Terrified Of My Ttt Tomorrow!

[Altruism]

I'm having a TTT tomorrow and I'm terrified of it!!! Please, give me some hope and courage otherwise I'll cancel it for a second time in the last 30 days First time I was so unwell (hr goes up to 160 withing 5 seconds of standing) that I did not even need the test. Bu my new neurologist wants to see what's going on with my HR and BP. I'm scared I'm going to faint.

Do all people faint?

Can I tell the nurse to stop the test if I feel too unwell before I actually pass out?

Will it be inconclusive?

Is 2-3-5 min on the TTT enough to diagnose POTS if your HR does go up over 120?

I can't stay up for longer, I'm bedridden, housebound and I don't want to pass out, I'm scared this will make my anxiety even worse... (((

Thanks!

[imapumpkin]

Not everyone faints and sometimes if they see you are in distress and close to fainting, they will stop the test and bring you back down esp if you have such a dramatic reaction they really don't need more than a few minutes recorded data to diagnose.. Make sure you are very well hydrated beforehand! It's not a fun test and makes you feel pretty lousy during and after, but its better to know and have the official diagnosis than to never have tried?

Good luck!

[Guest Alex]

Hi there,

I hope I didn't scare you earlier in the other post about the TTT.

I'll say it again, you don't have to faint. If you don't normally faint, then you have no reason to worry about this.

There really isn't anything fun about the test, but unfortunately there is no way to get the proper diagnosis.

Pumpkin did address some very important points here: stay hydrated, and all they really need are a few minutes of data to figure things out. If you have such a marked increase in HR as soon as you stand, I'm sure they will capture that fast.

I'd suggest you talk to the dr/nurses that will be present during the test and tell them about your concerns and fears. They will be more than accommodating, as I'm sure they deal with patients like us on an almost daily basis.

I was terrified when I had my first TTT, yet I made it, and I even consented to a second one. They were both 45 min long (beginning to end), but I was 'vertical' only for a couple of minutes the first time, and for 10 min the 2nd time around. The rest of the time was spent testing my reactions to a bunch of meds/stimulants, plus they tested my catecholamines supine and standing as they were checking for hyperPOTS (which I don't have).

You'll be fine, you'll see. Tomorrow around this time you'll be posting here letting us know that you've finally gotten some treatment plan.

Hang in there and stay strong. You can do this.

I'll keep my fingers crossed for you.

Hugs,

Alex

[FarmerAmy]

Don't worry! You'll get through it!! I felt terrible when I did a TTT, but they gave me IV fluids at the end of the test and I actually felt pretty good for a few hours after the test.

I did not pass out during my TTT. They kept me standing for 20 minutes and my heart rate dropped to 60/40. I couldn't really see or talk after 20 minutes, so they decided to end the test.

I feel like I got a lot of valuable information from my TTT and it was totally worth feeling bad.

I do not think your TTT will be inconclusive. It seems like you have severe symptoms and they will certainly see that in your test.

Hang in there! You can do it! And you will be through it by this time tomorrow!

Amy

[SpinnyC]

I don't think you'll find to many people here who are fans of the TTT , but it doesn't hurt and it can really help your doctor determine what's going on. I can understand why you'd feel scared- when you don't stand that long it seems like an impossible task. That's how I felt- I can't stand for that long on my own so the idea seemed horrible. It was uncomfortable and unsettling to feel symptomatic for that long but i just tried to remember that if doctors never saw my symptoms, they couldn't ever help me.

I've had several TTT now. They were all run different ways.

The first one I had was the worst. I was nervous about it, which probably made the experience much worse. It was also the only one where I was given a drug to try and force my system into fainting (I didn't). I'm not going to lie- I hope I never have to do that again because the medicine drove my heart rate up high- but that part only lasted a few minutes and I was surrounded by a doctor and medical staff.

The second and third were done with no medication. I felt cruddy during/after both of them, but they were the best in terms of diagnosis and getting treatment. I didn't faint for those either, you don't have to faint have a Pots diagnosis. And actually none of my TTT happened on days when my symptoms were at their worst. I think on those days there's a good chance I would have fainted being upright that long, but it might have been better for me if I had because my doctors could have seen me at my worst first-hand.

I did the entire 45 minutes all three times, but sometimes as others have said they stop sooner depending on what was happening. If you faint they will lay you down immediately regardless of time. And if you do faint, it's probably the safest place you could. You are strapped onto a table and aren't at a full 90 degree angle so you won't get hurt... you'd probably just feel the usual post-faint miserableness.

Just make sure you have someone with you to drive afterwards. I needed to rest after all of them.

