OI Resource - A Resource about Orthostatic Intolerance

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Links and More Information

On this page:

Note: "(on site)" means this information is available on this website through the link provided.
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Links and More Information

Research Centers for Orthostatic Intolerance (OI) and Autonomic Disorders

Autonomic Disorders Rare Disease Consortium

This is a group of experts who are collaborating to better understand and treat these diseases. Information about various autonomic disorders and opportunities to participate in new research studies are available at this website. It also includes a registry to join and be notified about future research studies.
http://rarediseasesnetwork.epi.usf.edu/ARDCRC/

 

Vanderbilt Autonomic Dysfunction Center

Mission - Autonomic disorders cause loss of regulation of the heart, blood vessels, stomach, bowel and bladder. Affected patients may have palpitations or lose consciousness, and some have a rapidly fatal course. We hope to join with patient support groups to harness the knowledge and energies of physicians and investigators in the major centers where these patients are cared for, so that they can discover ways to treat and to cure these diseases. The greater the collaboration between doctors and patients, the more we can learn about these disorders. This important first step is necessary if we are ever to find genuinely effective and curative treatments.
www.mc.vanderbilt.edu/root/vumc.php?site=adc

Copyright © 2014, Vanderbilt Autonomic Dysfunction Center

 

Center For Hypotension - Julian M. Stewart MD, PhD, Director

Our purpose at the Center for Pediatric Hypotension is to investigate, evaluate, and treat adolescents and young adults with orthostatic intolerance including those with orthostatic tachycardia, syncope and other forms of chronic orthostatic intolerance including the chronic fatigue syndrome.
www.nymc.edu/FHP/Centers/Syncope/index.htm

Copyright © 2014, Center for Pediatric Hypotension

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Postural Orthostatic Tachycardia Syndrome (POTS)

The Postural Tachycardia Syndrome (POTS): pathophysiology, diagnosis & management by Dr. Satish R. Raj

This article gives a good overview of the different types of Postural Orthostatic Tachycardia Syndrome (POTS) and potential treatments for each type. It's really important to work closely with a knowledgeable doctor on this.
www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16943900

 

Viral illness may spur ‘standing up’ disorder Dr. Raj is a co-author of this research study.

Wow; what an interesting development in POTS medical research!
http://news.vanderbilt.edu/2014/03/viral-illness-may-spur-standing-up-disorder

 

POTS Research Highlights at Vanderbilt Autonomic Dysfunction Center
www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38877

 

Dysautonomia Information Network

Our Mission: To raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

Be sure to look through the Physician List by country and state.
www.dinet.org

Copyright © 2014, Dysautonomia Information Network

 

Taking a Negative and Making a Positive

I was invited to write an essay for the Dysautonomia Information Network newsletter in Summer 2008.
www.dinet.org/images/newsletters/2008_Summer_Newsletter.pdf

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Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI)

ME/CFS Guidelines: Management Guidelines for General Practitioners (on site)
A guideline for the diagnosis and management of ME/CFS in the community or primary care setting
Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS)
This is in PDF/Adobe Acrobat format. (110 KB)

A taskforce of South Australian clinicians and others with experience in ME/CFS have developed this more succinct set of guidelines for GPs and other medical practitioners. Its focus is on the basic diagnosis and management of this condition in the community or primary care setting.
Developed in South Australia June 2004
Posted with permission from the author.

 

No Other Illness Like This One: Dr. Bell Finds Dramatic Abnormalities In CFIDS - Part 1 and Part 2 (on site) by Joan S. Livingston

This article is about low blood volume and Orthostatic Intolerance (OI) in Chronic Fatigue Syndrome (CFS) and was originally posted at chronicfatigue.about.com in July 2000.

 

The CFIDS Association of America

Working to conquer chronic fatigue and immune dysfunction syndrome.
The CFIDS Association of America provides users access to a generous collection of resources, including: information on the diagnosis and treatment of chronic fatigue and immune dysfunction syndrome (CFIDS); resources for patients, caregivers, medical professionals, the media and young people with CFIDS; and information about Association-led programs aimed at empowering the patient and eradicating the illness.
www.cfids.org

Copyright © 2006, The CFIDS Association of America, Inc.

 

Dr. David S. Bell’s website offers more recent issues of the Lyndonville News newsletter and the entire book Faces of CFS.
www.davidsbell.com
[Note: As of 2013, this website is not available.]

Also, see these pages (on site) Orthostatic Intolerance Test for more explanation on the simple testing procedure, Orthostatic Intolerance Test Results for more details about the 5 types of Orthostatic Intolerance, and Faces of CFS for another example of the OI test and using compression pants.

More resources, articles, and books about Chronic Fatigue Syndrome (CFS) by David S. Bell, MD, FAAP

 

           

 

The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance

In the Articles section, this site includes archives of some articles of The Lyndonville News newsletter, many of which were written by David S. Bell, MD, FAAP.
www.pediatricnetwork.org
[Note: As of May 2011, this website is not available.]

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Search Some of My Favorite Websites about Orthostatic Intolerance

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Vertical Heterophoria

I included my experience with this on the Update page. I thought you might also be interested in additional information about Vertical Heterophoria to share with your doctors, too.

