Clairefmartin

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

I had those symptoms almost daily for many months before cutting gluten out of my diet - have you seen a GI about Celiac or wheat intolerance?? Your symptoms are textbook for it. I was down to eating melons and rice before getting better and dropped 15 pounds. And I actually tested negative with a biopsy for Celiac, but stopped eating it anyways and felt SO much better within a week. If it does happen again, crawling on all fours helps releive the gas (I know it sounds goofy but I swear it works!), and maybe look into some kind of probiotics to help you digest.

That is horrible! I am so sorry you had to go through it - I agree when everyone suggested finding another ER to go to....and tell your cardio what happened, maybe he can pull some strings or will have suggestions. Good luck....I wish there was more we could do

Lulu you are a riot, I love reading your posts. On the topic - YES YES YES I get this feeling when I get tired or am getting ready to go to sleep, and I had such a hard time describing it to my doctor, he sent me for an EEG. Still no results, and of course it didn't happen while they did the EEG, but oh well. It actually kept me up past 3 AM one morning because I was vibrating and rocking internally and would finally drift off to slepp and feel like the "spaceship" had taken off and it would jolt me awake. I literally felt like I had left my body, and it scared the heck out of me. I have only had it a few times not associated with sleep...but like everyone said, try not to freak out and know it will pass and you are not dying (even though it feels that way!). I actaully take Ativan the minute start to feel that way, and it helps. When in doubt, sedation works for me:) JK

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!

I get that all the time! Or I eat a whole meal and right afterwards feel hungry, this happened the other day and I didn't want to eat more cause I just ate a meal. I actually find the same thing as futurehope, I have to stay away from sugary fod later in the evening or I wake up feeeling that extreme hunger/sick feeling the next morning. Good luck!

Thanks - (duh!) I didnt even think of that. I am now reading the Vanderbilt Chronicles

I agree that you should have the cardio admit you and then request the GI, usually passing out is referred to cardio first anyway to make sure you are stable ?? I think. I dunno, I would just go to the ER either way to make sure you are stable, even if they can't address the GI issues right away. I'll be thinking/praying for you - that is scary to deal with living alone Claire

It is my unprofessional and probably inexperienced opinion that if you are passing out more than usual, you should go to the ER. Something is wrong and your body is telling you it needs some extra help. Usually they take passing out seriously in the ER (at least around here), and it would be worse in my opinion to do nothing and end up in worse shape than to chance the ER. Are you home alone or do you have someone helping you?? Hope you feel better.......and good luck

Just wondering what actually goes on at Vanderbilt, I am faxing my app on Monday and am a little confused. I have read on posts here that you go for 2 weeks and they do all your testing for free?? Is that the case? Do they pay for lodging? Any imput would be appreciated...thanks! The Vandy website isn't very clear Claire

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.

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.

Wow me too....i took a work out suppliment with ephedra right before I developed my tachy symptoms, and have told all the doctors about it but they shrug it off. I only took it for a week and then started having symptoms, so I stopped. My husband has been convinced that the pills are what started all this, and feels guilty cause he was using them with no ill effects. I wonder if they are a trigger or a cause?? Glad that stuff is illegal now, it will be interesting to see how many others have gone thru this.

Hope you are feeling better soon - you'll be in my thoughts and prayers....

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

I am constantly cracking! If I sit still at all, when I finally move, I am crack-a-licious

If you tested positive for the antibodies - chances are you have Celiac from what I understand, even if the biopsy is negative. My biopsy was negative as well...and I never got the antibody test because I refuse to start eating gluten again so they would show up. I gotta tell you - I had soooo many symptoms clear up when I stopped eating gluten! It is not as tough as it sounds, most grocery stores have organic sections that carry rice and gluten free substitues for many foods. They say people that eat gluten free live 5-10 years longer because they remove the chemicals from their diet I think diet plays SUCH a huge role in health, I wish more doctors would get with the program so we don't have to figure this all out ourselves!

Thanks everyone, I was not tested for POTS specifically last time, just vaso syncope (forgot how to spell it), which I tested negative for because I didn't faint. My doctor never mentioned POTS, I was not aware it existed back then. I have been off Toprol for over a year, thank God cause it made my BP so low I felt horrible, so my test Friday should answer some questions. Have a good night!

I'm in Virginia Beach, which is about 1.5 hours away...I avent been officially diagnosed yet, but seem to share the same symptoms as everyone. Let me know how i can help.

It was 30 BPM exactly in 10 minutes, 101-131, the second time they inclined me. That was also with 50 mg of Torprol XL I was taking at the time. I guess I have POTS? I dunno, I don't want to self DX. I am faxing it to the UVA Dr I'm going to see to make sure he wants me to have another TTT as scheduled this Friday. Is blood pressure an issue with POTS when standing? The TTT said I don't have VS, but I'm wondering why I get so close to blacking out sometimes when I stand. And my heart rate seems to go way up while laying flat as well....is that POTS or something else? I have heard others talk about their heart pounding at night before bed, mine does almost evey night. I'm confused. Thanks,

And by the way - this was done after they started me on 50mg ToprolXL. Figured that may affect the test.

Hi everyone- I just got a faxxed copy of my TTT results and am confused as to what qualifies as POTS. While supine, HR was 72, when they raised me to 70 degrees, it went up to 85 the first time. THen I was put in the supine position again and it was 75,83, 97, 80, and 100 (in 5 minute intervals) all while laying down. Then they raised me to 70 degrees and my HR was 101, 118, 131, and 127 (at 5 minute intervals). Then 70 degrees to supine, HR was 81, then finally 77. My blood pressure swung from 117/49 to 95/56 to when they stood me up, then it went up while I was upright and pretty much stayed up, even shooting up to 142/56 the second time they put me at 70 degrees. So I have no clue what all this means - to have POTS, I know you need a 30 BPM increase, but is there a time limit?? Could someone explain or give their thoughts.....I am schedule for another TTT Friday, so it will be interesting to see how they compare. Thanks!

I have a TTT coming up on Friday....and I just requested the report from my first one taken almost 4 years ago, which came out negative, but after reading all this I want to see it myself and take it to the Dr at UVA. Sorry you had to go through all that - it really sounds like they did it wrong, mine was in a dark white room that was very quiet. Good luck!

I get the same exact sensations Rhonda, and it usually is my left side and includes my eye feeling week or droopy, and my vision getts fuzzy. I have major tremor feelings too...but they are rarely visible, but I FEEL them! I had an EEG last week, still waiting to hear what's up, it probably came back normal as usual though so I am not getting my hopes up. I am going to see en eye doctor this week to rule out MS, my PCP says that even though my MRI looks ok early MS can still be present. I'll let you know..... Good luck!

Good luck! I always hate the proving myself feeling....I actually have a written list and log of symptoms and tests now that I can hand over. How pathetic!! Anyways......i'll be thinking of you