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Had My Ttt This Morning


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Hello everyone,

I finally had my TTT this morning, and I was hoping to have a blowout episode of fainting and my heart rate skyrocketing - but of course I felt great when I woke up this morning and not much happened at the test.

I was lighheaded all morning (probably cause I couldn't eat or drink anything) and when they tilted me up my heart rate shot up to 123, and I saw spots, but then I leveled out and was actually ok. I don't know how to feel about this, there are days when I have had my heart rate taken when standing - or sitting for that matter, and it is up at 145. I am trying desparately to get a diagnosis, and it seems like I have these crazy feeling episodes at home or at work, but at the doctors or during tests I feel fairly ok. I think that my test will still qualify as POTS, I read that your heartrate has to go up 30 BPM or over 120 when standing, so I barely made it.

I went to the doctors before the test to get my blood pressure and heart rate checked for the Vanderbilt application, and when I stood up there my heart rate went from 72 to 110 and I almost passed out. Thats good I guess, they recorded it, so hopefully I'll get into the study.

Just wanted to vent...any suggestions/thoughts would be appreciated.

Claire

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Hey there. On my 3rd and 4th TTT my POTS didn't "act up" either. It is aggravating, because on the one day you want something to show it doesn't...It stinks!

Jacquie

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acck....just posted a reply and erased it claire.

Remember, "interpretation of tests is everything" and can vary from doctot to doctor.

You could've had a good day but still, if you felt a little worse during the tilt, that is an answer in itself.

Also the HR when you stood up to write info for Vandy, definitely shows hints of POTS.

I hope you get into Vandy.

Remember, even well meaning docs are clueless about ttt results unless some pts FAINT or get ill.

Do get the print out of your tests for your own possession. Nice to keep on hand and if you go to Vandy, you may want to see the differences you have on different tilts.

Best of luck to you on getting answers. Do NOT let this first response get you down.

Hang in there.

Sophia

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Yeah I am really hoping to get into the Vanderbilt study, I am still unclear as to what it involves but so may of you have gotten diagnosed there - I just want some answers!

My insurance won't cover another TTT, so I have to make the best of these results. I am taking them down to UVA to see the scpecialist there, hopefully he'll have some insight and be able to read them and Dx me. I also have the results from 3 years ago, but again I barely "quaified" for having POTS. I have ALL the other syptoms listed on potsplace.com though, so hopefully they'll consider that.

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Guest sonotech

Try not to get TOO discouraged. I am sure that not everyone has syncope episodes during the TTT but still have POTS. Like you said, you were probably having a "good day" and timing is everything. It sounds like your hrt rate increase in the docs office along with symptoms might be enough.

You might actually be fortunate that you didnt pass out during the TTT cuz it was a horrible experience for me and I dont EVER want that test AGAIN!!!

Keep your head up!! :D

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Hi Claire

When I was recently at Mayo, I had my 3rd tt test.

It turned out fairly normal, my hr went from about in the mid 60's to about 100-105, from what I was told and remember, for I haven't received my results back yet. My bp stayed normal. Later on in the day, my Hr hit 130 on standing. I'm starting to think some of these tests can be decieving.

My last tt test My hr went up to about 100, but my bp had a dramatic drop, so they put me down, even though I really didn't feel faint. During my first TT test, my hr went up 50 beats to 130 fairly quickly, but my bp remained the same.

Different results on all three test.

Even though my last test had the best results, my symptoms are worse.

I've come to the conclusion, that at any given time our bodies are doing so many different things that during a nine minute tt test, who knows what will be happening at that time. My hr jumps all over the place. Nobody can predict when it is going to be happening. Although I wish more Dr's would understand this.

I woudn't worry about it.

Traci

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Traci -

I think I have a similar situation, my heart rate is just plain all over the darn place, I just got copies of my halter monitor report, and my heart fluctuates from the mid 70's up through the 130's regularly, and once at 1:13AM they reported my BPM was at 145. I was asleep! How weird.

Anyways...thank you all for the encouraging words....I am faxing the Vandy app on Monday and am hoping to get accepted and get some more anwers.

