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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Information Resources

by Ellen Driscoll
POTS has been receiving an increase in attention in both the media and the medical field as a result of COVID-19 infections. For many patients, illness continues long after they have come through the COVID infection.  This syndrome is commonly referred to as Long COVID or the patients experiencing this are called "Long Haulers".  For many people, the after effects of illness or the long haul occurs months after the initial infection has resolved. In a recent study by Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, 6 to 8 months after COVID-19 infection, patients developed residual autonomic symptoms debilitating enough to prevent a return to work. (1) What is not known is if a history of mild autonomic dysfunction or other markers that are common triggers for autonomic dysfunction such as concussion may be risk factors for developing post-COVID autonomic disorders. (1) 
In a recent survey published in eClinical Medicine, almost half (43.4%) of their respondents developed at least one post COVID condition, and almost 3/4 (72%) of those patients reported symptoms suggesting POTS as a secondary disorder post infection (2). The symptoms, post illness, continuing for 3 to 6 months as part of the diagnostic criteria.  A Mayo Clinic Study found 80% of long-haulers living with "persistent fatigue" and half living with "brain fog" (5).  The Mayo Clinic's CARP program (COVID-19 Activity Rehabilitation Program) reports 59% of patients with respiratory complaints and one-third of long-haulers reported being unable to perform daily tasks associated with managing day-to-day life (5) The prevalence of POTS was documented in an international survey of 3,762 long-COVID patients, leading researchers to conclude that all COVID patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.” according to Dr. Peter Rowe, John Hopkins.(8) Another common condition tied to the after effects of COVID-19 is ME (CFS) (2) or Chronic Fatigue Syndrome.  Dr. Rowe has treated both POTS and CFS patients for over 25 years and said every doctor with expertise in POTS is seeing long-haul COVID patients with POTS, and every long-COVID patient he has seen with CFS also had POTS. (8) For physicians, diagnosing these complex conditions can be made more difficult by the fact that ME and POTS can have many over lapping symptoms.  
The treatment for POTS can be complicated given the multisystem effect the disorder has on the body. Research from John Hopkins suggests that it is not only acute COVID infections that are resulting in long lasting symptoms, citing patients with mild COVID illness also reporting signs of possible ANS dysfunction that may suggest POTS.(6)  What is less known is how long these post-COVID illnesses may last.  According to Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, the claim that patients can outgrow POTS is unrealistic.  She says "my go-to answer is we don't know if/when you'll recover, but you'll feel better with the right treatment." (7)
For people living with POTS before becoming infected with COVID-19, POTS symptoms may temporarily worsen (6).  However, there is no evidence to date that there are permanent effects on the ANS or the progression of the disorder.  Treatment for Post COVID POTS is similar to POTS treatment unrelated to COVID. Frequently a pharmacological approach combined with life-style alterations and exercise, as tolerated, gives the patient the most long-lasting benefits.(6) However, in both acute COVID illness and mild illness, physical therapy and/or rehabilitation may be necessary to help with reconditioning due to the multisystem involvement caused by COVID.(6) Each patient should have an individual treatment plan developed and monitored by a physician knowledgeable about POTS and ANS function to be the most effective.
Complicating treatment is that the number of physicians familiar with the diagnosis and treatment of POTS is insufficient for the numbers of new cases of Post COVID POTS (4) Dr. Rowe says he expects the lack of medical treatment to worsen. (8) The waiting lists for specialists in ANS dysfunction can be 6 - 12 months or longer and the multi-disciplinary approach necessary for the treatment of POTS is rarely available in clinics where appointments may be open.  In an American Autonomic Society article addressing these concerns, Dr. Satish Raj and associates comments "These patients have complicated medical conditions that will require longer visits and more allied health care personnel (including nurses, physiotherapists and psychologists) to deliver the needed care. In other words, it will not be possible to address the needs of this population without a commitment not just from the providers, but also hospitals and medical center administration." (4)
Although the mechanism causing Post COVID POTS is unknown, recent findings suggests inflammatory, auto-immune responses and the generation of auto-antibodies  to be at play (3) It is postulated that the cytokine storm from the COVID-19 infection results in sympathetic dysregulation, causing the abnormal autonomic response in POTS (3) Further studies are needed to determine whether post-COVID-19 autonomic disorders are rooted in autoimmunity and what type of antibodies or cytokines may be mediating the autoimmune and/or inflammatory process.(1) Congress has allotted 1.5 billion in funding to the National Institute of Health over the next four years to study post-COVID conditions (4).  The light at the end of the devastation caused by COVID-19 may be the awareness it is bringing to some of the less familiar, yet debilitating illnesses like POTS and CFS into the forefront of the medical community.   
