Just saw a dermatologist who knew about dysautonomia!

[Sushi]

What does a TTT show in NMH?

I had a "bells and whistles" TTT--about 6 different tests within the TTT. So it showed lots of things going wrong. There was even analysis and commentary on what was going on when they lowered me flat at the end--it took way too long for the autonomic system to stabilize BP, electrocardiogram, pulse, oxygen... My doc also analyized it by matching -- second by second -- the electrocardiogram with BP, pulse and other readings.

I never had a raised pulse but had wildly swinging BP through-out. On the "long" section it finally settled at 88 systolic over 80 diastolic after about 25 minutes and that is when I "called it" and told them to take me down as I felt so awful. My doc had instructed me to stop the test anytime I felt really bad.

I met the criteria for dysautonomia from three perspectives: over a 30 point drop in systolic, pulse pressure less than 18 (I think it was 18?), and a rise in diastolic of a certain amount that I can't remember without looking it up.

Sushi

 

[SDSue]

I met the criteria for dysautonomia from three perspectives: over a 30 point drop in systolic, pulse pressure less than 18 (I think it was 18?), and a rise in diastolic of a certain amount that I can't remember without looking it up.

It's amazing what a competent doctor can find. Looks like I'd meet it on 3 or 4 criterion as well: rise in pulse over 30, pulse pressure of 11, systolic drop over 30, and O2 Sat dropped. But mind you, I was merely "anxious". Sigh.

At the end of the day, we're quite autonomically insufficient and the drugs like midodrine are just band-aids. Treating the ME (an eventually it's root causes) is our hope. C'mon research - time's a wastin!

 

[Sushi]

At the end of the day, we're quite autonomically insufficient and the drugs like midodrine are just band-aids. Treating the ME (an eventually it's root causes) is our hope. C'mon research - time's a wastin!

Yep, band-aids, but they are often needed to "stop bleeding" until the research quits a wastin and finds some answers.

Sushi