COVID-19 Vaccination recommendation: DINET encourages all its members to receive vaccinations and boosters for COVID-19 unless specifically advised against it by your medical provider.To learn more about COVID-19 and Dysautonomia, watch Dr. Svetlana Blitshteyn's videoDINET recommends:
Compass Points the Way by Alexis Kline is the story of a young life interrupted, as told by a young woman living with POTS. The book gets to the heart of many shared experiences that people go through when a healthy life shifts to a life with chronic illness. This is a worthwhile read for patients and caregivers of any age learning to live with a chronic illness. Read a preview of the book on Amazon bit.ly/3LBK9q3
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 Experts?
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 firstname.lastname@example.org Questions are posted in our quarterly newsletter.
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Discussion Forum: Trending Topics
NEW: Study open to people who developed POTS after being infected with COVID-19. For more info and to see if you qualify, visit https://www.alphastudyforpots.com/#!/
NEW: Patient-reported outcome study on the effect of dyspnea on quality of life for people living with dysautonomia DINET members are encouraged to complete a short survey to participate in this IRB-approved study by the University of North Carolina Pembroke. Read more about this study on their website or visit their Facebook page for more info.
NEW: Sexual dysfunction in POTS patients. Help POTS research by participating! Dr. Svetlana Blitshteyn is recruiting now for a study on sexual dysfunction in POTS patients To participate: https://patientscount.org/sdp
NEW: Clinical Trials Mayo Clinic - Wearable devices to diagnose POTS | Hydration Status of POTS patients | Oxygen Consumption and Cardiac Output | Sleep timing and duration | Remote self-training program for POTS patients | Effects of symptom severity, depression, anxiety
NEW: Para- and Post Infectious Autonomic Dysfunction: The aim of this study is to identify specific infectious diseases associated with autonomic dysfunction and to identify patterns.
Mayo Clinic, Scottsdale AZ
Contact for more information: Marie Grill, MD, 480-301-8000 or email Grill.Marie@mayo.edu
CLOSED: (results pending) 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
CLOSED: 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: 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
COMPLETED RESULTS TBA: 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.
ACTIVE NOT 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: 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
Completed, results TBA: 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 effective 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
Completed, results TBA: 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
NEWS & INFORMATION
NEW: Long-COVID: major findings and recommendations
NEW: Study on risks of Post COVID-POTS after vaccination and response from leading POTS research, Dr. A Fedorowski and Dr. S. Blitshetyn
NEW: Diagnostic Code for POTS - a major breakthrough for the dysautonomia community. https://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G90-/G90.A
NEW: POTS after COVID: Research study from Dr. Svetlana Blitshetyn and Dr. Sera Whitelaw about the effects of COVID on patient with POTS
NEW: Long COVID and POTS. Read the summary article about the connection on MNT or the full research article published in eClinical Medicine here: https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext#seccesectitle0048
Article: Generalized Anxiety Disorder (GAD) study links an abnormal connection between the ANS and the heart. Read the summary on MNT or the full study in the Journal of Psychiatry here: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2788768
Article: Nutritional implications of patients with dysautonomia and hypermobility syndromes
Speaker Series Videos: Our 4 part series DINET Dyscussions is available now on our YouTube Channel. Learn from the leading doctors in the field of POTS & Dysautonomia - hear what's new in research, treatment, the COVID-19 connection and much more. Visit our YouTube Channel.
SURVEY RESULTS: Preliminary results from the Rare Disease Network and NIH about the effect of COVID-19 on patients with chronic rare diseases. A summary of the results can be found at https://www.rarediseasesnetwork.org/news/2021-02-10-COVID19-survey-preliminary-results
NEW STUDY RESULTS: Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome https://www.jacc.org/doi/10.1016/j.jacc.2020.11.040
ME/CFS and COVID and the long haul ahead https://time.com/5897992/long-haul-coronavirus-me-cfs/?mc_cid=e6042d0e84&mc_eid=40312dfdd5
The autonomic nervous system and COVID https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7374073/
A look at managing leg weakness for MS patients. Great info applicable to the weakness experienced by people living with dysautonomia https://www.mymsteam.com/resources/managing-ms-leg-weakness
A look at POTS as an autoimmune disease and updates on the latest autonomic research https://link.springer.com/article/10.1007/s10286-019-00661-5
Drug discovery programs for synucleinopathies in Multiple System Atrophy https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1008222
The impact of Dysautonomia and Guillian Barre syndrome on functional outcomes of patients http://bit.ly/2wu9tJZ
Test developed for CFS/ME to detect the reaction of immune cells and blood plasma to stress. (Pub May 2019) https://www.pnas.org/content/early/2019/04/24/1901274116
Research published by Frontiers in Neuroscience demonstrate improvements in cognitive function, as well as a decrease in HR in POTS patients after rapid water ingestion. (Pub April 2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465605/
Study released by Dr. Lucy Diss and colleagues about the effects of propofol on motility. Published in Autonomic Neuroscience. (in progress for Pub July 2019) Abstract: https://www.sciencedirect.com/science/article/abs/pii/S1566070219300426
Study released by Dr. Julian Stewart and colleagues discusses Postural Hyperventilation and the resulting variant POTS disorder. Pub Journal of the American Heart Association.
An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211
The Journal of Parkinson's Disease reviewed the impact of different exercise modes on people suffering from Parkinson's Disease. Pub IOS Press, Feb 2019 https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181484
Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250
Results: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved in the physiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348
NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Download the full article from this page.
Study results: Diclofenac linked to increased risk in cardiovascular health. Research by The BMJ - https://www.bmj.com/content/362/bmj.k3426
Updated from CDC: https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455
Study results: Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607
Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR.
Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study
Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018
Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS
Article synopsis: https://bit.ly/2GhF5FK
Research Article: https://insight.jci.org/articles/view/98410
Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php
Genomics and Health Impact Blog - a discussion about gene testing from the CDC
There have been enormous contributions toward disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/
1st lab test to detect concussion approved by FDA
For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough
Neuroprotective diet having good results for people living with MSA
POTS & Ehlers-Danlos Syndrome
"Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.
"It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS."
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