Vertical Heterophoria: New Discoveries Enable Treatment of Many Associated Disorders (on site)
by Dr. Debby Feinberg and Dr. Mark Rosner
Refractive Eyecare in February 2012
This is in PDF/Adobe Acrobat format. (846 KB)

This article has a thorough description of the testing and symptoms of Vertical Heterophoria.

Posted with permission from the authors and permission pending from the publisher.
Also available at this webpage - www.refractiveeyecare.com/2012/02/special-feature-vertical-heterophoria-new-discoveries-enable-treatment-of-many-associated-disorders

 

Vision Specialists of Michigan - www.VSofM.com
Dr. Debby Feinberg specializes in the treatment of Vertical Heterophoria.

From the homepage - "The doctors at Vision Specialists of Michigan have made pioneering discoveries into the diagnosis and treatment of Vertical Heterophoria and Superior Oblique Palsy, two uncommonly recognized and poorly understood eye misalignment conditions. Those who suffer from Vertical Heterophoria or Superior Oblique Palsy tend to have a small amount of vertical eye misalignment, which the brain corrects by directing the eye muscles to properly reposition the eyes. However, using the eye muscles in this manner overworks them and they become strained and fatigued, causing the many symptoms of Vertical Heterophoria and Superior Oblique Palsy. The severity and number of symptoms vary from person to person – some people are much more affected than others. Traumatic Brain Injury (TBI) has been known to cause these symptoms.

Most patients experience a marked reduction in their symptoms with precise prismatic correction. The doctors at Vision Specialists of Michigan have developed a very detailed and specialized NeuroVisual Evaluation, which allows for the accurate diagnosis and treatment of Vertical Heterophoria and Superior Oblique Palsy. Using realigning prismatic spectacle lenses, the strain and fatigue within the visual system is reduced or eliminated. Patients notice significant improvement in their symptoms during their first office visit. Improvement continues over the course of several visits as the prismatic prescription is fine-tuned and customized for the individual.

A specialized Questionnaire has been developed by the researchers at Vision Specialists of Michigan to identify those who might be suffering from Vertical Heterophoria or Superior Oblique Palsy."

Vertical Heterophoria Questionnaire - http://vsofm.com/patients/vertical-heterophoria-questionnaire/

Dr. Debby Feinberg and her husband, Dr. Mark Rosner, have just finished a book - If The Walls of My Exam Room Could Talk - about patients' experiences with Vertical Heterophoria.

Copyright © 2014, Vision Specialists of Michigan

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Personal Links

These are ministries that have helped me or I have gotten to support in some way.

Would you like to know my God? He has helped me through all of this. Pray this prayer. - http://www.kcm.org/real-help/resources/prayer-salvation-and-baptism-the-holy-spirit

Kenneth Copeland Ministries - www.kcm.org

Joyce Meyer Ministries - www.joycemeyer.org

Mercy Ministries of America

Mercy Ministries is a non-profit organization for young women who face life-controlling issues. We provide residential programs free of charge designed to address the whole person: spiritual, physical and emotional. Our non-conventional approach to the underlying issues changes more than behavior; the Mercy Ministries program changes hearts and stops destructive cycles.
Our program includes life-skills training and educational opportunities that help ensure the success of our graduates. Our goal is to have each young woman not only complete the program but also discover the purpose for her life and bring value to her community as a productive citizen.
www.mercyministries.org

Copyright © 2005, Mercy Ministries of America

Project Linus

Project Linus is a 100% volunteer non-profit organization with a two-fold mission:
First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer "blanketeers."
Second, it is our mission to provide a rewarding and fun service opportunity for interested individuals and groups in local communities, for the benefit of children.
With chapters in all 50 states, Project Linus continues to grow. Blankets are collected locally and distributed to children in hospitals, shelters, social service agencies, or anywhere that a child might be in need of a big hug.
www.projectlinus.org

Copyright © 2006, Project Linus

Search Some of My Favorite Websites about Using Credit-by-Exam to Earn a College Degree

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Be sure to shop here for Study Guides, too.

Trade Books for Free - PaperBack Swap.

My mom does a lot of reading and likes to use this website to trade her books. It is called PaperBackSwap.com. They also have hardcover books, textbooks, and audiobooks, plus CDs and DVDs (on a separate website).

My mom can get a pre-printed postage label from her computer, so she does not have to go to the post office to mail her books, and she re-uses the packaging that her books come in. We especially like PBS because we know the books and DVDs are going to people, who would like to have them. (We get attached to our books and DVDs - even the ones we do not want to keep anymore! We found out the library actually throws away some that have been donated and that really bothers my mom!! There are too many people in this world who do not have anything to read and most of the books she was donating were Christian books!)

My mom has belonged to PBS for several years, and she has received many more books than she has given. If she does not have any (or enough) credits from trading her books, she can buy credits for $3.95 per book (or $2.00 in the book bazaar forum at PBS, where there are a lot of book deals, too). That is a good price since Amazon’s shipping is $3.99. (She still uses Amazon, if there is a long waiting list for a book she wants soon.) When she hears that a newly published book she wants is coming out, she gets on the waiting list (wish list) right away. She has gotten “brand new”, hardcover books that have been published less than a month before. Someone bought it, read it once, and gave it away. She has gotten a few “not-so-nice” books, but not many. (My mom does the reading and I like to help her with the trading; I love this game!)

As of February 2015, PBS added 2 membership levels that have an annual fee and 1 membership level that has a 49cent transaction fee for book requests.

Happy trading!

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