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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
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.
DINET is looking for a new Board President!
Could you or someone you know be the right fit?
Are you a natural leader who is compassionate, organized, and interested in serving the dysautonomia community? If so, then you may be DINET’s Board President. Please read more
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.
View the Dysautonomia Information Network (DINET) Facebook Page for Surprising Dysautonomia Facts
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
Trending Topics on the forum throughout the month of November include: Seizure related to POTS, New Member Recently Diagnosed with POTS, Started/Stopped Beta Blockers and Tachycardia through the Roof
Be Brave: Support DINET by shopping Bravelets
With the Holidays just around the corner, 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/
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! Our volunteer and general board member, 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 firstname.lastname@example.org and check out the most recent Q & A in our newsletter
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 email@example.com
Standing Up to POTS, Patients Count and Wittenberg University Launch New Patient Study
The Quality of Life with POTS - Cluster Disorder Survey
The Big POTS Survey
Vanderbilt University and Dysautonomia International sponsored survey.