Yikes...just Spoke With Tilt Table Technician For Upcoming Test

[AllAboutPeace]

I'm not normally someone to freak out about things, but I just had a conversation that has me a little concerned about this...

I'm traveling to have a ttt and ep/cardiologist appt. I spoke with the techinican who will be performing the test on Monday.

She said : she wants to get set up today for the test on Monday (obviously, it's not something they do alot)

it will be 45 minutes

they will look for symptoms and blood pooling

after 1/2 hr they will inject me with meds to make my hr faster (30 bpm)

they will not put me down if I am pre-syncope; will push it to see what happens

don't worry they will help me out whatever happens

When she mentioned watching for symptoms, blood pooling, 45 min test, I was encouraged thinking that she does have some experience with Pots. However, when I mentioned that my hr will already be elevated so there will be no need for medication, she said "oh no dear, your hr wont go up when you are on the tilt - it will stay the same". ARGH! So, I explained that I have pots and I just recorded a 50 bpm increase on my loop monitor when I stood up. Her reaction indicated that she had never heard of it. She then said "oh, but your hr went up because you were changing positions - you will be standing still here". Seriously 50 beats per minute from changing positions is normal!!!! She said that they always inject the medication as it is part of the test. When I questioned that in a case where there is already an increased hr, she said it will be up to the supervising EP to determine that at the time. {she probably left the conversation convinced that I have a "standing phobia" lol}

I think I'd be a little more comfortable if I weren't having other undiagnosed rhythm issues and I know sometimes when I have had adrenaline surges at night it causes my heart to go into a spasm. I'm really not feeling ok with being injected with something to raise my hr and even though everything may turn out just fine, their lack of knowledge gives me zero confidence. I'm having my first visit with an EP after the tilt.

I'm beyond frustrated with no one knowing anything about POTS - my heart goes out to those of you who have been on this journey for years because for me it's only been 7 months.

Is there even a point in doing the ttt if you are not at one of the major centers that know how to deal with you ? Other than the confirmation of diagnosis...I'll still have doctors who have no idea what to do with me.

[sue1234]

My "best"-tested TTT was the only one that had an actual doctor in the room(actually two of them---one was a resident). I was all prepared with all the straps, etc., then they sat in chairs about 4 feet in front of me and watched me and my numbers for the full 45 minutes. I was not injected with anything, but wasn't sure if they had planned on doing that. My heart rate had gone up the full 30+ bpm, along with a high rise in b/p.

The other TTTs I had just with the techs. What I consider the worst done was the one I had at a large, nationally known institution. It was only 10 minutes, and was the only one that did not reflect what the other 3 tests had shown. Because of that, my POTS diagnosis was questioned, even though my previous TTT showed a pulse increase of 35 bpm and a normal supine b/p that went up to 170/110 with standing!!! But, based on their one-time, 10 minute TTT, they thought maybe I had gotten over my POTS!!!

If you are going to actually have an EP there monitoring the test, I would feel secure that they would make the right decision based on your vital signs. If you have to depend solely on the techs judgment, hmmmm, not sure if I would do it there.

[Katybug]

I've had 2 TTT. One at a regular hospital and the other conducted by my POTS neuro in his office (but he's not at a major research center.) During the first one, my HR went to 143-145 and stayed there for the whole TTT (resting was 68-72). They did give me the nitroglycerin under my tongue and that did make things worse as far as my symptoms were concerned (I went from pe-syncope to pre-syncope with dry heaving) and my HR did increase but only a few beats more. My POTS neuro did not administer any drugs...my HR went from resting 64 to upright 139 and stayed there. He said he really wouldn't gain any info from administering drugs in my case.

I had a wicked migraine and was POTSy when I arrived for the test (both times actually.) They weren't sure they wanted to do it as sick as I was. I told them that I needed a dx and what better time to do it than when I was symptomatic. I was willing to bite the bullet for an answer. But, you have to decide what you are comfortable with and what feels safe to you. There have been medical procedures that I have said "No" to because I didn't feel the potential benefits outweighed the risks. I wish you well and hope you make a decision. You can always tell them to stop the procedure if you feel like it is too much or you can refuse the medicine if your HR is high and you feel it would be unsafe.

[MarkA]

I do not remember my TTT taking that long. You will be strapped in so at worst if you blackout like I did you are not going anywhere. I knew as soon as they gave me the med to speed up the heart and started raising me that I was probably not going to be able to fight it off. In the past I had some episodes standing up too quick from sitting on the couch where I had to hold on to something to steady myself cause it would get black and woozy. But I usually never passed out. That was reserved for shots and blood draws. :-)

[puppylove]

I was worried about that medicine before my TTT also. My heart rate was at 193 without meds, so they decided they weren't going to give it to me. The nurse told me the medicine was suppost to show what would happen if I exercised. I hope it goes well, and don't worry because even if you do pass out you're all strapped in so there's no way you would get hurt. For me I did get all my symptoms, very bad blood pooling, and I was really exausted afterward, but I never fainted.

