AmberK Posted May 10, 2012 Report Share Posted May 10, 2012 Well, I had the tilt table test on tuesday. The first ten minutes were awful, and although I was feeling calm by the time the test arrived, my body was shaking uncontrollably, like my body had gone into shock. After that, I was very dizzy and kept having trouble with my legs, and my knees buckled a couple of times. I was strapped in but my legs weren't strapped so was able to move a bit. I shuffled about and straightened up again, then the dizziness restarted again. Eventually, at 32 minutes, I fainted, and the test was stopped.Afterwards, I was told that my heart rate was fairly high throughout, although they didn't give me the 15 minutes laying down before tilting me up, so I wonder if this didn't enable them to get a resting heart rate first. At the moment of fainting, my heart rate shot up, and although my blood pressure dropped, it wasn't a major drop.My consultant only works at that hospital one day a month, and I received my next appointment date with him... July 26th! After an 18 year wait, I know a couple of months shouldn't make much difference, but it's already an agonising wait. I hassled the nurses a bit to tell me, but all they would say is that it looks likely to be POTS, but that they weren't allowed to diagnose. They confirmed that I definitely fainted, and that my heart rate shot up, but didn't tell me by how many beats per minute.More waiting, aaaaah!! I'm going to phone the consultant's secretary tomorrow to see if she can tell me anything, but at the same time I'm wary of coming across as a pain in the bum! Thanks for all of your support on my previous post, it's much appreciated. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 11, 2012 Report Share Posted May 11, 2012 So sorry you had to go through this without an immediate answer....Are you on any medication? That sounds insane to have to wait that long for a diagnosis!! That just doesn't make any sense to me. I'll pray for you, too...Hope you get some answers... Quote Link to comment Share on other sites More sharing options...
AmberK Posted May 12, 2012 Author Report Share Posted May 12, 2012 Thanks Kimbellgirl. I'm not on any medication for the POTS-type symptoms, just for a thyroid problem. I've tried various things over the 18 years that I've been ill, but without a diagnosis they don't really know where to start with treatment. I finally feel like I'm getting very close to finally finding out the answers though, so this last bit of waiting is making me impatient! I phoned the hospital today though, and asked if they could let me know before my appointment, as two months is so long to wait. The consultants secretary was lovely, and she's promised to phone me back on tuesday with the results! Fingers crossed...! Thanks for your reply, Kimbellgirl Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 12, 2012 Report Share Posted May 12, 2012 Just knowing will bring relief, but you also need treatment. I went 13 years without diagnosis, and it seemed like an eternity!! I was an RN, so I was medically frustrated as well, even going to the right doctors wasn't enough early on because they weren't aware of dysautonomia!! Hang in there. Treatment helps:) Quote Link to comment Share on other sites More sharing options...
AmberK Posted May 15, 2012 Author Report Share Posted May 15, 2012 I don't know about POTS, but I'm certainly going potty with the waiting! I didn't hear from the hospital as promised, so I phoned today and have now been told that it's still in his 'in' tray, and I will hopefully get a diagnosis or some sort of answer later this week. This forum is really helping during the wait though, it reminds me that no matter whether it turns out to be POTS or not, I'm not alone Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 16, 2012 Report Share Posted May 16, 2012 please keep us posted. Quote Link to comment Share on other sites More sharing options...
