ellen Posted January 19, 2008 Report Share Posted January 19, 2008 After 9 years on florinef, I asked my PCP if I could possibly switch to another treatment, maybe an ssri, because of the long-term side effects of florinef. She sent me back to the cardiac EP who diagnosed me 3 years ago with POTS based on my poor man's tilt table results, in which my heat rate increased more than 30 beats upon standing. Now he wants to do a Tilt table test on me (in his office) but I prefer not to put my body through that kind of trauma. When I expressed this concern, I was told by the girl(assistant), "oh, there's no danger, and it can give us more information about what is going on with you."My question is what, if any, info can they get from a tilt table test other than yes or no to the diagnosis of POTS (and even that is inconclusive). I just don't want to go through an unnecessary test which sounds awfully unpleasant, from the reports on this forum. Is this doc just looking to gather info for his next study, or is there some real value to the ttt that can help in my treatment? I really appreciate the insight from the members of this forum. Quote Link to comment Share on other sites More sharing options...
flop Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Ellen,I know that several members here have posted negative stories about their experiences with TTT. Personally I have had several tilt tests, I usually feel a bit sick and dizzy if my heart rate goes very fast and I often feel tired afterwards. The symptoms I get on TTT are pretty much the same as I get from just standing up for too long.The reason that the doctors are keen to do tilt tests is that they can monitor and record your blood pressure and heart rate continuously throughout the test, rather than just pushing the button a few times on a BP machine whilst you are standing in their office.The information they get can tell if your blood pressure drops as well as your heart going fast. The results of the TTT may help the doctor to decide which type of treatment is right for you. If your BP goes very low then perhaps midodrine would be a good med, if your BP is good but your heart is very fast then perhaps a beta-blocker would suit you better. The other option would be for your doctor to guess which med to try first and may mean trying more types of med before finding the best one. I'm not saying that a TTT will get you exactly the right med and dose the first time but it should help the doctor in their decisions.Don't forget that if you do feel yucky whilst being tilted you can always say that you want to come down and stop the test. You can also ask for a nurse to be in the room with you as well as the dr or tech doing the TTT.feel free to PM me if you want more information.Flop Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 20, 2008 Report Share Posted January 20, 2008 Hi!I too think that TTT's have their time and place and can give you and your dr. useful information. The poor mans tilt table test is a good screening tool, but it does not give you the details that you/your dr. may need for treatment. With this test they can one, see your response, monitor whether or not you pass out or have other symptoms, the can take they HR throughout the test (which is normally longer then the other way), they can also watch your BP and its response to everything which is hard to observe otherwise. This way they can know if they should treat for high or low BP etc, along with the high HR.Many people do describe difficult tests, but I think for many they found it worth it, and not much worse then what they can experience on a daily basis. Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 20, 2008 Report Share Posted January 20, 2008 I have had three in my ANS work ups. The first was POTS dx. The second showed more heart funkyness and POTS and they had to stop it. The third which was just last February, and I thought, why bother don't we have enough information? Well, it captured some symptoms I tried to explain but never could...a PSVT. This is something that happened after 8 minutes on the ttt, then they stopped the test. I was uncompressed and standing and demonstrating, unknowingly, what living with POTS is like for me at times. So I vote, if you need more or deeper information, go for the ttt.tearose Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 21, 2008 Report Share Posted January 21, 2008 Hi,It is very rare that a patient decompentiate after one TTT. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 21, 2008 Report Share Posted January 21, 2008 Ernie,What do you mean have symptoms during your first TTT? I had symptoms and showed POTS with the first one. Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 21, 2008 Report Share Posted January 21, 2008 Hi ajw4055,What I am saying is that it is very rare that someone will aggravate their POTS or NCS forever because they did a TTT. After a few days, weeks or months they will get back to baseline. So, the person has to decide the pros and cons of doing a TTT. For me, it takes me 4 weeks to get back to baseline. The information I got from it was well worth it. I would do it again. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 21, 2008 Report Share Posted January 21, 2008 Oh, I guess some have longer term symptoms after the ttt than I am aware of.I will clarify that after my first two "Pots" dx ttt's I returned to my "normal function" within a few hours of those ttt. After the most recent one, the one that showed the PSVT, I felt ill for about 20 hours afterwards. I was unable to walk as straight, I had to lean when I walked, I felt more sickly, fatigued and symptomatic. It did go away and to me, it showed to the medical team what I feel my "exercise intolerance" is like.So, it is not good to bring on such PSVT's but the TTT lab is a safe and controlled environment. I suffered no lasting damage and feel the additional info was important.tearose Quote Link to comment Share on other sites More sharing options...
ellen Posted January 21, 2008 Author Report Share Posted January 21, 2008 Thankyou Tearose, Ernie, Aj, and Flop- I feel much better with everyone's (unanimous) input about taking the test. I trust the forum more than another physician as a 'second opinion'! I have a ttt scheduled for Feb 7 and will let you know how it goes. NO water for 4 hours before is a concern, but they allow all my daily meds. Quote Link to comment Share on other sites More sharing options...
flop Posted January 21, 2008 Report Share Posted January 21, 2008 Ellen,I would double check with the doctor who requested the TTT about having no water before the tilt. My first ever ttt I was nil-by-mouth for 6 hours before the test, but the more recent ones I have been allowed to have water just not food in the hours before the test.If the doctor wants you to have no water, make sure that you drink plenty the day before the test and take plenty of water and/or gatorade with you and drink lots after the test before attempting to go home.Another tip would be to get someone else to drive you to the test and stay with you at home for a while afterwards - just helps if you do feel wiped out for a few hours to have someone there to fetch you drinks and make sure you are ok getting to the bathroom etc. Plan to rest after the ttt and the next day too then it shouldn't be too much of a strain.Good luck and let us know how everything goes,Flop Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 22, 2008 Report Share Posted January 22, 2008 My TTT was no big deal. In fact, I just got bored. Near the end, I felt a little lightheaded, but that was it. No problem.Amy Quote Link to comment Share on other sites More sharing options...
ellen Posted January 23, 2008 Author Report Share Posted January 23, 2008 Thankyou All for your encouragement. I will let you know how it goes. -Ellen Quote Link to comment Share on other sites More sharing options...
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