Does This Sound Like Dysautonomia?

[AdrenalMom]

Hi. I'm new and I just had a tilt table test. I am also on corticosteroids for either steroid withdrawal or adrenal insufficiency (it's a long story, just know I am basically stuck on steroids for the moment and whether or not I ever wean is up in the air).

I'm trying to make sens of the TTT and was hoping for some feedback from those of you who know this stuff better than me!

1.My heart rate definitely elevated quite a bit but not necessarily right away. I don't know how long into the test it went up to 117, but it did shoot up with my BP. Does it have to go up in 10 minutes for POTS???

2.I did not pass out, not technically. I had a lapse where I lost time, faded and was disoriented, but not a true state of unconsciousness.

The BP went from 141/89 to 128/59. That was brutal. I was short of breath, couldn't think straight and I didn't dare look at the floor for fear of passing out. The lines on the EKG monitor went all squiggly too.

After that drop my body went into overdrive, my BP skyrocketed to 150/101 along with my heart rate at 118. I began to sweat and feel jittery. Very odd.

I had another drop too, but the diastolic (bottom number) was still relatively normal (can't remember the exact number, 80 maybe) so I didn't 'feel' it as much. For me, it's when the diastolic is in the 60s or lower that I start to have problems.

3.When I laid down my BP was good, 128/76. When I sat up, it started out good and then began to climb. Don't know the heart rate though.

I have no idea what to make of this. Could it be POTS? Does the HR have to go up in just 10 minutes or no? Or could this be some other form of dysautonomia? I am a little confused and trying to make some sense of the experience.

Thanks for your help.

M

[Chaos]

By definition POTS is the HR going up 30 or more (beats per minute) or going higher than 120 in the first 10 minutes.

The blood pressure stays fairly consistent in POTS although various sub-catagories of POTS patients (like hyperadrenergic folks) can have big increases in blood pressure.

Some people have POTS plus NMH (neurally mediated hypotension) where they meet the requirements for POTS but then when they continue the test beyond 10 minutes it results in a major drop in BP.

Some researchers have also described what they call a "delayed accentuated tachycardia (DAT)" where the HR may continue to climb after the first 10 minutes.

Hopefully you've stopped by the main DINET website which is LOADED with great info on these topics.

Welcome to our group! Glad you came by and hope you find some answers. Sorry you're in the same boat with the rest of us!

[AdrenalMom]

Thank you Chaos--that synopsis was helpful. I wish I had paid more attention to the heart rate and timing of everything but I didn't expect the test to produce any usable data. And I'm completely new to dysautonomia.

M

[skiberthoud]

Hi AdrenalMom. Welcome! Perhaps you could obtain a copy of the testing for your own personal use? When I received my copy of test results they had a nice little chart with my stats per minute. Enjoy this forum...there's a wealth of knowledge here!