Top 10 Dysautonomia Links

I’ve been sick for a long time.  Back when it all got bad I didn’t think illness would last this long;  any information I found, I read and absorbed, talked about with my hubster or forwarded to my doctors.  I certainly didn’t save the links or think I’d be collecting them.  So, because this blog is a resource as well as a record, I am going to go through and find and rate the top ten links I’ve been looking at lately.
Do any of them relate to you too?
I’d love your comments or suggestions for adding to this page of links, all recommendations welcome.

Screen Shot 2014-05-31 at 3.50.17 pmThis blog…
Michelle is the literary mama of the Dysautonomia communities in Australia and New Zealand.  This weekend, she is presenting at the Emerging Writers Festival in Melbourne.  She is loved by all for her humour and her intellect.  As a neuropsychologist, her scientific approach and her hilarious and heart rending explorations into the realities of Dysautonomia make her blog a ‘Go To’ resource for so many of us:
http://bobisdysautonomia.blogspot.co.nz/

This video…
about treatable forms of Dysautonomia.  Still my source of hope.  Recorded during the Syncope and Dysautonomia Symposium in the USA, 2011.
Dr Steve Vernino, Associate Professor of Neurology
UT South Western Medical Center, Dallas
https://vimeo.com/32792885

This PDF for clinicians…
From the Mayo Clinic. A flow chart providing information about the testing algorithm for autoimmune dysautonomia:
http://www.mayomedicallaboratories.com/media/articles/algorithms/adysautonomia.pdf

This website…
caters to the information needs of Patients and Doctors.  It is well organised and easy to use. It was founded by Lauren Stiles, a big mover and shaker in the Dysautonomia community in the States.  I love her passion to help people find answers, even after she has already found her own:
http://www.dysautonomiainternational.org/page.php?ID=125

This overview…
of Autonomic Disorders of the Neuromuscular variety. From the Neuromuscular Disease Centre, Washington University  USA
http://neuromuscular.wustl.edu/autonomic.html

This update…
over on Dysautonomia International about promising research into the condition Postural Orthostatic Tachycardia Syndrome.  Research in the area of Autonomic Dysfunction is not as prevalent as the more frequently diagnosed conditions in the world of medicine.  This latest study is giving POTS patients new hope!   New Evidence of Auto-immunity in POTS:
http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

This organisation…
Dinet and Dynakids were one of the original Dysautonomia information portals and patient forums.  There is much good information to be found here. They are US based but have an international following:
http://www.dinet.org

This video about POTS…
was the first time I saw doctors and patients interviewed about what it is like, the aetiologies and symptoms of Postural Orthostatic Tachycardia Syndrome.  Still has many useful and relevant sections and is helpful for family and friends who don’t understand what and why POTS patients feel, living with POTS:
http://m.youtube.com/watch?v=8UPMYNkm6Bc

This article…
about management of patients with dysautonomia who need a general anaesthetic for surgery:
http://www.anaesthetist.com/anaes/patient/ans.htm

This Summary…
of Autonomic Testing.
http://www.touchneurology.com/…/…/articles/9076/pdf/hilz.pdf

 

2 thoughts on “Top 10 Dysautonomia Links”

  1. Thank you for this list of Top Links.
    My daughter, Tahlia, was recently diagnosed with POTS and it’s amazing to me that there are so many ”parts’ that we need to look into.
    Right now she is trying Laser treatment. We found improvement in the leg pain by the afternoon of the first treatment. It does however leave her tiredness increased for 24-36hrs.
    I’m very keen to get a handle on diet as she is not eating much and experiencing pain and tightness in her abdomen. Has had a couple of days where there are many trips to the loo.
    I was overwhelmed initially with where to start with finding help for Tahlia. As much as the GP has a patient with POTS and so a relatively quick diagnosis I’m not getting a great deal of ‘direction’ from him as to how to get improvement happening apart from exercise! Which we are now beginning to get a handle on but initially Tahlia spent many days not being able to feel her legs … Numbness and tingling. She could still walk a little but really added an uncertainty to her steps, add to this her balance being off and it’s a little difficult to ask her to take a gentle walk around our street.
    Sorry for the ‘download’.
    Very grateful for the help we have so far and very keen to have a healthy and vibrant girl back.
    Thank you.

    1. Hi Tanya, there is a fantastic youth organisation called DYNAkids online.
      I hope with all my heart that Tahlia finds the things that work for her and you get your girl back. Keep searching for doctors who have an interest that can help you. Thanks so much for the lovely comments. It’s so wonderful when readers reach out.

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