Just Had A Horrible Ttt Experience

[MelissaCrystal]

I had my first Tilt Table Test yesterday, and honestly, all I was worried about was that nothing would happen and I'd test negative for POTS/Dysautonomia. I was nervous about that alone---I didn't realize I would have such a painful experience as I did.

I've had experience with passing out in the shower, but it was never as painful as being forced to stand for 5 minutes while my brain was being starved of oxygen. My vision and hearing were completely gone and I was screaming and crying because my brain felt like it was being vacuumed out my forehead. Then they took my blood pressure, found it was dangerously low (like 50/25), and put me down immediately. It felt like it took forever. They told me they were surprised my brain didn't lose consciousness sooner and that usually people pass out long before they start feeling that terrible. I felt like I was dying. I'm sure I would have passed out if they had waited like 5 seconds more.

I feel like a wuss because I haven't seen an experience as bad as mine on these forums. I've put up with feeling horrible since I was a little girl, but I've never had something this painful happen to me before. My whole body was numb, my head was in excruciating pain, I was pouring sweat from ever pore, and my chest was tight and beating as hard and painfully as possible. I also couldn't breathe which really terrified me along with feeling like I was trapped inside my head with no hearing or vision (it went black then I was seeing snow).

Was anyone else's TTT this bad? I mean I'm glad I tested a definite positive, and they recorded crazy BP and HR. It's going to be very helpful for all my doctors, especially the cardiologist who didn't think I had postural hypotension.

They kept me an extra hour at the hospital with an IV, because they had trouble getting my BP back up to a safe level. I had to eat and drink tons, and finally they let me go when I was around 80/60. Normally my bp is 112/80. Walking home was terrible, I should've had someone pick me up. I was so nauseous. I couldn't stop crying and shivering because I felt so traumatized and my body didn't feel good. Today I still feel very nauseous and symptomatic, like my breathing and heart rate isn't quite right, but my BP is fine.

I hope I never have to do that again =( I'd like to hear that this is normal, because in this case I really DON'T want to be special. Can anyone relate to me? :)

[jump]

Hon, I'm so sorry you felt so sick!!!

And, whatever strange comfort it is, I think lots of people here will probably post about similar experiences. Basically a TTT is designed to trigger all your worst POTS or OI or NCS symptoms -- hence, it's designed to make you feel really badly.

I don't faint easily, so, like you, I experienced really intense symptoms without passing out - so they kept me going for way too long. Finally they put me down because my numbers were scary, but for once I wished I'd had a lower fainting threshold just so I could've gotten it over with sooner! I felt sick for a good two days afterward. Just take it easy the next few days until you get back on your feet, and if you have good doctors you shouldn't ever have to do it again!

take care of you,

jump

[bjt22]

Mine dropped and I didn't pass out, but I was so sick going into having it done that the actual tilting didn't feel much worse than what I was normally feeling. It did make me even more unstable for the next day or so, though, and no one warned me of that, and this was back years ago, long before we were all on-line.

[pat57]

I don't have POTS so my TTT is different I suppose. I have OH and NCS. Luckily I even tho I pass out, I don't suffer.

[sarct]

I had a very similar experience as you. I was 10 minutes in and began getting kind of sick. My mouth started watering, I began sweating and feeling nauseus. I started telling them to put me down and they said not till I passed out. Now, I didn't faint, so much as quit. I was screaming and freaking out and then I collapsed, but didn't pass out. Then they put me down, and I was cold and hurting. My whole entire body felt like how a limb feels after it's been asleep. It felt like the blood drained from my whole body and when I went horizontal it all came back. Especially my arms and my stomach. I kept telling them I needed to get up, but they made me lay there till I recovered. I do remember hearing the techs arguing. One said my levels dropped one said no. Then one said I failed, but my report said I passed it. I have no idea what happened that day. It was very traumatic for me.

[ironsc]

MelissaReid,

I'm sorry you had felt so ill on the TTT. I hope you never have to go through that again.

As far as relating, my experience was about as hasty as yours. I was tilted up for about 5 minutes. The instant I was tilted up, my HR went from 70 to 180, then settled into the 150-160 for the duration of the tilt. It was very painful, too. The pain started in the back of my ankle, and moved up the back of my legs to my knee, then up the back of my thigh to my back. My legs started to tremble uncontrollably, while my hearing and vision were dulled, and my face/palms/feet started to tingle/"fuzz". My lower legs started turning color - a mottled mosiac of red, purple and blue, and I started to break out in sweat. That's when they tilted me back down, and my heart rate instantly plummeted from 150's to 40-50's. My blood pressure didn't really change much - it started at 140/100'ish, and it went down by about 30/20.