AmberK Posted May 19, 2012 Author Report Share Posted May 19, 2012 Thanks Anoj.Well, after they kept changing when I would finally get my results, I eventually received them yesterday, although it's left me more confused than ever. I was told it wasn't "classic POTS" as although my heart rate was high, it was pretty high throughout, so it didn't get the 30+ points needed for a diagnosis. However, as they didn't take a resting heart rate, I'm baffled as to what they compared it with, unless they are comparing it from the first minute of the test but I was upright then anyway! Has anyone else had a TTT without the laying down bit first? Can it still be accurate without it? I've waited so long for this test, and the consultant agreed that my symptoms fit into POTS accurately, but he said that without the 30+ points I can't get the diagnosis, and also because I fainted after the initial 10 minute slot. Umm, if only the initial 10 minutes count in the test, why the **** did I put my body through all of that after the first 10 minutes?!!I am very angry as I don't feel the test was done properly, but also very confused as it really looked like after 18 years of waiting, I was finally about to find out what was wrong with me all this time. Now I've been told that "It might be POTS, it might not." The uncertainty feels agonising after this long, and finally thought it was about to all become clear. He said he is going to try me on some medications (I don't know if they're medications for POTS, but I assume so. He didn't think to tell me what medications they are, and as I haven't been able to speak to him directly, I'm left with lots of unanswered questions) that are likely to have side effects. I'm pleased they will actually be trying something, but am so gutted that I've been told it may or may not be POTS, as if it was, at least I could finally get my head around what is happening to my body and start to understand the mechanisms of it all if nothing else. I'm sorry that this post is a negative one. I'm rarely negative, but today I feel so gutted and shocked after having the TTT, it being horrendous and my body went through ****, the nurses told me after I fainted that it looked like POTS and it looked like my 18 years+ wait was finally over, and then after almost a further 2 week wait after the TTT, I'm basically told they still don't know. I feel like the stuffing has been knocked out of me. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 19, 2012 Report Share Posted May 19, 2012 So sorry Amber...praying for a diagnosis for you... Medication could help, and make you feel better, so don't loose hope. It's not the label, as much as feeling the best that you can be!! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted May 19, 2012 Report Share Posted May 19, 2012 I feel for you, Amber...It's absolutely ridiculous to me that they didn't do a supine measurement - do they understand what POTS is?!?!? I wonder if there is some detailed info on proper TT Testing that you could print off from the internet to show them. Sorry you had to go through all of that and still not have it confirmed. Quote Link to comment Share on other sites More sharing options...
AmberK Posted May 21, 2012 Author Report Share Posted May 21, 2012 Thanks Kimbelgirl and AllAboutPeace. Kimbellgirl, I agree that it's not all about the label. However, if I can find out what is wrong with my body, I can finally begin to understand the mechanisms behind what's causing it. It's looking like it is still likely to be POTS, and I haven't been given a "no", but I'm not sure whether to voice my concerns about the way the test was conducted, as they may see me as a problem patient. The symptoms can be so frightening sometimes, that if I could find out what happens to my body inside when I'm feeling this way, and indeed why, then it would go a long way to helping. Obviously, the main thing is getting improvement, but that would be a lot easier to do if I knew what it was that's causing it AllAboutPeace, I'm so pleased to hear you say that. I have wondered over this weekend if maybe there is another way of doing the TTT and by somehow guessing the resting heart rate The fact that the nurse freaked out so much when I fainted, I think shows how rarely they do the test there. I'm glad that I haven't been told that it's definitely not POTS, but to be in the same uncertain position after going through all of that, has baffled me a bit. Still, one thing they do have now is my body was fully monitored while I fainted and they can see it for themselves, which is a step forward than I've had before, and hopefully will mean that I wont be pushed back towards an anxiety diagnosis again. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted May 21, 2012 Report Share Posted May 21, 2012 Hi Amber, I agree with AllAboutPeace that it's goofy they didn't have you laying down first. It doesn't make much sense. At Mayo I just had the autonomic reflex screen instead of the full blown TTT offered in the cardiology department. It's only a 10 min TTT but they have you laying down for a good 15 min first until they get steady readings for bp and hr. I agree that you may want to print off info and show it to them. Sorry it was such a frustrating experience for you! Good luck with everything! Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 22, 2012 Report Share Posted May 22, 2012 amber, i just wanted to offer support and say i understand your frustrations. my personal journey with POTS/dysautonomia has been a long one (probably like many here). my first TTT didn't show much either, other than i near fainted and my BP dropped. the cardio was very well-meaning, but his knowledge was limited. he treated me under certain assumptions for over a year until i found my present doctor, who performed another TTT and gave me a better diagnosis, nearly 2 years later. i just wanted to say hang in there. i truly understand how frustrating it is and want you to know that sometimes it takes a little more time with the journey, and not to give up. keep searching for answers! Quote Link to comment Share on other sites More sharing options...
AmberK Posted May 22, 2012 Author Report Share Posted May 22, 2012 Thanks so much everyone, this forum keeps me sane (well, as sane as I've ever been ). I really appreciate the replies. Quote Link to comment Share on other sites More sharing options...
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