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Hi, I was wondering if some of you could help me decide if I should be tested for POTS. I have been having symptoms for 12 years. I had an abcessed gangreene appendix that was misdiagnosed and I carried it for 5 months before having exploratory surgery to see what was going on and finally having it removed. During all this I was in and out of the hospital several times and given IV antibiotics. This was when my symptoms started out of the blue. I have been to 5 cardiologists and had an echocardiogram, EKG, treadmill, 24-hour monitor, and was diagnosed with inappropriate sinus tachycardia. I accepted this diagnosis until recently. I read the description of POTS and a lot of it sounded familiar. Here are a list of my symptoms:

*tachycardia, woozy and weak after meals (breakfast and lunch are worst)- sitting or lying down helps; being active or even standing makes me feel awful

*tachcardia and woozy when I have fever (heart rate goes way up) and in hot tub or hot shower (ex: pulse 120-135 with fever just sitting still)

*caffeine, albuterol (for asthma), alcohol, all make symptoms worse

*symptoms worse after ovulation (from body temp. increase?)

*when tachycardia hits I feel short of breath

*viruses (nausea) and colds make symptoms worse

*coughing a lot (I have asthma) makes me feel like I could pass out

*after exercise my heart rate doesn't come down as fast as it should

*tingling in hands occasionally

*sometimes my heart rate goes up fast when I stand

* heart adds a beat occasionally when I bend over

*anxiety makes symptoms worse

My symptoms were worse during my three pregnancies. I have never passed out but I do have tachycardia and this weak, woozy feeling in response to the above situations.

So do you all think I should be content with the IST diagnosis or should I get checked for POTS? Thanks so much for reading this and for any replies!

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hi jen -

welcome:-) there's a lot of good info on the forum & some pretty nifty people to go along with it. we're glad to have you!

obviously no one here can diagnose, but my take on things is that if you're questioning or not satisfied a diagnosis or treatment, you should trust your gut and - if you're so inclined - keep searching. most of us on the forum didn't arrive at a diagnosis easily and while the diagnosis doesn't bring an autonomic fix/cure, it never hurts to know what one is dealing with.

just so you know where i'm coming from, i have autonomic neuropathy, OI/POTS, NCS, & other symptoms/diagnoses that are related.

a lot of the symptoms you're identifying with CAN be POTS, but can be a lot of other things too...including but not limited to IST. one of the big differences between POTS & IST is the "postural" aka upright. as a general rule those with POTS improve (in terms of tachycardia) the closer they are to flat (i.e. better sitting than standing, better laying than sitting). there are a lot of other factors that i am far from qualified to comment on, but that's one of the biggies...

the "gold standard" for a OI/POTS diagnosis is a tilt table test...

if you're curious enough to be posting, it can't hurt to at least bring up the issue with your doctor. (although some docs don't respond so well to questions re: diagnosis, so a doc's reaction could in theory "hurt" :P ) and don't be surprised if your doc isn't familiar with POTS...not all are

as far as treatments, some are the same and some are different (for IST versus OI/POTS)...

good luck!


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