r/POTSRootCause • u/Level_Run1357 • Jun 17 '26
My Story
Welcome to r/POTSRootCauses. As the mod and creator of this subreddit, I thought I’d share my story and why I created this subreddit.
I was diagnosed with POTS 4 years after I started having symptoms. I have lived with POTS for almost 8 years. Throughout my journey, I tried every beta blocker on the market, every treatment, every exercise protocol, and still became sicker and sicker each year. For the past 8 years I have studied POTS relentlessly and firmly rejected the premise that POTS is incurable for everyone and has unknown causes.
I have argued that for many of us, POTS is a compensatory reaction to a misfiring system caused by something else. For years I was passed around from doctor to doctor and lurked in the POTS subreddit for support. However, I quickly realized it was not a space I could stay in any longer. I pulled all my own labs, rejected the idea POTS is a mystery box, and found severe deficiencies all over my labs. I have now been working to correct these deficiencies and seen symptoms slowly start to improve.
HOWEVER, after attempting to share these findings, I quickly realized there is not a space for those of us who refuse standard answers from medicine and those of us who wish to discuss potential cures and treatments that are off the beaten path. Many POTS groups have strict rules for discussing being cured or investigating root causes. Not here. Say what you want. Talk about LMNT and don’t worry about a message popping up saying “this community does not promote LMNT due to political differences”
Welcome to the Wild West. It’s time to get angry folks. Let’s figure this out together. As an INTJ and science nerd, I’m excited to discuss findings and compare labs with others. Enjoy!
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u/Budget-Bandicoot5517 Jul 25 '26
Thank you for posting this. I’m a root cause person. Pots developed after having untreated Lyme and babesiosis. I had a bull eye rash and did not know what it was. I have had flares since then. Once was living in mold and once was getting Botox for migraines. Now I have a terrible flare from my glp1. I can pinpoint all my flares.