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Tests Other Than Tilt That Can Diagnose?


ckteach
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Hi-

You all seem so knowledgeable! I had the TTT three years ago after fainting in my home and I was fine standing during the test. They injected me and then very quickly my heart was pounding out of my chest and I started to faint. They stopped it by raising my legs and laying me down. I went on like that for 3 years with imbalance and dizziness that came and went. I haven't fainted since.

Now I have soooo many of the symptoms you all do. Especially racing heart. palpitations and dizziness, oh, and brain fog! I was told recently by a cardio guy I probably have orthostatic intolerance and my neuro this past week layed me down anbd stood me up and said that my rates didn't change at all although I only stood for 30 seconds at the time.

I would really like to get a handle on what exactly I have and would like to know if there are other tests that can help to diagnose an autonomic disorder? I am going back to the cardio this week (he does specialize in POTS) and I would like to know what to suggest.

Thanks!

Cindy

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Guest tearose

Hello and welcome aboard!

You too will know the terms, jargon and language very soon!

I think it comes to those who continue to search for answers and/or those who are trying to understand just what we can do to improve the quality of our life.

Anyway, lots of the tests I have done were to "rule out" things...EMG, EEG, EKG. Mri's...

For me, he MOST diagnostically helpful besides the ttt was the Theremoregulatory Sweat Test. This is the one where they put you in a Extremely Hot Green House after dusting you with brown powder, they turn up the heat and where you sweat, you turn purple. It was very important for diagnosing in me the small nerve fiber deficits in my legs and abdomen.

I hate to think about this test. They did this 5 years ago at Mayo and I'm set to do a repeat in a few months...I shake just recalling the hottness, the burning...the breathless heat.... B)

I guess it will help to see what if anything has changed.

best regards, tearose

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Hi Cindy! I'm sorry you're feeling icky. IT is possible to have false negatives with tilt tests, but often times doctors will conclude things all too quickly.

Did you know that some people don't get rate changes for the first ten minutes or even half hour of standing? Since you are not fainting, it might suggest that your pulse or bp change more gradually than abruptly. I wonder if just doing the poor-man's tilt (i.e- just standing up!) in front of a Doctor for say half an hour or fifteen minutes might show the rate changes?

Have you noticed that you get symptoms after doing certain things? Maybe, climbing stairs? Or walking for a very long period of time?

Maybe you coul have an exercise tolerance test, since one of the symptoms for some folks can include exercise intolerance.

Good luck, and let us know how you get on.

:-)

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Hi Cindy! I'm sorry you're feeling icky. IT is possible to have false negatives with tilt tests, but often times doctors will conclude things all too quickly.

Did you know that some people don't get rate changes for the first ten minutes or even half hour of standing? Since you are not fainting, it might suggest that your pulse or bp change more gradually than abruptly. I wonder if just doing the poor-man's tilt (i.e- just standing up!) in front of a Doctor for say half an hour or fifteen minutes might show the rate changes?

Have you noticed that you get symptoms after doing certain things? Maybe, climbing stairs? Or walking for a very long period of time?

Maybe you coul have an exercise tolerance test, since one of the symptoms for some folks can include exercise intolerance.

Good luck, and let us know how you get on.

:-)

Hey thanks for the thoughts. It's so great to know there is advice out there from all of you.

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Cindy,

I'm glad you have joined us here on the DINET forum. :-) I hope that you can find some of the answers, information, and support you need.

When you go back to the cardiologist, I would definitely ask him to check your pulse and blood pressure after you have been lying down for 10 or 15 minutes. Then stand up (but don't walk around) and have him check your pulse and blood pressure again after 10 or 15 minutes. This will give you a clearer picture than you had at the neurologist's office when he checked it after only 30 seconds. Like Persephone said, many people don't have an immediate change in pulse. But a pulse that goes up 30bpm after 10 minutes is still POTS.

Hope your visit goes well and that the cardiologist can help you. Let us know how it goes.

Rachel

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Another suggestion is to revisit the cardiologist and have him do the poor man's tilt table test. My docs don't like to do this because it takes too much "unbillable" time. Also, you might suggest that he treat you as if you had POTS and start you on some of the basic meds used to treat POTS - beta blockers; midodrine, etc.

Only start one at a time so that you know what is helping. Also, try salt loading.

Don't give up...you need to challenge your docs to think outside the box!

Lois

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