issie Posted July 16, 2012 Report Share Posted July 16, 2012 This is one of the best explanations I've seen in regards to how pain can affect our autonomic system with EDS and the relationship that EDS has with POTS. There is also a little bit of info in regards to Chiari.Go to the site and click on Clinical Autonomic and Sleep Disorders in EDS - Dr. Alan Pocinkihttp://edstoday.org/resources/eds-videos-educationalIssie Quote Link to comment Share on other sites More sharing options...
roxie Posted July 16, 2012 Report Share Posted July 16, 2012 Thanks for posting this Issie! I've watched this video, thought it was amazing & wanted to post it. However it's not supposed to be posted on forum. I hadn't thought of just telling everyone to go there and watch.Im going to br bringing this up to my dr when I see him in a few weeks, Quote Link to comment Share on other sites More sharing options...
issie Posted July 16, 2012 Author Report Share Posted July 16, 2012 I thought it was good too. I know I have apnea and have a CPAP, but that doesn't always help me with sleeping. If I don't get myself out of pain - you can forget it - all through the night I'm constantly waking myself up - even with a CPAP. So, the key is getting yourself out of enough pain to allow your body to relax and maybe your sympathetic system won't be kicking in all night long.I have been off the clonidine for about 2 weeks now and am considering going back on it for night. It will help with the wild swings. I find that in the day though - I'm very lethargic on it and my brain function seems to be slowed down. I'm not sure that I will be able to take only one dose of it though - because it can make your bp go higher and mine is already high enough. You are supposed to keep it level in your body or you have high bp rises. It was causing my edema to be worse - but wasn't the only thing causing the edema.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted July 16, 2012 Author Report Share Posted July 16, 2012 I have been watching some of the other videos presented at this conference and was watching the one from the physical therapist. Interesting thing he noted about us with EDS contracting our muscles to hold ourselves together and that in turn can decrease oxygen and cause other issues. All of these videos are worth taking a look at ----even if you don't have EDS.Issie Quote Link to comment Share on other sites More sharing options...
peregrine Posted July 20, 2012 Report Share Posted July 20, 2012 Thank you, issie, so much for this video. Finally watched it last night. It seems to answer a lot for me - especially why I seem to have both hyperPOTS and pooling! And the type of insomnia (frequent arousal) that he describes is exactly how my insomnia operates - I wake up every hour or so, look at the clock, then turn over and fall back asleep, but the end result is that I'm exhausted in the mornings. Thank you! Super-glad to have seen it! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 21, 2012 Report Share Posted July 21, 2012 very informative video! Quote Link to comment Share on other sites More sharing options...
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