Twin Cities’ first POTS clinic treats dizzying symptoms in one place

Postural orthostatic tachycardia syndrome – or POTS – has always been difficult to diagnose. It’s made up of symptoms that might seem unrelated. One day it might be a headache. Another day, it might be extreme dizziness and brain fog that makes it impossible to follow even the plot of a TV show.

People might have seen a neurologist about headaches, a gastroenterologist for stomach discomfort, and a cardiologist for a racing heart. Each specialist might have treated their area separately. But the COVID-19 pandemic brought new visibility to POTS because it shares qualities with long COVID, including brain fog and fatigue.

“It’s that increased visibility with long COVID that helped people access the language they need to get the diagnosis,” said Matt Ambrose, MD, a pediatric cardiologist with M Health Fairview Pediatrics and assistant professor at the University of Minnesota Medical School.

In response to the increase in people looking for care, M Health Fairview Pediatrics has created the first pediatric clinic dedicated to POTS in the Twin Cities. Cardiology providers and physical therapists staff the clinic to treat children and adolescents. The POTS clinic is located in M Health Fairview Pediatric Specialty Clinic - Explorer in Minneapolis, adjacent to M Health Fairview Masonic Children’s Hospital.

“The nice thing about this new pediatric POTS clinic is it gives a streamlined pathway for patients to get access to the right care without having to go through multiple hoops to get there,” Ambrose said. “And that’s huge because we’re really interested in providing access to a population that has historically not had a place to go where they feel confident that their care will help them recover long term.”

POTS is a chronic condition that requires ongoing care. The dedicated clinic allows specialists to continue working with patients and adjusting care plans as needed. And patients don’t even have to go to the clinic or hospital for care – much of the work can be done through telehealth visits.

What is POTS?

POTS occurs when the autonomic nervous system isn’t working quite right. That’s the system that regulates breathing, heart rate, and other body processes that you don’t have to think about. Symptoms often begin in adolescence and last for years. For some people, symptoms ease in their 20s. People assigned female at birth are most affected.

Symptoms of POTS can vary, but the common thread is that they almost always get worse when a person stands up. Lying down can ease symptoms, which include:

• Dizziness.
• Brain fog, difficulty focusing, reading, or finding the right words.
• Fast heart rate.
• Sweating.
• Fainting.
• Difficulty breathing.
• Headaches.
• Stomach discomfort.
• Interrupted sleep.
• Purple discoloration on legs or hands.

The combination of symptoms can make it difficult to go to school or have a job. People can have good days and bad days with POTS, but they generally feel symptoms every day.

POTS symptoms also tend to worsen in hot temperatures, with physical activity and right before a menstrual period. POTS isn’t an illness that will land a person in the hospital, but it can significantly affect quality of life. So it’s not a stretch to say that getting treatment for POTS can be life changing.

“It’s so satisfying to watch this process happen,” Ambrose said. “It’s quite amazing watching people go from a wheelchair to coming in having baked me banana bread because they had the energy and the resources, and their symptoms were under control enough that they could do something fun like that.”

What to expect in POTS treatment

Managing POTS starts with an accurate diagnosis. The team at the POTS Clinic can look at a person’s set of sometimes vague symptoms to confirm a POTS diagnosis. Then they tailor a care plan to meet the person’s needs and provide on-going support. But the patient often must make significant lifestyle changes too.

The first recommendation is drinking water. A lot of water.

“They should be taking at least 80 ounces a day, but really more like 100. Though 120 is a good goal,” said Chris McCarthy, NP, a cardiology nurse practitioner in the POTS clinic. This is a significant increase over the typical recommendation of eight 8-ounce glasses (64 ounces) of water per day.

Drinking two glasses of water before standing up can help increase blood pressure, which could prevent dizzy feelings of fainting. Increasing salt in the diet also helps with blood pressure. The experts recommend eating salty snacks, adding salt to food, and using electrolyte beverages.

“For people in cardiology, we don’t usually recommend salt, but for people with POTS, we recommend salt supplementation with salt tabs,” McCarthy said.

Paying attention to what triggers POTS symptoms can help ease the effects. Here are a few areas to focus on:

• Sleep: Improving sleep quality with sleep hygiene recommendations like going to bed at the same time each night and avoiding distractions like phones in bed.
• Temperature: Heat can worsen POTS symptoms, so try to avoid hot tubs and physical exertion in hot environments. Some people use personal cooling devices to avoid hot flashes.
• Physical activity: While it can be difficult to do standing exercise, gradually increasing aerobic exercise has shown to improve POTS symptoms. Try seated exercises like pedaling a recumbent bicycle or using a rowing machine.
• Blood flow. Compression garments worn over the thighs or belly can help direct blood flow.

Physical therapy has been shown to improve POTS symptoms. Medications are also available to help with symptom management.