Angela Posted April 3, 2013 Report Share Posted April 3, 2013 she never invented ccsvi nor came up with the theory so how can she copywrite it. and if she has pots truly she wouldn't be trying to hide information from others who suffer. that pure craziness. Quote Link to comment Share on other sites More sharing options...
Angela Posted April 3, 2013 Report Share Posted April 3, 2013 well, i mean no one invented ccsvi i just got a little carried away. "laugh out loud" Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 3, 2013 Report Share Posted April 3, 2013 sweet.....we finally agree on something ha ha:)c'mon Angela, you guys "agreed" on jalapeno poppers the other day and made me drool all over my keyboard Quote Link to comment Share on other sites More sharing options...
Angela Posted April 3, 2013 Report Share Posted April 3, 2013 ha ha I get along with Rama as far as I know quite fine, I just know how much you hate benzo's so I was talking about you! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 3, 2013 Report Share Posted April 3, 2013 I never thought we 'disagreed' on anything. I don't'hate benzos, I just hate their effects on me. Same with florinef. If others find certain meds helpful, I'm perfectly fine with that. Quote Link to comment Share on other sites More sharing options...
Angela Posted April 3, 2013 Report Share Posted April 3, 2013 Alex - CTM (chuckle to myself) just needed something new from lol....yeah, jalepeno poppers....cheese....yum. don't mess with me right now, I've been vegan for two months! Quote Link to comment Share on other sites More sharing options...
Angela Posted April 3, 2013 Report Share Posted April 3, 2013 I never thought we 'disagreed' on anything. I don't'hate benzos, I just hate their effects on me. Same with florinef. If others find certain meds helpful, I'm perfectly fine with that.gotcha. thought you had something out against one of the only things that have helped me from some previous posts. totally agree, we all respond differently to different meds. my preference and strong opinion is the less the better. like salt loading, i dont get it and yet other's would certainly disagree as it makes them feel better. I got over my first flare which was BAD with no pills whatsoever. but last time just couldn't do it! My dream is to be cured and med free, hope that happens one day soon Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 3, 2013 Report Share Posted April 3, 2013 OK, I have been warned! Thanks Angels, I needed a good laugh. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 3, 2013 Report Share Posted April 3, 2013 My dream is to be cured and med free, hope that happens one day soonAmen to that! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 3, 2013 Report Share Posted April 3, 2013 I found the video interesting. He seems well spoken and reputable. Who wants to be a guinea pig? Quote Link to comment Share on other sites More sharing options...
issie Posted April 3, 2013 Report Share Posted April 3, 2013 I found the video interesting. He seems well spoken and reputable. Who wants to be a guinea pig?My doctor is on board with this guy. But, thinks that what we are doing with diet will correct a lot of the problem. He just returned from a seminar/conference in Poland and said more doctors are really thinking this is an issue with POTS. He believes that we will, with time, have a good result with what we are doing with diet and working on the immune system. But, if that doesn't completely correct the symptoms associated with this and/or POTS. He says he will send me to some doctors in CA ( I'm assuming this is the doc he is talking about). So, I guess I'm in line for the guinea pig thing. But, hoping that what I'm doing will work and make a huge difference. Thing is ---it will take time and determination on my part to do what I'm told. So far, so good.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2013 Report Share Posted April 4, 2013 Ill watch this with interest but I wouldnt be putting my hand up just yet. They dont seem to have an explanation for why the balloon in the vein squashing the vagas is helping. Quote Link to comment Share on other sites More sharing options...
issie Posted April 4, 2013 Report Share Posted April 4, 2013 Ill watch this with interest but I wouldnt be putting my hand up just yet. They dont seem to have an explanation for why the balloon in the vein squashing the vagas is helping.Yeah, will be interesting to see what they figure out ---and I'm always very cautious. Quote Link to comment Share on other sites More sharing options...
issie Posted April 4, 2013 Report Share Posted April 4, 2013 Interesting that years ago, my sister who has OI - they were going to implant a vagus nerve stimulator to see if it would help her. For a bunch of reasons she wasn't able to do it. But, with OI they have been thinking the vagus nerve plays a part for a long time. I think there needs to be a lot more research yet on it. But, it sounds interesting. It makes you wonder why there are issues in the veins that are close to that nerve though. Why does ballooning them out at that point make the difference. Looks like there would be more vasoconstricted veins in the body that would be just as much of a problem. Why the jugular veins? How does that play into things? Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2013 Report Share Posted April 4, 2013 My feeling is that unless they have some double blind evidence it wont be long before they wont be allowed to do it. Quote Link to comment Share on other sites More sharing options...
issie Posted April 4, 2013 Report Share Posted April 4, 2013 I think unfortunately, they may have to do that. The placebo effect? But, it seems many are getting results with it. But, it does seem risky to me. I'm hoping that if there is a vasoconstricted state of the veins and working on their health and possibly unclogging them ---will give the benefits of added blood flow and possible better vein function. That's my focus at the moment. Even though, my doc is willing to send me to those docs - other then having a conversation with them --when it comes down to it ---not sure I'd do it. I think I'd have to be a lot worse then I am to take the risk. Issie Quote Link to comment Share on other sites More sharing options...
Angela Posted April 4, 2013 Report Share Posted April 4, 2013 I think my issues are lack of blood to brain Quote Link to comment Share on other sites More sharing options...
Angela Posted April 4, 2013 Report Share Posted April 4, 2013 so lets just take all more drugs ctms that are proven to cure pots please tell me that there us a cure, besides bb's and florenisef. don't seem 2 b cures. just bandaids. Quote Link to comment Share on other sites More sharing options...
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