Ttt Question

[AmberK]

Can anyone tell me why the TTT is 45 minutes long, when the diagnosis has to be made from the first 10 minutes please? I'm a bit confused.

[bebe127]

AmberK,

I think they just schedule a 45 min. block. Everyone reacts differently to the test. Some, like me get results withing 3 minutes of being put upright, but then the dr. may have to replicate the test. In my case, he had to replicate it 2 more times. During my first upright, the doctor actually left the room stating that most people don't respond for at least 20 minutes. Little did he know that I would respond in the first 3! Some people take longer, just depends on the person.

Good luck!

[Mydoggielovesme2]

Everyone reacts differently to the test. Some people it my take the full 45min, other react quite fast. I would suggest you ask for IV fluids after though. This can help with a faster recovery after.

[lejones1]

It may only take 10 minutes to diagnose POTS but it can take up to 45 to diagnose other things like NMH or vasovagal syncope. Also the longer you stay up, the better idea your doctor can get of exactly how your body responds to being upright. I had a full 45 minute test. I "qualified" for POTS in the first few minutes but it didn't make me pass out so they kept me up the whole time. My BP crashed at the very end, something I wouldn't have expected because it never happens in my daily life. It hasn't really affected my treatment but it's still good to know.

[Libby]

Lejones is right. POTS is within the first 10 minutes, but NMS happens usually between 10 and 45, and because NMS is usually what TTT are checking for, that's usually the protocol centers go by.

[Guest Alex]

In my case after the 15 min of being upright there were several other tests that were conducted while I was lying down. They administered atropine, phenylephrine and phentolamine if recall correctly plus the corresponding antidotes to check the reactions of my HR and BP when subject to those stressors.

They have also checked my catecholamines while lying down and at 5 and 10 min in the upright position.

My understanding is though that different TTT centers follow different protocols for the test.

Best of luck,

Alex

[AmberK]

Aha, those posts all finally make it make sense, thank you all!

My test next wednesday will be the second tilt test I've had. The first one didn't go well at all, as I didn't have a resting heart rate taken, and my knees weren't strapped in. I'm pretty sure that judging by her panicked reaction when I fainted, that the nurse hadn't performed the test before. It's taken almost a year since then (and 20 years since becoming ill) to finally get a diagnosis of POTS, based on some elements from the first TTT and some further ECGS. I now have a fantastic cardiologist at a different hospital, and I feel in much more capable hands than the first time around.

I know that things should go much more smoothly this time, but I've a few questions if you don't mind please...

1) Firstly, last time the test was prolonged because I have very weak legs (especially knee joints) and my knees kept repeatedly buckling. I've since found out that this in effect "reset" the test as it pushed blood flow back up when they buckled. Obviously, I'm pretty sure that this hospital will actually bother to strap my knees in, but I was wondering if anyone else has weak knees, and if so, did the straps prevent your knees from buckling? I think this is probably my biggest worry about it this time around.

2) Whenever I feel particularly ill, I seem to subconciously compensate by fidgeting, which holds it off a bit. How do I override that urge?

3) Last time, I didn't have a resting HR taken at all, it was simply taken seconds before tilting, and straight after hooking me up to everything whilst still chatting. Presuming I do get a chance to relax a bit first this time, how do you relax? My HR is always higher when taken at the doctors or hospital, partly due to sitting up in the waiting room, and partly nerves I think. I want to give my body the best chance to get to my usual resting HR before the test, to make the test as accurate as possible.

Sorry if these questions seem silly.

[Guest Alex]

Amber,

I can only help with your 3rd question - deep breathing helps me relax A LOT.

Honestly though, when I had my first TTT no amount of breathing could have helped me - I was stressed and scared and just wanted it to be over ...at one point I even thought that I somehow subconsciously convinced myself to faint as I am not a fainter, but I fainted during that test. The 2nd time around, knowing what was about to happen I was totally relaxed and I tolerated everything so much better.

Funny you mentioned the reaction of your nurse - you'd think that they are dealing with people who faint on a regular basis, after all that's one of the 'purposes' of the TTT - to make people faint (don't get me wrong, I have a twisted sense of humor sometimes).

Best of luck with the test, it's not the best experience one can have but it's much needed for proper diagnosis.

Keep us posted.

Hugs,

Alex

Edited May 1, 2013 by alex74alex

[jknh9]

Hi Amber,

Here's my two cents:

1. I was strapped in pretty snug at the shoulders/chest, abdomen, and knees. I don't have weak knees but the way I was strapped in I don't think it mattered. I fainted and was unresponsive, but they told me I seized, so I'm not sure how limp my legs went. It's kind of disturbing to me that they didn't have you properly secured. Our bodies can do some crazy stuff during that test.

2. Me too!! I am incredibly fidgety. I get the feeling people think I'm super impatient or just a jerk when I fidget standing in line, but you gotta do what you gotta do. On the TTT, I was fidgeting a lot but I was strapped in so snug it didn't matter. I was out like a light within 2-3 minutes of being up. Also, regarding your original question-- mine was also scheduled for 45 mins but the doctor was quite late because of an emergency case before me, and after they finally had me lying down I was down for about 25 minutes before they came in to do the tests.

3. The fact that they didn't take your resting HR is also bizarre to me. They hooked me up to everything before they laid me down-- heart monitor, blood pressure cuff that took BP every min or two, and IV (though they didn't start the fluids until afterwards). So for me, there is a constant 25-30 minute record of my vitals during that time. Also, the nurses and doctor left me alone the whole time and told me if they popped in while I was down not to talk because that could throw things off. They only told me to talk once they began to tilt me, at which point they asked me to report how I was feeling. The doctor was watching the monitor the whole time they tilted me and said I had POTS in about 10 seconds after I was up.

