cupcakemomma5 Posted March 14, 2013 Report Share Posted March 14, 2013 Just curious to see if when you had the ttt done were you off your meds or on them.Was dx with POTS in Aug after numerous testing, and was put on atenol and florinef, and then was sent for QSART and TTT and Dr. Stated inconclusive results due to meds, and probably just anxiety! I am soooo confused, he wanted me on the meds to see how body responded on them and Now I am back to square one. He didn't even listen to my past history, I received his note he was forwarding bck to my gp and more than half of what is written is false information. Now what? So my main question is if anyone was on their meds during the ttt or were you requested to be off them for 48hrs prior to testing. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 14, 2013 Report Share Posted March 14, 2013 The first ttt I had, the one that confirmed my POTS diagnosis was completely off meds - I was told back then that meds would have interfered with the results of the test.The second test - on meds - showed no sign of POTS. I know my dr wanted to see if the meds are working for me.The other thing - from experience, anxiety does tend to play a role as well. I remember freaking out the first time I saw myself strapped to the table, so my resting HR was pretty high and I fainted 6 min or so into the test (and I never fainted before).Was this your first ttt, or did your dr order a second test to see if the meds work - like mine did?The problem with 'fake' info in the medical reports is something I've dealt with as well. I did mention the discrepancies to my dr and he seemed willing to make the changes - whether he did or not...I have no clue, the problem is - all the other drs I've seen most-likely considered that info as valid, so trying to fix these types of errors is a huge battle.Sorry things aren't really working out yet...it's not like you - or any of us for that fact - can afford to waste any time. It's hard when you have to go through so much to get some decent answers.Hugs,Alex Quote Link to comment Share on other sites More sharing options...
Racer Posted March 14, 2013 Report Share Posted March 14, 2013 I was not on meds, actually my doctor used the TTT to decide the type of med to use. I fainted (the test was positive), but I am certain that if I was on midodrine during it, the results would have been normal.What type of doctor are you seeing? I go to a cardiac electrophysiologist (EP). There seems to be a big difference in knowledge between most gp, general cardiologist, and a EP. My experience was that the EP was only one knowledgeable about what was really going on. Quote Link to comment Share on other sites More sharing options...
Joann Posted March 14, 2013 Report Share Posted March 14, 2013 I actually was on my meds when I had the TTT. My doctor didn't want me to have to go through episodes for it. She said she would account for the meds.She said the TTT indicated POTS, but wasn't going to say for sure it was hyper or not. I did have raise in heart rate and while I wondered how it would test on meds, I still expected it to show the bp increase that is typical at home. It showed my bp going up but also going up and down!I have recently had Dr. Shields at Cleveland review the results and he wants to re-do the test. He said there were two schools of thought. 1. off meds is the pure-ist method and 2. if you have it will show regardless of meds. He said my previous TTT showed irregularities of heart rthym and bp, but wasn't sure what type of autonomic problem it was.He would ideally like me off meds for the next test, but I told him I didn't think I would be able to function and get to Cleveland off them. The autonomic clinic is supposed to call me prior to test to see what will be best. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 14, 2013 Report Share Posted March 14, 2013 Yes, my son was taken off his meds. for 24-48 hours when he was tested at MAYO. Hang in there. The testing will be worth it. Quote Link to comment Share on other sites More sharing options...
