Tilt Table Test Tomorrow

[castronovo112587]

Have my tilt table test tomorrow for official diagnosis. I know I have it because my heart rate laying, sitting and standing has been monitored by my thoroughly. I am nervous because the doctor who ordered the test doesn't seem to know much about it and I'm getting it at the local hospital here. I hope they know about it and how to perform the test properly. What should I expect? I plan on going to Mayo once I get the results to find a Dr there to treat me.

[millyaulait]

If they have the equipment then I'm sure they will know how to do the test, don't worry about that! It's very simple

What to expect? Expect to feel... bad. Maybe? It depends on how you feel normally while standing.

You'll be strapped up to a bed, probably along with a heart & bp monitor, first you'll be lying down for a bit, then they will raise the bed up to a certain angle. At that point all you have to do is wait. For me it was horrible because I get pre-syncope very, very easily but it takes a while for me to actually pass out, so I spent maybe 15 minutes on the verge of consciousness, shaking and almost vomiting, getting serious chills and turning grey, all the wonderful pre-syncope symptoms but with no relief of sitting or lying down to get rid of it. It seemed like I needed 'help' to pass out completely, so they sprayed a drug under my tongue and within 2 minutes I had fully fainted, the bed was then pushed back into the flat position, and the nurses helped me wake up (really just by shaking me and calling my name), then I was allowed to rest for a while.

That's basically my experience. It might be different for you, for everyone. All I can say is keep calm, because it will end at some point, it may just be very uncomfortable, but also it may be a complete breeze for you. They may not even 'need' you to faint at all. Either way - good luck!

[lulusoccer]

My experience wasn't actually bad. I have read a lot of other people's TTT stories and it seems like a lot of people have a bad reaction but I think it is also very individualized so don't automatically think you will have a bad reaction just because you have POTs =). For mine, they hooked me up to a 12 lead EKG and placed an IV (Saline lock) in my arm in case they needed to give me any medications. They had me lay on a bed for a few minutes and took my resting heart rate and BP. They then raise the bed up and continue to monitor your vital signs for the remainder of the test. My HR went up initially to 120's and then by the 10 min mark it was 149. At that time the Cardiologist monitoring the test said we have the diagnosis of POTs and there is no need to continue the test so they laid me back down =) They didn't need me to pass out or have to give me any medications. I had a mild headache later on in the day and was tired so I took a nap. During the test I did feel a little faint and hot but that was it. I hope yours goes well =)

[AshleyPooh]

My experience is this:

I went in and got blood drawn(just to make sure all is well with me before doing the test). Then i was strapped to a bed, and lay there for a while. then they raised the bed up and i stood there while two people ( a nurse practitioner from the cardiology office and a nurse) took notes and watched me. It only took me a few minutes before I started having symptoms, which is hilarious b/c in real life, i never got that bad off, b/c i was always fidgeting my legs. Well in the tilt, you can't fidget your legs...so you will probably know pretty soon whether or not you are going to go down. I didn't fully go unconscious, thanks to nurses paying attention and getting me flat fast enough, but do prepare to feel drained, tired, and weak afterward. And be careful to REST the next few days, as you don't want to re trigger a faint. you are more fragile and succeptible to them after your test for a while.

I was given gatorade and crackers btw

[Libby]

TTT is used for POTS diagnosis, but wasn't developed for POTS diagnosis; its original intended purpose was to identify vasovagal syncope. Which is good news. The protocol shouldn't change based on your doc's knowledge of POTS. Though there are a few TTT protocols out there, all are similar to what millyaulait described.

Generally, you lie down on the table and they place the bp monitor and EKG leads and a few safety straps to hold you on if you pass out later. Some people get an IV placed - I did and I can say that if that's an option, do it. The fluid really helps the recovery. The bp monitor will inflate every 1-3 minutes throughout the test.. They let you relax, lying down and with the lights dimmed for 10-15 minutes to get a baseline heart rate and bp.

Then they tilt you - the most common angle is 70 degrees. Aside from being a bit safer to be leaning against something if you pass out, 70 degrees allows gravity to pull your blood down like it would if you were fully standing, but without your body having to support much of your weight, so you're not engaging your leg muscles nearly as much. With so little resistance, if blood is going to pool it will do it much faster than if you were simply standing. That's why many people experience a much quicker and more intense reaction with the TTT than if they were just, say, waiting in line. I had never passed out before my TTT, but it took me barely 12 minutes to do it on that table. Surprised the heck out of me - I spent the first 10 minutes wondering if someone had turned the heat up and cursing myself for wearing sweatpants.

The nurse who is monitoring you should notice your BP drop, if you do pass out. Mine got a final reading, lowered me down, opened my IV to get fluids in and raise my bp as fast as possible, and then let me just lie there and try to stop feeling like death for about 10 minutes. She did tell me that most people that are affected by the tilt are begging to be lowered down by the end of it, so if you can't help yourself from asking don't worry. They're used to it.

Not everyone with POTS passes out. One study, if I recall correctly, put it at about 30%. Though, honestly, I'm glad I passed out. My test was structured so that the initial tilt was 45 minutes and then, if I hadn't passed out (remember, its primary purpose is to diagnose vasovagal syncope), they would have lowered me down given a stimulant to kick my heart into high gear, raised me back up and watched for another 15 minutes to see if that added stressor provoked a vasovagal episode.

Not everyone's test has that same timing. All have you tilted for at least 10 minutes, though, which is all the time that's necessary for a POTS diagnosis. Not for a VVS diagnosis (the average time a person passes out is around 25 minutes in), so I don't know what use the protocols that tilt people for 15 minutes are for the test's intended purpose...but whatever.

