roxie Posted February 28, 2012 Report Share Posted February 28, 2012 I just saw a blurb on tv that ABC World News Tonight is doing a segment on what fainting can say about your heart. It's tonight at 6:30 EST/ 5:30 CT Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 28, 2012 Report Share Posted February 28, 2012 Thanks for the heads up! I will set my Iphone on alarm for a reminder so I don't forget to watch! Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 28, 2012 Report Share Posted February 28, 2012 Saw that. Can't wait....though I doubt we'll learn anything new. (Gosh, I sound like such a cynic Naw....cynics don't say GOSH.) Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 28, 2012 Report Share Posted February 28, 2012 LOL. Thanks Mack's Mom for the laugh!! Quote Link to comment Share on other sites More sharing options...
roxie Posted February 28, 2012 Author Report Share Posted February 28, 2012 Ha, that's what I thought too...they'll be nothing new & I doubt its about POTS and yet we're still hopeful enough to watch Quote Link to comment Share on other sites More sharing options...
bunny Posted February 28, 2012 Report Share Posted February 28, 2012 well, it was just on. Partial text transcription of the segment can be found here:http://abcnews.go.com/blogs/health/2012/02/28/fainting-can-indicate-deadly-heart-condition/The "deadly heart condition"? Cardiogenic syncope. The news segment made it seem like you were in imminent danger of DYING if you didn't run out and get a pacemaker. Unfortunately, this is blatantly false. It's been a few years since I've researched the topic (deaths due to cardiogenic syncope) but I wasn't able to come up with a single medical report of it happening.To be honest, the report felt like it was sponsored by Medtronic or other pacemaker manufacturer. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted February 29, 2012 Report Share Posted February 29, 2012 I watched it. It was really short, but at least they showed a tilt table lol. I'm curious though, because I saw a clip from another show they're going to do about astronauts fainting and it way made me think of POTS. I want to know when that one is going to be on! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 29, 2012 Report Share Posted February 29, 2012 That's for letting us know this was on! Somebody should have not just laughed and said "look at that baby ..she's fainted" when I was THREE YEARS OLD!Tomorrow's astronauts segment sounds promising.... or at least as good as it gets on MSM!! Thanks again. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 29, 2012 Author Report Share Posted February 29, 2012 Potsyturvy- they showed a tilt table? I must not have been looking then. Tomorrow is the astronaut thing....I hope they don't make it look like it's an easy condition to live with. Quote Link to comment Share on other sites More sharing options...
bunny Posted February 29, 2012 Report Share Posted February 29, 2012 They didn't actually show a tilt table in use or even talk about it. Just the sensational bits Ie: fainting, hearts stopping, a person being rushed to the hospital via ambulance. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 29, 2012 Report Share Posted February 29, 2012 Well.... the whole point that I got was that fainting is not to just be laughed off. There is a REASON a person faints. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted February 29, 2012 Report Share Posted February 29, 2012 I agree with you McBlonde. Too many people do laugh it off, when they could have POTS or bp issues. The tilt was a just a really quick picture when the lady was talking about having tests done. It didn't have anyone on it or anything. I was just shocked to see one at all! I am really excited about the episode tomorrow, I hope it's not too disappointing Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 29, 2012 Report Share Posted February 29, 2012 Thanks for posting the link. Most of the time I don't get those channels so it is nice to be able to see what you are talking about. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 29, 2012 Author Report Share Posted February 29, 2012 There is a POTS group on FB and they are saying tomorrow nights segment is with Dr Levine and being refered to as Grinch syndrome I also saw this bloghttp://potsgrrl.blogspot.com/2012/02/action-alert-tell-abc-news-not-to.html?m=1 Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 29, 2012 Report Share Posted February 29, 2012 Thank you for posting about this. I did not see the clip tonight, but I'm happy ANYONE talks about syncope without only referring to needles, standing up too fast, reacting to shocking news, or my favorite "Some people just faint..." I began having syncope when I was young- pre- puberty and it was never taken seriously. I can't count how many doctors dismissed me over the years until I was finally diagnosed at 37 years old- but unfortunately I had to get very, very sick and have other organs start to malfunction before that happened.As McBlonde said... People do NOT just faint without a cause. If someone is doing any news segment that shows it being taken seriously, I'm very happy to hear it. I've known all my life that there was something "wrong" with me and could never truly feel safe in most circumstances because off and on throughout my life, my syncope was so frequent. If that segment could prevent someone, or a a parent of a child with syncope, from that and send them in the right direction to get medical attention (if they are lucky enough to find someone who knows what they are talking about) then what a blessing!!!! Of course, so much more needs to be said, and so much more needs to be reported because our illness is so misunderstood... Sadly we have to take what we can get in the way of publicity. If it has to start with fainting being an actual medical condition... I guess it's sady better than nothing. Jen Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 29, 2012 Report Share Posted February 29, 2012 Agree with him or otherwise, you sure haev to agree that he knows how to sell a theory... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 29, 2012 Report Share Posted February 29, 2012 http://www.theshorthorn.com/index.php/news/university/29435-expert-women-at-cardiac-disadvantageWomen at Cardiac Disadvantage: Dr. Fu (and Levine) lecture at University of Texas Arlington about POTS. Most interesting was the response from a lecture attendee, who refutes some of what the article says. I wonder how much of this is simply bad reporting? On the other hand, why, in this age of increased "sensitivity" would a doctor continue to use a term to describe his patients that the patients themselves find so offensive? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 29, 2012 Report Share Posted February 29, 2012 On the other hand, why, in this age of increased "sensitivity" would a doctor continue to use a term to describe his patients that the patients themselves find so offensive?And, continue to use a term that DOES NOT reflect the majority of female POTS patients' hearts?? Quote Link to comment Share on other sites More sharing options...
