Local hope, help for those struggling with the strange disease of ‘POTS’

CLEVELAND – We have new information about a syndrome doctors are increasingly seeing with possible links to Long COVID. It’s called “postural orthostatic tachycardia syndrome,” or POTS, and it causes fainting spells, digestive issues, and very rapid heartbeats, and more. Sometimes POTS seems to be brought on after viral infections.

In recent weeks, reports show that various medical centers in the US and UK have seen significant jumps in referrals to POTS specialists from pre-pandemic levels.

There are resources with life-changing results available for people with POTS in our area.

WAITING FOR MEDICAL HELP IS VERY HARD

It was a long process for Jim Carroll of North Ridgeville to get his POTS diagnosis. He said it takes months for doctors to be sure, and during those days it is more than difficult.

“That’s the worst…” he started to say, but stopped crying.

He felt like his skin was burning. He had shooting pains in his eyes. His heart would sometimes race. He had terrible headaches.

“I think this time window, you need help faster than the medical community is able to give it to you,” Carrol told us, wiping away tears.

It was in this same sort of window that Carrol said he lost a friend, who also had POTS, to suicide.

“There was a lot of hope, but she couldn’t wait,” Carrol said of the suicide. “I think it’s a big risk with this [syndrome].”

SITTING AT A SITTING

After our original POTS story aired last month, Carrol, who sometimes uses a wheelchair and cooling vest, contacted us about his Cleveland support group developed for people like him and to all POTS severity levels.

“You know, Rachel, long car trips trigger me and a lot of us in general,” Carrol told a POTS patient during a recent Zoom therapy session for the group. They talk about frustrations, symptoms, and words of wisdom about things like doctor appointments.

“Having someone with you is so important because with POTS brain fog, it might go in one ear and out the other,” Rachael Grossman, a 21-year-old student from Moreland Hills, said during the session. therapy.

“What does something like that mean to you?” we asked him.

“It’s so important to have a group you can turn to. Not just for symptoms, but also for support. Like, ‘Hey, I had a really bad day,’” Grossman said.

Rachel Cover from the Akron area went through a lot of bad days before being diagnosed with POTS. She found support meetings through a POTS specialist.

“Absolutely the best decision I’ve ever made in my illness journey was trying to find this band,” Cover said.

“Were you surprised by how many people were going through this?” we asked.

“Oh my God!” Cover said. “Absolutely breathtaking.”

MORE WAYS TO CONNECT

Carroll also created a Facebook group called POTS CLE.

“I felt very invalidated, very lost in the system. And I thought I’m sure I’m not the only one,” Carroll said.

Now valuable POTS information and even a few laughs are shared which makes a big difference after every session.

“It’s about getting by with people who really understand,” Cover said.

“I feel so empowered like, ‘Hey…I’ve learned all of this and I can take it and do something about it,’ Grossman told us.

The support group meets once a month, but Carroll said that could soon increase to twice a month.