Tilt Table Test Results......

[Beccapooh]

Okay so here it is. That was the worse experience I've had in a long time.

I laid there for a while on this table that was too small for my fat hiney and tried desperately to find someplace to put my arms. There wasn't any place. Then I was brought up to 60 degrees (not the correct 70) and run through the gauntlet.

I was then told that I was fine, my heart was fine and I could go home. WHA?? I heard the cardio giving report and she said that my heart rate increased by only 29 BPM. Now correct me if I'm wrong, but if I had been put up to the correct angle, could I not have gotten the one little extra heart beat that I needed to be considered POTS? (My understanding is that at 30 BPM increase, it could be POTS, am I wrong there?)

Anyway, no arrythmia's today, no Tachy feelings, nothing. I woke up feeling pretty good. OF COURSE!! I seem to always have this happen to me. When I'm at death's door, can I get in to see someone, NO!!!

So, I'm still wearing the heart monitor that's recorded all of my weird heart stuff for the next two-three weeks. Of course, my wonderful and charming PCP conveniently forgot to forward all of that info over to the Cardio so she looked at me like I had five heads when I had the audasity to question her about all those results.

I'm wondering, should I try to do that terrible test again (PLEASE SAY NO, PLEASE SAY NO)? Is that it? Is it for sure that I don't have POTS is that test didn't show it??

I nearly passed out three times, but never actually got there........really, really close, but, no cigar.

I never even really got to speak to the Cardio. She showed up after I had already been laying there for quite a while (of course, as it should be) and then we did the test, she went around the corner, called and made her report and left the room. That was it. No talky, no questions, no nothing. Just "see ya"!!

What else can I do? I know in my soul that I have this. It just fits all my crazy symptoms too closely!!

AAAAAAHHHHHHHH, I'm just crying my eyes out, can I tell you?

Rebecca

[Jacquie802]

Hi,

Sorry about your experience...How about getting a second opinion from another cardio?? When I got a second opinion for another cardio he did his own TTT's, etc. I have noticed that differ. hospitals have differ things involved in their TTT's.

Goodluck!

Jacquie

[Sophia3]

First, I am sorry for your bad experience and can't believe they put you on such a narrow table? It's been 8 years since I had mine and I am only 5'3".

I think the upright position varies from place to place...65 or so. Dr. Streeten used to make pts stand in his office with a nurse when he could because "Pts dont' tilt, they STAND" and that's where the problems showed up...but not all think like the late Dr. Streeten.

Anyway, if you don't have CONSISTENT ROTTEN DAYS and had a good day, that doesn't make the TTT "Normal" and if you were one beat shy of 30..what about your other symptoms? If you were kept upright and felt hot, cold, sick or HR kept bouncing around..that should be on the test.

Sounded like a poorly run ttt. Did they have you lying QUIETLY in dimly lit room before the test,,did they have you lying quietly or were they speaking to yoU? Was the test done in quiet, dimly lit room? Did they make you stay quiet?

I was allowed to mumble if I felt illl during mine ( and I felt PLENTY ILL) but I could NOT speak, otherwise...and the 'attending doc took brief notes'. (He was an idiot by the way and said my test was "non conclusive??" I guess because I didn't faint. I also went home and sobbed because I felt so ill during my test, I knew something was wrong)

Later when I saw my real cardio doc for the report, he said it confirmed ANS dysfunction my endocrinoglost had suspected.

GET THE PRINT OUT of your TTT. It should record your HR and BP. Mine was a no brainer POTS. Some tests are open to inerpretation..but yes, folks can be ill and have "good days on TTT". Hopefully, your monitor will give some answers.

Do not despair as one docs report does NOT an answer make. I will never forget how the partner of my then cardio, had completely DIFFERENT reading on my TTT. Interpretation IS EVERYTHING.

Be kind to yourself and read up on PROPER tilting techniques. If they gave you a bum deal, you deserve a PROPER TEST. And if you had to hold your arms up while RESTING before the test..that doesn't sound Kosher to me.

Sorry you are angry but you have every right to be. Just remember, we have to be our own advocate...It isn't always easy, and it takes patience when we want answers NOW.

So just call and get a copy of the TTT. NOT the written summary of some doc, but the actual BP/HR readings...i think mine stuff was printed out every 3 or 4 minutes for 30 minutes or so...it was a long time.

Just remember, IF the test is DONE PROPERLY, it is worth it (Or it was to ME in the long run) to have a miserable time during the test because it gives answers. maybe next time, dehydrates yourself a bit to challenge the TTT? They gave me a coke after mine because I could not stand up and my HR dropped when they layed me flat..and I got sick all over again. I almost fainted when I went flat and only THEN did I hear the idiot doc attending say "That's interesting"...to my body's response.

[sally]

Hi Rebecca,

Sorry to hear about your tilt table results and treatment during the test. Sounds like you may need to have a second opinion although I can understand having had the test myself, why you would not want to do that.

Maybe you could make an additional call to the doc and discuss the results again stating that you were upset and didn't understand the results on that day of the test, that way you would get another chance to address some of the results better.