roxie Posted February 29, 2012 Author Report Share Posted February 29, 2012 I wonder the same thing. No matter how much he & his staff say it's humor calling it "grinch syndrome" it's offensive to the people he's trying to help. Ignore our feelings shows insensitivity. Plus, the general public doesnt think of a small heart when they hear grinch, they think of a mean person. It only furthers the struggles we have getting others to understand Quote Link to comment Share on other sites More sharing options...
heathmcev Posted March 1, 2012 Report Share Posted March 1, 2012 Here's a link to tonight's article on POTS on ABC News.http://abcnews.go.co...comment-1047452I was so excited to hear we got national publicity - then so mad that it was focused on small hearts when I know for so many of us it's just not true. I wrote a comment at the bottom of the story at the link about... You can write one too and share your thoughts with the author. The more of us that comment, the more likely a follow up story will be! I feel like the world was mislead about our illness... Quote Link to comment Share on other sites More sharing options...
roxie Posted March 1, 2012 Author Report Share Posted March 1, 2012 Thanks for posting the link dizzyde!I feel like the did an alright job. It could've been better and it could've been worse. I don't think the point was to explore POTS deeply, they'd need at least an hour on 20/20 to do that.I'm very thankful they didn't call in the Grinch syndrome.... A lot of people from FB wrote messages to ANC asking them to not do that. Quote Link to comment Share on other sites More sharing options...
heathmcev Posted March 1, 2012 Report Share Posted March 1, 2012 Here's the video clip from the news as well... http://abcnews.go.com/WNT/t/video/astronauts-fainting-spells-lead-breakthrough-15821210 Quote Link to comment Share on other sites More sharing options...
jem15 Posted March 1, 2012 Report Share Posted March 1, 2012 I just read the article bout pots/astronauts/ small heart,etc.., and I agree with dizzyde that we should write in and tell them how they misrepresented pots a great deal. I'd give anything for a "cure" n if it was that easy n curative 4 everyone we'd all be doing it and our drs would all recommend it. I get so excited when I hear pots is in the press, then get completely disheartened when it sounds like everyone can be cured ndoesnt explain the myriad of autonomic symptoms. It seems 2 me, n maybe I'm wrong, but it's only Levine proporting the heart theory n that most drs consider it an autonomic disorder . So how the heck does his theory keep getting press and be viewed as fact. At least if they said it's one theory n helps some or a small subset of patients I'd feel better. It just scares n saddens me that all of us struggling do hard 2 get better, get set so far back with articles like this and I worry that we'll never get the increase in research we need if it's always implied its an easily curable condition that everyone gets better from if they're not lazy n just exercise. Ha ok sorry had2 vent, will post my reply to abc tomorrow but looks like most comments there feel similarly. Maybe if they get enough complaints they'll do something. Think I'll post dr raja research article too Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 1, 2012 Report Share Posted March 1, 2012 Ugh. Stories such as this one do not help.There may be some people who do have small hearts and that is the cause of their POTS, but for many of us, our hearts are of normal size and we were quite active before becoming disabled. I wish the focus would be taken AWAY from just the heart and shifted to the NERVOUS SYSTEM, which is the real issue. Sadly, America is once again misinformed. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted March 1, 2012 Report Share Posted March 1, 2012 I was so glad they didn't use the term "Grinch" in the news report. I felt like it could have been better, could have been worse. At the end, one of the reporters stated that not all POTS patients have small hearts or are deconditioned, though I can see how the casual observer would arrive at that conclusion since most of the segment was about the subset of POTS who have small hearts. I am excited that we are getting some national news coverage. Hopefully, it will encourage other news stations to do more in depth segments about POTS. Quote Link to comment Share on other sites More sharing options...
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