Upset And Scared

[gillian502]

Hi everyone,

I've had POTS and neurocardiac syncope for 3 years now, and my diagnosis was confirmed by the people at Johns Hopkins as well as the Mayo Clinic. I have had not one but TWO tilt table tests to confirm and re-confirm my diagnosis.

It's 3 years later and I'm not functioning enough to hold a job, but I can get around well enough with a beta blocker helping me as long as I limit my day to 2 to 3 hours and not too much exertion. I have recently switched my beta blocker from Atenolol to Toprol XL, and this week has been miserable for me because of it. The Toprol 25mgs isn't nearly enough medicene, and my tachycardia is back in full force (about 130 upon standing.) I phoned my cardiologist, whom I've been seeing for about a year, to ask if it was ok to increase my dose, which I obviously need to do and fast. He told the secretary to inform me that he would make no dosage adjustments for me until I came in and did the third tilt he had suggested at our last appointment--a suggestion I balked at then and refuse to do now.

I informed the secretary that I have done some reading on this and feel it is not at all necessary to have a third TTT, and in fact it would muddy the waters of an already established diagosis. She said the dr will be calling me back later today.

I'm so upset I'm in tears. My heart rate is high, my symptoms are at their peak since it's that special time of the month when things always feel worse (!) and this guy is basically withholding meds that I am desperate for just because he is so unfamiliar with POTS that he thinks this test needs to be repeated every couple years. I am not doing another TTT, and I am afraid he will refuse me my beta blockers based on my refusal. Can he really do that? Has anyone else ever been pressured into another TTT? Do you all have your TTTs repeated every couple years? I have never heard of this! Thanks for letting me get it all out.

Gillian

[Ernie]

Hi,

Here in Quebec you are lucky if you have one TTT for your initial diagnosis. Then you go for years without any other TTTs. I don't think it's necessary to have repeat TTT like that. There is a money issue involved.

[MomtoGiuliana]

I would think that once POTS has been established in a patient another TTT would not be terribly useful. It is not the most reliable diagnostic tool since symptoms can vary so from day to day anyway. Are you trying to avoid a TTT b/c it makes you feel so lousy during and after? How quickly can they get you in for one?

I wish I had some advice! so sorry

Katherine

[dawn]

Gillian,

I think I would find a different doctor. I have good luck with my internist and my neurologist always asks "do you need any prescriptions?"

I had 1 TTT, a second one 10 years later when my symptoms got worse. I did have another that same year at another clinic but it was my choice.to get another opinion. I wanted alot of documentation for social security disability. I refused to have the injection on that one.

They are a difficult experience but always remember you are in charge and can stop the test at anytime.

The last one I had at Mayo he only made me do it 10 minutes. He was very understanding.

Good luck

Dawn

[Babettegall]

So sorry to hear about all of this.

I've only had the one TTT which gave me the darn POTS dx. I'm not sure if another one will be necessary or not in the future. I hope not, as I felt so poorly after the first one that it took about 4 days before I felt psuedo "normal" again.

I'm not sure exactly what the doctor is hoping to find by ordering another TTT for you........ But, it's evident that he should explain to you WHY he deems this necessary, all the while giving you the much needed additional beta blocker until you can get in.

Why does this have to be so difficult of a process all the time? I'm so sick and tired of having to fight with the medical profession!

I wish you all the luck and hope you get feeling better (your tachy under control) soon!

HUGS!

[gillian502]

Thanks everyone. I spoke with my cardiologist, finally, and he accepted my answer this time (my answer was a firm "no thanks" of course!) I wanted to avoid the test for many reasons, the main reasons being that it is terribly uncomfortable for me (I lost conciousness both times I did the test in the past and took days to recover, though no injection was ever required, as I passed out on my own) and the fact that an inconclusive test result this time could muddy the waters of my diagnosis, therby making it harder to get disability. We increased my Toprol to 37.5 mg, so we'll see how that goes.

Gillian

[persephone]

I hate tilt tests- they are EVIL. I'm glad you don't have to have another one. I have had about 6 now and they always freak me out. However, I think sometimes Drs want to repeat them to see if you have developed any more orthostatic tolerance- to see if you're getting any better or not? It kind of makes sense... but I can see why you wouldn't want it to be done again!

[Darlene]

I was diagnosed with POTS based on my symptoms, the poor mans tilt table, and 24 hr halter monitor.