AmberK Posted June 12, 2012 Report Share Posted June 12, 2012 Hi, I posted here a couple of months ago but can't seem to find my thread so am starting a new one. Basically, I will have been ill for 19 years this August, and have been diagnosed with M.E. Whilst trying to find what's causing my main and most debilitating symptoms which don't fit into the "M.E" category, I've been repeatedly diagnosed with anxiety. Until now. I had a TTT but no resting heart rate was taken. My legs weren't strapped in and as my muscles are weak my knees kept buckling during the test. I fainted at 32 minutes into the test, and a week later was told that it didn't look like "classic POTS". Today, after a month of waiting since the TTT, I finally got my results. I assume that the number they use for my "resting" heart rate is from sometime in the period when I was hooked up to monitors whilst sitting up, then told to lay down, then was immediately tilted, chatting with the nurse throughout until the moment of tilt...My results:"Resting" heart rate: 105 bpm.9 minutes into the test: 126 bpm.When I fainted at 32 minutes, my BP "significantly" dropped, but no measurement was given.The consultant has stated to my Dr that this could be "some mild form of something between the spectrum of POTS and innappropriate sinus tachycardia" but isn't classic POTS due to the raise in BP not being 30 bpm or more.Am I right in thinking that even without the proper resting heart rate, this should have been a diagnosis of POTS? Any advice would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 12, 2012 Author Report Share Posted June 12, 2012 Sorry, that second from last line should read "the raise in heart rate" not "the raise in BP". Quote Link to comment Share on other sites More sharing options...
puppylove Posted June 12, 2012 Report Share Posted June 12, 2012 I pretty sure the criteria for POTS is an increase in hr thirty beats and/OR a standing heart rate of 120+ bpm. Also, my doctor made me lie down for thirty minutes prior to the test to get an accurate resting hr. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 12, 2012 Report Share Posted June 12, 2012 If your HR stayed over 120 bpm for more than 10 mins, then yes that qualifies as POTS. Also, with a sudden drop in BP, you may also have Neurogenic Cardiac Syncope (NCS), which you can have in conjunction with POTS. Both are forms of orthostatic intoloerance. When I had my TTT, the attending cardiologist told me I didn't have anything and that's what his report said that he sent to my cardio. BUt, the nurses kept calling him in the room because at 3 mins., my HR shot up to 145 (from resting 68) and stayed there for the whole test and they were concerned. So, I cross-referenced TTT and tachycardia in google and found POTS. I asked my own cardio to review the actual test, not just the report, to determine a dx. SHe called me a week later and said I had POTS for sure. My point being, you may want to get a second opinion on the interpretation of your test. Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 12, 2012 Author Report Share Posted June 12, 2012 Thank you Puppylove and Katybug.Puppylove, that was as I understood it. Katybug, I hadn't heard that it has to be for a period of 10 minutes or more, do you know where I can find more info' about that please? I have no idea if mine was for more than 10 minutes, just that it was within the first 10 minutes. Quote Link to comment Share on other sites More sharing options...
Chaos Posted June 13, 2012 Report Share Posted June 13, 2012 My understanding, from Grubb's articles and several other sources is that it's a HR of 120 or greater at any time during the first 10 minutes of standing (or the 30 BPM increase as Puppylove noted).Seems like a "resting" HR of 105 looks suspicious....as in they didn't leave you lying down long enough. Do you normally have HR that high when you're resting? If so that might make it look more like inappropriate sinus tachycardia.I think Katybug is right in her advice for you to get a copy of the actual study and get a second opinion. Although if they didn't do the study correctly, it may just get you another wrong opinion. Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 13, 2012 Report Share Posted June 13, 2012 Definitely get a second read on that - and, if you can, try to take your resting pulse (maybe on waking up in the morning before you sit up to duplicate the effect of lying down for so long) several times to get an idea of what it normally is so that whoever else looks at it can get a better idea of what you look like normally :^) Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 13, 2012 Author Report Share Posted June 13, 2012 Thanks so much for your replies. My resting heart rate is usually around 80 bpm, and during the test I was laying down for seconds rather than minutes. I was miffed at the time, but assumed the nurse knew what she was doing and so didn't mention it. I get the impression that the test had been done very rarely, due to the numerous problems I noted: I wasn't told to prepare in any way for the test (no fasting, for example), my legs weren't strapped and the nurse kept getting irriated when my legs buckled, which I assume brought the blood back up every time I moved, and when I fainted the nurse apparently set the alarm off and I came round to a room absolutely packed with panicking nurses! I would have thought they would be prepared for a faint on a TTT It's so frustrating, as after an almost 19 year wait to find out what's wrong with me, I feel like we may be finally at the answer,... but now I'm left at the edge of a possible diagnosis, with people that don't seem to know much about the condition. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 13, 2012 Report Share Posted June 13, 2012 i feel for you. that's a long time to wait for answers, and then, it doesn't seem like you have much answers now?the first TTT i had done was by a well-meaning cardiologist who didn't know all of the specifics of dysautonomia. to him, the results were either "positive" or "negative." it was either faint or no faint. not much info there! fast forward to 2 years later, and i found a doc who did blood tests for catecholamines, and i now have much better answers. when the old doc sent the new doc the results of my previous TTT, he didn't even send the HR or BP numbers! it just said that my TTT was "positive," and my new doc sorta laughed.i am assuming that you don't live near a proper center/doctor or that you are unable to travel. maybe you just have to work with what you've got, which is what i did for a long time. you can try the main medications, which i think are: Florinef, Midodrine, beta blockers and SSRIs. beyond that, i really don't know what else there is. sometimes i think even the docs at the extra good super awesome places like vanderbilt can only do so much for us. wouldn't it be so nice if we could just be fixed!?!perhaps your best option right now is to experiment with medications and try to find what works best. the most important thing is if your doctor(s) are wiling to experiment a little. i was so lucky that my first doc was compassionate and willing to try a few different things with me. he was also very good about helping me get disability when i needed it! so, doctors can be good for more than diagnosing things. he didn't know everything, but he was great nonetheless.i wish you luck in your journey!p.s. my new doctor isn't perfect either! lol Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 13, 2012 Report Share Posted June 13, 2012 Sorry this happened to you; I would get this redone, because if your resting heart rate is normally 80, than you do meet the criteria for POTS. Talk with the doctor about this, even if you have to make another appointment, so that you can at least get some treatment like Anoj said... Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 14, 2012 Author Report Share Posted June 14, 2012 Thank you all I will definitely push for a second opinion. Quote Link to comment Share on other sites More sharing options...
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