to come up with a treatment plan.

They started Justin on a pill to slow down his heart rate. Since he has asthma, a beta-blocker was not an option, but the prescription of Ivabradine has already shown some promise. He was a bit dizzy to begin with, but Diane said that he has been moving around the house more and more, initiating conversations and laughing from time to time, which are large improvements from where he had been.

They were also told about an inpatient program that the clinic does to work with POTS patients, but the family was unsure of whether they’d be able to afford the $42,000 cost, even if insurance were able to cover some. Doctors said, though, that Justin could do physical therapy and counseling, it just may be more difficult because the specialists would be working separately rather than as a team.

Diane said that the experience has been stressful for all of them, but they are hopeful that Justin can stay courageous in his struggles, and that he can get back to online classes again soon. Justin has been able to get some connection with others through Facebook, and now that he’s gotten a diagnosis, they are hoping he will be able to call on others further for support.

Diane said that she’s not sure if it’s genetic, but noted that her husband Mark had thyroid issues in high school and that she was tired a lot as well growing up and has had dizzy spells standing up. Diane said that if there is anyone out there who is going through the same experience or wants to talk more about the syndrome, they can reach her at 701-215-3713.

While symptoms of POTS are often mistaken for symptoms of mental disorders, the existing literature suggests that those with POTS are as likely or less likely to have a mental disorder than the average population.

About 75 to 80 percent of POTS patients are women, with one-third to one-half of patients experiencing digestive issues. This was the case for Justin, as his mother noted that he went to a gluten-free diet to address the difficulties he’s had.

While the cause of POTS is still unclear, there are a number of diseases and conditions associated with it, including genetic disorders, infections, vitamin deficiencies, and autoimmune diseases.

For Justin, treatment has included changes in diet, an increase in salt intake and biofeedback therapy. Other common treatments include increasing fluid intake, wearing compression stockings, reclined exercises such as rowing, recumbent bicycling and swimming, and avoiding substances that exacerbate symptoms.

While there is currently no cure, there is evidence that many patients see improvements with proper lifestyle adjustments and medical treatments. More information on the syndrome can be found at www.dysautonomiainternational.org.

1 Comment

  1. Kevin on August 16, 2017 at 7:43 pm

    I wish Justin the best. This disorder has been affecting me for 8 years now. Its pretty tough. Hang in there.

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