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First Tilt Table At Cleveland


mkoven

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So a week from tomorrow I have my appointment at Cleveland. I've never had a ttt, and was told that I will have one that afternoon. I'm nervous, as it sounds pretty miserable.

I've confirmed twice with the office-- they want me to continue all my meds, including florinef and midodrine. They said this was to evaluate not my baseline, but how well my meds work for me. Anyone else do their ttt ON meds? I'm afraid of having a false negative and having no one believe me! On the other hand, it's not as if I'm controlled on my current meds. They help some, but I still feel pretty sick. And I'm worse in the afternoon, when they'll do it. They told me that I'll be tilted to ten degrees for ten minutes, 40 degrees for ten, and seventy degrees for up to 45. And no meds to induce syncope. Bp and HR will be measured every minute.

Other testing will be determined based on the tilt results.

I'm also wondering about the reproducibility of ttt results. There's so much variation to how I feel. Some days I look like I have ncs, some days I look more potsy. I'll be right before my period, which usually guarantees a flare, and may make me seem worse than normal. I just wouldn't want someone to conclude that my ttt reflects how I respond all the time.

I'm also nervous because I've heard that edsers have a higher risk of coding during the test. and that my joints will hurt and I won't be able to squirm. The whole thing sounds terrifying. I don't know if they'll wait for me to pass out, or let me stop once I fit whatever criteria. I'd feel a lot better knowing they'll stop whenever my numbers fit, and not torture me. I"ve never actually fainted, and would prefer not to have my first.

the main thing that reassures me is that they do this test all the time and that this is a top center.

I hope good things come out of this--more fine-tuned diagnosis and better med regimen.

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I understand that ultimately you just want to get better and don't want a false TTT result to stop that. I would try not to worry. Given your recent posts, it would seem likely that your symptoms will be triggered, and long before the hour is up. I have had the test done when I felt fine beforehand, but it still produced results because the tilting is enough to make me ill. You don't have to faint for them to get information (just be symptomatic) and, in fact, some places prefer to stop before you faint. And if you felt ill but it wasn't down to BP or HR, then something else needs fixing.

I was apprehensive before my first TTT, but was pleasantly surprised that it was OK. It's a bit of an odd feeling being suspended at that angle. I noticed my calves felt really weird, maybe because I'm used to being able to flex the muscles to keep the circulation going, but that just isn't possible during the test. But despite it sounding like an instrument of torture, I didn't feel too restricted.

I was also concerned about feeling really awful for a long time on the TTT, but actually once I started to feel ill, it didn't take long for it to progress into a faint. This is quite unusual for me, but I suppose in the TTT you can't do the normal things that would make you feel better and stop a faint.

The other piece of good news is that if you do faint, they can tip the table back very quickly so the recovery was quicker than I have ever experienced and an hour or so later, I was fine.

Regarding the risk of coding, I think that can happen if someone faints and then is deliberately kept upright (not in TTT environment, rather when someone erroneously thinks this is a good idea). I am sure the staff at Cleveland will tip the table back down as soon as you get close to fainting, so this shouldn't be a problem.

I know others haven't had such good experiences with TTT, but hopefully you will also be pleasantly surprised.

Good luck for next Weds

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I have had 4 TTT, 3 on meds. The meds did not prevent an event, although we were hoping it would. I was a frequent fainter and lost my license to drive

for 4 years which is why we were hoping I'd stay conscience so he could clear me to drive. Also it comes on fast for me and I never felt ill more then a couple seconds.

good luck

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Hi,

I had many TTTs. Some without meds, some with some meds and some with all my meds. I have fainted on all of them. My meds don't prevent me from fainting and I still have all my symptoms on them.

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My TTT didnt even last 1 Minute. I was on Beta Blockers. My HR doubled up in a few seconds and i felt very bad and asked them to stop. The doctors stoped the test and said to me that this is all they needed to see! I have no idea what would have happened to me if they would have continued the TTT. Before the tilted me up they told me that if i would feel realy bad, they would stop the test straight away.

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My TTT didnt even last 1 Minute. I was on Beta Blockers. My HR doubled up in a few seconds and i felt very bad and asked them to stop. The doctors stoped the test and said to me that this is all they needed to see! I have no idea what would have happened to me if they would have continued the TTT. Before the tilted me up they told me that if i would feel realy bad, they would stop the test straight away.

I hated the TTT, it is a weird feeling being immobilized. I didn't make it to 15 minutes before I passed out and the next thing I know I am laying flat and they had cool wet cloths on my face trying to get me to wake up.

You are being closely observed and monitored, don't be afraid they will not let anything happen to you.

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I've only had one, and I had it at quickly after the serious onset of symptoms. Therefore, I was very sick when I had it, so whether or not it made me feel any worse was difficult to tell. It lasted five minutes or so, and during that time, I lost a measurable blood pressure and my heart rate was crashing. The attendant wryly said "Well, I've seen enough" and put me down. I didn't lose consciousness, but I was spacier than ever. This actually worsened for the rest of the day, but again, its hard to say it made me feel much worse than I was normally feeling at the time.