To learn more about COVID-19, watch Dr. Blitshteyn's video
Resources and References
1. Postural Orthostatic Tachycardia Syndrome (POTS) and other autonomic disorders after COVID infection: a case series of 20 patients, Dr. Svetlana Blitshteyn  and Sera Whitelaw
2. Characterizing long-COVID in an international cohort: seven months of symptoms and their impact.
3. Management of Long-COVID and Postural Orthostatic Tachycardia Syndrome with Enhanced External Counterpulsation
4. American Autonomic Society Long COVID-19 and Postural Orthostatic Tachycardia Syndrome: An American Autonomic Society Statement (with Dr. Satish Raj)
5. Post-COVID-19 Syndrome (Long Haul Syndrome): Description of a multidisciplinary clinic at Mayo Clinic and characteristics of the initial patient cohort
6. COVID-19 and POTS: Is there a link?
7. @dysclinic Twitter, S. Blitshetyn MD, Dysautonomia Clinic #longCovid
8. Little known illnesses turning up in COVID long-haulers

Fainting or coming close to fainting is one of the very common symptoms of POTS and other forms of dysautonomia.  If you have experienced it, it is frightening and extremely debilitating when it is happening on a regular basis.  
DINET has produced an excellent video about the difference between syncope and presyncope. https://youtu.be/M6MOn0vkVnA
The American College of Cardiology produced an excellent graphic to show how common syncope is in the general population 

Featured below are ongoing studies related to dysautonomia and POTS related illnesses.  DINET does its best to select the studies that we believe will best appeal to our community. If you know of a study that you would like to share with DINET, please email the information with the link to the study, to webmaster@dinet.org All information will be reviewed.  
Recruitment Studies 
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
(RESULTS) Patient research:  NIH supported research is being conducted by the Rare Disease Clinical Research Network on the impact that the COVID pandemic is having on people living with rare diseases.  You do NOT have to have been tested for COVID or have had symptoms of illness, the only criteria is to be under 90 years old and to have a rare disease.  Caretakers or parents of children with rare diseases are also encouraged to participate.  Read more about the goals of the study and the process at this link:  A summary of the survey results can be found here:   https://www.rarediseasesnetwork.org/news/2021-02-10-COVID19-survey-preliminary-results
COMPLETE WITH RESULTS:  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  
***RECRUITING:  DINET has partnered with PCORI  (Patient-Centered Outcomes Research Institute), the University of Pittsburgh and the University of Pittsburgh Medical Center in the Story Booth project.  Research is crucial to helping us further our understanding of POTS and other forms of dysautonomia and to identify ways to prevent or cure these conditions.  That's why DINET is parterning with the Patient-Centered Outcomes Research Institute (PCORI) and the University of Pittsburgh on their MyPaTH Story Booth Project.  The project aims to help researchers better understand the dysautonomia patient experience with illness, coping and the healthcare system.  Researchers hope their findings will lead to the development of reserach studies that address topics that are important to patients and caregivers.  Please visit our Story Booth page for more detailed information or to get started sharing your story.  https://www.dinet.org/member-stories/story-booth-project-sharing-the-stories-of-patients-and-caregivers-r209/
CLOSED: (results pending) John Hopkins University is examining the use of a temporary celiac ganglion block before celiac ganglion resection in dysautonomia-related bowel dysmotility.  Autonomic celiac ganglia resection has been shown to alleviate symptoms of dysautonomia-related dysmotility by interrupting the sympathetic stimulation to the GI system.  Currently there has been no test to confirm this diagnosis pre-surgery.  This studies objection is to temporarily block the ganglion to see if the symptoms go away, therefore confirming diagnosis and allowing for the more permanent surgical action.  This study is recruiting patients with chronic dysmotility who are considering Celiac Ganglion resection.  For further criteria and information about this study, please visit:
Contacts:  Christos Georgiades, MD PHD cgeorgi@jhmi.edu
Beatriz Kohler, bkohler@jhmi.edu
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.  Blood pressure and HR are measured laying down and standing at regular intervals.  Blood samples are drawn for hormones affecting blood pressure control.  Some studies require tilt table testing and medication administration.  
