Thursday, July 2, 2015

P.O.T.S (Postural Orthostatic Tachycardia Syndrome)

How's that for a title?!? :)
I had completely decided not to discuss this topic on my blog, but something happened yesterday that made me realize someone out there in the bloggy atmosphere might benefit from hearing about this syndrome...
Why am I bringing it up??
It's what I have...
So I will consider myself a minor expert  doctor right now. ;)
Me, Clara and Corban were at a fun little hot spot in KC yesterday called Wonderscope...and I'm meaning hot literally because only 1 room was air conditioned and my clothing was feeling a bit swampy...that's always wonderful, ;-P Anyways, here is Ms. Clara Bear just having some learning fun...


As I was sitting in the snack area, on a happy high from the salt and vinegar potato chips I was eating (ahhh new NOT healthy favorite food alert!) I overheard a new mom say to another mom "that she was feeling very dizzy more recently any time she walked around for longer periods of time." I took a mental note that she had a near one year old little girl with her. I debated if I should be a complete creeper and ask her more questions but I decided against that and instead decided that she probably read my blog since I have 13 page views a month and would help her on here. ;)
No, but actually when I got this diagnosis at Mayo Clinic, I googled everything I could find and only found 2 or 3 blogs about P.O.T.S. back then. (Thankfully I've found there are more now). However, prior to being at Mayo, I'd seen at least 15 doctors in numerous specialties.
Doctor appointment # 326...Clara was there to document it all lol.
Anyways, not one doctor ever even mentioned this as a possibility back then, so here we go....
my very accurate and scientific information about POTS...
It commonly occurs after pregnancy and sneaks up FAST!
If you start feeling dizzy when you walk up stairs, or walk around a while, or just stand can do a simple test at home.
Lay on the floor for 5 minutes and then check your heart rate....stand up and immediately upon standing check your heart rate again. If you notice an immediate increase of 30 beats or more that is a positive sign of P.O.T.S. Another way to check is continuing to stand still and monitor your heart rate at the 1, 5 and 10 minute marks. If your heart has reached 120 bpm after simply standing still for 10 minutes, head your buns to your doctor because you may have this condition.
I also had flu like symptoms at the onset....weakness, heart palpitations, fatigue of my limbs, widespread nerve pain and a sensitivity to the sun/heat. I have NO idea how those all go together but it does relate to your autonomic nervous system not working correctly. However, I will spare you any more details on that front because the link I've placed below has all of that covered - she was my go to blog at the beginning of this journey:
I thought these posters were kindof cute regarding this condition....and accurate.

Before I got sick, I loved to run and typically ran 5-10 miles a week, but literally overnight, I began having trouble even standing for any period of time.
I really am so much better after having Corban; I have no idea why but having his little life sent lots of those symptoms into remission.
(In case you'd forgotten who I was referring to) ;)
 However, back then I did find some relief with a mix of lifestyle changes and medicines. I know each person is different but this is a list of things that truly worked wonders for me back then...
1. Water!
2. Gatorade!
3. Salt!
Those are your lifelines to begin with - anything to keep you hydrated is helpful and while most people avoid salt, it is a miniature miracle mineral to anyone with POTS.
4. Beta Blockers (for the accelerated heart rate)
5. Florinef (steroid to assist with water and salt balance)
6. Midodrine (To treat drops in blood pressure)
That was my perfect concoction and I know that same list helped many other girls I met at Mayo suffering with the same symptoms I was experiencing. I learned after returning that some doctors in KC had never even heard of Florinef or Midodrine, so I'm so thankful to have gotten the opportunity to travel to a hospital that had specialists familiar with this syndrome.
Even now, people who hang out with me will see me sit more often than I stand and every once in a while you may catch me guzzling a Gatorade if I've been walking too long... I sometimes wonder if people think I'm simply being lazy, but then the thought passes and I realize my main goal should be  to not pass out...not to worry about what others are thinking. :)

And, let's be honest...I love that people with various syndromes and conditions always say, "I will not let _________ define me" which is a beautiful thing...but while I will say that P.O.T.S does not define does affect me.
So, to close this exhaustingly long post...I really hope it helps that sweet girl at Wonderscope who I'm sure read this and anyone else who might be randomly googling the word POTS and getting annoyed because pictures of big silver pans keep popping up!! ;)

And now I really better go, because my little "reindeer" is needing my attention lol.


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