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My cardio suspects I have POTS due to all my symptoms but wants to do a TTT just to be sure. Its my first one and i'm new to all of this so I am just wondering what it's like? I generally understand what's going to happen, but don't they give you medicine to make you feel worse the second time you are in the upright position? How bad is it? I'm a little nervous...

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Hi

I only had to do the test once as I fainted. I have fainted lots of times so I wasn't bothered. It was a bit of an odd feeling not being able to move my legs to encourage the circulation back up my legs, since this is second nature to me if I am stood. Otherwise, it wasn't very exciting I'm afraid! From starting to feel ill to passing out was less than one minute.

I think that if nothing happens on the first TTT, they can give nitroglycerin. I didn't get this far so I don't know what it is like.

Although it may not appear so from the pictures and descriptions, you do have control over the situation. They can move the table back down to horizontal in a second if you have had enough. Try not to worry - the intention is to replicate symptoms you normally have, just with the bonus of being able to monitor HR, BP in a controlled environment.

Best wishes

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My experience was bad.As soon as they lifted me up I knew it would be. I started throwing up and crying, then lost my hearing and mumbling stuff. I was begging them to put me down and they brought in a crash cart because my bp was around 50/20. somehow I was still conscious, but I had a seizure and they put me down. I think I was only up 6 mins or so. everything went back to normal after and I didnt have to take any meds. it was definently not fun, but it was needed and very quick for me. sorry if I scared you, but I wish I would have known because I had no clue what to expect and it freaked me out. good luck!

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My son has had two TTT and neither one used any medications. One was done in Cleveland(Case Western University Hospital) and the other done in October at the Mayo Clinic. Did your doctor tell you that he would give you the test with medication? Some places do and some don't and I don't know why that is.

Christy

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The TTT will probably make you feel sick...whatever symptoms you tend to get when your suspected POTS flares up and you have an acute attack. But, keep in mind that getting an official diagnosis is worth it. It will help your doctors give you better and more accurate treatment and (I read your other post about school) it will allow your parents to deal more easily with your school situation.

Here's how my first TTT went: They put an IV in my arm in case they needed to give me any meds. Then, they hooks me up to the monitors and took my resting vital signs. They strapped me to the table and tilted me up. At 3 mins. my tachycardia made my symptoms start and the nurses told me to keep telling them all the symptoms I was experiencing. I did not experience any symptoms that I had never felt before. At the 35 minute mark, they did give me the sublingual nitro because me heart rate was starting to drop finally. All this did was make me symptomatic again because it spiked my heart rate again. At the 45 min. mark they put me down and gave me soda and cookies once I was feeling a bit better.

Good luck on your test.

Katie

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ChistyD,

I was given the nitro during my test and I think it was because I was actually sent for the test specifically to check for neurocardiogenic syncope and I think they use the nitro to artificially drive your HR up to see if you have a sudden fall in BP. I just so happens that my results were consistent with POTS instead.

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Mine was pretty standard. The nurse asked me a few questions about my medical history (found out that I was sensitive/allergic to sulfa, so the possibility of using meds to provoke syncope was taken off the table). She hooked me up to an EKG, put a blood pressure cuff on one arm and an IV in the other, strapped me in and had me just lie there for about 15 minutes to get a baseline hr/bp.

Then she raised me up to a 70 degree angle - there's a lip on the end of the table so you're basically standing, not just hanging there - turned off the lights and told me to tell her if I started to experience any symptoms, then she sat down at the computer to monitor my vitals (no talking - it can mess with blood pressure). The bp cuff automatically inflated once a minute.

About ten minutes in, I started to get hot (I thought it was because I was wearing sweatpants :lol: ), started to sweat, felt nauseous. The nurse noticed a drop in my bp and she came over and asked me how I was feeling. I just really, really wanted to sit down. Everything happened really fast after that, my vision went white, my hearing started to go, I wanted to puke. The nurse was very sweet and comforting and as soon as she got the bp reading she needed, she tilted me back down, turned up the IV and told me to move my legs to get the blood moving. I was feeling better within a minute or two, and on my feet within 10. I did feel kind of cruddy for about a week or so afterwards - my symptoms were a bit worse and more easily provoked - but not debilitated.

