THIRD TILT TEST AND TERRIFIED!!!!!!!!!

[persephone]

Tomorrow I'm having my third tilt test and I'm so worried. What if it's negative? My second one was, too. Will the doctors just think I'm loopy and a 'faker' if I don't faint in front of them tomorrow?

I'm sure that when I get too stressed my pulse andBP get too high for me to faint on the table. The first time I did faint, so with one positive test and one negative, does this mean everything rides on tomorrow?

i'm trying to stay calm but I can't help being worried. I'm so afraid to put my faith in another doctor i ncase I just get let down again

Anyone got any advice? Am SO upset and frightened...anyone else got any ideas?

K x x

[Merrill]

I was told by a leading POTS researcher that 25% of NORMAL (not pots) people faint during the tilt table test. Fainting or NOT fainting has nothing to do with a "postive" or "negative" test result (tho it certainly affects one's perception of the test itself ... I'm being ironic here ... ).

I didn't faint. But my test result was considered positive because heart rate increased more than 30 bpm in the first 10 minutes. (And according to a new cardiologist I recently saw, testing postive for pots on the tilt doesn't even mean you have pots--now ain't that a kick in the pants? Apparently you can also test positive if you have inappropriate sinus tachycardia ... )

There are other indicators of dysautonomia--and other tests that can be run. If you don't test positive for pots on the tilt, do you expect the doctor will simply show you the door? If he does, then I hope you can find another specialist who will talk over your symptoms and help you figure out what else could be going on.

Remember too that they haven't figured out a cure for all this wacko stuff we deal with each day; it's a matter of doing what we can do to ease the symptoms. We need to strengthen our bodies and our spirits and try not to let the former rule the latter. Know what I mean?

I hope you get answers to your questions -- starting tomorrow, if not tonight! Good luck,

m

[MightyMouse]

My only thought is to make sure you're off of all medications, including over the counter and herbs for the test... and no caffeine of any type in the 24 hours before (cola, chocolate, tea, coffee, etc.). Any of the above items can bring your bp up enough for you to fail the test, when in fact, you may have a problem.

Nina

[MomtoGiuliana]

First of all, it sounds like you feel a lot is riding on this test. Do you have any data you can bring the doctor tomorrow on yourself that you have collected at home? Blood pressure or heart rate readings (lying, sitting, standing)? A diary of symptoms? Those can also help doctors to make a diagnosis, even if you are stable enough the day of a tilt table test to "pass" it.

However, I'm a bit confused by your post. POTS is diagnosed by a change in heart rate upon standing--not a change in bp low enough to make you pass out--although this can also happen to POTS patients. For example, I was diagnosed with POTS b/c my heart rate went from 80 bpm lying down to 160 bpm standing. My blood pressure during the test only went down a little, and certainly not enough to induce fainting. It was the change in heartrate that led to my diagnosis. Other related conditions are NMH and NCS, which do often result in fainting. You can have an overlap of all of these conditions or only one.

If this doctor isn't completely familiar with dysautonomia I hope you can find another who is--or you can provide him or her with information about POTS.

Take care and let us know how it goes.

Katherine

[Jersey Girl]

I wouldn't eat or drink that morning in case you do faint. My last tilt test was more definitive because of this. martha

[ramakentesh]

You must remember the test is just a test - POTS symptoms wax and wane, so you might pass one day and then be very ill the next.

There is an injection that makes your sympathetic nervous system go mad that i was given during my TTT and that brought out all the symptoms. I didnt faint , ut was positive and i was diagnosed primarily on symptoms alone.

[Guest Julia59]

I passed my last tilt table test---but I am still diagnosed with POTS. I also passed my first tilt table test-----and after that Dr. Grubb said I have POTS.

My symptoms alone were the factor. I refused the drug given to you during the test both times. The Doc and I both knew I would have failed the test with this. My BP did go down 30 points---but it took 15 minutes---and my HR did go up 30 pbm----but I did not pass out---I only got light headed when I was first tilted the second time. I was also on the meds---BB's when I had the test. I just didn't want to deal with what would happen off the meds. It was a personal decision that Dr. Grubb respected.

I am still diagnosed with POTS----however, there is some question as to weather it might be secondary to my chiari-----and cranial/cervical instability. My PCP thinks I have both conditions separately. If you pass the TTT---that doesn't mean you DON'T have POTS. A lot of people who DO fail the TTT---are likely to have POTS and NCS both.

Julie :0)

[MightyMouse]

so, how'd the test go? Nina