hi! i’m 17, and i was diagnosed with pots last year and recently i’ve been having episodes where i’ll feel like my entire body is hanging upside down and spinning. does anyone else get this or could this be related to a separate condition?


Postural Orthostatic Tachycardia Syndrome (POTS)

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  • emily.phillippe


    Hi! I was diagnosed with POTS at 18. A little over 2 years ago. I had one week where i was miserable. I was usually able to control my symptoms well. But i happened to be on my period that week. I was so so dizzy. My head head felt like a ringing gong. Just vibrating back and forth. I went to the ER in 3 out 5 days for fluids. The fluids helped. After that i began getting fluids once a week for about 3 months and started birth control. Birth control was a life saver! I have not gotten IV fluids in over a year!

  • Potato_Chip


    That definitely sounds like POTS to me! I just found out recently that there’s many different subcategories of POTS, and each one presents differently. I’d recommend trying to find a dysautonomia specialist to narrow down what category it could be, and hopefully they’ll be able to help out! I’m on a waiting list for a few different places, but the best one I’ve found so far is the Vanderbilt Dysautonomia center. There’s also the chance that you could have a comorbidity making the POTS worse. In my case, I have EDS which means my blood vessels are too stretchy which makes my blood pool in my legs even more than with just POTS. I hope you find some answers, let me know if there’s anything I can help with! 💛

  • PlumCo0kies


    I've also had some issues with vertigo and not really being able to differentiate up from down. My POTS is part of a different condition, so these symptoms went away with medication that might not work for you. Do you have any numbness in your hands or feet?

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