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 people to pass out, have digestive problems and very rapid heart rates, and much more. At times, POTS appears to be brought on after viral infections.
Within the past few weeks, reports show various medical centers in the U.S. and the U.K. have seen significant jumps in referrals to POTS specialists as 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 HARD
It was a long process for Jim Carroll from North Ridgeville to get his POTS diagnosis. He said it takes months for doctors to be sure, and during those days it’s beyond difficult.
“That’s the worst part…,” he started to say, but stopped while tearing up.
His skin felt like it was burning. He had stabbing pains in his eyes. His heart was racing at times. He had terrible headaches.
“I think that time window, you need help faster than the medical community is able to give it,” Carroll told us while wiping away tears.
It’s in that same kind of window that Carroll said he lost a friend, who also had POTS, to suicide.
“There was a lot of hope, but she couldn’t wait,” said Carroll about the suicide. “I think that is a big risk with this [syndrome].”
SITTING IN ON A SESSION
After our original story about POTS aired last month, Carroll, who uses a wheelchair and a cooling vest at times, contacted us about his Cleveland support group developed for people just like him and at all severity levels of POTS.
“You know, Rachel, long car rides trigger me and a lot of us, in general,” said Carroll to a POTS patient in a recent Zoom therapy session for the group. They talk about frustrations, symptoms, and words of wisdom about things like doctors’ appointments.
“Having someone with you is so important, because with POTS brain fog, it could go in one ear and out the other,” said 21-year-old college student Rachael Grossman from Moreland Hills during the therapy session.
“What does something like this mean to you?” we asked her.
“It’s just so important to have a group that you can just turn to. Not even just for symptoms but just for support as well. Like, ‘Hey, I had a really bad day,’” said Grossman.
Rachel Cover from the Akron area went through a lot of bad days before being diagnosed with POTS. She found the support meetings through a POTS specialist.
“Absolutely the best decision I have ever made in my illness journey was trying to find this group,” said Cover.
“Were you surprised by how many people were going through this?” we asked.
“Oh, my gosh!” said Cover. “Absolutely mind-blown.”
MORE WAYS TO CONNECT
Carroll has also established a Facebook group called POTS CLE.
“I was feeling very invalidated, very lost in the system. And I thought I’m sure I’m not the only one,” said Carroll.
Now, valuable POTS information and even a few laughs are shared, which makes a big difference after every session.
“It’s getting it off your own chest with people who truly understand,” said Cover.
“I just feel just so empowered like, ‘Hey… learned about 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 change to twice a month soon.
RELATED: Mom of 2 shares journey to wellness after diagnosis with POTS, gets second chance at life
