Rachel Posted February 2, 2012 Report Share Posted February 2, 2012 There was an article this week in the Pittsburgh Post-Gazette about POTS: Nausea, dizziness, weight loss, headaches, vomiting: These symptoms sometimes add up to POTS http://www.post-gaze...1206625-114.stmIt includes quotes from several dysautonomia doctors. It doesn't go into how severe POTS can be for some of us, but neither does it say that we all get better like we've seen written sometimes.It is good to see another article spreading awareness! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 2, 2012 Report Share Posted February 2, 2012 That was a pretty thorough article, with alot of the big researchers! They do stress how fluids seem to be an issue. But, the Vandy people seem to act like just a few tweaks of meds and you're good to go. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 A great article really. Didnt take any one doctor view as gospel and prettymuch described what its REALLY like to have POTS.I think between Vanderbilt and Stewart/Medow we will get some firm answers sooner or later. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 3, 2012 Report Share Posted February 3, 2012 Awesome! Interesting that several major Drs were mentioned and the discussion re Dr Levine is followed by a patient who wasnt cured by his protocol. It is interesting that every single Dr thinks that exercise is the most important part of treatment. The topic comes up so often on the forum, and I am thrilled to finally see a direct answer. I guess there isn't much room to debate this anymore! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 I think most doctors believe that exercise is part of the treatment protocol but it does not cure the underlying condition. I am living proof for me at least - running 5kms three times a week didnt make POTS go away Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 There are also some aspects of POTS that are or have been led by patients.IV saline is an example. Doctors have always been resistant to providing this to POTS patients short term or regularly in the past. Ive even had one doctor roll his eyes at me for requesting it.Now it is commonly being provided in the treatment plans of many POTs patients. Many are on facebook groups talking about receiving two saline infusions a week and most agree it is superior to many other medical interventions. Many are now receiving PICC lines for their regular infusions. And while there are risks with this approach it really becomes a quality of life issue.Secondly while there is only one research paper (and a rather old one) discussing the prevalance and association of POTS and mast cell disorders, there is a growing volume of patienst on just about every POTS forum all testing positive to various markers for mast cell disorder.Thirdly, on all the forums there is always an association noted by patients with autoimmune disorders. Doctors are hearing this so frequently from patients that they are starting to at least acknowledge a possible connection. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 3, 2012 Report Share Posted February 3, 2012 I think most doctors believe that exercise is part of the treatment protocol but it does not cure the underlying condition. I am living proof for me at least - running 5kms three times a week didnt make POTS go away Agreed not a cure, but the most important part of treatment according o more than one doc in the article. People here often debate whether exercise helps at all... Quote Link to comment Share on other sites More sharing options...
maggie Posted February 3, 2012 Report Share Posted February 3, 2012 Thanks for posting the article Rachel, it was good to read. I just wish more people would take an interest in this. If I gave this to anyone I knew I don't think they would read it to see what exactly I'm going through, which to me is very sad.Maggie Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 3, 2012 Author Report Share Posted February 3, 2012 Dr. Raj said in the article that he is currently working on research to determine the reason for the low blood volume that many of us have. I hope he finds some answers. I'll have to keep my eye out for more information regarding that in the coming months and years. Yogini, I found it interesting, too, that the patient they interviewed who had followed Dr. Levine's protocol didn't benefit from it at all. In fact, it made her much worse. I do agree with the doctors that exercise is important. My doctors have been telling me ever since 1995 when I was diagnosed that exercise is important. I feel better when I move around as much as I can every day. But I have also found that if I over-do it too many times then I get worse in the long run. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 yeah they are looking at a few different angles. there is info on their research on the clinical trials website. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 3, 2012 Report Share Posted February 3, 2012 The reporter did a great job on this! Thanks for sharing this Rachel. "Dr. Robertson cautions that "what physicians label as POTS is probably dozens of diseases. Each disease may have its own characteristics and its own cause." Impossible and depressing!"he (Dr. Stewart) said. "Steady progress is being made on the underlying mechanisms of disease." This was great to see. There's hope! Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted February 3, 2012 Report Share Posted February 3, 2012 Thanks for sharing. I am wondering if there is a single spot on the website where these articles could be posted? If it is there, did i miss it? A kind of "In the News" section. We could build up a archive of local, regional and national news stories for patients and physicians to use. In my experience, it is usually easier to convince someone when it is in the paper verses whipping out an old archaic abstract. Thanks for sharing. Keep up the great work, Rachel. Lyn Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 3, 2012 Report Share Posted February 3, 2012 That is an awesome idea, Lyn! Quote Link to comment Share on other sites More sharing options...
RunningWild Posted February 3, 2012 Report Share Posted February 3, 2012 I wish I could forward this to my EP who works at Pittsburgh's Allegheny General Hospital and brushed me off---- but I don't know his email address.Regardless, great info, and something I can share with my family so they might stop thinking I'm nutso. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted February 4, 2012 Report Share Posted February 4, 2012 Thanks, Rachel~ Very interesting! Quote Link to comment Share on other sites More sharing options...
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