gillian502 Posted August 24, 2006 Report Share Posted August 24, 2006 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 Quote Link to comment Share on other sites More sharing options...
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