It sounds like you have something going on for sure with the increase in heart rate to 29 bpm and faint feeling while tilting. do you know your bp results during that time?

During mine, I did not faint either but my pressure dropped like a rock and kept dropping consistantly until they put me lying down flat. (60/palp then they reclined me down flat) I didn't faint but it was very hard to breathe and I couldn't talk, my heart did increase over the 30 bpm but I would think that 29 for you would be close enough...geez talk about a tightwire doctor!

did they give you the nitro? I did not have that either but I know some people are given that.

Also for me, they let me talk throughout the whole test and asked questions through the whole test as well which made no difference to my results.

I know in the beginning of the test, I was tensed up and kept squinching up my toes and I kept tightening up my calves because I am so used to doing that naturally to keep the pressure up without even realizing I'm doing it and as long as I was doing that my pressure wasn't as bad but as soon as I totally relaxed my whole body muscles including the toes/calves my pressure bottomed out pretty quickly.

So I don't know if maybe that is what you did as well but it could have affected the test.

You may want to speak about having another one done with a different physician or technician if possible.

Good luck and hope you feel better soon and I agree with Sophia, I would get a copy of your results for viewing.

[Guest dionna]

on my first tilt table test i had a blood pressure fall of 37 systolic and a 50 heart rate response when i fainted and they just diagnosed me with vasovagal syncope. i kept on disputing them and then a year later they finally diagnosed me with pots. the second ttt was after i had been diagnosed with pots and it was at nih for a study. i was tited at 70 degrees and my heart reate was only increased by 21 bpm but the test still showed that i was tachy and that the gradually dimishing systolic blood pressure was consistant with dysautonomic pattern. i didn't faint on this test but i did feel as if i came close several times. good luck to ou and although your test didn't show the magic 30 the docs should still be able to see something like with my second one. it was just 21. take care of yourself, okay.

dionna

[Beccapooh]

Morning to all!!! Hey, guys, thank you for all of your support. I'm really feeling (emotionally) bad now, can't lie.

I was reading (on this site) about the TTT and the fact that if the BP cuff is left on for the whole test and it's tightened the whole time that that will (could) give false negatives/positives depending on the person. Well, I'm quite large and they seemed to have a hard time getting a larger cuff so the ones that they used for me were constantly tight. To the point where both of my hands went numb and were actually hurting by the end of it all. Plus, I was allowed to talk while lying down and during the actual tilting part the Cardio kept on asking me questions. At any rate, my BP was solid as a rock (according to the doc). Even after my Nitro, which I was told (by the doc) "Okay, the response from even a normal person with this is to have your BP drop like a stone and for the heart rate to fo through the roof." Welp, my heart rate jumped to 170 and my BP........you guessed it, it didn't change. Now, isn't that weird in and of itself??

Sally, yes, I was quite tense during the whole thing. Even when I was supposed to be "relaxing" I couldn't because the table was so narrow, I was having to hold my arms up the whole time. My calves hurt so badly that I kept adjusting and fidgeting to try to relieve that painful feeling. No one told me not to either, so I thought that was fine. I was laying there talking to the technician the whole time, showing obvious signs of discomfort. I mean, I have SOMETHING going on where I'm sure weak and for goodness sake, I can't hold my arms up by myself for that long!!! My shoulders today are screaming at me!! I had just had shoulder surgery, too, so that shoulder is in really bad shape.

My normal BP, like at my PCP's office is like 90/54. I always get compliments for it being so low........geez, if they only new the havoc it creates. Anyway, when I went in yesterday and they took my vitals, 1) I had a fever (which I seem to get all the time for no real reason) and 2) my BP was high because I was so stressed about the IV and the test. My BP was 120/90!!! That's insanely high for me, but, because it falls within the "normal" range, nobody thought twice about it. God, sometimes, I wish that the word "normal" was removed from the English language. No one is "normal, really!!!

So, anyway, I just think that the whole thing was done poorly and that nobody seems to give a S*&T about that fact. It's a square peg, square hole kinda world. And I should just suffer in silence, beings I'm a triangle and all..........LOL.

Rebecca

[wareagle]

Rebecca,

I'm sorry you had such a rough time with the tilt...I agree with the others that you should get the actual test results and seek out an autonomic specialist. When I had my initial testing my results were simular to yours in that my HR went up 26-27 bpm not the full 30...I was told I had an "a-typical anxiety disorder" and should go on paxil. Fortunately, I had heard of another specialist in my area and decided to give it one more shot...he felt there was definatley autonomic involvement and had me do some more testing and low and behold I am a textbook POTS patient! The problem lies with the interpretation of these tests...some doctors just refuse to look at the whole patient. It is obvious that you have mulitple symptoms that could most definately reflect POTS..so please seek another opinion!

I also wanted to clarify...in order to be dx. with POTS your HR goes up by 30 bpm. and/or HR stays at or above 120 bpm....Your blood pressure can go up, down, or stay the same...the dx. is all about the HR not bloodpressure!!

I hope you find some help soon!