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I've had several TTT done, only one on no meds at all (the one which got me the POTS diagnosis).

I have never fainted during a TTT (but I would often faint in real life) but have felt yucky and close to fainting.

I'm normally tired after the test (but then I would be tired after standing for that long in real life too).

If they are trying to assess you on meds to see how well the meds are working it sounds like they are already convinced of your diagnosis and are doing the tilt to help treat you not to confirm a diagnosis. The best thing to do is just not worry about what the test will show and just do your best to do as the techs ask you and tell them what you are feeling as the test goes on.

EDS - I have EDS although we didn't know when I had my first 2 tilts. I usually get a bit of back-ache after the TTT but it settles with painkillers. I have been able to squirm a bit on my tests so can usually relax one leg for a moment then the other. In one TTT I was wearing my shoes and they were uncomfortable so I asked the tech to take them off for me - she seemed a bit suprised but the doctor said it was okay so she pulled them off!

Coding - by this I think you mean cardiac arrest (we don't use the term in the UK)? I haven't heard of any link between EDS and cardiac arrest. Some people being investigated for syncope do have their hearts temporarily stop on the TTT but for them that is what the test is trying to show (they need a pacemaker) when the table is put flat their heart starts up again. I don't know of any link between dysautonomia and a true cardiac arrest. The only danger of fainting is if someone tries to hold you upright - that way the brain doesn't get the oxygen it needs and you can have a seizure, but being put flat will stop the seizure. This shouldn't happen on a tilt as the techs are watching everything on the screen and would put you flat immediately if you did faint. When I had my tilts and came close to fainting I heard the doctor and the tech get up from their chairs and stand right by the table ready to help if I did faint.

Basically - don't worry, the techs have done this hundreds of times and will know exactly what to do. Let us know how you get on.

Flop

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I had my TTT at Cleveland. They will have you hooked up to a heart monitor at all times w/BP. You tell them if you feel yucky. You can also tell them to stop. What is great is that they told me my results right afterward (pots) and sent me the reports. They told me that they can calculate results based on how much medicine you are on. So pay attention to the time when you take medicine. I personally avoid doing anything other than medicine prior to testing that helps with symptoms, such as support stockings. I would not wear support stockings for the entire day prior to the testing. I also would not take any of the herbs/vitamins that help me for a couple of days before the test.

Caprice

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I had my TTT at the Cleveland Clinic, and while it was the most miserable hour of my life the staff was wonderful. I too, have had real-life syncopes but failed to faint on the tilt. Just plain stubborn I guess. However my results were a clear case of pots, so I got my diagnoses that day. The staff was very kind and brought me gatorade, saltines, and cool cloths while I recovered. I had to lay still for about an hour sipping on gatorade before I could move, but it was no worse than my symptoms on an average day. They also made it clear if the test was unbearable they would stop it immediately. So don't worry, you're in good hands!

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Hi ;)

Just wanted to pop in to send you my best thoughts for the TTT

Do not worry. They know that you are ON meds and that your reaction is very likely going to be different than if you were without meds.

Try to be calm. It will be over sooner than you expect.

After the test, if you feel dizzy, try to rest and drink plenty of fluids.

Share your TTT experience with us when done.

I am looking forward to knowing from you,

Take care,

Tessa

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Good luck with your test-- take it easy afterward and make sure that you have someone to drive you home b/c you may feel pretty yucky afterward. Like others have said, fluid and rest post test.

Nina

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Well, I just had my first tilt. I expected to have bp issues, as this is what I normally experience, rather than heart rate issues. Instead, I showed signs of pots, not ncs. I asked whether there is always within-person consistency--i.e. on another day could it have been more hypotensive, and the answer was unclear. At any rate, I have tilt-table validation that I have an autonomic disorder. I started in the 60s and went over 100-- so not off the charts, but to quote the doctor, " a robust effect." It stayed up throughout, once I was tilted up. I'm tired now, but not as much of a wreck as I feared.

It wasn't as awful as I feared, given other stories I've read. Some twitching, some vision coming in and out, some chest pain, and shortness of breath, a little drooling, head and chest pounding, but not much worse than I usually experience. It was weird not to feel presyncopal-- not typical for me. Maybe the adrenaline of the whole experience kept my bp more stable???

More autonomic testing tomorrow. Not sure I know all that's in store.

In terms of whether I'm having prinzmetal, that apparently is another department. The eps and regular cardios are not the same department. We're trying to get another appointment set up there, which will be hard, and then we have to hope that eps and regular cardios will coordinate, so treatment for one doesn't cancel out the other, if indeed I am having spasms.

The doctor was pleasant, but had an odd intake strategy, as she was typing as I was talking, and wanted me not to talk too fast, so she wouldn't get behind. So I felt a little like I was talking to a computer screen. I hope that now that she has the history, it will be more interactive.

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