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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
Give yourself or someone you love a gift to support and inspire. Gorgeous bracelets, necklaces, earrings, even scarves, all engraved with the words "be brave". So many products to choose from in so many colors and styles. These beautiful accessories are a reminder to “be brave” – something we all need from time to time. Best of all, $10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate. Find your special style and support DINET. Buy one (or two) today! Visit DINET's online kiosk on the Bravelets page at
Volunteer Opportunities at DINET
We're looking for readers on our forum
DINET is looking for volunteers to help us keep the forum a positive experience for its 4,500 members and growing! Readers are responsible for viewing posts and material. If you are interested in becoming a Forum Reader, please contact us to complete a volunteer application. We look forward to hearing from you! Contact: firstname.lastname@example.org
Do you have a passion for the written word?
DINET's quarterly newsletter has room for a few new writers. Applicants do not need to have professional writing experience but do need solid language and grammar skills. This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community. If you are interested in joining our team, please contact email@example.com An application and at least 2 writing samples will be required.
Brain "fog", inflammation and obesity: key aspects of neuropsychiatric disorder improved by luteolin
From Frontiers in Science
Brain “fog” is a constellation of symptoms that include reduced cognition, inability to concentrate and multitask, as well as loss of short and long term memory. Brain “fog” characterizes patients with autism spectrum disorders (ASDs), celiac disease, chronic fatigue syndrome, fibromyalgia, mastocytosis, and postural tachycardia syndrome (POTS), as well as “minimal cognitive impairment,” an early clinical presentation of Alzheimer's disease (AD), and other neuropsychiatric disorders. Brain “fog” may be due to inflammatory molecules, including adipocytokines and histamine released from mast cells (MCs) further stimulating microglia activation, and causing focal brain inflammation. Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases. The flavone luteolin has numerous useful actions that include: anti-oxidant, anti-inflammatory, microglia inhibition, neuroprotection, and memory increase. A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain “fog” in mastocytosis patients. Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain “fog.”
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
The Center for Hypotension Department of Pediatrics is recruiting participants aged 14-29 years old for a study of postural vasovagal syncope (VVS, postural faint) and neuropathic postural tachycardia syndrome (POTS). more info.. Further details of the research and representative consent forms can be found on our web-site, syncope.org
Or at our listing on Clinicaltrials.gov
If interested, please reply to:
Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532