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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. Thanks Kelly! I'm going to watch this video again.
  3. That is awesome and encouraging, issue! Here is a link to a site that'll help find a certified practioner near you http://www.upledger.com/findApractitioner.asp Kelly, did you see Dr Rowe? I've heard such good things about him use the link above to find a practioner. I don't know for sure of what your husband and daughter is cranial sacral but the do work the sacrum & the cranium! The link above is to the Upledger Institue & it's listed as being located in Palm Beach, FL. Could that be the one you are thinking of?
  4. I have had a few and nothing has ever shown.
  5. Has anyone tried craniosacral therapy? Does it help you? I am doing craniosacral therapy (CST) and thought I'd post about it. I searched and saw it was posted about in the past here: http://forums.dinet.org/index.php?/topic/13489-cranial-manipulation/ But it could be brought again! Anyways, I have EDS that caused my POTS and a fair amount of muscle pain. We found that my muscles simply aren't activating and my exercise physiologist gave me new exercises to activate and also greatly recommended gentle forms of bodywork like myofascial release to ease pain and help activate muscles. I sea
  6. Katy you have EDS right? Are you hyper mobile? I get pain around my diaghrphrsm a lot. I have pain everyone and recently described to give myofascial release a try. Yesterday was my first appointment, it was an experience and the jury is still out. But she told my diaghrphram was extremely tight. It's almost like the contractures that can happen in EDS built up around my diaghrphram. She thinks in time she can lesson it. Is that a possibility for you?
  7. I don't know the name of the other systems she's uses, she wouldn't tell me the names and said they are for professionals. There is the Heartmath computer system, emg muscle tensions thing, and a hand temperature thing. She also talks about levels where you stand and do the breathing. I didn't get that far and she couldn't tell me what the levels were and why they were so important. I think it's was just practicing the breathing & muscle stuff standing. And then she tries to give your supplements and exercise advice.
  8. Did you just start midodrine or change the dose? I had that when I started it but it seems to be mostly better.
  9. Wow! That's a lot. I'm glad you got some info! Idk if I have h-pots or not? But I do have POTS/EDS with labile bp. Did he say anything about Midodrine & hbp, since you swing that way sometimes? My dr has me on Midodrine right now & i worry about when my bp goes up. Right noe it's ok at home but it's ALWAYS high when I go to the dr like 153/106 compared to 110/76 at home. So he's not sure about Midodrine? dr Goodmand said you won't recover bc you're in your 30s. Is that saying that EDSers who got POTS in their teens can recover 100%?? I got sick when I was 12. My dr is very very good
  10. I started out kicking my legs in the bathtub for 5 minutes. Over a few months I built of to 2 sets of 5 mins. Then I started transitioning to a recumbent bike! I just reached 10 mins a day in the past week!!! I also do some very light, pilates-like strength work 3 x's a week. Almost any exercise will make you feel worse in the beginning, unfortunately. It's important to start out at low and light level and gradually increase it as your body allows. Keep at It
  11. Yes! I had a full heart work up but they didn't find anything on me. I've found magnesium seems to lessons them & now it only happens every so often
  12. I'm glad you liked it it's a great Carrie Underwood song! No, I've using http://www.vitacost.com And read through reviews of things I needed to pick them. Basically hunt, peck, & try. They aren't compounded. I was originally getting them from the company my dr works with, GNLD, but it got too expensive. I take about 10 vitamins but some of them I take a few times a day, so maybe 20-30 pills plus my POTS meds. I do think they have helped. Most of them are for digestion and my gastroparesis but my GP is becoming manageable. I'm also taking things I tested deficient for.
  13. Oh wow that is a lot. Everything my dr has me on is around $400 & I thought it was a lot. Someone told me to check vitacost. & I've been doing that as I run out of each it cuts it at least by half!
  14. So adorable! I look on YouTube & theres a few more videos of her http://m.youtube.com/#/user/douglasfamilyof5?client=mv-google
  15. I am. Ive been on Florinef for a while & started Midodrine last week
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