Northeast Ohioans who deal with “pots” find life-changing help, and support from each other 2022-04-27 12:00:42


CLEVELAND — We have new information on a syndrome doctors are seeing more of with possible links to Long COVID. It’s called postural orthostatic tachycardia syndrome or POTS, and it causes loss of consciousness, digestive problems, an extremely fast heart rate, and more. Sometimes, POTS appears to appear after a viral infection.

Over the past few weeks, Reports appear Various medical centers in the US and UK have seen significant jumps in referrals to POTS specialists compared to pre-pandemic levels.

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

Waiting for medical help is very difficult

It was a long process for Jim Carroll of North Ridgeville to get his diagnosis. He said it takes months for doctors to be sure, and during those days it’s tough.

“That’s the worst part…” he began to say, but paused as he was tearing up.

It felt like his skin was burning. He had stabbing pains in his eyes. His heart was racing at times. He had a terrible headache.

“I think this time period, you need help faster than the medical community can provide,” Carol told us, wiping away tears.

In the same kind of window Carroll said he had lost a friend, who also had POTS, to suicide.

“There was a lot of hope, but she just couldn’t wait,” Carroll said of suicide. “I think it is too risky with this [syndrome]. “

sitting in a sitting

distance Our original story about pots Aired last month, Carol, who uses a wheelchair and an occasional cooling jacket, called us about a Cleveland support group developed for people just like him and at all levels of POTS severity.

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

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

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

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

Rachel Cover from the Akron area had a lot of bad days before she was diagnosed with POTS. I found support meetings through a POTS specialist.

“Definitely the best decision I’ve made in my sick journey has been to try and find this group,” Cover said.

“Are you surprised at how many people have gone through this?” we asked.

“My God!” The cover said. “Absolutely stunning.”

More ways to contact

Carroll also created a file Facebook group It is called POTS CLE.

“I was feeling so weak, so lost in the system,” Carroll said, and I thought I was sure I wasn’t the only one.

Now, valuable POTS information and even a few laughs are shared, which makes a huge difference after each session.

“It’s about getting you off your chest with people who really understand,” Cover said.

“I just feel strong like, ‘I learned all this and I can do something about it,’” Grossman told us.

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