tilt table test...how important are they?

Discussion in 'Fibromyalgia Main Forum' started by mq, Oct 1, 2002.

  1. mq

    mq New Member

    I know my dr mentioned them a month or more ago, and we haven't discussed it much since. Would this be an important test and why?
    thanks
    mq
  2. mq

    mq New Member

    I know my dr mentioned them a month or more ago, and we haven't discussed it much since. Would this be an important test and why?
    thanks
    mq
  3. EllenComstock

    EllenComstock New Member

    Hi, I had this test done last year. For many years I suffered from heart palpitations that would come on without warning, plus would feel sick and like I was going to pass out. EMG's always came out normal.

    I finally found a heart specialist (I went when the episodes became so frequent I was afraid to leave the house) who thought I might have a problem with the electrical system of my heart. Anyway, it helped to confirm I had a problem with the electrical system. I then had to wear a heart monitor to determine exactly where in the heart I was having the problem.

    One year ago in September I finally had the heart surgery (they reached the heart through threading a laser through a vein in my thigh). They then burned the defective areas of my heart and one year later I have not had any more problems! I wish my FM and Endo could be rid of with surgery, but oh well.

    I don't know what your problems are, but as you can see, it really helped me.

    Ellen

  4. teach6

    teach6 New Member

    I have Neurally Mediated Hypotension, which can be definitively dx'd from a tilt table test. However I would not undergo one, even if my disability decisions depended on it.

    For people like me the side effects from undergoing the test can last for days, or longer and they are not pleasant. I know from my symptoms that I have NMH.

    My doc has documented it with my blood pressure readings which are taken standing and then lying down every time I see him. It's the difference in these two readings that shows I have it and I don't have to go to torture to find out!

    Barbara
  5. Dara

    Dara New Member

    but haven't really decided yet if I'm going to do it. Why does your doctor want you to have it? Mine is doing to see if Ihave ????????? (can't remember), but it's where when you stand up your blood pressure drops and you feel dizzy, also I think your heart rate goes up.

    So, Barbara, tell me how bad it was. I know they told me I would need someone to drive me because afterwards you are unable to drive.

    Dara
  6. teach6

    teach6 New Member

    I just read enough about them to decide there was no way I would put myself through that when I already know what the problem is. It sounds to me like you have it also, Dara. You can be dx'd without a tilt table test.

    My doc just checks my BP standing and lying down. Do the standing one when you've been up for a few minutes. Besides, the first time I saw him I was in such bad shape from this that I had to keep my knees pulled to my chest and my feet on a chair at all times. I was also short of breath from it.

    With treatment I have improved, but not to the point that I can stand or walk for more than a few minutes at a time. By the end of the day it is usually worse.

    Barbara
  7. TiredbutWired

    TiredbutWired New Member

    It was not fun and uncomfortable but I am so glad I had it done because all the doctors I see just blow me off when I mention it,but since I got a copy of it they take me more serious.It also helped to know what I had and to be able to read on it and make changes.The beta blocker they put me on has helped and I can stand in one spot for about 5 minutes now.I did not use to be able to stand up to brush my teeth.Tracey
  8. hilfgirl33

    hilfgirl33 New Member

    I think if your doctors are not taking you seriously, then you probably should have the tilt table test. My docs kept telling me it was my hormones or anxiety and I just knew something else was going on. When I had hte tilt table test, they knew within 1 minute that I had pots (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension). They kept me up for 22 minutes, which is when I fainted.

    But if you think you can get someone to take you seriously w/o undergoing the actual tilt table, then I wouldn't do it because the effects for me lasted months. You could have your doc do the poor man's tilt which is just having your bp and hr montiored by a doc while lying down and then standing for a significant period of time.

    The test isn't painful, just scary because if you have pots or NMH your heart is going to race or blood pressure drop significantly and you are going to feel really bad and you are strapped to a table. However I had a nurse in with me the whole time and a cardiologist in for most of the test and both were really compassionate.

    Good luck.

  9. Rene

    Rene New Member

    Do it!!! I did and it lasted 11 minutes. I was bedridden for 3 days after. All ou are doing is standing and your just strapped to the bed just in case you faint-which it could be scary but NMH is on Rare diseases.org on the NIH site so its rare but fainting is common for us.

    If you do the TTT AND YOU HAVE potS OR nmh the 1st good thing is it can be treated and some people go from being bedridden to back to work.

    Also if you have the conditions SS has on their web site that NMH is a marker for CFS. You would be able to get documentation that you have a disabiling disease to send to the LTD and no one can tell you its all in your head.
    RENE