Read all about it! Finding POTS in the News

When I first had symptoms of POTS– lightheadedness, unusual fatigue, inability to speak due to brain fog, etc– they weren’t all day, every day, and I initially dismissed them as flukes.  Had to sit down in the pharmacy line because I was about to pass out?  So weird!  Wobbly walking down the church hallway?  So crazy!  Can’t get words out?  Super bizarre!  Aw, I’m sure it’s nothing.

When symptoms became constant and inescapable and I was diagnosed with POTS, I’d never heard of it.  It sounded kind of made up to me.  I mean, Postural Orthostatic Tachycardia Syndrome… what does that mean, anyway?!?  (Here’s what Wikipedia says— hmmm… that does sound like what I have.)  I was slightly reassured to find that Mayo, Vanderbilt, and the Cleveland Clinic all treated it– I mean, those are reputable establishments– but I thought it strange that closer facilities like Emory, Duke, and MUSC did not and that a number of my doctors seemed to know nothing about it.

Headed to Vandy in summer 2013 to figure out WHAT was going on... maybe this is all a fluke!
We headed to Vandy in summer 2013 to figure out WHAT was going on… maybe this is all a fluke!
Well, standing upright with this modified tilt table test IS really challenging as I feel absolutely horrible.  But, hey, who could stand up for 10 minutes anyway?  (Oh, wait, my husband says most people can.)
Well, standing upright with this modified tilt table test IS really challenging as I feel absolutely horrible. But, hey, who can stand up for 10 minutes anyway? (Oh, wait, my husband says most people can.)
So my heart rate jumped to 197 when I was upright.  Well, an anti-POTS cardiologist did say I'm probably just all riled up.  Yeah, I bet I'm super riled up.  I bet that's it.  I'm sure nothing's the matter.
My heart rate jumped to 197 when I was upright. Well, an anti-POTS cardiologist said my super high heart rate means I’m just all riled up. Yeah, I bet I’m super riled up. That’s probably it.   I’m sure nothing’s the matter.
See?  Done standing!  And now I'm all better!  Nothing like celebrating your 14th anniversary with lots of fun tests!
See? Done standing! And now I’m all better! Nothing like celebrating your 14th anniversary with lots of fun tests!

It’s taken me quite a while (understatement) to accept 1) that POTS is real; and 2) that I have it (actually, I still am not thoroughly convinced on a given day– I mean, really? This is so weird!).  I suppose it’s a mark of my culture and generation that media portrayals of POTS make it seem more real to me.

Thus, I keep a running list of POTS in the News on this site.  The latest mention I’ve found is that Ella of the famous Deliciously Ella recipe blog and website is doing much better after a 2011 diagnosis of POTS, according to this article in the UK version of the Huffington Post.  She credits a lot of her improvement to the healthy, real, whole foods she eats.  (Just take that with a grain of salt— ha ha– POTS joke.)

I haven’t made any of her recipes, but Ella’s website is beautiful and inspiring.  Do you have any favorite foodie sites?

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One thought on “Read all about it! Finding POTS in the News”

  1. Love all of these photos from your “anniversary getaway” to Nashville!!! 🙂 Do you have the opportunity to follow up there any time soon? We were talking at lunch today about what a BLESSING it is to live so close to Johns Hopkins, and I have been praying for some nearby specialist connections for you… Hate that no one near you knows about POTS!!!

    Anyway, I am glad that you can now have a diagnosis, not just a guess at all of the “flukes” that are bothering you, and praying that there will be an end to POTS in your future!!! Praying that POTS in the news will lead to a CURE for it!!! And in terms of foodie sites, who needs anything else besides Annie’s Eats?!?!? 🙂

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