Can Someone Make Sense Of This

[mae]

Say you do have tachycardia when standing and B/P necessarily doesn't drop much how do they determine You have POTS. Why is TTT necessary if your increase it heart rate has been documented from basic exam multiple times? Does anyone understand what I'm saying

I've read on here before you don't need drop in B/P for POTS DX and all of our doctors know we have tachycardia from standing so whats the BIG Mystery? This is really directed at those of us that don't pass out. If you don't pass out whats the point in TTT? The crazy doc I had said mine was NEG. because I didn't pass out well thats not one of my problems, it just doesn't make sense to me.

Thanks Mae you know I sit in the house all the time thinking and analyzing everything its like a 1,500 hundred dollar test is it necessary?

[firewatcher]

NO, a $1500 test is not necessary to dx POTS. Vanderbilt dx-ed mine with the "poor-man's tilt table test:" lying down for 20 minutes then 10 minutes of standing quietly. If your HR has a sustained increase of 30 bpm or more, you have POTS (unless you have another disorder that causes this.) I've had spikes over 60bpm, but it usually settles in at 30-40 bpm higher than supine.

[mae]

Thanks Firewatcher thats what I thought. And thats where I read about the free standing test from a doctor that does articles from Vandy. Hope I don't have to go all the way there

Mae

[mjan]

I have had 2 TTTs and they were positive and I NEVER faint.

I feel badly for those of you who faint. I feel pretty crappy though...does that count?

I guess I qualify..but my BP goes up way too high..they falls..and my HR does go up around 30..but not as high as most of you.

Jan

[mkoven]

I've heard that the test isn't standardized--it's done and interpreted differently in different centers. I'm glad that my one and only ttt was at cleveland. I also don't faint/haven't fainted. My ttt showed "late tachycardia"--meaning that my increase was over 40bpm but didn't kick in immediately, and hypotension. I also was still on meds, so probably would have been more pronounced if they'd had me discontinue those. I felt bad, but didn't faint.

I think if I'd done it in my home town, they would have called it negative, as they're fixated on the faint. In my daily life, my response to standing is variable. Sometimes I am more potsy, sometimes I actually drop my hr and bp. My current pcp, who does know about dysautonomia, prefers to just call it orthostatic intolerance. In other words, regardless of whether it's hr or bp, I don't stand still well without my vitals doing odd things.

I also have a hard time standing because of my joints. I don't want to repeat it, as it really takes a toll on my hips and pelvis to stand for so long without moving.

[potsgirl]

Mae,

I had my TTT done both at a highly respected heart center in Tucson and then at the Mayo Clinic with an ANS specialist. Tucson told me I was 'definitely positive' for POTS. My BP runs low and drops to about 45/40 after I'm standing, while my pulse zooms up from around 50 to 125 (I wear a pacemaker for bradycardia, and they disconnected it). Mayo told me I had severe orthostatic hypotension with approximately the same results. I almost fainted both times, because I am a fainter, but both docs told me that fainting didn't mean anything either way. Some people faint, some don't. I hope you get a good specialist to help you find the right treatment.

Hugs,

Jana

[flop]

Ni Mae,

the TTT was first used as a way of diagnosing the cause of recurrent syncope. By tilting people the doctors are more likely to induce an episode of syncope than by just having the patient stand. Becuase they were looking for the cause of syncope (BP drop, bradycardia, or both) the test was often considered to be negative if the patient didn't faint.

It was by doing TTTs on people who faint that research doctors first noticed a group of people who had an unusual response durring TTT - their heart rates went up (they all had POTS). This was an important finding because it gave doctors a test to diagnose POTS. Unfortunately many doctors have not heard of POTS or don't know much about it, they are the ones who would most likely describe a typical POTS TTT as "negative". Taking information about POTS to these doctors may enable them to learn and then work with you on treatments - if the doctor isn't interested in learning with you then it is probably time to find another doctor.

People often get good care from a doctor who previously knew nothing about POTS but is willing to read and learn.

Flop

[Miriam Poorman-Knox]

Dr. Low says that most people DON'T pass out. So that is a "myth" remember it is a syndrome. many, many things

[erikainorlando]

I have never fainted!!! I thank God for that every day!!!

But my first EP stood there and we watched my hr go from 80 to 150+ immmediately and sustained for I am not sure how long....but he didnt' even make me stand there the whole time. He jjust said POTS. I am so grateful for him. Young guy....he said he wanted to email all my previous docs and tell them of POTS as he was so upset it took soo long to get me diagnosed. However from what I read here I am onne of the lucky ones as it only took 6 months to get diagnosed....but they were 6 horrible months!!

Good luck....Erika

[flop]

One of my doctors has just written a report for my insurance company. He states

"we have given her a current dignosis of postural orthostatic tachycardia syndrome (POTS) although we would recognise that syncope is not a truly typical feature of this condition"

I do have syncope but I have never passed out durring a TTT (and I've had several TTTs).

Flop