What Living With POTS Is Like

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What Living With POTS Is Like
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How do you explain POTS to other people?

Edited to make it shorter:

I’d really appreciate advice on how to explain POTS to (a) close friends who don’t understand/ accomodate (b) strangers in public transport who don’t believe bc of age / appearance (c) bosses who seem troubled by requests for accommodations.

I’ve thought of getting a visible pin or something but I do not like drawing attention to myself because of my condition

Thanks in advance!! ♥️

#AutonomicDysfunction #Spoonie #PosturalOrthostaticTachycardiaSyndrome #POTS #LivingWithPOTS

(edited)
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Heading to Mayo Clinic

I have had disabling POTS for 13 months, and am SO CLOSE to getting real help! After 6 different doctors, I've tried 4L of water a day, waist-high compression, salt tablets, 2 electrolyte drinks a day, 20 physical therapy sessions, the CHOPS exercise protocol, and have tried metoprolol tartrate, metoprolol succinate, and propranolol. 7 months ago I was told I am "out of options until you see a POTS specialist" who at the time, was booking out until 2024. I have lost my ability to work, my independent living, my ability to drive, and so much more. From friends, to routine, to income, this year has been a year of loss.

While I hate that I am "excited" for 16 different tests (valsalva, QSART, Tilt table, sleep oximetry, endocrine testing, exercise testing, echo, holter, blood, urine, and more), I am genuinly so READY to finally get to the bottom of what is wrong (is it JUST POTS, or what's the deal?!), and to find a treatment plan that WORKS. I am so grateful that Mayo accepted me, and that their wait times were less than the only specialist in my state.

Only 10 days until we go. 7 days after that, I'll have my answers. Can't wait to report back.

#PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Dysautonomia #finally

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Another day of blood pressure yoyoing 🪀 #AutonomicDysfunction #BloodPressure #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

Today was rough. I just got over a flare up 2 weeks ago and now I'm having another one. They're complete polar opposites. The flare up 2 weeks ago was a blood pressure spike that landed me in the ER and the one I'm having now is blood pressure drop. I have eaten so much salt today and even done the salt drinks, but it won't go back up. I'm tired, but sleeping worries me when my blood pressure is low. Ah the joys of a blood pressure system that can't make up it's mind.

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Any one been though this?

Hi guys just have a question about my last neurology appointment. So at my appointment she was doing the lay down and the sit and stand test for dysautonomia. My Primary care doctor did this before and my heart went from 60bpm to 125bpm.. i even did it at the ER and my bp and heart rate changed. But when the neurologist did it when I stood up she couldn't get a read on my heart rate or my blood pressure. (She also didn't wait a minute she took it immediately when I stood up bc I got dizzy) we tried this twice and each time I stood up she couldn't get my BP and my arm was turning like purple/blue so I sat down and everything was normal????? So she told me I passed. But she sent gave me a referral for the table tilt test. Any one else gone through this before???

She was also telling me that we could be catching he beginning/start of an autoimmune disease. I had tested positive for ANA. But my rheumatologist ER doctors and my previous primary care doctor (well my primary care also thinks it might be an auto immune disease and dysautonomia) believed it was dysautonomia. Then the neurologist also kept saying its long covid or some long viral thing after covid. But I don't think so bc this happened in end of November start of December and I was legit fine. Just feeling frustrated and this is indeed a long tiring journey of feeling ill.

#dysautonmia #AutonomicDysfunction #POTS #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

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Managing summer heat

I’m more new to my diagnosis, but I’ve had symptoms for a loooong time. Any potsies have tips for the summer heat? I live in the Midwest so the heat isn’t too horrible but I’m really bad with heat sensitivity and sudden temperature changes. #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #AutonomicDysfunction

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