• Become a FEATURED MEMBER.  We are again taking applications for the Featured Member project.  The project is open to DINET members who are patients and caregivers living with dysautonomia.  The only criteria are that you are willing to share something about your journey and about something that brings you joy.  Read more about the project and how to apply on our Join Us page or write to webmaster@dinet.org

  • Dysautonomia is a term used to describe abnormal functioning of the autonomic nervous system

    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.

  • Do you have a question for our Medical Expert's?

    Medical Q & A         

    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!  If you have a question that you would like answered by our advisory team, please send it to webmaster@dinet.org   Questions are posted in our quarterly newsletter. 

     

  • Featured Members

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    Above:  Rachel Friemel
    Digital Artist, Photographer
    Visit Rachel's page

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    Above:  Joey Horist
    Screenwriter, Filmmaker
    Visit Joey's page

     

  • Discussion Forum: Trending Topics

  • Ongoing Studies & Study Information

    Recruiting:  A Study of Pyridostigmine in Postural Tachycardia Syndrome.  This is a 3 day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS.  Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure.  More about this study along with eligibility and contact information can be found here. http://www.mayo.edu/research/clinical-trials/cls-20128843

    Recruiting:  Two new studies open for patients with MSA.  The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA.  Both compounds work by enhancing the body's levels of norepinephrine.  Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University.  NYU Dysautonomia Center and Vanderbilt are long time collaborative partners in rare autonomic disorders.  Contact information and more information about the studies can be found in this article.  https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/

    Recruiting:  Vagal Stimulation in POTS- The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.   Participants must be females between the ages of 18 - 45 with POTS.  To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111

    Recruiting:   Clinical Autonomic Disorders:  A Training Protocol is a study to learn more about dysautonomias to the specific purpose of developing training protocols to help new physicians understand the illness and to better diagnose patients.  To participate in the study or read more about it, visit our studies page or go directly to the clinical trials site

    Recruiting:  The Big POTS Survey  is still going on.  

    Vanderbilt University and Dysautonomia International sponsored survey.  The study's lead investigator is Dr. Satish Raj, MD MSCI, Adjunct 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.  Go directly to the survey 

  • newInfo.jpg.4ceb83bf52c89b3ecff7f905279623ac.jpgWhat's New... 

    NEWS & INFORMATION

    Searchable pharmaceutical database.  Search generic meds for active/inactive ingredients. Work with your doctor and insurance company to find the one that is right for you.  
    https://dailymed.nlm.nih.gov/dailymed/

    Learn about the brain's ability to protect itself against low blood pressure

    New study confirms safety of asthma meds for FD patients

    Sleep disturbances and POTS  https://ww2.mc.vanderbilt.edu/adc/43572  

    IMPORTANT INFORMATION:  POTS & Ehlers-Danlos Syndrome 

    "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.

    "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS."

    https://www.ncbi.nlm.nih.gov/pubmed/28986003

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    The Mighty and DINET are partners!  The Mighty is a story-based health community that focuses on improving the lives of people facing diseases and disabilities and shares in DINET's mission of raising awareness for chronic health conditions. More than half of Americans are facing serious health conditions, The Mighty publishes real stories about real people facing real challenges.  To follow stories related to dysautonomia, please visit https://themighty.com/dysautonomia/

  • A Series presented by DINET and Dr. Svetlana Blitshteyn

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    DINET Announces 3 New Partnerships!

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    Click here to view information on our partners and read about how they strive to impact the dysautonomia community