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Sorry you didn't get the results that you wanted with your ttt, but quite honestly I would look at it as a blessing. When I had mine done, I not only passed out but had a seizure and lost control of my bladder. It was definately a horrifying experience for me and my blood pressure bottomed out past measurable.

I do hope you have luck finding a dx and hopefully they can help you at Vandy! I am still thinking about going down there, but I have a great pots doc.

Nicole

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Guest sonotech

Actually, if you look up info on the TTT, it says that many people DO NOT pass out during the test but still have a positive result. It actually states that "loss of conciousness" is pretty RARE. I dont know the web site, but it is listed on this site!!

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Sorry you didn't get the results that you wanted with your ttt, but quite honestly I would look at it as a blessing. When I had mine done, I not only passed out but had a seizure and lost control of my bladder. It was definately a horrifying experience for me and my blood pressure bottomed out past measurable.

I do hope you have luck finding a dx and hopefully they can help you at Vandy! I am still thinking about going down there, but I have a great pots doc.

Nicole

That is horrible! I am glad I didn't go through that, and sorry you experienced that. Don't get me wrong, I am not complaining, it just annoying that I have these horrible symptoms at all the wrong times.

By the way - who is your doctor if you don't mind me asking?? I am on the hunt for a good doc, even if its long distance, in case I dont get to go to Vandy.

Thanks!

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Don't worry, I think that's a normal feeling! If you're really sick a lot of the time and feeling crappy, you don't want to have a diagnostic test when you're feeling well, you want it when you're feeling like you usually do!!! When I meet with doctors, they often ask, "Is this a good day or a bad day?" and seeing it from that perspective, I think, is helpful.

maybe I'm imagining it, but maybe the 120 figure is for people who have very high resting heart rates and theirs don't go up quite by 30 beats? Because I tend to have a very low resting HR (45-55), and when I go up to 100 or 115 it's still a big jump! And even with that I go over 150 all the time.

I hope you find a doctor soon who can actually help you!

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So I was reading through peoples experiences with TTT in another post, and it occured to me that they may have done the test wrong. I was not laid down for any length of time at all, they hooked me up while sitting (i got lighheaded standing up and still) then told me to lean back, and then tilted me up. My heart rate to begin with was 100, and so when it shot up to 123 i felt lightheaded/saw spots (but didn't pass out).

Aren't they supposed to let you rest for 10 minutes? My nurse talked to me the whole time too, last time I had it done it was in a quiet dark room and i wasn't supposed to talk.

Thanks

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Guest sonotech

You DEFINATELY need a retest!!

I had layed down on the table for at least 45 min before the test (of course I was in the hosp at the time and coulnt sit up).

After laying there for a long period, then they sat the table STRAIGHT UP and I was already freaking out when the table was only tilted about 30 degrees!!

I of course started crying, my bp bottomed out, hrt rate was 200, and the doc jumped up and tossed some nitroglycerine in my mouth.......and then I woke up laying down with the table flat and abput 20 people staring at me (just like the movies) ha ha.

The nurses said the couldnt get a bp OR pulse on me and gave me a little JOLT to help.

It was horrible waking up, I was in so much pain from EVERY MUSCLE IN MY BODY cramping from the lack of oxygen that occured during my BLACKOUT, and I was severely nauseous.

It took the rest of the day to recover from that!!

Hope you can get the docs to RE-TEST you!!!!

LAURA

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This makes me so mad to read about those expensive tests DONE WRONG.

Yes, please ask for a re-test and when you do, FIND OUT THE PROTOCOL in detail from the hospital.

Though all vary, most ALL should be done in quiet, dimly lit room with time to be supine and quiet SEVERAL minutes before the test.

I am sorry this is exhausting and frustrating for you.

Keep us posted.

S

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i thought i was having a heart attack, stroke or something during my ttt close to passing out. i could not walk afterwards i felt terrible. i only had one test done. thank god! keep on them if you know something is wrong. Good luck

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Claire,

You are not alone! I still have not had a dx yet. They tell me they think I have bla bla bla.

When I had my TTT the lights were bright and I remember talking with the nurse?

But also was having a good day and was on meds too. Doesn't make any sense does it?

I wish you luck and hope you get answers so you can finaly say "this is what I have " and so you can ease your mind.

Amber

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