• Thank you to all of our volunteers and members who keep this site active and full of useful information and supportive conversation.   We are so happy to share the news that  since the launch of the new site in late December, DINET is now reaching four times the amount of patients and caregivers than before.   Thanks to all for your support and patience.  Keep spreading the word about us.  If you would like to volunteer or donate, please contact 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.

  • Trending Forum Topics

  • Studies

    The ENCHANT Study:  Electrographic and Neurohormonal Characteristics of Adolescent Nausea during Tilt-table testing

    Description:  Nausea is common with orthostatic intolerance. Our case-control story measures how stomach electrical activity changes in relation to various serum hormones during tilt-induced syncope. Study participants will undergo tilt-table testing with electrogastrography (EGG), electroencephalography (EEG), quantitative sweat, serial saliva samples, and IV placement for serial blood draws. All research testing is performed at Nationwide Children's Hospital, Columbus, Ohio.

    Particpation Requirements: We are recruiting cases and controls. Healthy control subjects will be paid ($200) for their participation. Cases are recruited directly from clinic referrals and will not be paid, but we will share testing results with all patients who participate. Our study does not cover any costs related to travel or lodging or any costs associated with clinic referral or medical care.

    Eligibility criteria for all participants:

    1. Age 12-21 years

    2. Body-mass index 18.5-25 kg/m2

    3. Normal cardiac exam

    Contol subjects must be in good general health and free of dizziness/lightheadedness, syncope, chronic nausea, anxiety, depression, and chronic medications.

    We are currently recruiting patients with syncope who do not have chronic or frequent gastrointestinal complaints such as nausea. We will be recruiting patients with syncope who do have chronic gastrointestinal complaints in near-future. All medicines that can affect tilt-table results or gastrointestinal function will be held at least 5 days prior to testing.

    Contact Person: Geoffrey Heyer, MD geoffrey.heyer@nationwidechildrens.org

     


    Ongoing Studies

    Standing Up to POTS, Patients Count and Wittenberg University Launch New Patient Study

    The Quality of Life with POTS - Cluster Disorder Survey

    Go directly to the survey or read more about it.

     

    The Big POTS Survey

    Vanderbilt University and Dysautonomia International sponsored survey.

    Go directly to the survey or read more about it.

     


     

     

  • donate-graphic.jpg

  • In The News...

                                                                                                                                                                                                                 

    A New Series presented by DINET and Dr. Svetlana Blitshteyn

    Dr. b true or false series intro.jpg

     dr. b true r false series 2.jpg

    DrB true false series 1.jpg

    Have you heard about our


    Forum? Connect with others..

    Support-Group.jpg

    Our Forum has over 5,000 members - you aren't alone in fighting your battle with Dysautonomia!  Whether you are a patient or a caregiver, the forum can help you find others who can relate to your journey. Share experiences, tips, and more  Join here


     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!  DINET's Board Secretary & Forum Volunteer, 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 dinetandforuminfo@dinet.org 

    14731139_1491858780829377_8313187933753765424_n.jpg