Eligibility:  All participants are adults.
Contact Information:
Principles:  David Robertson, M.D., Bonnie Black, RN
Vanderbilt University, Clinical Research Center
Nashville, TN 
FAX:  615-343-8649
email:  ADCResearch@vanderbilt.edu
OPEN ENROLLMENT:  The Mayo Clinic is conducting a study to better understand the causes of autonomic disorders.  The study includes the collection of DNA for future studies.  This study is being conducted in part by Dr. Philip Low, one of the leading researchers in this field.
Eligibility:  Males and females (non-pregnant) age 13 years and older diagnosed with MSA, PAF, Autonomic Neuropathies, NOH, POTS, Dysautonomia and healthy participants.   Orthostatic range must include a systolic BP deduction of > 30 mm Hg or mean BP reduction of > 20 mm Hg that occurs within 3 mins of head-up tilt. 
For help understanding the criteria or for more information about the study, please contact Tonette Gehrking CAP at gehrking.tonette@mayo.edu or call 507-284-4462  
Participating Clinics:  Rochester, Minnesota. 
RECRUITING:  Parent-Child Dyadic Experiences Living with Postural Orthostatic Tachycardia Syndrome (POTS) during Emerging Adulthood.  What is it like living with POTS during emerging adulthood?  Virginia Tech wants to know.  If you are interested in joining a family science study on POTS, please contact Masumeh@vt.edu.  Participants must be 18-29 years old, diagnosed with POTS.  This is a parent-child study, so both must be willing to participate.  Participants must reside in the U.S.   
Virginia Polytechnic Institute and State University
Department of Human Development
Principal Investigator: Dr. Carolyn Shivers
Co-Investigator: Masumeh Farchtchi
Contact: Masumeh@vt.edu   
Specifics about the study and a consent form will be emailed to you if you are interested. 
Recruiting:  Vitamin D Deficiency in Dysautonomia  In previous work the investigator identified a group of children between the ages of 10-18 years whose diagnostic workup for chronic nausea unexplained by conventional diagnostic tests has unexpectedly revealed underlying cardiovascular instability manifesting as orthostatic intolerance, primarily defined as postural orthostatic tachycardia syndrome (POTS) (88%). While this is an atypical initial presentation for orthostatic intolerance in general, the investigator believes that the cardiovascular problem is serious and represents a cause of nausea in a majority of these individuals, as treatment of the POTS with fludrocortisone reduced the symptoms of nausea. While fludrocortisone treatment abrogates the fall in baroreflex sensitivity (BRS) during tilt in part, it did not completely correct the tachycardia symptoms or the BRS suppression during HUT. Furthermore, it caused an elevation in MAP in a supine position, which may lead to future cardiovascular problems such as early onset hypertension and cardiac hypertrophy. This argues for a different treatment approach. The investigator presents preliminary data in this application revealing that OI subjects tend to have lower 25-hydroxyvitamin D (25(OH)D) compared to non OI subjects.
Open to children 10 - 18
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.  Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure.
Eligibility:  Diagnosis of Postural Tachycardia Syndrome using the following criteria:
Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt.
Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking.
Both criteria must be fulfilled
See study online for exclusions and further information
Mayo Clinic location, Rochester MINN, Principal Investigator:  Dr. Philip Low
Contact:  Tonette Gehrking, CAP, 507-284-4462, gehrking.tonette@mayo.edu
Recruiting:  ME/CFS Activity Patterns and Autonomic Dysfunction  The purpose of this study is to identify daily activity patterns, negative life events and autonomic abnormalities that may be related to non-improvement in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For both naturalistic studies and behavioral intervention trials, roughly 50% of patients report worsening or unchanged illness. The proposed four-year study would be the first to look at the relationship between illness non-improvement, patient activities at home and autonomic function. Our long-range goal is to identify physiological signals and activity patterns that predict non-improvement and relapse and develop a self-management program that prescribes improvement-linked behaviors and discourages non-improvement activities.