[Chaos]

Hang in there! You'll get thru it and hopefully get some good info from it. I've had five (6?) TTTs and have not passed out on any of them. The nurses have always been very careful about asking how I was doing and they watch you very carefully. You will be hooked up to monitors etc. and they know what to do if you start feeling bad. A lot of people on here have reported having their tests end within a few minutes because their results were so dramatic. You may be one of them.

A lot of us worried that we would have one of our "good" days the day we did the test and nothing would show up. At least you won't have that to worry about.

Good luck. Let us know how it goes.

Sending you lots of hugs!!!!!

[bebe127]

I know it is hard, but try not to worry. Anxiety just makes you feel worse. When I had my TTT the dr. wasn't even in the room the first time. He told me that most people don't respond for about 20 min. I proved him wrong. They stood me up and within 3 minutes, my heart rate was up to 150+. I could feel it coming on and told the nurse, "IT'S COMING!!!" Once the dr. came in and saw the tapes, they immediately put me down and within minutes all vitals returned to normal. He repeated the test two more times, each with the same result. My BP actually went up and I did not faint.

Like many have already said on here, hopefully, at least you will know what's what when it is over. I don't recall feeling better or worse after mine, just really tired. Like Spinny said too, make sure you have someone going with you to drive as well as for support.

You will be okay. I will be thinking about you and praying

Bebe

[looneymom]

You will do great and your medical staff will take care of you. Don't worry about fainting because they ask you how you are feeling and will stop the test if they feel it is necessary. You and your doctor will be getting some valuable information and this test is worth it.

[Altruism]

Thanks for all your support, guys!!!

I had the TTT an hour ago and I officially broke the record. I was up for ... 7 seconds!! My heart rate went from 90 to 185 in 6 seconds and I felt extremely tachy, dizzy and scared. They had me down immediately and seemed quite scared/confused/impressed.

I'm worried that my anxiety contributed to the results. I truly hope my neuro won't decide it' "just anxiety" as 2 min after they tilted me back down my hr was back to 95.

My bp stayed pretty much the same - 140/90. I wish I stood up longer so we could know mre about my bp fluctuations, but that's the best I could do.

This should indicate hyperPOTS, right?

[HopeSprings]

Sorry you felt yucky, but glad you made it! And you may have broken a record! I don't think anxiety would explain it if your heartrate went up and down with the tilt. I would think anxiety would have shown itself beforehand just anticipating the tilt. As far as I know Hyperpots is diagnosed with norepinephrine levels and/or BP that shoots up standing or tilted up- doesn't sound like you have that information. Did the Doctor diagnose anything or do you need to follow up?

[misstraci]

Great! Glad to hear you made it through and that is wasn't horrific. Yes, considering the numbers you give here, that would be hyperpots. Definitely POTS!!! 90-185 in 6 seconds I do say that is "impressive".

What are their next steps/suggestions for you, such as medication, etc?

And I'm sure anxiety was present but I bet couldn't contribute that much of an increase, maybe partial but in addition to a "regular" increase.

[derekliz]

Please do not get yourself worked up over the TTT. The staff is there to assist you and are trained to help if it is needed.

I have never fainted, have had 2 TTT. The first one was 10 min and the 2nd was 45 min. I did not faint on either one.

Good luck and let us know how it goes!

liz

[Altruism]

Forgot to mention I took 0.25 mg Klonopin while waiting for my TTT because I was already feeling a terrible adrenaline surge. At least they got to see how bad my POTS is even while being on a benzo!

Naomi, there was no doctor in the room, just a tech and my husband. The tech said she's not allowed to discuss the results with me, but my husband told me all the numbers as he was sitting right in front of the monitor. Also, looking at their faces, I knew I did something pretty "impressive". lol I'll follow up with my neuro next week and I can't wait to get some meds and finally some relief! I can't live like this anymore! We don't know anything about my BP as my HR goes so high in so little time that blood pressure cuffs give error (even the professional ones). I truly hope today they managed to get an idea of my BP...

misstraci, I'm waiting for my NE and catecholamine results. I also did a stand up brain and spine MRI. I had VEDS genetic test too. I'm determined to start the CORRECT treatment by February.

I can't survive these horrible SVTs or whatever they are. I don't know if it's severe panic, POTS, NE rush or a sick heart, all I know is I had none of these episodes before POTS started.

[MomtoGiuliana]

I'm glad you went through with it. I had similar results. My hr went from 80 bpm to as high at 160 bpm my bp also shot up as I recall to something crazy. It lasted only several minutes b/c I felt so uncomfortable--I never fainted and did not faint on the test either. I would not worry about anxiety being a factor in the test results.

I hope you get answers and effective treatment soon.

[badhbt]

I am glad you got it done. I hope you get some answers soon with your testing and some relief!!