Article About Pots

[bebe127]

Here is an article I received from a program that my insurance includes. Haven't read it in its entirety, but looks interesting and comprehensive.

http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/abstract

[ramakentesh]

Not a bad article if you accept that psychosomatic factors amplify symptoms and are responsible for symptom chronicity.

[jangle]

I wish they'd just straight up do a RCT on CBT or therapy and see its effect on standing HR.

[ramakentesh]

They are also currently working on a hypothesis that parents that 'buy in' to the physical nature of their child's POTS symptoms 'ingrain' their child's disability!

[Katybug]

The more Mayo publishes on this subject, the less I like them. They know there are people (and specifically doctors) who take their info as gospel truth. Publishing papers like this that imply that hypervigilence and mental state are underlying causes does not help medical professionals take us seriously and I'm pretty sure 99.9% of us would like to get better.

[ramakentesh]

And people thought the deconditioning theory was damaging...

[ramakentesh]

The author is a popular guy:

http://www.ucomparehealthcare.com/drs/eduardo_benarroch/reviews.html

He also suggests that reduced MIBG reuptake is a sign suggesting neuropathy. that is possible but there is strong evidence of a defect in NET expression.

[Kellysavedbygrace]

Lol Rama!

On the flip side, Mayo's publishing of the Compass 31 Autonomic Dysfunction scale is a big help in giving docs everywhere an objective assessment tool for Dysautonomia patients. I believe Rachel started a thread on this at the first of the year.

[ramakentesh]

Mayo also published a recent study on new autoantibodies in POTS.

[kitt]

The above Mayo article is an 'abstract' of a the paper Issie posted the link it in its entirety earlier this year. I agree that if I only read the abstract I would find this concerning.

The abstract of the article and the entire article are very different. I printed the entire article out and read it carefully with a highlighter, and it's actually very good. I've shared it with several doctors.

Issie, do you still have the link to the entire article?

[bebe127]

I posted the article because after reading it, I found that I learned more than in the almost four years I've been dealing with this and was hoping that it might be helpful. Even the "specialists" that I've seen including the doctor that originally dx. me didn't give me even half the information that was in this article. As with anything else, all is subject to interpretation and we can take what we want (that might help) and throw out the rest.

Many dr.s I've been to have told me to eat more salt and drink more water as the "standard" in treating POTS, along with the ever popular exercise more. I've tried all three and none have helped me personally, but as far as other people, it has helped them tremendously and I'm so glad for them.

All of us are different and with such an illness with such varying degrees and symptoms, I think it's important that we stay vigilant in finding dr.s that will work with us and attempting to find ways to improve, whether it be by pharmacologic or nonpharacologic means.

[bebe127]

Kitt,

On the link that I posted above, the first page that comes up is the abstract. There are subsequent tabs for full text, pdf, images and references. I found the article to be quite informative.

[kitt]

Bebe,

I agree. Think this article is very good. It's long, and I found that printing it out, and reading it very carefully was helpful.

Didn't see the options. Here's the link to the full article. Found the link to the full article after you pointed to where it was. (My cognitive dysfunction...Sounds like the name of a documentary of the side effects of pots.)

http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/fulltext

[kitt]

That link didn't work. Opened the PDF link and found a diagram that is much much larger than in the full text version. Interesting. Did you see this Bebe?

PDF version, (hope the link works)

http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619612008968.pdf

[bebe127]

Kitt,

If I click the very first link I posted it all goes well. Don't know if it is the servers or whatever, I'm fairly computer-illiterate unfortunately!

The second link that you provided takes me to the exact article that my insurance sent me. Apparently, my insurance now has something new called "Medical Desicions Support" and I can go online and tell them what I was diagnosed with and they (a team) puts together a packet with a bunch of info on the dx., illness, syndrome, and whatnot. It is quite helpful, plus they have a real person you can talk to. I wish I had this 3+ years ago. As I stated above, I got more information on POTS through this article and others they sent me than I did speaking with supposed "specialists" in the field of POTS.

Now, hopefully going to move forward on being tested for MCAS. Plus, in the new program that my insurance includes is a list of specialists in my area. I'm quite excited

Glad you found it helpful