AshleyPooh Posted July 31, 2013 Report Share Posted July 31, 2013 Today's tilt table test came out quite strongly positive for syncope. I wasn't standing but a few minutes before I went down like a bag of bricks, no nitroglycerin needed. I was pretty shocked, as I'd never come close to that before, but as my doc explained to me, I'd always had coping mechanisms like moving my legs and stuff, or sitting down before it got too bad.Since my doc says i'm so 'brittle' (meaning I reacted so strongly) , she is skipping just the non medicinal therapy and putting me on midodrine, the lowest dose which i think is the 2.5? to start with, and we will monitor from there.Meanwhile, she says i need like 60 oz of fluids a day, more if i'm in the heat, i need to eat lots of table salt, and to take my meds 3 times a day.I'm so happy I got answers today. I was so afraid I wouldn't react at all, and everyone would think I was crazy. Little did I know that I would react more strongly than most of the people that get the test. The doc says most people need the nitroglycerin to react, but they didn't get anywhere near that time frame before I was going down.I feel pretty rough though, tired and ' washed out' as they say. I am going to take a nap to recover, also ate a big salty meal Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 31, 2013 Report Share Posted July 31, 2013 Congrats on getting diagnosed! I had my ttt yesterday and they are pretty rough. Stood for forty minutes, almost passed out a few times and my body pulled all of its tricks out of the bag to keep me conscious. But at least the docs got to see them. I was also afraid of getting called crazy or something. They also went straight to meds for me (fludrocortisone) since I'd been doing the salt and water stuff for months.Out of interest, are NCS and vasovagal syncope different or the same thing? I've seen different sites say different things. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 31, 2013 Report Share Posted July 31, 2013 Happy that you have test result but sad to know that it is Ncs. At least you know what is holding you back and doctors can help you get started on the right track. Keep us posted and go have a nap after that salty meal. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 31, 2013 Report Share Posted July 31, 2013 Ashley, Freakedsounds like your TTTs were worth your while. Sorry you had to go through that, but hopefully the results have given your drs enough info to be able to address your problems properly.Best of luck to both of you with your new treatment regimens.Ashley, I fainted during my first TTT after a few minutes of being upright and I wasn't given any meds. From what I've been reading that's not unusual, but definitely is a stronger reaction than someone who doesn't have some form of dysautonomia.Alex Quote Link to comment Share on other sites More sharing options...
Hope Posted July 31, 2013 Report Share Posted July 31, 2013 So glad to hear you got a diagnosis! That is always a relief. Keep us posted on your progress please! Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 31, 2013 Author Report Share Posted July 31, 2013 Freaked, I do believe that NCS and vasovagal syncope are the same thing, just different terms.Alex: did you have actual fainting before your ttt? I'd never gone anywhere near to fainting before until the test. I suppose I just kept myself from getting too bad, and didn't realize how many things i'd been doing to help myself ( like sitting down, flexing legs etc)I realize now why they stress to you not to do anything physical after the test. I feel like I've been on the edge of having some sort of episode ever since. Over heated, wobbly, etc. I'm being careful though, so hopefully by tomorrow I will feel just fine Quote Link to comment Share on other sites More sharing options...
jknh9 Posted July 31, 2013 Report Share Posted July 31, 2013 Ashley, welcome to the NCS club! Your TTT sounds remarkably like mine, I was up maybe 3 mins--MAYBE--before I was completely out and even seized, with no nitro. They diagnosed me with POTS and NCS with the same TTT. It's a pretty nasty experience, but worth it for the diagnosis imo. Unlike you, though, I had passed out several times before diagnosis, even despite counter-measures like what you described above. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 31, 2013 Report Share Posted July 31, 2013 Ashley,I don't usually faint - never fainted since my symptoms started or after the TTT, and in my case this has nothing to do with taking the right meds or using whatever counter-measures to prevent myself from passing out. The fainting during my TTT has a long story behind it and my dr agreed that I have only POTS but no NCS.I did faint as a kid a couple of times - once during blood work and then I don't recall the circumstances of the other events. Regardless, back then I was told that there was nothing to worry about. They were isolated incidents (years apart) and there are so many reasons for a young girl to faint, most of which are entirely benign.You should take it really easy after the TTT. The first time around I needed almost a week to recover - fainting is not the most pleasant experience.Take good care of yourself.Best,Alex Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted August 1, 2013 Report Share Posted August 1, 2013 Doesn't it feel good to have an answer finally! A direction to go. I hope the meds help to stabilize your episodes, and you get to feeling better soon. Fainting was my first symptom of POTS. And I passed out on the TTT as they were raising me up and the Dr was still explaining the procedure. Hehe.....boy did he get a surprise! Quote Link to comment Share on other sites More sharing options...
