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Inconclusive Ttt ?


kalamazoo
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Hi Kalamazoo, I never had the tilt table but I did have ans testing which my hr and bp didn't go up enough upon standing to qualify for pots. however, I was only laying down for 25 minutes or so and wasn't very symptomatic that day. My neuro still dx me hyperpots since I had a 2 wk heart halter and 24 hr eeg with heart halter showing what my bp and hr were doing. I also kept a 2 week journal for my doctor to review notating my bp and hr in the am before getting out of bed, and then upon standing and throughout the day sitting/laying/standing.

I don't believe the TTTest is the only way to diagnose pots. I believe I have even read this on the internet before.....I was going to have it done this summer but the out of pocket was ridiculous and when I called the hospital to schedule, they said to dx me I would have to faint. They weren't going to inject the stuff like the mayo clinic and other ans testing facilities do, and as I have never actually fainted, (I only fall down) I said screw it to that test.

I used to live in Kalamazoo when I was younger:) Now I am stuck in hot dry PHX!

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I will definitely tell my doctor this, he's new to POTs so I sure hope he can't help me as I'm going crazy. Hopefully he will put me on a holter for a few days. And I'm sorry your in phoenix, I used to live in Tucson and the heat made me miserable. I'm in alaska now and the cold is almost as bad!

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I'd have a doctor who specializes in POTS do the test or read our results. I don't believe your HR has to stay high for a full 10 minutes, the fact that it jumped that high (anymore more than 30 bpm) should be enough. Good luck, it can be VERY frustrating finding a diagnosis especially if the doctor doesn't understand the disorder. Good luck!!

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I'm only going to confirm what others have already said - I've never read about a time frame for the increase in HR. 10 min sounds a bit exaggerated to me. When i had my TTT I fainted after 6 min, but the increase in HR before I fainted was large enough (40+ bpm) to warrant a POTS diagnosis.

I'd ask for a second opinion, Dr Grubb sounds like an excellent option. Good luck!

Alex

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I sorta wonder if all the people on medications -- pre tilt table -- such as clonidine and beta blockers -- ever really get a fair shake on the TTT as well - the results come back fairly normal - and if something is too slow or too fast then it's equated to a possible body response to one of your meds.... I had the holter while on one med - ran tachy as a baseline - was put on B-blockers - then put on clonidine - and wha- la - TTT is not showing anything much at all....when I had two about a year later.

Each result was what I would deem 'inconclusive' -- So in noting that - I would hope that people would be able to get the test done -- before you are approaching advanced age - like under age 40 for sure ... That way there's less liklihood perhaps that essential hypertension would have begun to sneak up on you ... another way to cloud the lens... And less likelihood too that you are already on a bunch of meds that it seems dysautonomia docs will not discontinue in order to try for a more accurate test... They don't want to be responsible for you stroking out on them...

As mentioned though there's more than one way to skin a cat as they say - and you can have your laying and standing catecholamines checked - and other labs as well I guess - in addition providing an accurate picture of you on a 'bad' day ...

I'm sorry this physician got so stuck on the numbers at a certain time period - sounds like a very flimsy excuse to not be the one to make a definitive diagnosis.... Dr. Grubb has the longest waiting list ever - after a year I never heard back and just gave up on the whole idea - the staff must have allowed my referral to get lost through the cracks - they told me my referral wasn't even good enough - that they needed my entire EDS chart from one doctor - which I told that office to send him - maybe they never did send it afterall....

But anyway - I guess if you know what you have - you can move ahead in any direction you want in full confidence - now how to get a doctor to understand you would like a true diagnosis in order to begin an 'official' path to wellness is the trick - Till then I suppose you could just work on getting as healthy as possible - lots of fluids, compression hose, walking and leg exercises as tolerated...

Blessings on your path - I know it can be so frustrating - but you will get there in time - someone will take you under their wing and help you get well after a true diagnosis - may it be sooner rather than later!

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