bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 Just wondering if there is such a thing as a false positive on a TTT? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 11, 2013 Report Share Posted June 11, 2013 Bebe,I'm not sure if this answers your question, but based on my first TTT I was dx-ed with neurocardiogenic syncope because I fainted. I have never fainted before or after that test and in time my dr figured that it was just an oddity. I have my own theory about what happened and it involves me being extremely dehydrated, deconditioned (yes, I admit!) hungry, in withdrawal from ativan, and really scared. The POTS dx - I still have it, but my POTS symptoms are nowhere near as severe as they were during that TTT. My HR jumped by almost 60 bpm when tilted and given that I started at 90+ bpm at rest ...you can imagine it was anything but fun.If I were to come off mestinon (my only POTS medication at this time) and would find that my HR behaved, then I'd have good reason to doubt the results of that first test...but I'm not ready to do that yet Alex Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Author Report Share Posted June 11, 2013 Alex,Very prior to my TTT, I was dx. with hypertension (139/90something) and was put on 10mg of Norvasc. Had a treadmill stress test that I passed with flying colors, never even broke a sweat, the report even said that I had an above average tolerance to exercise. Then bam! a week later I had this weird panic-type attack that sent me to the ER. It was there that an EP saw me, told me to stop the Norvasc, that I didn't have high bp, put me on a 21 holter monitor (that didn't really show much besides some tachy) and a bit later I had the TTT. Within three minutes, my hr went from (I think) 60's to 150+ and even into the 160's at the end and I did not faint. He repeated the test two more times, same results. He said, "You probably have POTS" blah, blah, blah.I'm asking the question because I don't have the "typical" symptoms ie: blood pooling, syncope (even though only 30% suffer from this), hypotension, hypovolemia, and on and on. I have symptoms mind you.I'm still not sure about the whole orthostatic intolerance thing either. I would suspect that the literal meaning of this would be, unable to tolerate being upright. I do not have this problem. I've questioned for the last 4+ years if I really do have POTS. My doctor won't perform bloodwork for other things and I'm just about at the end of my rope. I would think that there are many things that could cause someone to be tachycardic, such as being put on such a high dose of Norvasc at the beginning while having (what I consider and from what I've read) really boarderline bp (btw, the dr. that first prescribed the Norvasc didn't even come to the hospital even after I called and told her what was going on and asked her if the meds could have anything to do with it). As well as having a rather low potassium level of 3.2 at the time, which, hello...can cause problems.Questions, questions, questions, and when I'm done with those, I think I have a few more! Sadly, nary an answer as of yet...I wish there was a doctor out there that would just come over for some coffee, I might even be inclined to make some scones or something and go over all of my history and help me to figure this whole thing out. If you know of a dr. willing to share some coffee, scones and health records while willing to help me put the pieces together, please feel free to pass on my information Be well!!Just trying to learn all I can. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 12, 2013 Report Share Posted June 12, 2013 Bebe,I know what you mean - I've doubted my dx so many times...to be honest, I may be in denial as we speak No blood pooling here either, most POTS meds I tried made me worse rather than improve my condition, I don't faint, I don't have orthostatic tolerance - my HR can be into 130-140's but other than the pounding tachy I don't really complain about anything else when I stand...and the thing that I find "strange" is that in most cases my symptoms are not relieved by recumbancy. I can spend hours in bed with this or that symptom, particularly with an elevated HR (not so much lately though, knock on wood) and find no relief.My potassium has been on the low side - I had many tests where my level was 3.2 but even then no dr said I should consider supplementing, no ER dr ever gave me saline IV for the tachy or potassium for my low levels. (but you've already read the recent thread on potassium)From my experience, I've had so many tests - blood work, imaging, TTTs, stress tests (my POTS dr told me he might not be able to get such good results himself), nerve conduction study, EEG, countless ECG's and so on and on and still the several drs I'm seeing are not sure what to make of my case.I'll definitely pass your info to my tall, dark and handsome dr who loves coffee and scones - seriously now ...I'm sure you'll find a dr who will be willing to look into whatever it is that happens with you with a fresh set of eyes and put 2 and 2 together; just don't give up hoping and don't give up looking for answers.Hugs,Alex Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 12, 2013 Author Report Share Posted June 12, 2013 Alex,Well you sure sound a lot like me...a medical mystery it seems. I will try my best to keep up the search.Thanks so much for your reply Be well,Bebe Quote Link to comment Share on other sites More sharing options...
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