Contact: Particia Bruckenthal, PhD, RN   631-444-1172  particia.bruckenthal@stonybrook.edu
Contact: Jenna Adamowicz, MA  631-371-4417  jenna.adamowicz@stonybrook.edu
STILL RECRUITING:  Study 2:  Norepinephrine Transporter Blockade, “Autonomic Failure”
This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH.
Eligibility:  40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests.
Estimated completion date:  July 2020 
Contact:  Bonnie Black, RN, 615-*343-6862, bonnie.black@vanderbilt.edu
Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org
See study for further info and exclusions:  https://clinicaltrials.gov/ct2/show/NCT02784535
NYU Information sheet: 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) 
The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.
Eligibility:  Participants must be female between the ages of 18-45 diagnosed with POTS.
See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 
This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium 
Contact:  Vanderbilt University Medical Center Nashville 
Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu
Still 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.  Both compounds work by enhancing the body’s levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University.  NYU Dysautonomia Center and Vanderbilt are longtime collaborative partners in rare autonomic disorders.
NYU Information sheet:  https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Recruiting:  The Big POTS Survey is still recruiting  
This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center.  Dr. Rah 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. DI is sponsoring this survey. 
COMPLETED:  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
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.  https://clinicaltrials.gov/ct2/show/NCT02725060?term=autonomic+dysfunction&cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=5   
CLOSED: Clarkson University is conducting a study to learn about what factors affect the function and quality of life for people living with 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 exempt study. 
COMPLETED:  University of CA is studying the effect of the drug Ivabradine, a drug currently used for heart failure, to examine the possibility of its use as a treatment for heart rate issues in POTS patients.  
University of CA, San Diego
Investigator:  Pam Taub, MD
For more information: https://clinicaltrials.gov/ct2/show/NCT03182725?cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=3
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. 
Eligibility:  30 - 80 years old
Gender:  AllSubject:  diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination
Timeline:  Less than 4 years from the time of documented diagnosis
See study online for exclusions and further information. 
Contacts:  Arijit K Bhaumik, B.A. CCRP, 734-936-8281 arijit@umich.edu
Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, ednarose@umich.edu
Estimated Primary Completion Date:  July 2018
(Completed,  Results TBA) The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia 
The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA.
Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures.
See study for more info and exclusions:  
New York University School of Medicine 
Estimated Completion date:  September 2019
Contact:  Horacio Kaufmann MD, 212-263-7225,horacio.kaufmann@nyumc.org Contact:  Jose Martinez, MA, 212-263-7225, jose.martinez@nyumc.org
(CLOSED RECRUITMENT) Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension
This Study is in collaboration with Theravance Biopharma R & D  They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA.  This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH.
Eligibility: 40 years and older, All Genders
Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension)
At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing.
Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate.
For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1.
Estimated completion date:  June 2018 (Completed, results not yet published)
See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755 

UPCOMING EVENTS:  DINET will bring the experts to you with 4 speaker sessions about POTS throughout the month of October. 
This speaker series will feature sessions from premier doctors and researchers presenting the latest information about POTS, treatments, research and the facts about COVID and post-COVID illness and its connection to POTS.  
Each Tuesday, Beginning October 12th through November 2nd, join us for a livestream event on our YouTube channel.  Subscribe now to the channel to be sure you don't miss a single topic. 
Do you have questions for the experts?  Send them to webmaster@dinet.org  Select questions will be answered during the sessions. 
Learn about the sessions and mark your calendar! 
A special thank you to our sponsor Banana Bag Oral Solutions for supporting this speaker series and for the many years of partnership and support for the POTS community.  We are deeply appreciative.