The tilt test kind of surprised me. I had read all the posts, and people here were great about letting me know what might happen, but I guess I just didn't think it would happen to me, that I would faint. I figured that I would feel sick from the heart rate jump, but I had never passed out before - and I had definitely stood for forty five minutes. I really didn't realize how much I compensated for my symptoms without knowing it. Crossing my legs, fidgeting etc.

If you're one for statistics, it looks like only about 1/2 to 2/3 of the people who have had previous episodes of syncope have a positive tilt test. It's more like 1 or 2 out of ten for those who've only had presyncopal episodes. It depends on the day and how symptomatic you are going into it, for a lot of people.

But it's good to remember that a positive/negative tilt test doesn't necessarily indicate whether you'll test positive/negative for POTS. If you have a positive test, you'll likely be diagnosed with neurocardiogenic syncope. If you have a heart rate rise of 30 bpm or to over 120 bpm, you'll be diagnosed with POTS. You could have both/one/neither.

I hope the tilt gives you some of the answers you're looking for. Good luck! Let us know how it goes!

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I've never actually fainted before either, but now that I think about it I do things to make myself less dizzy too. I have a phobia of throwing up so I'm hoping it doesn't make me sick. Also, why do people become more symptomatic when they are being tilted on a table than normal? My cardio thinks I have white coat syndrome because my bp and hr shoot up whenever I go to an appointment so hopefully that doesn't affect it.

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I had never fainted and didn't faint for my tilt table. I actually fainted my first time about a month later while in the hospital and I was in a hospital bed vomiting like crazy at the time. And seriously, if you're going to faint, the best time/ place to do it (not that there is a "best" time, of course) is definitely when you're being watched by medical professionals. That is the most positive spin I can put on it. :)

I actually was having a less symptomatic day when I had my TTT and was kind of disappointed! But while I did not faint and my blood pressure mostly stayed in a decent place, my heart rate went really high, really fast and hence the POTS diagnosis. Also I definitely had a lot of symptoms. The scariest thing that happened to me was that I started shaking and twitching a ton, kind of like a seizure. That had never happened to me before. Everything else that happened and everything else I felt though was pretty normal for me. I couldn't see at one point. I got really warm. I was super dizzy. And I got so nauseous they were holding a bucket to my face while I retched but I didn't vomit (of course I'm also on a lot of anti-nausea meds and in my case because I am on IV nutrition for my gastroparesis I also had not actually eaten food in days, maybe weeks at the time). Honestly when I got the most nauseous was also when I was having trouble seeing so all I know is there was a bucket being held in my face but I was pretty out of it!

They did inject me with stuff too. Not sure what because there's a couple of different meds they might use from what I understand but it went in through an IV and my heart rate kept getting higher and higher until very honestly it got so high that they stopped the injection and started flushing saline through, I think. All I know is at some point they're like "Okay we do NOT need her heart rate so high!" and they rushed to stop the medicine! I think it was during that part of it that I was unable to see and nearly vomiting.

They actually called my test "mostly negative" and I was kind of bummed but when the neurologist who ordered the test looked at the results he said I had a pretty significant reaction and was highly symptomatic. Actually I've seen the report and they didn't even write down every single symptom I reported having! And they do want you to communicate with them and tell them how you are feeling. As I recall, a few times they even flat out had to ask me "Are you still with us?"

So yeah the test ***** and you're probably going to feel a bit crappy for the rest of the day (and be TIRED!) but it's not the worst thing in the world, honestly, I promise! I had an hour car ride home after my test and I don't remember feeling all that terrible once it was done. When it is done they lay you down to recover. Actually I know that while I was recovering I started to sit up a bit and they flat out pointed out to me that just half sitting up sent my heart rate skyrocketing. So I had sort of suspected POTS and it did confirm it, without me fainting. So not EVERYONE will faint. And even if you don't faint it doesn't mean it won't aid in a diagnosis.

