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Tilt Table Test - How useful was it?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sparrow, Feb 5, 2013.

  1. Sparrow

    Sparrow Senior Member

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    I am quite sure that I have POTS issues. My doctor has already noted that my heart rate jumps up like mad when I stand up, and my own heart monitor confirms that very conclusively. It is consistent, and not at all subtle, and not in question. It takes all of two seconds or less to watch it happen.

    I'm quite severe, and am leery of putting myself through any kind of strenuous testing unless there is real solid information and benefit to be gained. Obviously extra info is always useful, but preserving what little functionality I have left is also important. Being upright for even a very short time is enough to crash me in my daily life.

    So... I've been leaning towards a trial of a few POTS medications without going through a full tilt table test. Did anyone get any real benefit from doing the full test aside from confirming that there was a problem? Was there a significant change in the way your doctors approached treatment due to having more information on what bp was doing, etc.? I often read of people here recommending tilt table testing to anyone who has orthostatic intolerance issues, but did people really find it that useful (aside from demonstrating disability in an objective way for insurance companies, disability benefits, etc.)? Would you have regretted not having it done? I would appreciate your insight.
    voner likes this.
  2. Kati

    Kati Patient in training

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    Tilt table testing is great for documentation of illness, especially for insurance companies. It also provided me with validation that something was wrong.

    It doesn't feel good to get it done and may give you acute and delayed symptoms especially with severe cases like yours.
    In your particular case, I agree with you that testing is not necessary, since it seems like you are a classical case of POTS. However a knowledgeable physician would be preferable in experimenting with drugs.

    As for me, no regrets.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Sparrow,

    I think this question really depends a lot on your doctor. If you have an autonomic expert who can design and analyze a really good TTT, then yes, it could well impact treatment. Mine did, in that my TTT showed many things other than a blanket diagnosis of Dysautonomia or POTS. I received medications that matched my test.

    But, most doctors may not be that good and thus there wouldn't be a lot of extra value. You might quiz your doc on what he would be looking for and how different test results would affect treatment.

    Also, my doc (who has POTS himself) was very clear that I should stop the test any time I felt really bad--and I did. He absolutely did not want his patients to pass out on the test as he said he could get plenty of data with pre-syncope. But still, it was a very hard test and did take a lot of recovery.

    That is my take!
    Sushi
    ahimsa likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    Well I think the main benefits are proof (if needed for some reason like disability) or current or future treatment. So if you already had a doctor willing to diagnose POTS and prescribe for it, then I don't see much benefit. Unless you need proof. Some people feel better personally when they have the diagnosis on paper, but as I said, I think some docs would diagnose without the TTT. I think future docs could be a problem, because some docs will be sticklers and not believe your POTS diagnosis without TTT, but most likely you could avoid those docs.

    (I had to get the TTT before I could get prescribed. I don't have classical POTS but it proved I had something wrong.)
    ahimsa likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    I got a lot of issues just cause doctors didnt tilt table test me.. this means I dont now have the "proof" of my heart rate and BP issues when I have to go to other doctors. The only doctor who saw my severe orthostatic hypertension on a poor mans standing test (it went up to 170 in one minute in his office... Ive seen it do the same at home at times) ... we'll he ended up having a stroke.. so Im back to not being believed again over it when I go and see so called dysautonomic experts as I dont have him to back up he saw it for himself... and of cause now that Im on meds and stuff for my POTS and that.. my issues are harder to see.. and over time I may be improving some too.. so IF I was tested now.. possibly it may only "sometimes" now show up... whereas it was very very severe originally and if tilt table tested I know it would of easily showed up so that I would of now had that all on "offical record".

    I fortunately do have a doctor currently treating my POTS even thou he hasnt tested me for himself or seen a test.. but I really wish I'd had a tilt table test as if i ever loose him.. well I may well be screwed with things (as he's the first doctor in the MANY MANY Ive seen who even knew about POTS.. others werent even willing to read info on it). He's not interested in getting me tilt table tested as he doesnt see a need and dont currently know where they do it in my state.

    There are many different things in which "Proof" of a condition may help a person.. and I myself have found that something just written into a doctors medical records for you.. just for some other doctors may not be enough "proof" (esp if that doctor isnt around anymore to talk to the other doctor) and can lead to a persons issues just being dismissed.
    ahimsa likes this.
  6. Sparrow

    Sparrow Senior Member

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    This is one of the things I'm concerned about. But I'm also frustrated by the amount of time and energy I've spent doing things for the sole purpose of trying to gather "proof". And even then most of the time, it seems to be dismissed by anyone but the doctor who ordered the testing. And I've already been through a bunch of tests where I've ended up making myself much worse and for no real value.

    All of the concerns you've expressed here have been running through my own head, though. I just don't know...
  7. MishMash

    MishMash *****

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    I was very positive on the TTT in 1998. I guess I had a strong "POTS" reaction. I had it done at Johns Hopkins.

    I can't take any of the usual OI/POTS meds, they don't agree with me. Florinef was like taking dexedrine. Drinking water, eating salt doesn't help. It's an over-simplistic diagnosis anyway.

    Unless you need it for insurance purposes, don't go through the hassle and expense of getting a TTT. Use your own judgement. Do you feel faint when standing in line? Or dizzy? And there's nothing they can do for you anyway. If you feel it might help, take extra salt.

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