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Article About Pots In Pittsburgh Post-Gazette


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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.stm

It 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!

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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!

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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.

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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...

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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

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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.

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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!

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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

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