• Welcome to DINET - the Dysautonomia Information Network.  If you are a first time visitor to this site, we hope you will find it informative and supportive.  If you are a long time member of DINET, we hope you will be happy with our new site design.  We have added new features and plan to add more over time. We are aware of some technical issues with the site and we are working hard to clean up and correct the errors. We greatly appreciate your patience as we work to resolve these problems.

    Our forum is a vital part of the DINET site and organization. You can now find the Forum under our Community menu and at the address - http://www.dinet.org/forums  Your account and the way you use the forum has not changed. What has changed is the way the site’s information is organized and distributed.  The new layout makes it easier to find information and support services.  The home page now features the top trending forum topics as well as the most recent Facebook posts.  All of this is designed to make the site more useful to you and to make it easier to communicate with other members.  Again, we thank you for your patience and we hope you find the site supportive and informative.

    The DINET Board of Directors

    Michelle Sawicki, Sarah Abraham, Ellen Driscoll &

    Michael Blaney

  • 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.

  • 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.

     


     

     

  • In the News

     Petition for PoTS Research in the U.K.

    Show your support for POTS U.K. to get research launched through a consortium of local and international clinicians, leaders and patient groups. By signing this petiton and passing it along to others you'll be making a difference in lives of those affected by this life-altering condition POTS. You can help right now to get POTS research up and running in the U.K. by giving a big push for through this incredible opportunity! Sign the petition here.

                                                                                                                               10 Salty Facts for POTS Patients from Dr. Blitshteyn & Jill Brook, M.A.

    An article written by Jill Brook, Nutrionist, featured on Dr. Blitshteyn's website. This article breaks down the Salty Truth for POTS patients, check it out here, and also view other entries written by Dr. Blitshetyn, founder of the Dysautonomia Clinic and DINET Medical Advisor.                                                                                                     

     Are you a member of our Forum?

    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. Post your experiences or questions, and search through thousands of past topics. Become a member and post your introduction today, our members are the heart and soul of the DINET organization. Join here

     Be Brave: Support DINET by shopping Bravelets

      Bravelets offers beautifully made awareness items for that special Potsie in your life. A percentage of the total goes to DINET, view the updated items here.

    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/doi/pdfplus/10.1086/687757 


     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 

     

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