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green
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Hello All,

I am scheduled for a 2nd Tilt table test, and I am unsure whether to go through with it. I would like to know if anyone has any thoughts on the utility of a repeat test.

A few months ago, I decided to see a neurologist who specializes in autonomic dysfunction (I found him on the dinet website) He asked me about my first Ttt - which was a negative (no symptoms, no abnormal change in BP or HR) and scheduled another one, at his clinic.

I feel like a 2nd Ttt is a waste of money. While his clinic uses the same protocol used by Boston Medical Hospital (according to the technician this involves starting the test out with some deep breathing and the valsalva manuver), and my previous Ttt did not use this protocol, I have no information to suggest that this protocol significantly increases the sensitivity of the Ttt. Furthermore, I'm not totally sure what good a positive Ttt would do me. Will a positive vs. a negative test mean a difference course of treatment, or a different round of follow-up tests?

I am beginning to find this situation very frustrating. I feel like none of these tests are *hitting* anything, so they're not revealing any new information about my problem. Has anyone else considered turning down a 2nd Ttt, or had a 2nd Ttt, and either learned something new or come to regret their decision?

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My 2nd TTT was to determine if I was on the right meds. I had 2 different doctors witness the tilt table test and both said they would rather do it themselves in person than have it done at a different facility. Maybe there are some little steps that make a difference in the results.

Brye

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I've had 3 proper TTT (45 min - 75min tilts) and also 3 shorter TTT that were part of the testing protocol at the autonomic unit I went to in London.

MY first TTT was diagnostic of POTS. The second one was done as I was still complaining of symptoms but my cardio said that I was fixed because I was on the right meds. The 2nd TTT was on meds and wearing compression - still had a HR of 150 and dropped my BP.

When i went to the unit in London the Prof wasn't willing to use someone else's TTT result and his protocol was different. He had me do the deep breathing, hand grip and hand in ice tests at the start of the TTT.

The shorter TTTs were 10 mins long and were done after fasting, after a horrid complan milkshake and after supine exercise (pedaling an exercise bicycle whilst lying on the floor!!!).

I am going to see my cardio next week and I am actually considering asking him to repeat my TTT as my symptoms are changing and I now have a high BP rather than a low one (gone up 40-60 mmHg over the last 3 months). octors often use the TTT results to guide what meds they prescribe for you.

Flop

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Flop,

The milkshake part is interesting to me - since my symptoms are exacerbated by eating carbohydrates, I actually considered ingesting carbs just prior to my first test, but decided against it. Do you know why they had you drink a shake? Was it laced with a drug?

I figure that Dr.s would use a test to help them decide what to do next... but my test was already negative. That's the problem - I don't feel like a 2nd test is justified unless it's substantially more sensitive than the first. I've kept track of my BP and HR myself - even during the worst symptoms they never appear out of the ordinary. I feel much worse after a hard run then I did on the tilt table and yet my stats stay in the normal range. I feel like these doctors are just machines - they execute the same algorythym for every patient no matter what. This guy I saw was listed on the dinet website with a positive review, and, he didn't even listen to all my symptoms - he cut me off after I mentioned dizzyness and a previous diagnosis of OI and ordered his tests.

And it's not like I'm anti-tests! I definitely want to know why I don't feel good. I believe that if I can pin down what's wrong, I'll be more likely to get the right treatment down the line - even if I have something that can't be treated effectively right now - I want to have a proper dx, so that when a treatment for whatever-it-is finally emerges, I will be able to get my hands on it.

-Green

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Hi

My first ttt was a waste of time.. they had never done it before.. And luckly abrode I got in contact whit a doc that whanted to do the tests over to be sure they had been done rigth (he also orded my journals , well my mother got them for me).. And during my second ttt whitin a very sort time i had a diagnose.. And he sayd what i then knew, the first one was done whery wrong..

best of luck

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hi i'm also scheduled for my second one at BOSTON MEDICAL. first time there, but it looks like my doc is looking for more information, such as why are the heart tests normal (echo) what is changing. has here pots gotten worse or is it under ander umbrella of DYSAUTONOMIA.

My first thoughts were nothing is wrong with me like all test have been in the past, but my doc had been picking me up off the floor like a rag doll all afternoom.

Her FELLOW, who was very sweet to me, giggled through a very long pre exam. i learned there was a lot of new info about me. when THE DR. handed me the ttt table test to have done i was thinking, now what do they not blieve me? but after landing in the hospital the next day a bell went off! it was a haha moment and i was glad i was being reavaulated.

Things are off and those who really listen when you speak, FOLLOW UP WITH THE RIGHT TESTS.

good luck to us all.

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Hi Green,

the milkshake was especially to test for low BP after eating. They had me fast from 10pm (but I could drink water as much as I wanted). In the morning I had a 10 min TTT whilst fasted. Then they put the table flat and had me drink the milkshake through a straw whilst lying flat. Then I had to lie still for 1 hour then they repeated the TTT for 10 mins again.

The fasting/meal test didn't actually show any difference in me. I suspect that by the time I had waited for 1 hour that the effect of the milkshake had worn off.

I also had a 24 hour BP monitor whilst I was on the ward. I had to check my BP before meals and every 10 mins during and after meals. That test showed a marked drop in my BP only 10 mins after eating.

Flop

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