And you're not a wuss! You made it through the test, and the data will help the doctors provide you with a good treatment option. It was tough, but it will pay off.

Hugs,

Cam

[Amber]

Sorry you had such a rough time. Just wanted to let you know you aren't alone...I can sure relate. I was lucky in that it only took me 9 minutes to pass out but like you they were horrible minutes so I was actually relieved to pass out. I was feeling so nauseaus and sweaty and was breathing really short rapid breaths because of the nausea. Towards the end I couldn't see either. The wierd thing was I was in a semi-concious state and trying to fight passing out but all I could do was move my head so I was sort of thrashing it around. I remember the tech saying "its okay...don't try to fight it." It was hard because you feel so lousy and you panic because you aren't thinking straight. I remember someone on the forums saying that it feels so much worse to have prolonged pre-syncope symptoms than to just pass out and I would agree. Just let me pass out and get it over with! LOL!

By the way, I also had the muscle pain. Like when you stomp on your foot when its really asleep or as the feeling is just coming back. Mine mostly happened after I woke up and was laying on the table. Not fun.

I would have to say though that it was worth it to get the diagnosis.

[ajw4790]

Hi,

Although a TTT is far from the worst testing for most people, for many (most) it is not a fun test! So, I don't think your experience was too uncommon as far as positive TTT's go. For me the test was representative of how I can feel on bad days or a few days symptoms rolled into one experience. Some pass out during the test, some do not. I do think that fighting the passing out and what comes out of that can make one feel the worst. I did not pass out, but felt I was close. They stopped mine after 9 minutes, and by two minutes I had already demonstrated enough symptoms to make a POTS diagnosis. My HR would likely have continued to climb, because it had not peaked. The max change was over 50 bpm. My BP did not change as much though. I also did not stop the Atenolol until the day before (drs offices wouldn't answer my question...). So, BP may have changed more otherwise...

But, it was hard to breathe, heart felt heavy/semi-fast HR, I felt really weak, heavy, and like I couldn't support myself. Hard to keep eyes open, was dizzy, hard to think straight... I felt like crud. But, at least once they had what they needed I wasn't forced to stay tilted!

I hope you recover well! I could not have imagined walking home after... you should have called for a ride!

[HUFFYMCT]

Mine was terrible---bp dropped to O and so did heart rate after 11 minutes---that is right asystole for 12 seconds. I still don't understand how they just sent me home after flat lining!! They just don't get it!

[Michelle F.]

You are NOT a wuss! This was a tough test and you got through it....as difficult as it was and you will hopefully get some help from your doctors in helping treat you. My ttt was not a fun experience in the least. I usually have more presyncope episodes, rather than syncope. I was glad to finally faint after five minutes, which probably were the longest, most uncomfortable five minutes of my life.

Consider yourself to have a badge that many have not earned in this society, by surviving the ttt. BTW, I went to a new cardiologist last week and I was so concerned she would make me re-take the ttt. She said she has found that if a person once tests positive on the ttt, they never want to get on it again. She had all the information she needed and did not want to torture me further.

You done good. Get some rest and take it easy. Couldn't believe you walked after that!

[MightyMouse]

Sounds just like my tilt. I didn't pass out either and my bp went to 50/-- (unreadable). My legs and body were shaking, I was sweating, felt like I was going to vomit, and I felt like gravity had increased and was pulling me down to the center of the earth with all it's might. I was so relieved when they put the table down. Thankfully, like you, my test only lasted a few minutes... feel lucky about that, as I had a friend whose test was more than an hour!!

Maybe you can feel a bit better knowing that despite the horrible test, you got a result that *will* lead you to treatment options, and may also make some of your doctors take you more seriously.

[momofsara]

Melissa, Sara's TTT was also horrible, her B/P dropped to 52/35 after 5 minutes of tilt. and her heart rate increased to 68 beats above baseline. and sinus tachycardia of 150 beats per min. This autonomic test reveals severe orthostatic hypotension and tachycardia of very early onset with abnormal venous pooling and a very slow recovery of the blood pressure post-Tilt. i am getting all this info from the copy of her TTT we were given by her neuro at the time. Soooo just know that you have lots of company in the wuss-mobile------ Many here will relate to your feelings.... Hugs to you---Susan