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Posted

I have had 4 TTT in the last four years. The first three, I was just strapped in then tilted up for a minimum of 30 minutes. All three showed increasing b/p and increasing pulse, and my pulse went above 30 points every time. During my last one a year ago, my b/p rose from around 115/72 to 180/110!

My last TTT, at Mayo, was 10 minutes. As I was lying down, they put my arms in "holders" sticking out somewhat horizontal to the floor when in a standing position (why?? doesn't seem natural). So, I found the results showed my pulse did not go up over 28 points from baseline and my b/p did not get abnormally high--in fact, pretty normal at around 115/70.

So, now all the sudden I am NOT hyperadrenergic?!? AND, now saying I don't have POTS?!? I know my history, have it all documented, and now with their short, weirdly positioned test, my numbers look "normal"?

Are the arms up skewing the results? Or, in the past tests, were the arms down skewing the results?

I am now confused. I still know that I can not be up longer than my 10 minutes in my everyday life.

Posted

I would ask the doctor who ordered this TTT for you about your questions. I've had 3 TTT and they've all been in the "Mayo position." I wouldn't think it would have much to do with the numbers, but of course I'm no doctor and can't really say. Please get in touch with your ordering physician and find out what they have to say. My test was also 10 minutes, and I had a dramatic reaction. Others?

Hope you get some answers soon! And remember, that was just one test at one period of time. Other factors may have played at part in your response.

Cheers,

Jana

Posted

My arms were strapped down to my sides for both of mine which were done at 2 different facilities. The second one was actually coducted by my POTS neuro personally. Don't know how it would affect the results to have arms up but I would imagine it has some affect given the difference in pooling that would occur.

Posted

True, Jana, that other factors could have been at play and it is just one test. I somehow feel the arms up were an influence here. My hands normally pool alot when I've hit my upright limit. With the arms being held "up", I feel like the natural pooling was not allowed to happen. Of course, they documented that my feet turned red and then blue, so the feet pooling did show up.

Maybe I'm changing? Maybe I'm in transition from hyperPOTS to some other form of dysautonomia? I hope my body's not giving out!

Posted

Katy, the hand pooling was what I was thinking too. My two previous TTT were with reputable places, and my arms were strapped down along my side too.

I guess what I wonder is, when I pull my arms up to about 75 degrees away from my side(like on the TTT), my arm becomes above my heart level. I may be wrong, but it looks like it. How can you get an accurate b/p at that point? All of my other TTT show significantly high b/p when upright, and this one shows normal to low-normal. It doesn't make sense.

Posted

My hands were not strapped down but if I moved them away from my sides the nurse told me not to, so I bet it can change the results.

Posted

Mine were by my side, too...In order to get a proper blood pressure, I have always been told that your arm needs to be at the level of your heart♥

Posted

4 TTT? One was more than enough for me. I wanted to be off that table even before the test was over.

For mine, knees, waist, chest strapped down, arms at my sides. Normally they preferred to strap the person's arms down next to their sides, but I requested that they didn't.

I think it'd definitely change the results. In normal healthy people, when taking a blood pressure you're supposed to add/subtract 2 mmHg for each inch the arm is raised/lowered from the heart. Logically, this effect would be exacerbated by blood pooling. I've also experienced this with tilt training at home, with my wrist brace getting very tight as blood pooled in my hands.

Posted

Thanks everyone. Yea, it seems most are done with arms at the side. They did not take any blood for norepi levels. You know with my history of no-care-whatsoever-medical-care, I am worried they will take it as a "normal" TTT and try to tell me I don't have a POTS issue!!

Posted

" I am worried they will take it as a "normal" TTT and try to tell me I don't have a POTS issue!!" I would worry they might decide that also glad you have 3 others to back you up. I did my lying and standing HR many times before my TTT on different days ( cause I wanted to know it would show up ) and although almost every day was a positive test I found the difference could vary by a huge amount. ( 64 point difference one day, 27 another ) After the test saline made left me very little lying standing difference.

Anyhow, for the arbitrary record they did mine with my arms strapped parrallel to body toward feet.

Posted

I don't like to think they would tell you "no POTS" based on the arms being horizontal. Can't imagine us walking through life with our arms like that can you? :)

All I can think of, is that they wanted you to have your arms like that to find something specific. Hope you'll get the answers you need Sue!

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