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Ttt, How Long Is Long Enough?


Victoria
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Are you talking about doing one at home or going in to have one done? At Mayo, I laid there for about 10 minutes relaxing, and then they increased my incline every minute for 10 minutes. I responded pretty severely, but didn't pass out because they raised me so slowly. At home, I lie down for about 4-5 minutes, and then stand up and take my BP. Sometimes I take it every minute for 5 minutes standing up.

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At Cleveland Clinic they started me at supine for 30 minutes because they were getting baseline catecholamine levels. Then after that blood was taken I was raised to 30 degrees for 3 minutes, then 45 for 3 minutes, then 70 for 45 minutes. If you don't faint (I never have) then you will go for the entire duration the hospital deems appropriate. I met POTS criteria within the first minute of the 70 degree tilt, but they kept me to there to see what would happen with BP and heart rate. It was not fun whatsoever. lol At the 10 minute mark, they took my catecholamines too. I definitely recommend having those checked if you are going through all of this.

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I'm replying collectively again. What I'm trying to do is figure out just what tests Mayo did and didn't do while I was there. Looks like I had a "quickie" Autonomic Reflex Screen? Or is this considered a full TTT? I was supine and at a 70 degree tilt for 5 minutes. Orthostatic hypotension was not detected. Beat-to-beat blood pressure and Valsalva maneuver showed a reduced late phase II. They didn't draw catecholamines during the autonomic reflex screen.

Outside of the autonomic screen, I already knew that my norepinephrine and dopamine are high sometimes. QSART responses were reduced at the foot site. I have postganglionic sudomotor and cardiovagal/cardiovascal adrenergic impairment and demyelinating & axonal neuropathy.

I'm not intelligent enough to decipher what tests Mayo did or what the results mean.

Thanks all.

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My guess is that you did NOT have a full-blown TTT. At Johns Hopkins, you lie down for 10 mins, then almost to 90 degrees for 45. IF nothing is shown in the first 45 mins, a med is injected into your IV and another full 45 mins. begins. Once they catch a very high HR or a big drop in BP, you are returned to the supine position and the testing ends.

Out of curiosity, Victoria- WHICH Mayo did you go to? Kind of an odd collection of minimal screenings and very detailed testing...

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I think the minimum is 10 minutes, but I have read for optimal sensitivity and specificity it should be 45 minutes and when looking for vasovagal syncope (in addition to POTS) it should be 45 minutes. Maybe your symptoms presented themselves earlier in the test and the Dr's felt like they gathered enough data to diagnose you?

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My guess is that you did NOT have a full-blown TTT. At Johns Hopkins, you lie down for 10 mins, then almost to 90 degrees for 45. IF nothing is shown in the first 45 mins, a med is injected into your IV and another full 45 mins. begins. Once they catch a very high HR or a big drop in BP, you are returned to the supine position and the testing ends.

Out of curiosity, Victoria- WHICH Mayo did you go to? Kind of an odd collection of minimal screenings and very detailed testing...

Julie, I went to Mayo, Rochester. They were in search of autoimmune disease and I spent 8 months there. The general neurologist I saw at the very end of my stay did not believe I was experiencing the symptoms I reported and he was quite rude to me. His remark was, "your primary internist referred you to almost every specialty clinic here, so I'm going to refer you to the autonomic lab and get you out of here." He was very rude and condescending.

I didn't know how long a TTT should last, or that the test is typically continued until they catch a high HR or BP drop. Being tilted for 5 minutes obviously didn't reproduce OI.

An endo in CA later tested my BP and HR without a TTT — supine and standing for 1/2 hour (that was agonizing). Results were abnormal, but he didn't know what to do with me, plus the lab lost my blood. Oh, well. I'm back to the drawing board but I'm hopeful.

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The two TTT I had ordered by cardiologists were both 45 minutes (or until I crashed). The two TTT I had ordered by neurologists (Mayo and CC) were both 10 minutes.

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How did you manage four ttt?! I will never go through one again. Lol thank gosh I had no clue what it was before hand or I might have chickened out.

Is it worse with OI? I know some people have pots without it. I.was ready to rip the straps off after one minute. Thankfully I only lasted 8 mins but they were the longest 8 mins of my life!

