BJD Posted January 28, 2014 Report Share Posted January 28, 2014 I saw a non-POTS Dr. a while back for the unusal symptoms I've had for the last 15 or so years (exercise intolerance, brain fog among others. He did a laying/sitting/standing BP test that seemed to indicate POTS and he recommended a tilt table test. The ttt came back negative so I dismissed POTS as possible cause. But the more time that passes, the more my symptoms seem to indicate some form of POTS/Dysautonomia. Are there any other tests that could possibly diagnose these conditions? Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Alison Posted January 28, 2014 Report Share Posted January 28, 2014 Did the doctor just measure you BP, or did he measure the heart rate too? Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted January 28, 2014 Report Share Posted January 28, 2014 POTS symptoms often vary so much from day to day, that it is possible to have a negative TTT and still have POTS. Maybe you could try doing a Poor Man's Tilt Test at home and see what results you get? Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 28, 2014 Report Share Posted January 28, 2014 I had a TTT with a 85bpm increase, and one with a 32bpm increase. I have some mornings where I would not be or barely diagnosable, though infrequent. Then some mornings where the change would be 3x what would be diagnosable. Usually in between. Once it went from 75 - 220. A 145 BPM increase, and fortunately this one was documented, because at the time I was having a hard time getting anyone to take me seriously. What was the result of your test? I have had mine misinterpreted twice. A lot of doctors do not understand this adequately. What are your other symptoms? Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted January 28, 2014 Report Share Posted January 28, 2014 I would see if you could get another TTT, honestly. My first tilt was supposedly negative. But my POTS dr ordered a new one and it was very much positive. It's like berfore the morning said, sometimes they aren't positive at first. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 28, 2014 Report Share Posted January 28, 2014 I passed my first ttt. Failed my 2nd within 5 min. Quote Link to comment Share on other sites More sharing options...
BJD Posted January 28, 2014 Author Report Share Posted January 28, 2014 Thanks for the replies!I have a lot of different symptoms, but mainly brain fog which becomes severe after moderate exercise and can last as long as 3 days, making it extremely difficult to function. I've noticed that hydration and cutting out dairy helps a lot, so that's why I'm thinking it's in this family of conditions.I was symptomatic during my initial visit to the doctor, but I was feeling pretty good when I took the TTT. Sorry, I don't have the results here to tell you what they were, but they did measure my heart rate. I'm open to taking another, but I still haven't paid of the first one yet. These things are expensive!Are there one or two doctors in the US who are considered the best for these things? I'm more than willing to travel. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted January 28, 2014 Report Share Posted January 28, 2014 My understanding is that Dr. Grubb is one of the best, Located in Toledo, Ohio. I went to Ohio for my testing, but I went to the Cleveland Clinic, instead of Dr. Grubb. I believe I have seen others post about him on the forums. Quote Link to comment Share on other sites More sharing options...
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