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roxie

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About roxie

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    anything i have the energy to do!

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  1. Hi.  Can you tell me more about your experience with craniosacral therapy?

    The last time I did it for 2 sessions, it made me worse. 

    I think that the therapist caused my vagus nerve to be impinged and I have been dizzy every since.

    So it made my dysautonomia worse.

    I am wondering if I should see another doctor who does it to undo what the last one did.

  2. Maybe this'll help: https://vimeo.com/101947622
  3. @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 ?!
  4. @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.
  5. @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.
  6. 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?
  7. 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!
  8. 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 ju
  9. 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
  10. 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"
  11. 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.
  12. 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 o
  13. 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.
  14. Maybe this will be helpful. potsgrrl.blogspot.com/search?updated-max=2012-01-08T18:24:00-05:00&max-results=1 Good luck
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