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What Is Dysautonomia?
Dysautonomia means dysregulation of the autonomic nervous system. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.
Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.
Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.
Over one million Americans are impacted with a primary autonomic system disorder. The more common forms of these conditions include Postural Orthostatic Tachycardia Syndrome (POTS) / Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA)
DINET provides information and personal stories on several types of dysautonomia. You may download our informational brochure HERE.
We publish our newsletter multiple times throughout the year in spring, summer, fall, and winter.
Please see our full issues in pdf format.
In The Latest Issue:
Click Here to download your copy today.
In The News
New Information from Dr. Blitshteyn
A new article written by Dr. Blitshteyn entitled "Postural Tachycardia Syndrome (POTS) is not caused by deconditioning" is filled with important, new information for patients. The article, published by the Pulmonary Circulation Journal is available now at this link - journals.uchicago.edu/
Exercise - a hot topic
Exercise and exercise intolerance is a frequent subject discussed by the medical community and patients with dysautonomia. DINET's latest edition of the quarterly newsletter has the results of a study focused on post exercise hypotension and the differences between night and day activity in the Research and Review article. There is also an article written by a DINET volunteer and POTS patient entitled "Exercise with POTS" by Gwen Leyden and another that touches on some of the chemistry related to exercise called "I need backup - send endorphins!" by Amy Keys. All of this information and plenty of other great articles and more research information can be found here - DINET June newsletter
The American Heart Association published an article in the Hypertension section of its website related to exercise and POTS. The article, "Exercise Training Versus Propranolol in the Treatment of the Postural Orthostatic Tachycardia Syndrome", discusses the hemodynamics and renal-adrenal responses of POTS patients to exercise versus pharmacological treatments. The full article text can be read on the AHA website link.
Do you have a question for our Medical Advisors?
DINET's Medical Advisors are physicians who specialize in different aspects of dysautonomia treatment and research. We are honored that these dedicated professionals share their time and knowledge with us and you! Our volunteer and general board member, Sarah Abraham, collects questions from DINET members and sends them along to our Medical Advisor team. Each quarter Sarah prepares the Medical Q & A column for our newsletter and shares those questions and answers with the DINET community. If you have a question for our advisors, send it along to Sarah at email@example.com and check out the most recent Q & A in our newsletter
The Results Are In - Clinical Invasive Cardiopulmonary Exercise Testing
From the Journal of the Pulmonary Vascular Research Institute
Unexplained exertional dyspnea caused by low ventricular filling pressures: results from clinical invasive cardiopulmonary exercise testing
To determine whether low ventricular filling pressures are a clinically relevant etiology of unexplained dyspnea on exertion, a database of 619 consecutive, clinically indicated invasive cardiopulomonary exercise tests was reviewed to identify patients with low maximum aerobic capacity.
To read the full article:
Standing Up to POTS, Patients Count and Wittenberg University Launch New Patient Study
The Quality of Life with POTS - Cluster Disorder Survey
This survey was designed by experts who know first-hand about living with POTS and its associated disorders. They are seeking people living with POTS and their healthy friends and family to participate in this survey so they can better understand quality of life issues for people living with Postural Orthostatic Tachycardia Syndrome (POTS). The survey is IRB approved by Wittenberg University. It takes about 20 minutes and you must be 18 or older to participate. Please note that both POTS patients and non-POTS people are needed for this study.
To learn more about this study or to get started, visit:
There is still time to participate!
The BIG POTS Survey
Vanderbilt University and Dysautonomia International have partnered to launch the largest international study on Postural Tachycardia Syndrome (POTS). POTS impacts millions around the world, yet no large studies have ever been conducted, until now.This study enables patients to share their experiences directly with researchers, an important and innovative way to study this illness.
The study’s lead investigator is Satish R. Raj, MD MSCI, Adjunct Associate Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Raj says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families”. Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International.
The Big POTS survey is open to all patients diagnosed with POTS by a physician. To learn more about the survey or to participate, visit: The BIG POTS survey