****Special discount for the month of October - 20% off on 5 pack and 15 packs of Banana Bag.  Use the discount code DYS2021*****
Banana Bag Oral Solution is an oral solution formulated to exceed the standards of the World Health Organization for maximum absorption of water decreasing the need for intravenous therapy. Combining high dose water soluble, full spectrum, B-complex Vitamins (including L-methylfolate & methylcobalamin) with Vitamin C. The Banana Bag Oral Solution helps replenish vital nutrients lost to chronic illnesses, such as POTS. All of these benefits packed into a convenient packet containing no artificial sweeteners, preservatives, dyes or flavors, non-GMO, Gluten Free and Vegan!  Learn more about their products at their website - www.bananabagdrink.com
Please consider supporting the companies that support the POTS community. - Thank you!
Ways you can help the Dysautonomia community during Awareness month.
Interested in seeing more educational series like this one?  Help with a donation to DINET.  Your generous donations go towards providing our web services, maintaining our patient forum, providing printed materials, producing original videos, newsletters and multiple special projects to benefit the dysautonomia community and to help educate medical communities about dysautonomia.   There is no amount too small to be helpful.   You can also choose DINET - Dysautonomia Information Network as your designated charity on smile.amazon.com  Every purchase you make includes a donation to our organization and it doesn't cost you any additional money.  There are many other ways to donate.  Anything you do to support us is greatly appreciated.  https://www.dinet.org/get-involved/donate/ Print or email information from our website or request printed materials from us to give to medical professionals in your area, for support groups, for educators - coaches, school nurses and other people who interact with your teenage child and to give to family and friends to help them better understand your struggle. Join or start a local support group or begin a private support group  online. Participate in or begin a fundraiser for an organization or project that supports the dysautonomia community.   Whatever you choose to do, please reach out and spread the word.  

NOTE from DINET:  The following articles and information were shared with us during the early months of the pandemic.  Although the information is still very useful and the links provided a great resource, be aware that some of the information and guidelines may have changed since the articles were written.  Please visit the CDC website for the most recent recommendations concerning masks, vaccines and safety guidelines.
COVID-19 Research: study conducted by Dr. Blitshteyn for Neurologists treating a variety of dysautonomia disorders.  Also, patient research conducted the Rare Disease Network for people living  with rare diseases, whether you have had any exposure to COVID or not.  Visit our Recruitment Studies page for info on both studies.
Statement from Dr. Peter Rowe, Director of Children's Center CFS Clinic, John Hopkins Univ. School of Medicine on COVID-19 and CFS and OI
Dysautonomia and Coronavirus - an article by Dr. Blitshteyn, one of DINET's medical advisers. 
COVID-19 Part 2 - Article by Dr. Blitshteyn, Director and Founder of the Dysautonomia Clinic.  This article tells you what to do now.
From DINET:  We live with chronic illness - tips for COVID-19 isolation  then join the forum to weigh in with your tips - POTS is like cabin fever
Important information you need to know about face masks
From the Global Genes and the Rare Disease Network
Government Updates
World Health Organization: Rolling Updates on COVID-19 World Health Organization: COVID-19 Online Courses Centers for Disease Control & Prevention: Guidelines for people at High Risk Centers for Medicare and Medicaid Services: Current Emergencies Centers for Medicare and Medicaid Services: Coronavirus (COVID-19) Partner Toolkit Cambridge Rare Disease: Current UK NHS & Government Information & Guidance City of Little Rock: Experiencing symptoms related to COVID-19? City of Little Rock: ¿Tiene síntomas relacionados con COVID-19? (Spanish) Food & Drug Administration:COVID-19 What’s New and Fast Facts National Institutes of Health: COVID-19 Updates World Health Organization: Coronavirus Information Centers for Disease Control & Prevention: Coronavirus Information Center U.S. Government: State Health Department Directory Coronavirus (COVID-19) Education & Information
