roxie

Maybe this'll help: https://vimeo.com/101947622

@Kaitlyn I think I'll ask my dysautonomia dr first & see what he says. He just easier to talk to. See what he says & go from there. I tried to log into my old cardio's patient portal but it may have been deleted ?!

@Kaitlyn did he ever talk to you about it? I don't see the cardio anymore o switched to a more general Dysautonomia specialist so I can't ask the cardio. I can look at my patient portal but that's about all. Calling his staff would be no use.

@Kaitlyn I've wondered before if I had IST but I've had work ups by a cardiologist & countless EKGs & have never been told I had IST. There are times I thubj I have a slightly irregular best maybe pvc's but they've never been mentioned either.

We did decide to decrease it. It's been 4 days, I haven't seen change in hr yet. I have seen more dizziness and nausea but that could be bc I chanhed something. My body is so reactive. We'll see in time though. Am I the only one that hates waitin things out?

I'm feeling a bit dumb today but are you thinking a resting hr in the 70s shouldnt be a problem? I don't think it should be either that's still very normal & better than what I had!

I added this reply to ninj's propranolol post but don't want to hijack his thread so I'll add it here too: I took propranalol but it didn't do much for me, was switched to metoprolol and have been trying to find the right dosage. I get the shortness of breath & shakiness you describe usually when my hr goes into the low-mid 60s. I've been blaming my hr & trying to find the right amount that my hr stays in the 70s but this has not been easy. It's either high or low. So do you guys think it may just be a side effect of the bb or my actial hr? Is it something I just learn to live with? Like others have said it's not something that makes me feel all better whether my hr is in the 60s or 70s it's like exchanging the bad feeling for a different not feeling all. does anyone else feel poorly when their heart rate goes into the low-mid 60s? How do you handle it & BB's? i am trying to follow dr pocinki's protocol but can't find the right dose of bb. My bp has been fine so that isn't an issue. My dr said he would like my resting hr in the 60s. Then I tell him I don't like how it feels in th 60s, is a resting hr in the 70s such a bad thing? I'm so confused

I took propranalol but it didn't do much for me, was switched to metoprolol and have been trying to find the right dosage. I get the shortness of breath & shakiness you describe usually when my hr goes into the low-mid 60s. I've been blaming my hr & trying to find the right amount that my hr stays in the 70s but this has not been easy. It's either high or low. So do you guys think it may just be a side effect of the bb or my actial hr? Is it something I just learn to live with? Like others have said it's not something that makes me feel all better whether my hr is in the 60s or 70s it's like exchanging the bad feeling for a different not feeling all.

Katybug, are you able to sit up all day?

Would an adjustable wedge be different than an electric recliner? Katybug, I think it's only a matter of time before I need c5-7 fused, I have an mri to check if it's progressed next week. I had suxh a tough time with 0-c2 though he's rewlly going to have to convince me that theettrt fusion is good idea! If theres anything I can do to avoid it I will, thankfully my NS alwys says "ideally we wont have to do surgery"

Katybug, I like the pillow idea but is there any other way? I also have EDS and an 0-c2 fusion. Surgery really threw me for a loop and I've found that since fhen I have not been able to sit in a recliner or be "reclined" like if I only had a few pillows because of the way it pushes my neck. I lie on my sides now.

For those that wear a fitbit to monitor your heart rate do you find that the app always says your average resting hr is the same? Mine gives me the same daily average for weeks on end, I've started to think it's odd so I've been taking all the charted readings and averaging them myself (it's a pain to do) But as I have, I've found that my daily average does in fact vary day to day like I thought and its higher than the Fitbit app tells me. Though I do find my realtime readings to be within a couple of beats of my bp monitor so I think the reading I see at the moment in my wrist - most of the time- is relatively accurate. It doesn't seem to pick up on spikes or rise as quickly as it seems my hr does when I'm standing. i know it says "resting heart rate" which is different than your moving heart rate (I don't move very much anyways) but am I missing something with it alWays listing the same and that the averages I calculate are higher than what it is telling me my average is? Does anyone we notice this?

If lying down all the time is bad for us, how can we learn to sit up more? I find simpyl sitting up to be exhausting.

Maybe this will be helpful. potsgrrl.blogspot.com/search?updated-max=2012-01-08T18:24:00-05:00&max-results=1 Good luck