houswoea Posted May 10, 2011 Report Share Posted May 10, 2011 Hi friends!I was excited about this and I wanted to share it with all of you!My father is a biomedical engineer and he works with doctors who put in pacemakers. He went to a conference last week, and he went to two sessions on POTS, one by people from vanderbuilt and one by people from Autsin, TX.He said both sessions were completely packed with cardiologists asking tons of questions and wanting more research and stuff!I looked at all his notes, and I'm pumped that awareness is increasing.Okay, have a nice night! Or day if you read this tomorrow! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 10, 2011 Report Share Posted May 10, 2011 Okay, I would love to know what doctors in Austin are interested in POTS! I was just complaining about no decent medical care in the deep South! Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 10, 2011 Report Share Posted May 10, 2011 That's great! Thanks for sharing! Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 10, 2011 Report Share Posted May 10, 2011 Thanks for posting this good news. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 10, 2011 Report Share Posted May 10, 2011 Am I the only one a little scared they're pushing pacemakers for POTS? Maybe I'm off base but dysautonomia isn't a cardiac desease, and putting in a physical control on your heart when your autonomic nervous system is sending all the crazy signals....doesn't seem like a good idea. It might be helpful for some, but overall I don't think it sounds like the right way to go. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted May 10, 2011 Report Share Posted May 10, 2011 This is A Happy Post Thanks for letting us know Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 10, 2011 Author Report Share Posted May 10, 2011 I think my dad said that the doctors told them all that out of every POTS patient, he's only ever put in two pacemakers. It was just a regular old conference, my dad just happens to work with pacemakers. For the most part, they emphasized exercise as the "magic cure" so to speak.And Sue, I will try to get the names of the doctors for you. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 10, 2011 Report Share Posted May 10, 2011 Thanks, Housweae, I would appreciate that. Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 10, 2011 Report Share Posted May 10, 2011 Yay! This made my day, thanks for sharing. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 10, 2011 Author Report Share Posted May 10, 2011 The doctor from Austin is just good old doctor Levine. No wonder there was such a push for exercise. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 11, 2011 Report Share Posted May 11, 2011 Id be surprised if doctors from Vandy suggested exercise was a 'magic cure'. the only doctors suggesting that are from Austin and seem to be pretty picky about who they include in their study protocols. I doubt I - who runs 3 kms three times a week and who has postural hypertension - and for whome exercise has not been a magical cure - would qualify. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2011 Report Share Posted May 11, 2011 I agree, Rama. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted May 11, 2011 Report Share Posted May 11, 2011 Am I the only one a little scared they're pushing pacemakers for POTS? Maybe I'm off base but dysautonomia isn't a cardiac desease, and putting in a physical control on your heart when your autonomic nervous system is sending all the crazy signals....doesn't seem like a good idea. It might be helpful for some, but overall I don't think it sounds like the right way to go.My cardiologist, whom also treats my Dys, told me my HR could get in the 30's and he would not worry. He said I'd feel horrible but I'd be OK. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 11, 2011 Author Report Share Posted May 11, 2011 Id be surprised if doctors from Vandy suggested exercise was a 'magic cure'. the only doctors suggesting that are from Austin and seem to be pretty picky about who they include in their study protocolsI thought that as well. Exercise didn't really help me when I was really sick, so I am always a bit confused. My dad said while the TX people were pushing only exercise, the Vandy people said to push exercise but also use meds.There was a lot of talking about how POTS patients would benefit from exercise but are usually non-compliant and I was like "hey now! that's not true!" but otherwise there were a lot of good things mentioned. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 11, 2011 Report Share Posted May 11, 2011 Yeah i often read in various medical studies statements that kind of suggest we are so adverse to tachycardia that we lye around all day feeling sorry for ourselves. However, I reckon I could outrun all of those doctors right now and Ive still got POTS. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2011 Report Share Posted May 11, 2011 Oh, this tide in exercise touted as the "cure" and the mindset doctors are getting on POTS from this kind of presentation at conferences, is NOT in our best interest. It's already hard to get a good evaluation and trials of various helpful meds to control symptoms. Now, they will just have a one-track mind---exercise. And, like Rama said, when we can't do it because we don't have access to a rehab, or money to pay for personal training, they definitely will look at us as noncompliant and drop us. Quote Link to comment Share on other sites More sharing options...
corina Posted May 11, 2011 Report Share Posted May 11, 2011 happy to know the word is out and more doctors will learn about dysautonomia. from my own experience i have to say that exercising didn't cure me. in fact, when i tried about 3 years ago i had to admit after trying for almost a year that exercising made me worse. glad i at least tried! Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 11, 2011 Report Share Posted May 11, 2011 That's why crazy doctors like levine are so dangerous, they push their nutty ideas long enough and it gets into the main stream. Don't doubt for one second this guy is saying he can cure POTS and if you aren't better you're just to lazy. Just the fact that the doctors from Vandy didn't jump all over this guy is scary, very scary. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 11, 2011 Author Report Share Posted May 11, 2011 That's why crazy doctors like levine are so dangerous, they push their nutty ideas long enough and it gets into the main stream. Don't doubt for one second this guy is saying he can cure POTS and if you aren't better you're just to lazy. Just the fact that the doctors from Vandy didn't jump all over this guy is scary, very scary.I agree... the best thing I did to help my body heal was actually to rest and stop pushing it so much. When I was working so hard to get better it only made things a billion times worse.But the fact that doctors were there and asking questions is still great. They talked about stuff that we already know on the forums. I wish my st. paul doc had been there! He would benifit to know all the other medication options besides midodrine. He doesn't right now.Any press is good press? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 11, 2011 Report Share Posted May 11, 2011 I worry about the idea that we are overly focussed on mild physical symptoms - I ignored mine for decades until I literally couldn't stand up, which didn't help me at all. A little more focus on POTS symptoms could have changed my life for the better if I had had a knowledgeable/helpful doctor. Also, I hope they realize there is a difference between "non-compliant" and unable to exercise. Until I started the meds I am taking I was unable to exercise, no matter how hard I tried. Now exercise is gradually helping, but without the meds and other measures (fluids, salt, etc.) I would still be sinking to the bottom of the pool (literally and metaphorically). Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2011 Report Share Posted May 11, 2011 I guess I should have completed my "non-compliant" statement earlier. I exactly meant what you mean, Sarah, that I cannot exercise. I only last walking mildly for about 8-10 minutes on a GOOD day. I can't imagine getting any more involved in a cardio workout, and having to do it on my own, and for 20-30 minutes. I won't do it in that manner because it just can't be safely done at home. I am not going to risk passing out at my home. Now, if insurance would pay for me to go to cardio rehab, that may be a different story. I don't even shower until my husband comes home, as I am afraid I'll pass out in the shower and be alone! Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 12, 2011 Author Report Share Posted May 12, 2011 The thing that helped me the most was letting my body rest for a few months. I think they may be thinking of pots as a one-cause condition when really it's only an umbrella term for a bunch of different things that make your heart rate go up when you stand. Doctors are always saying I'm non-compliant (translate: I can't stand up, but they want me to walk somewhere) but it's always worked out in the end. As long as people know it's a problem, we will get good treatments eventually! Quote Link to comment Share on other sites More sharing options...
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