daddysgirl Posted April 26, 2012 Report Share Posted April 26, 2012 Hi guys,I hope everyone is feeling pretty good today! Jodi Rhum has posted 2 videos to The POTS Treatment Center's Facebook page if anyone is curious about the program there. They are her impressions from her daughter's progress with Dr. Kyprianou's program. It's informative and wonderful to hear another perspective of the program. Jodi also wrote a book called POTS Together We Stand: Riding the Waves of Dysautonomia, so that's also wonderful to have more resources for us when trying to understand what's going on with our bodies!The videos can be found at: andhttp://www.youtube.com/watch?v=qWziHZj7nh0&feature=relmfuEnjoy!Cassie Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted April 26, 2012 Report Share Posted April 26, 2012 I heard about this girl. I think it's amazing she got results so quickly. Wish that would have been the case for me after spending 5 grand. Quote Link to comment Share on other sites More sharing options...
issie Posted April 26, 2012 Report Share Posted April 26, 2012 Interesting - I know there are a few people on this forum that are using bio-feedback at home. I hope they will put their thoughts here on how it's helped them.But, one note - that I noticed - the girl is still on meds. So, she isn't completely cured - just better. Annaliese - did you do this program?Issie Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted April 26, 2012 Report Share Posted April 26, 2012 Interesting - I know there are a few people on this forum that are using bio-feedback at home. I hope they will put their thoughts here on how it's helped them.But, one note - that I noticed - the girl is still on meds. So, she isn't completely cured - just better.Annaliese - did you do this program?IssieIssie are you asking me if I did the program? If so, yes I spent the first two weeks of April in Dallas doing the accelerated program. Quote Link to comment Share on other sites More sharing options...
issie Posted April 26, 2012 Report Share Posted April 26, 2012 Yeah, that's what I was asking. You didn't find it to help you ---any?Issie Quote Link to comment Share on other sites More sharing options...
roxie Posted April 27, 2012 Report Share Posted April 27, 2012 I'm doing biofeedback at home!It's a nice tool and especially nice that's it's not a medicine. I personally haven't had as dramatic response & recovery to the program but I am still continuing to use it. It helps relieve some headaches and it can relax and center myself and it's relieved some mild pain. From what I've seen either ppl take to it quickly and do well or it just helps somewhat. I dont think it's a blanket fix BUT it DOES have the ability to help and makes symptoms more bearable. Quote Link to comment Share on other sites More sharing options...
issie Posted April 27, 2012 Report Share Posted April 27, 2012 Thanks for chimming in Bananas - you were the main one that I knew was doing the bio-feedback at home. I know you said you thought it did help some.Issie Quote Link to comment Share on other sites More sharing options...
JennaC Posted April 27, 2012 Report Share Posted April 27, 2012 Issie,I did the 2 week program in December and was one those fortunate to see results very fast. My life is very different now. I should note that I started doing yoga and made some diet changes which helped me get out of my electric scooter and standing/walking more several months prior to receiving treatment in Dallas. However, Dr. K and her staff gave me the tools to get through some of my most persistent symptoms. While I don't consider myself cured, I am able to do things I honestly didn't think I would be doing again. My symptoms are way more managable and my bad days are no where near what they used to be. I am confident that with a home biofeedback program that I will continue to improve. Also, I am no longer taking any regular medications, just vitamins.Cheers,Jenna Quote Link to comment Share on other sites More sharing options...
issie Posted April 27, 2012 Report Share Posted April 27, 2012 JennaThanks for sharing - that's wonderful! What supplements do you find beneficial to you?Issie Quote Link to comment Share on other sites More sharing options...
JennaC Posted April 27, 2012 Report Share Posted April 27, 2012 Right now, I take CoQ10 (I have low plasma levels without supplementation), a multivitamin, and Vit. C. When I have muscle cramp issues, I take magnesium. Quote Link to comment Share on other sites More sharing options...
issie Posted April 27, 2012 Report Share Posted April 27, 2012 Jenna,Thanks for the info. I just added in CQ10 - at first I got some over zealous surges of energy and now it has leveled out some. (What do you mean that you have low plasma levels - of what ---the CQ10?) I have to seperate my vitamins out - can't do a multi -- because, I react to so many things - but, have a good all around vitamin supplement routine. And find that Vit. D has helped with energy and muscle pains. I also use magnesium citrate at night to help with sleep. I use GTF chrominum to keep my blood sugar balanced and it helps with insulin resistance. I think the Vit C is really important - with vein function and connective tissue issues. I notice that you do additional B1 - I'm finding that to help too - I think a lot of our POTS symptoms seem similiar to beriberi. I plan to add in alpha lipoic when I get my B1 levels up more - because if they aren't good -you can have issues with alpha lipoic. I do some things to help with hormonal balance too. So, sounds like we're on similiar paths with our supplementation.I know a few are looking into bio-feedback and it's good to know it has helped some.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 27, 2012 Report Share Posted April 27, 2012 Thanks, Cassie...yes, it is a known fact that you can regulate your respirations, HR and BP to a point. I use conventional medications, vitamins, minerals and other supplements, diet and exercise. I am the best I've been in years, but not cured and still symptomatic....had 13 years without medications and diagnosis, except for losartan, but I got progressively worse, and needed help. I'm assuming this child is still on some medication. I'm glad that this is working so well for her....I pray a lot Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.