targs66 Posted January 20, 2011 Report Share Posted January 20, 2011 I'm posting this because it might help some of those who (like me) were told they didn't have POTS. I'm American but live in England - the original tilt table test was done in Liverpool.I got the referral for the original TTT from a visiting GP who took note of my low BP (was 88/55 in the doc's office). The technicians had to ask a consultant whether or not to proceed with my TTT b/c when I was lying down my BP was 73/59. However, I was told that the results were "normal" because my BP and heartrate went up when I was tilted (it went as high as 110/98).I then had various examinations at Johns Hopkins last fall, including another TTT - only this time I was fasting, and they administered some kind of adrenaline during the second part of the test. During the first part of the test, I again felt wretched, with low BP - but it didn't indicate POTS. However, after the adrenaline was introduced via IV and I was then tilted, my heart rate and BP suddenly plummeted. I don't know whether I passed out; just remember moaning while I tried to stay conscious.Therefore, they concluded that I don't have POTS, but I do have neurally mediated hypotension. I've been prescribed midodrine and beta blockers. The midodrine was very helpful for a bit (although I've been going through a bad patch for the past few weeks). Apparently NMH is an abnormality in the regulation of BP- there's abnormal communication between the heart and brain (I think it's the same thing as neurocardiogenic syncope).It is just so helpful to have some kind of diagnosis. It was through that diagnosis that I found this forum. If it wasn't for the repeat TTT, I'd still be in the dark (and continue seeing a GP who thinks this is all psychosomatic).I'm sure there are many people here who know much much more about NMH or NCS; I just thought the story of my original missed diagnosis might help others who have been told they're normal.Hope this helps. Quote Link to comment Share on other sites More sharing options...
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