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The two TTT I had ordered by cardiologists were both 45 minutes (or until I crashed). The two TTT I had ordered by neurologists (Mayo and CC) were both 10 minutes.

Chaos, were the 10 minute TT tests long enough to make a firm diagnosis? 5 minutes wasn't long enough for me to experience a big crash. I also see you have Reactive Hypoglycemia, GERD, EDS and Idiopathic Autonomic Neuropathy. Make sure someone is treating your GERD adequately. Mine began in my mid 20s, the instant I developed autonomic dysfunction and it was relentless. I later developed Barrett's Esophagus (esophageal pre-cancer) from not being treated for the GERD. I also have what my endo refers to as Glucose Intolerance with a high A1C. Take good care of yourself.

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When I had mine at the st paul heart clinic, they made me stand for 20 without anything and then 20 with stuff in my IV to get my heart up.

Then at mayo, they laughed and said, "we don't do that, we do enough to see the effects and you can stop when you want." They're stopping point was ten minutes, but I was in a lot of pain around 5 so they let me stop.

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How did you manage four ttt?! I will never go through one again. Lol thank gosh I had no clue what it was before hand or I might have chickened out.

Is it worse with OI? I know some people have pots without it. I.was ready to rip the straps off after one minute. Thankfully I only lasted 8 mins but they were the longest 8 mins of my life!

It was miserable! As were the many weeks that followed them. :rolleyes: Would prefer never to do one again, but I said that after the first one too and see where it got me. LOL

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The two TTT I had ordered by cardiologists were both 45 minutes (or until I crashed). The two TTT I had ordered by neurologists (Mayo and CC) were both 10 minutes.

Chaos, were the 10 minute TT tests long enough to make a firm diagnosis? 5 minutes wasn't long enough for me to experience a big crash. I also see you have Reactive Hypoglycemia, GERD, EDS and Idiopathic Autonomic Neuropathy. Make sure someone is treating your GERD adequately. Mine began in my mid 20s, the instant I developed autonomic dysfunction and it was relentless. I later developed Barrett's Esophagus (esophageal pre-cancer) from not being treated for the GERD. I also have what my endo refers to as Glucose Intolerance with a high A1C. Take good care of yourself.

First one showed POTS in 10 minutes but took about 35 minutes for the big crash with BP drop. After that one, my body learned to just give it up quickly and get it over with. LOL so I think the longest I made it after that was 17 minutes. One of the neuro TTT (10 min. version) showed POTS and then a crash at 8 minutes, but the other one (when I was on all my meds) didn't show anything. Ironically, later that same day they did what was functionally a poorman's TTT (doing a catecholamine test) and I crashed at 5 minutes on that one. So it really seems to vary even in the same day what my results will be at any given time.

Luckily, I have a GREAT GI doc here locally. Sorry you've had such a rough time with GI stuff. My A1C is fine. Just have CBG drops into the 30s at times.

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When I had mine at the st paul heart clinic, they made me stand for 20 without anything and then 20 with stuff in my IV to get my heart up.

Then at mayo, they laughed and said, "we don't do that, we do enough to see the effects and you can stop when you want." They're stopping point was ten minutes, but I was in a lot of pain around 5 so they let me stop.

Did you go to St. Paul, MN? Mayo is sometimes missing a diagnosis by stopping the test if we don't meet their diagnostic criteria within 5 minutes. We aren't all cut from the same cloth and it can take longer than 5-10 minutes to see the BP and HR changes. Some of my TTT was awful as well (physically painful), and I absolutely dread doing it for a longer period of time, but I must so I can put finality to my diagnostic dilemma.

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Yes, I got my initial diagnosis in St P, MN. The mayo one was just to confirm that diagnosis. I think I freaked them out because I always cry and get confused and people think I'm having a stroke or something... then when they put me down I come to my senses and see that they are staring at me in fear, ready to call an emergency team...

and I'm like, well, I told you so...

But 5 minutes was definitely enough to confirm my diagnosis... it only took like 3 for me.

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I think I freaked them out because I always cry and get confused and people think I'm having a stroke or something...

I'm positive you freaked them out, lol! Family/friends used to take me to the ER and I'd be in pain, very emotional, crying and confused. I get exactly what you're saying! By the time ED staff got to me my vitals would be nearly normal to normal from lying down in the car and at the ER. I don't do ERs anymore, I've since learned to self treat at home.

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