Jacquie802 Posted December 5, 2005 Report Share Posted December 5, 2005 Okay so I had the TTT today and during the test it didn't seem like my bp was too bad or even fluctuated(watched the monitor, ) that much but I felt the dizziness,sweats, etc. My heart rate was high at some points, but I am so confused. I don't think it was a posittive test but why did I experience the symptoms. My bp today wasn't bad at all, but the other day I went to the doctor and it was very low, so what's the deal?? I really just want to know what's wrong with me Thanks, Jacquie*I did have a very handsome guy do the test Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 5, 2005 Report Share Posted December 5, 2005 I had a wierd TTT also, the doc said that it was inconclusive. My b/p was low and even lower, but I had absolutly no symptoms what so ever. Wish I knew also. Maybe I was having a good day, I dont know. It seems like everytime that we think ok this test will tell us exactly what is wrong, it comes back negative or inconclusive. I too am very confused. Which confusion is normal for me these days. Hope you and your docs figure it out. I think the worse thing is not knowing, and what is even worse is when they give you partial diagnosis, or the maybes. Or you think that they have said one thing and they say that they didnt say that so now my daughter always goes back in the exam room with me. So I wont have to depend on just me hearing what they are saying. Hope they find out what is wrong with you soon, it is so frustrating I know, I have only been going through this for just over a year,and some days I think that it is going to drive me crazy. All I can say is just to try and hang in there, hopefully your answers will come soon. Im sending you one great big (((HUG))) to help cheer you up. Mrs. GlassOkay so I had the TTT today and during the test it didn't seem like my bp was too bad or even fluctuated(watched the monitor, ) that much but I felt the dizziness,sweats, etc. My heart rate was high at some points, but I am so confused. I don't think it was a posittive test but why did I experience the symptoms. My bp today wasn't bad at all, but the other day I went to the doctor and it was very low, so what's the deal?? I really just want to know what's wrong with me Thanks, Jacquie*I did have a very handsome guy do the test Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 5, 2005 Report Share Posted December 5, 2005 Were you off of all medications? You cannot be on meds (florinef, beta blockers, blood pressure meds, etc.) for the test to be accurate. I wasn't even allowed to take my allergy and gi meds. Nina Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 6, 2005 Author Report Share Posted December 6, 2005 Hi, nope I was still on Toprol because when they try to stop it I get sick and go to ER, they never told me to stop taking it either. I am just really agravated, it's almost like I am crazy or something....I thought I was gonna get answers but I guess not today. I see my neurologist the 14th so who knows...I really just want to cry cuz I felt soo sick the other day I was sure today they would see it for themselves...guess not Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 6, 2005 Report Share Posted December 6, 2005 Hi,You might have been having a good day.I think your med might have influenced the test.I remember once I did a TTT, had no symptom and I was sure to make it throught. I woke up I was flat on the TTT and the doctor told me my BP went from 200/140 to 60/40 is 5 seconds. I did not have any warning whatsoever. The doctor said: "You got caught off guard!". I said: "I sure did!". I am glad it happened this way because I often tell doctors that I don't always get warnings before hitting the floor and this one proved it.Wait until you see your doc. You might get a surprise. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 6, 2005 Report Share Posted December 6, 2005 The tilt table results are not likely to be valid if you were on toprol--sorry. The medication would have masked what your body would do unmedicated.Nina Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 6, 2005 Author Report Share Posted December 6, 2005 I didn't take my Toprol XL today, but I took it last night, I wonder if it would still be in my system since it is time released. I just took today's dose a little while ago.... Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 6, 2005 Report Share Posted December 6, 2005 Hi,I am pretty sure part of it was in your system during the TTT. You shoudl mention it to your doctor when you see him and maybe get a repeat. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 6, 2005 Report Share Posted December 6, 2005 when I was at NIH, I had to be off of everything for 14 days. Nina Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 6, 2005 Author Report Share Posted December 6, 2005 14 DAYS...OUCH, how could you do that? If I'm off my bb for more than a day my heart rate shoots through the roof!!! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 6, 2005 Report Share Posted December 6, 2005 i had to be off of everything for a number of days prior to testing too...both locally & for the vanderbilt research. it wasn't fun (i was completely non-functional, i.e. bedridden) but is the only way to really get accurate testing. the going off meds is almost worse than a lot of the testing (in my opinion).i've heard of people being allowed to stay on some more "peripheral" meds, i.e. GI stuff, but never a beta-blocker. hope you get some clarity to things soon... melissa Quote Link to comment Share on other sites More sharing options...
wareagle Posted December 6, 2005 Report Share Posted December 6, 2005 Hey Jacquie..just wanted to mention that your bp doesn't have to be low or high to have a dx. of POTS..it's all about your heartrate. It has to increase by 30 bpm. upon rising to an upright position..or I believe reach 120 bpm..this is what they are supposed to use to dx. POTS specifically. As far as you haveing symptoms whithout bp issues I have it all the time...It does not really matter for my body weather I'm laying down, sitting, or standing..I can feel "icky" at any time. You need to keep in mind that although the main symptoms used to define or dx. POTS (heartrate).. are not the only ones we have..there for we can have a variety of other things going on and contributing to the dizziness and sweating you experienced..such as your sympathetic NS going hooky on you...hormones influencing your body..dehydration ect. So..my point is that you can have a semi- normal heart rate and bp and STILL have symptoms of autonomic dysfunction..at leaste I know I do. If this is wrong then someone feel free to correct me!! I feel it's more important that doctor look at the WHOLE picture and not just one test to reach a dx...Unfortunately many simply don't take the time. The "specialist" that originally intreperated my TTT..said I had an "a-typical anxiety disorder"..you want to know why? Because apparently on this 10 minute tilt they did by heartrate only increased by 26 bpm...and I didn't stay at 120...my bp was in the low range but didn't fluctuate much........he ignored all my other symptoms..and I'm telling you I read like a POTS text book. You must be your own advocate..of anyone on this earth YOU know what's going on inside your own body and if you feel unsatisfied with the answers you are given regarding these tests then seek other opinions!! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 6, 2005 Author Report Share Posted December 6, 2005 Thanks everyone for all your advice, etc. I appreciate it very much. I got the results back from the vestibular testing I had to get and it says that the test I did have "suggests a balance disturbance of unclear origin." So I am sure that doesn't help along with the POTS. Maybe that was why I was dizzy during certain points of the TTT. Anyhow I am going to Mass Eye and Ear in Jan try the other part of the test I couldn't do (instead of having me in a small pitch black room, im clastrophobic, they are gonna just put dark goggles over my eyes) and then in March I see the actual doctor...atleast I am going to have some type of results. I see my neurologist Dec 14th and my cardiologist Dec 15th so I am going to mention about the bb. Maybe they are gonna do the test again...one good thing would be that cute boy who did it! That was one positive thing from the TTT!! Quote Link to comment Share on other sites More sharing options...
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