About relaxing, they dimmed the lights for me and I was alone in a small room so it was a little easier. I think about petting my cats when I need to try to relax and about how I try to comfort them when they're scared. Maybe it's silly, but it really seems to help

I really hope your next one goes better. It's so frustrating when doctors/nurses aren't completely versed in what needs to be done but they try anyway so as not to lose face :/

[AmberK]

Thanks so much both of you for replying, it really helps to know I'm not alone with my worries.

Alex, don't worry, I've a twisted sense of humour too I think it helps keep us sane with these symptoms! It really was ridiculous, and she didn't seem to know how to work the tilt properly so I kept regaining and losing consciousness as she couldn't get the bed down. I did put in a complaint, but they covered eachothers backs, insisted my knees were strapped in, etc, so it ended up my word against hers. Thank goodness my doctor transferred me to a more competent hospital for a second opinion!

Jknh9, thanks for your feedback too. Regarding the straps, that's very reassuring. When I regained consciousness I was in a most bizarre position, due to a strap under my arms but not much anywhere else! That's also helpful to know for 2) as well. Hopefully the straps will solve both problems. I'm shocked that you had so long to rest! I had to sit in a chair for a few minutes while she asked me questions, then was transferred to the bed, the things hooked up to me and then told to lay down and was immediately tilted! My resting HR was 105, when in reality it's usually around 80. It went up to 129, then the nurse repeatedly scolded me because my knees kept buckling. The whole thing was really stressful, and I didn't faint until 32 minutes, which is a miracle for me to last that long usually! That is reassuring what you've said though, and they've told me that if the test is positive I will have a bed for an hour afterwards, which is a whole lot better than being wheeled into the waiting room and sent home straight after fainting, like I was before. I've got an echocardiogram two hours after my tilt test, so I hope whether it's postive or not, they will let me rest for a while in between.

I'm not to eat or drink anything after 9pm the night before. The test is at 9am, but is two hours drive away, so I'm worried about fainting before I even get on the table, but hopefully there wont be much waiting in the waiting room at that time of the morning. I usually drink a lot on journeys, so it should be interesting, anyway! Roll on thursday when it's all over and done with

Thanks again for your feedback, I do feel much better about it all.

[jknh9]

That sounds like something out of a bad Marx Brothers movie, you know, if Harpo would have had POTS or something o_O lol! Wow, I'm really glad they're sending you for a second opinion.

You said the strap was under your arms?? Did you get bruises from that?! I was strapped in straight-jacket style. I can't imagine being up for 32 minutes! You deserve a medal for that! After only like 30 seconds of being up I started begging them to stop the test and when my vision started to go I actually cried out for help... whoops! I really really hope I didn't alarm any of the cardiac patients...

Yeah, they gave me about an hour afterwards. They started the IV fluids before I even came to, and then once I could sit up, the doctor came in and went over the diagnosis while I had a huge glass of water and a chicken salad sandwich generously provided by them-- along with two salt packets I was told I had better use! They wouldn't let me go until I finished eating and I had taken 2 bags of saline through the IV.

Honestly, I was SO ready to do the test by the time they finally prepped me because I felt like I was dying of thirst from the fasting. I hope they can get you in quickly and all goes well!

[dpeeps]

I was there for over an hour, but the POTs test was positive within about 45 seconds of upright tilt. My tachycardia comes on extremely fast after standing up, so this was no surprise. The reason I was there so long is that they did a lot of stuff while I was laying down, before the Tilt. I laid down for maybe 30 minutes before they started the tilt. Then afterwards, even though I never passed out, they had to dismantle everything and take the IV out, and they made me hang around and drink several juice boxes. It wasn't bad at all, but then I hear it is worse if you actually pass out. I didn't feel any different than I do when I stand up at home. Dizzy, lightheaded, tachy, vaguely nauseous, etc.

[AmberK]

Thanks everyone for your support, it really helped

Yesterdays test went MUCH more smoothly than the first. I was a bit horrified, but not entirely surprised, when I was repeatedly told that the place where I had my first tilt test, don't actually do tilt tests!

This time, my knees were properly strapped in, I had a good 5 minutes rest for the resting heart rate (They said they would like to do longer, but they aren't allowed to. Still, it was 5 minutes more than the first one!) I automatically tensed when I was tilted, and kept tensing up my leg muscles until I remembered that I read on here that that is exactly what NOT to do! I immediately relaxed a bit as soon as I remembered, and then seconds later I fainted, so thank you sooo much to everyone on this forum, for helping my test to last such a short time rather than go through a longer torture!

At the point of losing consciousness, my heart rate went up by around 50 beats per minute, and my blood pressure dropped significantly. I was told the test was positive and my diagnosis has changed from "strongly indicates POTS", to a more definite "POTS". Phew! After 20 years, I finally, definitely, know what's wrong with me, and I can't tell you how much of a relief it is.

Last time, I was sent straight home, but this time was given tea and toast, and had to stay for almost two hours to stabilise properly before being allowed home. Last time, I kept regaining and losing consciousness while they worked out how to put the bed back to supine , in a room with several panicked-looking nurses that had rushed in. This time, I was horizontal when I came round, and everything was calm. All in all, a MUCH better experience. (Still not my idea of fun though )

[bebe127]

AmberK,

So glad everything went so much better this time for you. I can tell by your post how relieved you are I know that a dx. of POTS isn't the greatest news in the world, but at least you now know exactly what is wrong and hopefully, you and your doctor's can come up with a plan to get you on the road to a better quality of life.

So happy for you (Your experience that is, not your dx. )

Be well,

Bebe

[Guest Alex]

Sounds like a positive experience ...given the circumstances.

Good luck figuring out the best treatment plan for you.

Keep us posted.

Alex