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Tilt Table Test- What To Do


friday7
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I just started with a new doctor a cardiologist who actually knows what POTS is. I've been to so many doctors that just thought it Orthostatic hypotension. Anyway I'm glad I found this person. But now she wants me to take a tilt table test. Not really to diagnose but to get an idea of what kind of POTS and symptoms I have so she cant test it better.

Okay But i do have a problem with that. One thing is I'm afraid.LOL the other is i don't faint easy. In fact I've never passed out except one time I did going into the ER..Wasn't really because of the POTS I was very low on electrolytes and eventually by the time i got to the hospital I halfway passed out. I was still a bit conscious. It wasn't a sudden thing.

So all of my experiences with fainting have been like , I'll feel sick and dizzy and like all of the life is draining out of my body. Sometimes my vision will get dim..that's usually a signal that I need to lie down fast. What happens is I usually lie down and I feel it pass over. I can feel a pressure go through my head and even a low rumbling.

So that's what I experience instead of fainting. I'm glad I'm not an easy fainter. But being like this isn't much better except i don' t have to worry about hitting my head.

The whole experience is horrible when it happens really bad. It's scary. I don't like the idea of going for a test that is designed to make me faint. And the thought that I might not faint but just experience these feelings of the life draining out of my slowly. And, on the other hand I'm afraid of fainting.It's never really happened to me before so I don't really know what that would be like.

Has anyone ever had a tilt table test without fainting? I heard that a positive test is when you faint.Or that they do the test until you faint .So the purpose is to make you faint...

Also I have heard of false positive and negative results. I'm thinking I don't want to go through all of that just to have someone say you're fine. Since i don't faint I'm afraid that will happen. Then Instead of getting a new doctor helping me I get someone taking away the diagnosis of POTS? After all these years I don't need that. I mean if it were true, great, but i know it's not.

I just don't need someone else putting it into my mind that I'm not really sick. It's just nerves or some junk like that. I don't need to go through that it must all be in your head thing. Iv'e been through too much crap to start going through that again.

Anyway I'm really upset about the whole thing. I want to go and take it because mayeb it will help her treat me, on the other hand ..well what I said above. I felt bad enough about the whole thing and then I read from several sources that it's got this known false positive /negative thing.

What reasons did your doctors give for giving you the TTT. Was it to diagnose? Do you feel it helped him or her treat you better? Has anyone ever gotten a false negative test?

I'm just really confused about what to do.

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I don't pass out easily and had two ttt which were both positive for POTS but during which I never passed out. I was symptomatic and that doesn't feel good but my thought on that is as follows...I was likely to have a presyncopal episode on those days anyway, why not just deal with it long enough for the docs to get the info they needed. I had to be up for 45 minutes both times and my heart rate doubled both times but it was worth it.

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I've had 6 TTT and haven't passed out on any of them, but still have gotten a lot of information from them. The 3 cardio ones were the worst because they lasted a lot longer- until I had the pre-syncopal symptoms. I met POTS criteria in the first 10 minutes but they kept the test going to see what else happened and that wasn't fun but it still gave them a lot of info. The 3 neuro TTT were relatively easy in that they only lasted 10 minutes and I was on my meds, but they still got some info from them that told them what they wanted to know.

I think we can all relate to your fears about having the TTT be another test that comes back "normal" and being back to the "it's all in your head" arena. Been there, done that! Good luck!!

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Thanks Katybug and Angelica. I was worried that it was a requirement to faint for a positive test result and so I would fail.

It's nice to hear form people that have had it done that it is not required.

And you're right if it does give the info to help me it will have been worth it..I'm still freaked out about it .LOL It's just the fear that I'll have to go through that feeling that the life is leaving my body.

But actually I don't even know if it'll get that bad .If it does I'll have to keep telling myself how this has happened before and it's always been okay, and I know that my heart is okay. I just got tested. So that's good anyway. I just have to remember to keep this self talk up..cause you know it's easier to say this now.LOL

I also have an appointment with the doctor this coming week so I'm going to talk to her about it more.

Thanks, Chaos. Wow six TTT's. Whew! I feel bad complaining about one. LOL

Yeah Most of the fear is what if I'm very symptomatic and the other fear is what if I'm not symptomatic enough.But if it might help me .I guess I'll have to do it. I do want to talk to her first though.I think that might help me feel better about tit.

Thanks everyone for posting your experiences.

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Before my TTT, I had never actually passed out, just came very close several times. My ttt was a pretty miserable experience and I'll never do it again, but it was worth it. I walked out of there with real, solid evidence of the symptoms I face everyday and soon I was put on a medication that helps, finally.

I was afraid it wouldn't show anything too. I didn't pass out right away, but my vitals got all crazy like they do and they doctor knew right away that the test was positive. So whether I passed out or not, it would have been positive.

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Hi there,

i had 2 TTTs. One positive for POTS, one negative several months later.

I don't faint, but I did during my 1st TTT. It could have been a combo of factors that contributed to that - I had starved for 24 h prior, I had a pretty nasty night right before - a stomach bug of sorts, I was dehydrated, I was experiencing withdrawal symptoms from stopping some meds, plus I was really scared about the test itself.

I won't hide from you that it's a pretty uncomfortable experience, but I guess the info the specialists are gathering during the test are 'worth' going through it.

If you think it might help, try contacting the facility where you will have the test and ask someone to tell you what to expect the day of the test. The more details you can get from them the better prepared you can be. The reason I'm saying this is because there are slight variations of the procedure followed during the test - I've learned about this by reading people's experiences here on dinet. Usually these variations depend on the facility where you have the test.

Here is how I thought about it: " if my symptoms were going to be really bad during the test- and they were - i was in the best place for that to happen (sort of speaking)"- I was in the hospital surrounded by technicians, nurses, drs who deal with people like us on a regular basis.

You'll be fine.

Best of luck with your test and let us know how it went.

Alex

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One more thing...make sure (if your doc or the facility didn't tell you) to bring a person with you to drive you home. Even if you don't faint, trying to drive after a severe presyncopal episode is not a good idea (as I'm sure you know), so having someone with you will allow you to leave and get home instead of having to wait around until it is safe for you to drive.

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