My Ttt And "Real Life" Contradict Each Other

[sue1234]

Okay, I have had 3 TTT over the last five years, and in all of them, my b/p goes up and stays for the full tilt. In fact, the last one showed an average b/p of 175/100 standing the whole time.

So, in the last couple of months, I take "random" readings after a short walk or shower. On all occasions, my b/p has dropped to lower normal(average of 105/65) or on an occasion or two, I had a reading of "error". I don't know if that was because I was too low or too high. I seem to swing pretty fast.

Anyone else have these conflicting results? Maybe that's why I feel so bad on beta blockers, and the last time I took one a few weeks ago, my b/p after my shower was 65/45.

Of course, the one thing that is consistent is the rise in heart rate anytime I am up, around 110 after showering.

Is it possible a TTT doesn't really reflect what happens in real life or am I just weird(as usual)?

[Lovebug]

Hi Sue! I'm one of those Dysautonomics that get a high BP too. I don't think your results are a contradiction but it just shows you are an individual and your "lot" in this disease is that you have both high & low BP at different times. Maybe your beta blocker dose is too high. Afterall, we don't take beta blockers for HTN anyway...we take them to calm our nervous system.

[sue1234]

I only took the beta blocker that one day. With a b/p so slow, I wasn't taking it again!

I know the bb is to calm down the nervous system, but the "side effect" for me is lowering b/p. Can't get around it.

[Sarah4444]

Tilt table tests seem like a pretty limited tool to assess what is going on in dysautonomia, but it just may be the best they've come up with so far. I know the ttt allows for some control and standardization, but it doesn't really simulate anything we do in day to day life. During mine my bp stayed pretty steady I think; in real life it's often pretty low (the other day I felt awful and when I checked it was 60/45). At other times it has been a bit high, but usually it's low.

[nunntrio]

At Vanderbilt they did not use a TTT to diagnosis me. The use a posture study. One of the Dr.'s there wrote an article saying he felt this was a better way to diagnos because during a TTT you are not required to support your own weight. Thus it does not as replicate as closely what happens in real life. There is some vasomotor thing (sorry I am in a hurry and don't know the real term off hand) that is not being tested if you are not required to support your own weight. If I searched I could find the article. I believe it was written by Dr. Raj.

The only problem with the posture study as a diagostic tool is that it is not reconognized by many other Dr.'s. When I show other Dr.'s my report from Vandy they always want to see the TTT results and they do not alway accept the posture study.

Just an idea.

[sue1234]

I appreciate your feedback.

Lovebug, I know according to my TTT, we are both the same. I remember your saying tiny doses work best in some.

Sarah4, with a b/p of 60/45, did you have to pretty much recline for a while? That's what i did the day the bb dropped my b/p to the 65/45. I felt like it was almost dangerous to be up and around(even though I didn't feel like it).

Nunntrio, that is interesting. I NEVER paid attention to what my home b/p did with being upright. I just took what the TTT said, and figured that's what my body is doing. It seems they should hook us up to the same machines and then ask us to gently pace in a room somehow. When you have more time, can you explain the posture study?

Trying to decide on the treatment plan can really be off-base if the TTT and the "real-life" results are opposite, or different from each other!

[Sarah4444]

I still have to rest, recline or lie down a lot of the time. When I "catch" really low bps it seems they are short-lived and that it returns to a more normal reading pretty quickly. I don't measure my bp often and sometimes I wonder if it is falling frequently that low and always having to pull back up. I would be so interested to wear a continous monitor for a while to see what is going on. All I know is I generally feel pretty awful.

[Lovebug]

I appreciate your feedback.

Lovebug, I know according to my TTT, we are both the same. I remember your saying tiny doses work best in some.

Yes...my doctor is adamant about small doses (as low as pediatric or even neonatal). But what I find interesting is the need for a tilt table test. The first cardiologist I saw ordered it twice for me but it was never done due to scheduling mix ups. I agree with the other poster regarding posture testing. The day I had my worst episode was one in which I could not incline from a lying position without a jump in HR & BP. I would be 115/60-80 lying but if I so much as raised up on my pillow my vitals were 130/90-100 and worse if standing (150/110-120). If that isn't a positive tilt, I don't know what would be so I don't think I need the test at all. My current doctor agrees. He has plenty enough data to support a diagnosis.

[nunntrio]

The posture study was very close to a poor mans tilt. They take you bp/hr first thing in the AM before you get out of bed they they take it after sitting up for a few minutes then they have you stand up and take it in 1,3,5,10,15,20....minute intervals. They strictly controlled my diet for 24 hour before and took a lot of blood during the test.

If you read the below article it briefly explain a TTT verses testing in which someone is required to support their own weight. That section is about half way down the page.

http://hopealways.wordpress.com/2010/06/12/must-read-for-all-p-o-t-s-patients-and-their-doctors/