#potsyndrome

For context I have been fainting since age 12 (2013). A full decade+ of a ton of disabling and quality of life-altering dysautonomia/postural orthostatic tachycardia syndrome (POTS) symptoms, and knowing this is the condition I have + self treating for the last 5 or so years. And I am still formally undiagnosed and untreated.

“You’re just dehydrated.” (many times)

“You’re just anemic.” (tests said otherwise and no treatment was given because he knew he was wrong but wouldn’t admit it)

“This is normal for girls your age. You’ll grow out of it.” (it was not normal and symptoms only got worse)

“Well it’s not seizures so you’ve got nothing to worry about.”

“You need to cut down on the sugar. Don’t drink juice. You’re probably becoming diabetic because of kids’ diets these days.” (meanwhile, on a low sugar diet because sugar really worsens some of my symptoms)

“You’re just fainting because you’re scared. You need to go to therapy to learn coping skills.” (scared of what? I was fainting in P.E.)

“Don’t drink Starbucks every morning and you’ll be fine.” (I’m literally caffeine-intolerant, I never drink coffee)

“You’re just deconditioned. Exercise and you’ll be cured.” (3x. always after I already explained that I overheat and faint from any exercise)

“There’s no reason for you to experience these things.” End of discussion.

“People with POTS don’t faint, so you can’t have it.” (not only blatantly wrong but what about all my other symptoms? ignored. didn’t offer further help/explanation)

“I don’t think you have POTS, but just keep doing what you’re doing because that seems to be helping.” (referring to the self treatment I do that’s specifically tailored for POTS)

“Come back to me after you’ve got some therapy.” (after I had a panic attack due to his malpractice that took me weeks to physically recover from)

“You meet the criteria, but I’m not going to diagnose you.” (2x)

“You’re not allowed to use a wheelchair, you don’t have any disabling conditions.” Notes orthostatic intolerance on visit report

“It’s just because you’re not eating enough.” (after I already explained I constantly overeat to maintain my weight, and purely based on me being thin and not my diet)

“Your heart rate is supposed to go up when you stand up. The tachycardia isn’t a problem.”

“I don’t think you have hEDS.. you don’t have the symptoms. And so POTS is out of the question.” (hadn’t discussed anything about my hEDS symptoms, not his place as a cardiologist to determine EDS, and you don’t need it to have POTS)

I missed out on a lot. My late teens are gone and I’m a young adult now. I never got to grieve those years I had to say in complete isolation because of my immune system— the world just started up again, some people never stopped living and doing things. I’ve had friend, or people I thought were friends, abandon me because I didn’t finish high school physically with them.

With undiagnosed POTS you’re constantly told “You’re just dehydrated” by medical professionals.

I’ve had symptoms for over a decade and still yet a few weeks ago a cardiologist told me it’s just dehydration, both before and after doing a poor man’s tilt table test (at my request) and telling me I met the criteria for POTS. Of course, he refused to do anything with that.

A few days ago I went through the results of some lab tests I had done with my new primary care doctor. One of the results showed I have higher than normal fluid level. I am the opposite of dehydrated. And I probably have been for years, because I have been loading up on salt and water for around the last 6 years at least.