Día de la Mujer Latina: Dispelling the Myths and Rumors of the New Coronavirus Disease (Webinar) Día de la Mujer Latina: Disipando los Mitos y Rumores del Nuevo Coronavirus (Webinario) GRIN2B Foundation: Flip Book Social Story SCN2A Australia: Podcast on COVID and Epilepsy Coronavirus Support Network: FAQ (English) Coronavirus Support Network: FAQ (Spanish) Coronavirus Support Network: FAQ (Portuguese) National Health Council: COVID-9 Preparedness for people with chronic disease (Webinar) Association of Community Cancer Centers: COVID-19 Resource Center American Society of Clinical Oncology: Coronavirus Resources American Academy of Neurology: COVID-19 Neurology Resource American Thoracic Society: Public Health Information Sheet American Thoracic Society: COVID-19 FAQ Financial Assistance 
Laughing at My Nightmare: COVID-19 Resource Relief Arkansas Community Foundation: Arkansas COVID Relief Fund Virtual Networking
Ehlers-Danios Society: Virtual Chat Rooms Twitter QA: #spooniechat Our Odyssey: Online Meetups The Mighty: Come Hang with the Mighty Events Support Services
Robert Wood Johnson Foundation Culture of Health Leaders: Coronavirus Support Network Global Healthy Living Foundation: COVID-19 Support Program for Chronic Disease Patients and Their Families Cancer Support Community: What Cancer Patients, Survivors, and Caregivers Need to Know About the Coronavirus Mental Health
Centers for Disease Control & Prevention: Managing Stress and Anxiety During COVID-19 Happy: Online Mental Health Support Talking to Kids
Kids Health, Nemours: How to Talk to Your Kids About COVID-9 KinderCare: Talking to Children About Coronavirus At Home Teaching Resources
District Administration: Free K-12 Resources We Are Teachers: 130+ Amazing Online Learning Resources Diagnosis, Treatments & Vaccines
Milken Institute, FasterCures: COVID-19 Treatment and Vaccine U.S. Food & Drug Administration: Clinical Trial Guidance Mindray: COVID-19 Clinical Diagnostics Webinar Episode 1 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 2 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 3 Mindray: COVID-19 Experts Dialogues Coverage & Benefits
Centers for Medicare & Medicaid Services: Coverage & Benefits Related to COVID-19 Medicaid and CHP Foundation Resources
Centers for Disease Control & Prevention: Communication Resources Patient Advocate Foundation: COVID-19 Operational Response Plan Nielsen Training & Consulting, LLC: COVID-19 Resources for Nonprofit Leaders Exercise
Orangetheory:  Orangetheory At Home Gold’s Gym: Stronger Anywhere Peloton: Free App Planet Fitness: Home Work-Ins Crunch: Crunch Live 305 Fitness: Group Classes Corepower Yoga: Keep Up Your Practice American Heart Association: Choose Your Own Workout Entertainment
Two Disabled Dudes: Podcast Global Genes: RARECast (Podcast) Rare in Common: Podcast Instagram Live: John Legend Instagram Live: Luke Combs Instagram Live: Coldplay, Chris Martin Instagram Live: Gentle Hours with John Mayer Global Genes: RARE Daily

DINET is excited to announce partnerships with three companies - Banana Bag Solutions, The Mighty and All of Us research.  All three companies are dedicated to education and patient support for people living with dysautonomia and chronic illness.  
Banana Bag Oral Solutions produces a solution that delivers essential electrolytes and vitamins in a convenient powder blend that is dissolved in water.  Banana Bag recently was a part of a two day conference at Choc Hospital in California called Connecting the Dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder. This is just one of the ways Banana Bag is working to make an impact on the Dysautonomia community. Words from Brian Derry, the owner of Banana Bag Solutions:

All of Us Research Program - a part of the National Institute of Health   The All of Us Research Program is designed to create a diverse database of research and information to inform thousands of studies related to thousands of diseases and disorders and conditions affecting all people.  This type of program gives researchers the opportunity to look at how treatments affect people from all different types of backgrounds and health conditions.  It brings research around to the individual instead of the masses.  The NIH calls this approach Precision Medicine because it focuses the researcher, the scientist, and the healthcare provider on the individual, precisely.  For rare disorders like dysautonomia, it offers physicians a chance to apply data that is much more specific to their patient's needs rather than a general consensus.  https://allofus.nih.gov/about/all-us-research-program-overview
The Mighty is an online community for people living with chronic illness. But rather than focus on the medical aspects of disability and illness, The Mighty strives to fend off the isolation that comes with illness by forming a safe community for people to share their stories. From their site:  “real stories by real people facing real challenges”   The Mighty has created a safe platform for people living with chronic illness and disability to connect, share their stories and to raise support for the causes they believe in.
