Discovering POTS: Share Your Story

It took years. I was living in my sorority house and one of my sorority sister’s real life older sister has pots. She recognized the symptoms when I fainted and knew I had been looking for answers for years. She said the same thing happened to her sister. She got us in touch and months later I finally received my diagnosis

I had a concussion that flipped my world upside down. when I wasn’t recovering from traditional concussion protocol, I got sent to dozens of doctors. finally they realized I had POTS, which was causing my symptoms. I guess I always had it and it got amplified by hitting my head

My mobility plummeted so the wrecked nervous system couldnt just be from PTSD so I went online to talk to people with similar issues. Figured it could be POTS or CFS but since I couldnt test CFS at home I went for POTS and it was correct based on data and family history. Lots of denial later, months of fainting and scary situations, and I finally got around to labeling it as such and treating the issue the best I could. Now I can sometimes do things and ready to see a doctor once the opportunity is open. 👍

Thank you everyone for the information! It was brought up to me by my therapist as a possibility and I wanted to find more "personal" information

Oh wow. Like when I get up to quickly. But all the time. I suppose?

TashaSkyUp, POTS stands for Postural Orthostatic Tachycardia Syndrome. Usually upon standing the blood pools in the legs away from the brain and the heart has to beat really fast to try and compensate but it’s not good at circulating the blood back up. It’s a nervous system problem. It causes fainting (or near fainting), dizziness, nausea, rapid heart rate, high or low blood pressure (for some it drops, others it rises), and other symptoms. It’s not fun

I watched a girl on YouTube who had a different condition same as me explain it and I was like “ha, that’s me” and sure enough through a poor man’s tilt table test convinced myself I had it. Convinced my doctor I had it who sent me to a cardiologist who then confirmed it

I found out after I kept being told it was anxiety and it was all in my head. Oh and I kept having to go to the ER to get IV fluids and they mentioned it to me. I then went to an autonomic specialist and was diagnosed then.

What is POTS?

I had a feeling I had it back after graduation but it subsided. I know I had it for certain one day after I took a shower, I went to go to the fridge, my dog was in her kennel atm and she whined, I went to grab the door and started to fall over, my heart rate was 178

I drank too much coffee and my hand was shaking uncontrollably in Sophomore year math class.