Enid Posted March 14, 2013 Report Share Posted March 14, 2013 HiI had previously been on monocor for tachycardia (prescribed by a cardiologist) and amitryptiline (prescribed by an ENT for vestibular migraine prevention) the first time I saw the neurologist then went off it for I think at least a couple of weeks before the tilt table test. Also no caffeine in the a.m. and only a light breakfast Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted March 15, 2013 Author Report Share Posted March 15, 2013 @ Enid, we saw the same and he stated to come in on my meds. Then the test were inconclusive because of them!I was NOT a fan of him at all! He spoke to me for 3 minutes, arrogant bumm.....lolNow I am waiting for hard copies of all the test etc and see where to go from there.nd he questioned why I was not on midodrine which is the normal drug, and so I told him that midodrine bottomed out my bp and my hr went to 200. So while in hospital they had me come off it. He told me that great you'd have to be difficult case. No word of a lie, I left his office in tears just how blah I felt, and now for the best part, I am having a reaction to the solution they use for the QSART, and have hives from head to toe...All I can do is laugh! Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted March 15, 2013 Author Report Share Posted March 15, 2013 The first ttt I had, the one that confirmed my POTS diagnosis was completely off meds - I was told back then that meds would have interfered with the results of the test.The second test - on meds - showed no sign of POTS. I know my dr wanted to see if the meds are working for me.The other thing - from experience, anxiety does tend to play a role as well. I remember freaking out the first time I saw myself strapped to the table, so my resting HR was pretty high and I fainted 6 min or so into the test (and I never fainted before).Was this your first ttt, or did your dr order a second test to see if the meds work - like mine did?The problem with 'fake' info in the medical reports is something I've dealt with as well. I did mention the discrepancies to my dr and he seemed willing to make the changes - whether he did or not...I have no clue, the problem is - all the other drs I've seen most-likely considered that info as valid, so trying to fix these types of errors is a huge battle.Sorry things aren't really working out yet...it's not like you - or any of us for that fact - can afford to waste any time. It's hard when you have to go through so much to get some decent answers.Hugs,AlexI Alex, yeah it was my first ttt done, so I was expecting some issues but not like these. And he stated that fainting is not a POTS symptom.....so I had a great time with the whole kit and kaboodle!Thx for the hugs : ) Quote Link to comment Share on other sites More sharing options...
seattle chris Posted March 15, 2013 Report Share Posted March 15, 2013 I have done two tests on meds (beta blocker, florinef) and one off. The test off the meds was miserable (felt crappy going into the testing room) for me but it yielded valuable information - indicated that I probably don't have POTS, neurocardiogenic syncope or a baroreflex failure. Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted March 16, 2013 Author Report Share Posted March 16, 2013 Well now I am going to wait and hopefully someone else will have answers for me.I see my gp within the next 2 weeks and cardiologist in a month. Maybe I should get a 2nd opinion with the doctor in my province...Well back to square one!Thank you everyone for responding : ) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 16, 2013 Report Share Posted March 16, 2013 What is the point of medicating you for a diagnostic tilt table test? its counterintuitive. What were your QSART results? They say that skin biospy is better Quote Link to comment Share on other sites More sharing options...
issie Posted March 16, 2013 Report Share Posted March 16, 2013 QSART determines more things though. It helps determine your ability to sweat and that is indicative of nerve function. Then with the biopsy the actual nerve fibers are looked at. You need both.I've always gone off all my meds for any of my autonomic testing ---whatever they may be. I want to be at my baseline for testing, otherwise you get whatever level your meds take you to. I give myself several weeks to a month to be off everything before I have test done. It's not fun coming off of everything and I've done it several times.Issie Quote Link to comment Share on other sites More sharing options...
Libby Posted March 16, 2013 Report Share Posted March 16, 2013 My GP and the testing center told me to stay on the meds...but I went off them any way. From what I'd read about ttt, I didn't want to go through it twice. And I didn't want an inconclusive ttt in my records. It's enough of an uphill battle sometimes without giving a skeptical doc ammunition against you. Hr jumped 60 bpm immediately, passed out after 15 minutes. The cardio at the testing center diagnosed me with IST and NMS, but I took the results to my new (at the time) POTS neuro that I referred myself to and she was quick to change IST to POTS. Side note, while fainting is not necessary to diagnose POTS, there have been at least two studies that I can recall which indicate a higher prevalence of NMS among people w POTS. Dr. Grubb was an author on one of the papers, I know. Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted March 16, 2013 Author Report Share Posted March 16, 2013 @ rama. My QSart was diminished in lower extremities, and I had syncope within 6 minutes of the ttt. So I don't know. I have an appointment on the 26 and hopefully my gp will agree with me and we will see another doctor.The tech asked since when was i dx, and I told her Aug. She laughed and said oh you're new to the game.....what the heck! Quote Link to comment Share on other sites More sharing options...
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