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  • 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. 

  • 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. 

     

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  • Discussion Forum: Trending Topics

  • Ongoing Studies

    **COVID-19 Research for Dysautonomia and other rare diseases -  Research conducted by Dr. Blitshteyn as well as research conducted by the Rare Disease Network.

    RECRUITING:  John Hopkins University is conducting a study to develop a test for screening for positive diagnosis in patients with  dyautonomia-related dysmotility who are being considered for Celiac Ganglion Resection surgery.  The study's objective is to develop a test that will determine if a patient will be helped by the surgery before it is done.   To read more about this study, please visit our recruitment study page

    RECRUITING:  Clarkson University is conducting a study to learn about what factors affect the function and quality of life for people living various chronic illnesses.  The study should take approximately 45 minutes to complete and asks similar questions to those asked by healthcare providers.  Questions will include quality of sleep, fatigue, pain, etc.  All answers will be anonymous.  Participants must be 18 years or older.  Each person participating is requested to ask one healthy person to also participate but this is not required.  To learn more about this study or to begin the questionnaire, visit https://www.surveymonkey.com/r/V3P7S9J  This is an IRB approved study. 

    RECRUITING:  New study examining the impact on parents raising a child between the ages of 8 - 17 who have been diagnosed with POTS.  To read more about this study, including contact information, visit https://www.dinet.org/info/studies/studies-dysautonomia-related-chronic-illness-r107/

    RECRUITING:  Vanderbilt University is conducting a study entitled "Pathophysiology and therapy of Orthostatic Intolerance."  Studies to identify the role of the brain, the autonomic nervous system and the vasculature in Orthostatic Intolerance.  Read more about this study.

    OPEN - Recruiting:  The Mayo Clinic, is conducting a study to better understand the causes of autonomic disorders and to collect and store DNA for future studies of dysautonomia. Read more about this study

    Recruiting:  The University of CA is currently recruiting POTS patients for a clinical study examining the effect of Ivabradine on heart rate fluctuations - specifically tachycardia. Ivabradine is a drug currently used to treat heart failure but is not currently used for the treatment of POTS.  Read more about this study

    Recruiting:  What is it like living with POTS during emerging adulthood?  Virginia Tech is recruiting 18 - 29 year olds diagnosed with POTS for a family science study on POTS.  This is a parent-child study so both must be willing to participate.  Read more about the study or email Virginia Tech Department of Human Development.  

    RECRUITING:  Clinical Trial:  University of Oklahoma and Vanderbilt University are recruiting POTS patients for the Autoimmune Basis for Postural Tachycardia Syndrome study.  They are looking at the levels of immune proteins (autoantibodies) in POTS patients and their relation to symptoms over time.  Read more about the trial

    RECRUITING:  Clinical Trial:  Dr. Satish Raj and the University of Calgary is recruiting POTS patients for a study of the effects of compression on the symptoms of POTS.  Read more about the trial

    RECRUITING: Clinical Trial:  Studying Vitamin D deficiency in children ages 10 to 18.  A diagnostic workup for chronic nausea unexplained by conventional diagnostic tests has unexpectedly revealed underlying cardiovascular instability manifesting as orthostatic intolerance, primarily defined as POTS (88%).  Read more about the trial.

    Still RECRUITING:  ME/CFS: Activity Patterns and Autonomic Dysfunction this 4-year study is looking at the relationship between illness, non-improvement, patient activity, and autonomic function. The long-range goal is to look at the activities that trigger a relapse or non-improvement vs the activities that bring better symptom management.  The study will continue until December of 2019.  Visit the study page for information

    NEW:  RECRUITING:  The NIH All of Us Research Program is now open to people with or without illness.  This project's goal is to amass data from 1 million plus people in the U.S. to provide physicians and researchers the ability to use Precision Medicine to prevent, diagnose, treat and potentially cure disease and disorders in this country.  DINET is a Champion partner of this program and more information can be found on our site here

    Recruiting:  The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD.  The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis  Contact & participation information is available  - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5

    Completed, Results TBA:  PET Imaging Study of Neurochemical and Autonomic Disorders in Multiple System Atrophy (MSA) From the University of Michigan   This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression.  Contact & participation information available https://clinicaltrials.gov/ct2/show/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4

    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.   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.   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)  study 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.   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 

  • A Series presented by DINET and Dr. Svetlana Blitshteyn

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    DINET  Partners

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

     

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