spinner Posted August 2, 2013 Report Share Posted August 2, 2013 hard as it is to get a diganosis like that, we all know its atually a relief to know whats happening!Happy that you have test result but sad to know that it is Ncs. At least you know what is holding you back and doctors can help you get started on the right track. Keep us posted and go have a nap after that salty meal. Quote Link to comment Share on other sites More sharing options...
spinner Posted August 2, 2013 Report Share Posted August 2, 2013 Ashley,I don't usually faint - never fainted since my symptoms started or after the TTT, and in my case this has nothing to do with taking the right meds or using whatever counter-measures to prevent myself from passing out. The fainting during my TTT has a long story behind it and my dr agreed that I have only POTS but no NCS.I did faint as a kid a couple of times - once during blood work and then I don't recall the circumstances of the other events. Regardless, back then I was told that there was nothing to worry about. They were isolated incidents (years apart) and there are so many reasons for a young girl to faint, most of which are entirely benign.You should take it really easy after the TTT. The first time around I needed almost a week to recover - fainting is not the most pleasant experience.Take good care of yourself.Best,AlexIve never outright fainted either but ive sure come close hundreds of times.When i was a kid with the swine flu faccination i went down. But it wasnt a classic syncope.Back then they'd use the old breathe into a bag deal. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 2, 2013 Author Report Share Posted August 2, 2013 Alex: I'm definitely needing longer than one day to recover, just like you said. Yesterday I was in the store, and almost fainted. We'd been walking around costco a bit, and we'd switched stores, and as we were walking I realized I was feeling rather warm. My aunt commented on me looking flushed, and we both looked at each other like ' oh.... ok' and immediately sat me down. I was feeling bad, but with the help of the scooter carts ( felt like an idiot riding around in it but what else can one do?), I was able to continue shopping without further incident.I did have my bp monitor in the car, and when I checked it was pretty low ( 95/39 i believe it was, pulse 41) . It gradually stablized, but I had to be careful the rest of the night.Today I feel a bit dizzy headed too. I took my first dose of midodrine at 9am, but it doesn't seem to be doing much to my blood pressure. Second dose just took at 1:08, we'll see if it does anything. I'm on 2.5 mg, so if that doesn't work i'll have to talk to the doc about a dose increase.How long did it take for midodrine to boost your blood pressure after you started it? Just curious Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 2, 2013 Report Share Posted August 2, 2013 Ashley, for me the midodrine worked right away. It worked so well actually that in less than a week after starting it I was already complaining of hypertensive episodes. I had to discontinue that as it just wasn't the right med for me. I didn't respond well to any meds that I took that are supposed to increase my BP. After midodrine I tried florinef and it turned out that the side effects were too much for me.While I did have a NCS diagnosis after my first tilt table after re-evaluating my case the dr dismissed that diagnosis and now I "only" have POTS.My midodrine doses were much higher than yours though - 15 mg upon waking up, 10 mg 4 hours later and 10 more mg 4 hours later. Perhaps your dr wanted to see how you react to it and will consider adjusting your dose accordingly.Also, recovering after the tilt test is a very individual thing. I had two of them, It took me almost a week to recover after the first one, while the second time around I was able to get back on my feet the very next day or so. Take your time and take it easy.Best,Alex Quote Link to comment Share on other sites More sharing options...
shan1212 Posted August 3, 2013 Report Share Posted August 3, 2013 Had my TTT this week too, and same results! I really wasn't expecting to pass out. I'm still more winded and woozy than usual and needed to be completely flat for a period last night, which is unusual for me (though that's how I spent the entire first trimester with my last pregnancy, so I remember it well). Ah well, knowledge is power. I'm trying to ease back into my normal routine. I did manage a workout yesterday but it was pushing it. Today is supposed to be a running day but I just don't know. I might have to run around my block 20 times so I'm never too far from home.Anyway, glad you got some answers. Hope you are feeling a bit more "normal" today! Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 3, 2013 Author Report Share Posted August 3, 2013 Shan: I am feeling both 'more' normal and 'less' normal lol. More normal in the sense of not having as many issues with the NCS, but less normal in that I'm sick :/ Stupid sinus infection/ virus!! No wonder I was having so many issues yesterday! but the side effects of the new meds were disguising me being sick. I probably had a fever and couldn't tell b/c of the goosebumps/ chills ! IronicI hope you also feel more normal and well Quote Link to comment Share on other sites More sharing options...
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