[Tachy Phlegming]

Yeah, you can get them to stop ... When I said "stop, stop" the techs I had said, just wait a bit, we're getting good numbers. And they make you sign a release. You might want to make sure everyone they've tested walks out. I think I asked.

[futurehope]

AllAboutPeace,

Johns Hopkins Hospital wanted to perform a TTT the way you described it. I freaked out so bad hearing about it, that I cancelled.

It turns out that the other 2 TTT's I had were given with physicians present and no under the tongue challenges, and they could see I had POTS. One was done by my neurologist, and the other by a doctor doing a study at NIH (National Institute of Health). In each one, once they saw my body's response, there was no need to keep me upright for 45 minutes. No way I would do that.

If I had to do it all over again, I still would refuse the Hopkins TTT with just a tech present, and a challenge of something to speed the heart. I cannot tell you what to do, but I totally understand your apprehension.

[sarahm]

I didn't know they give nitroglycerin during ttt sometimes. I had it once during a clinical study I participated in. I was laying down and still almost passed out.

[Birdlady]

I can understand your concerns. I was worried about the medicines used too. Sadly, my first TTT where meds were used was terribly done. They started the test without everyone in place and the tech was sitting there talking to me... I was already clearly showing I had POTS and the doc said he wanted to use Nitro in me to "see what would happen". I think it's very cruel for docs to do that if you are already showing a clear diagnosis. Needless to say the Nitro made me feel horrible. HR went up to almost 180. I never fainted though. Apparently my body just won't faint, no matter what...lol

I hope everything goes well for you.

[AllAboutPeace]

Thanks so much for your input and experiences everyone! No one in my current world can fully understand my concerns here - so it's so helpful to know that you all are out there! I've been told a few times that I should just 'trust' that they know what they are doing.

Not sure how exactly I'm going to handle it yet...

[Libby]

From how I understand it, the isoproterenol injection is part of the NCS side of the test. They want to see if you'll pass out. It's not necessary for a POTS diagnosis.

If you really don't want to take it (and don't want to deal with trying to explain why...like talking to a brick wall, some of them) I'd tell them you're sensitive/allergic to sulfa drugs. Isoproterenol contains a sulfite; they won't give it to you if you claim you're allergic.

I took sulfa drugs for acne back in high school. Two weeks in, I developed a faint, non-itchy rash all up and down my arms. "Sulfa Sensitivity" technically, but it's enough to keep docs from giving me sulfa drugs, like the TTT injection .

[yogini]

Not all test centers do this, but many do give medicine if you don't have the increase on your own on the TTT. The place where I had the TTT set me up to give me meds, but luckily my HR went up on its own. I have never heard of meds being given when the HR went up on its own. That sounds like it would be dangerous. The technician you spoke with might not know the specifics -- can you talk to the dr and find out if it would be necessary to give meds if your HR goes up on its own? If you aren't comfortable, which is understandable, ask if you can get the test without the medicine. POTS is unpredictable, so even if you get a 50 bpm increase at home, there is no telling what your body will do on the test.

Edited June 11, 2012 by yogini

[brethor9]

Hey Peace

On my first TTT it was done at an autonomic clinic with very knowledgeable techs and doctors....it technically was a dry run to see what my body was up to and it lasted about 30 mins......I did not pass out but felt horrible and my legs had started pooling etc. They immediately scheduled me to come back for a second shorter TTT to test for catecholamines and to administer the meds. I was also a little apprehensive about the meds but felt comfortable that I wouldnt be in any danger....I went through the dangers with the doctor and techs and worst case scenarios. When they administered the isoproterenol my reaction was quick and severe.....the feeling of your worst scare multiplied by a thousand....pure adrenaline! it was scary because I wasnt prepared for the way it made me react but my wonderful nurses were right there with me and they quickly administer a drug to bring you down and counteract the effects.....my doctor apologized for putting me through it but it was a necessity to determine what my receptors and catecholamines were doing. In the end I was glad I went through it all because I think the more data they can get the better they can treat you...but that just my opinion good luck with whatever you choose to do

Bren

[McBlonde]

I really hope things went ok for you today!!

[AllAboutPeace]

Thank you so much everyone! I soo appreciate all of your info, suggestions and support. I posted the outcome in a new thread.

http://forums.dinet.org/index.php?/topic/20691-ep-opted-not-to-do-tilt-table-test/