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Hi. This thread will be long but I feel it’s important to talk about.
Last year I got diagnosed with something called POTS, a subset of dysautonomia. When I stand up, my heart beats too fast, causing a bunch of debilitating symptoms. But how did I get to that diagnosis?

In 2017, I had two concussions and started having disabling symptoms shortly after. When standing, I was dizzy and short of breath, couldn’t stay awake for more than 2 hours at a time, and had blurry vision, cognitive decline, memory problems & more. So, I dropped out of college.

For two years, I went from doctor to doctor to try to figure out what was wrong. None of their concussion or migraine treatments were working and my neurologists became frustrated. All the other doctors told me I looked healthy and insinuated it was all in my head.

Meanwhile I went back to college but was struggling, and I quit my job because I was so dizzy and foggy and forgetful and couldn’t handle it’s physically.

After all of this searching, a friend I have who has POTS told me to do a test at home to check my heart rate and blood pressure while standing. I hit the criteria for POTS and was able to find a doctor who specializes in treat patients with it.

I went to the appointment, and for the first time in two years, a doctor ran more tests than just a blood test and an MRI. When he came into the room to see me, he said “no wonder you feel so horrible! Let me show you your test results.”

He went through each one and showed me how they were indicative of POTS, and explained all of my symptoms. And although other doctors said I looked healthy, he was able to see signs of dysautonomia just by examining me! For the first time, I felt actually validated. My mom cried.

I’m doing a little bit better since I started treatment. It will take a while because it’s caused by a myriad of things like concussions, autoimmune diseases, EDS, and viruses like mono, the flu, & COVID; finding the root of the problem is hard.

So why am I sharing this?

Because dysautonomia affects over 70 million people worldwide, and its subset POTS affects between 1-3 million Americans alone.

Because dysautonomia is often caused by viruses, and COVID is going to cause an influx of dysautonomia in our population.

Because many doctors don’t even know what POTS is, let alone how treat it; more doctors who are aware of & will treat dysautononomia/POTS are needed.

Because there’s not enough funding or research for a chronic illness that affects millions and millions of people.

Because most POTS patients are women; we are often medically gaslighted and dismissed by doctors.

Because the world should be aware of an illness that is more common than multiple sclerosis & probably affects someone you know.

Because had someone with POTS not told me about it, I might have never been diagnosed or gotten treatment.

If you’re experiencing symptoms like these, you’re not alone. It’s not all in your head. You are not dumb or dramatic like people and doctors might have made you feel.

Symptoms of dysautonomia and POTS are real and chronic and debilitating.

And if you know someone with dysautonomia/POTS, which you probably do because it’s so common, one of the most encouraging things you can do is learn a little bit about it and spread awareness.
:)

Here’s a link to learn more about POTS if you’re interested
http://dysautonomiainternational.org/page.php?ID=30