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I think my test was standard. She did a few tests before the table tilt so I was already hooked up to the monitors. She strapped me on and tilted me to 70 degrees. I had to stand there for 15 minutes. After a few minutes I was getting dizzy, light headed, and nauseous. She asked if I was ok (must have seen something on the monitor) so I told her. At about 7 minutes she asked if my feet were cold, I told her they always are. They were turning purple and she took the temp of my feet. I know my bp and heart rate increased dramatically. After 15 minutes she laid the table back down while I recovered.

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The TTT is considered one of the definitive tests; it can provide some really useful information to confirm or rule out a diagnosis of POTS/NCS, etc, and it can also help in planning of treatment. If you decide to go through with the exam, just be prepared to feel really awful afterward. For me, it was no worse than a really bad POTSy day. It was also super tough for me to be without my morning cup of coffee first thing in the morning, which helps get my bp up. Bless my friend who took me for the test and had a HUGE cup of coffee waiting for me when I was done. As my cardio said, I "failed spectacularly" on the test--lost my blood pressure 2x and they stopped the test before I fully fainted b/c my diastolic bp was not detectable and my heart rate started soaring. My test only lasted 15 minutes. However, I have a friend whose test was more than an hour--and they figured out she did NOT have dysautonomia; it helped them realize it was hormones --she had a pitiutary tumor.

Personally, I'd do the test again if my doctor asked, mostly to see if I'm doing about the same, any better or any worse. Of all the tests I've had done that was one of my easier ones! But, I'm with Ernie...I'd much rather ride the real roller coaster!!! Ernie, see you at the amusement park? Cedar Point is great for coaster fans!!

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I didn't know what a tilt table test was for when I got tested. The doctors refused to tell me and I decided I wouldn't bother trying to find out before the test.

During the TTT, I kept thinking this must be how astronauts must feel and I said so at the time. It was the wierdest feeling having all this G force on my body as the table was raising to upright. It was sort of like a roller coaster ride but not much fun, more the feeling of being a lab rat.

I felt nauseous as the test went on which is rather bizarre given nausea is not my normal symtom. My HR was fast and I could feel it. They asked me to tap it out for them which I did with great precision. My HR and BP stabilised and weren't going anywhere after about 10 mins (up or down) so they discontinued the test and diagnosed POTS even thought I hadn't quite gotten the 30 point rise.

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I've never actually fainted before either, but now that I think about it I do things to make myself less dizzy too. I have a phobia of throwing up so I'm hoping it doesn't make me sick. Also, why do people become more symptomatic when they are being tilted on a table than normal?

That's pretty much the reason - when you're not strapped down to a table, you can do things (move, fidget, sit down lol) that will mitigate your symptoms and keep you from fainting. Like I'll bounce in place. I used to think it was because I was just an antsy person, but now I can see that keeping my calf muscle working keeps my blood moving.

I experimented at home after my tilt and found that standing perfectly still for 10 minutes causes the exact same symptoms. But it's better because at home you can sit down before you black out. :P

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As others have said, your nurse or doctor should ask you to communicate any symptoms you're feeling during the test. I had a lot of symptoms that I wasn't sure if I should mention because for me they are "normal," like my feet went numb after awhile, but I did say something about it and the nurse later said that it was my blood pooling before my bp dropped. Don't be shy about communicating anything you're feeling because I think that there are things that we don't consider that 'abnormal' to us that actually are symptoms of POTS or NCS!

Unfortunately I did feel really sick and nauseous during mine so I can't give you any comfort there, but having the test was so worth it because I was finally able to know what's been causing me to feel so horrible for so long! Also, as bad as you might feel during it, like others have said, you're being monitored by medical professionals, so at least you're in a safe place.

Good luck to you and I hope you get some answers!

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