Good luck! The test is good to have, proof that it's not in your head, but the most important thing is to have a knowledgable doctor (or at the very least one who is willing to learn). I'm glad you're going to Mayo afterwards. Good luck! Let us know how it goes.

[castronovo112587]

I've never passed out before neither. Has anyone never passed out till the ttt and then started to get fainting episodes after because of the fact?

[castronovo112587]

I'm not understanding why they would try to get you to faint because I thought pots was diagnosed on a 40beat increase in heart rate upon standing by 10minutes or sustained at 120. I can see them wanting to provoke fainting if you are known to faint but if you never have fainted before shouldn't they just stop the test after the first 10 minutes?

[Libby]

Most doctors are not educated about POTS. The test, like I said, is really intended to diagnose syncope - using it for POTS is akin to using a drug 'off-label'. The cardio's office where I did mine wouldn't even schedule it until my GP wrote 'syncope' on the prescription note, despite the fact that I had never passed out before. They said insurance wouldn't cover the test for any other reason.

Hospitals/doctors offices have protocol to follow. Sounds like lulusoccer found a place with a POTS protocol (or a doc that knew enough to override the syncope protocol - lucky!), but most places don't. And most experiences I've heard of don't have a doctor monitoring the patient, but a nurse. I don't think a nurse would have the authority (or want to risk their neck) to cut a test short without an order from a doctor. I don't blame them.

I like to think of it as two diagnoses for the price of one.

Statistically speaking, you probably won't pass out. If you do, it's really not that bad. It's not fun, and I wouldn't want to do it again, but it's over pretty quickly. And you feel better the second they lower you back down.

I can't recall anyone being triggered into fainting episodes by a TTT, after the TTT. Anything's possible, I guess, but I wouldn't worry about it if I were you. Really, the most I've read about happening is that you may feel a bit more POTSy for a day or two afterwards. Personally, my tolerance for standing/sitting up was shot for a couple of days - I became pre-syncopal more easily and was a lot more tired in general. Again, not fun. But worth it to never have the diagnosis of Anxiety given to me, ever again. Also, knowing that I actually did have a fainting reflex made me actually pay attention to my body's cues, which in turn has helped with my symptoms.

[lulusoccer]

I'm not understanding why they would try to get you to faint because I thought pots was diagnosed on a 40beat increase in heart rate upon standing by 10minutes or sustained at 120. I can see them wanting to provoke fainting if you are known to faint but if you never have fainted before shouldn't they just stop the test after the first 10 minutes?

When I went in for the test the cardiologist asked me why they were doing the test and I mentioned that my endocrinologist thought I had POTs and just wanted to confirm it with the TTT. The hospital doesn't have a POTs protocol (I work at this hospital - the Dr. doing the test didn't know I worked their either), the cardiologist just knew what POTs was. I have never fainted before so there really wasn't a reason to make me faint. The cardiologist did suspect it would happen if he continued the test but he said there wasn't a point because you don't need to faint to get a POTs diagnosis. So maybe mention when you go for the test they think you may have POTs and want to confirm - if so you may get the shorter test like I did. (Unless you aren't meeting the criteria for POTs they will continue with the test). The cardiologist wasn't in the room the entire time he was right around the corner - he was there at the beginning and saw the instant rise in HR and then walked away and the RN called him back in when my HR was 149 and the test ended. He was even like we can stop the test after the first minute because he said it confirmed my diagnosis but he was like well let's just go for 10. The TTT may have initially been intended to diagnose syncope but it is definitely the gold standard diagnosis for POTs. I suspect in the future insurance companies will accept it as a diagnosis for coverage of the test but those things take time.

[castronovo112587]

Thank you Libby:)

[Psalm 23]

Hi Rosey,

It would appear that everyone's response to a TTT and the way in which a TTT is done varies considerably. I suppose there is the Cardiologist version TTT and the Neurologist version. My TTT was done at Mayo and was only 10 minutes long with no medication infusion and was done in conjunction with all the rest of the autonomic reflex screening. At five minutes I felt nauseated and dizzy but made it through okay with passing out. I never had to endure a longer TTT because my local Cardiologist who diagnosed me with POTS in 2006, 2007 and again in 2011 ( when the light finally came on and I realized I needed to go to Mayo for help ) said I didn't need to have a TTT as it wouldn't change his diagnosis. I guess I should be thankful. If you are planning a trip to Mayo keep in mind that they repeat most all of the outside testing that has been done so be prepared for the possibility of another TTT. If you are referred to the Neurology dept I should think it would be a ten minute one as was mine.

In answer to your question. Prior to my TTT I experienced a few actual syncopal episodes but since having my TTT I have had none. I think in large part because of effective treatment and a greater recognition and response to presyncopal symptoms.

I hope it all goes well for you and provides much needed information for a diagnosis and treatment plan.

Janet

[castronovo112587]

Thanks lulu soccer. Yeah my heart rate instantly jumps 40 beats within 5 seconds of standing lol so I hope it will only be 10 minutes

[castronovo112587]

Thanks everyone for your helpful info. Yes there is a mayo clinic an hr away from me in Jacksonville. I am lucky to live close to one

[castronovo112587]

Thanks psalm23

[BeforeTheMorning]

Thinking of you today. I hope that your TTT goes well and it isn't too hard on you.

Best Wishes,

Lyla

[castronovo112587]

Thanks guys confused about my results I posted a topic about it today. Didn't faint, got dizzy and warm and a headache