DINET is just one of over 200 nonprofit allies that The Mighty has partnered with to help deliver their excellent resources to the communities they serve.  From the words of Mike Porath, Founder of The Mighty about their overall goals:
In the coming months, DINET will be working hand in hand with all of their sponsors to extend awareness and education throughout the medical community and to help bring POTS & dysautonomia patients the resources & support needed to live life with chronic illness.
To learn more about our sponsors -
Banana Bag Oral Solutions - Exclusive coupon for DINET members - save on an electrolyte mix.  Go to www.bananabagdrink.com and enter the Promo Code DINET25 for a special savings of 25% off.  Throughout October, BananaBag will donate all profits from sales using this code to DINET in honor of Dysautonomia Awareness and DINET's work.
The Mighty - Visit The Mighty’s home page at https://themighty.com   For stories about dysautonomia - https://themighty.com/?s=dysautonomia   For stories about POTS - https://themighty.com/?s=POTS
All of Us - NIH Research Program - Visit the All of Us site to learn more about this innovative research effort. https://allofus.nih.gov/about/all-us-research-program-overview
Banana Bag Oral Solutions photos from the Choc Hospital, CA  "Connecting the dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder"



What Causes POTS?

By edriscoll, in POTS,

POTS symptoms can occur due to many different abnormalities in the body. Some disorders associated with POTS symptoms have been identified. Many of the causes of POTS still remain unknown. It can be difficult to distinguish between the causes and effects of this disorder, which further complicates matters.  
There are a multitude of disorders that can produce POTS-like symptoms. It is important that physicians attempt to find possible causes of a patient's orthostatic intolerance, as many secondary disorders are treatable. Some of the entities that may be contributing to one's orthostatic intolerance include: 
Adrenal disorders, such as Addison's disease,can produce symptoms that mimic POTS. 
Anemia patients sometimes exhibit the symptoms of POTS (Nand, Mohan, Khosla & Kumar, 1989). Some patients may have folic acid deficiency, which is contributing to their anemia and POTS symptoms. 
POTS patients may have a form of hidden anemia where the standard tests, such as hemoglobin and hematocrit, are relatively normal even though the patient has a severe anemia (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). A formal radioisotope dilution assessment of blood volumes was required to discover the red blood cell volume deficit documented in a 2005 study of POTS patients (Raj, et. al, 2005). The authors of this study state that it is possible a deficit in erythropoietin production might play a pathophysiological role in POTS, although this is not yet clear.
Angiotensin II has been found to be increased in some people with postural orthostatic tachycardia syndrome. The results from one study imply impaired catabolism of Angiotensin II through the angiotensin-converting enzyme 2 pathway. Vasoconstriction in POTS may result from a reduction in Ang-(1-7) and an increase in angiotensin II (Stewart, Ocon, Clarke, Taneja & Medow, 2009).
The angiotensin II type I receptor gene may be responsible for some orthostatic disorders.The NIH has researched vascular responsiveness in subjects with polymorphisms of the angiotensin II type I receptor gene. Angiotensin II is a hormone that constricts blood vessels by attaching to a protein on the blood vessels. People can have a variety of forms of this protein. Researchers have looked for differences in the gene that makes this protein to determine if these genetic differences have any effect on blood pressure.
Autoimmune disorders,such as Guillain-Barre (NIH.gov) and lupus are suspected of causing POTS symptoms in some individuals. 
Researchers have discovered an antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000).  Some people with POTS have an antibody titer test that is positive to this antibody. Patients with orthostatic intolerance, anhidrosis, constipation, urinary dysfunction, sjogrens syndrome and pupillary dysfunction had higher antibody titers than subjects that did not (Gibbons & Freeman, 2009). Patients with the highest levels of these ganglionic-receptor-binding antibodies have the most severe autonomic dysfunction. Physicians have discovered that antibody levels lower as some patients improve, which suggests a cause and effect relationship. Patients interested in being tested for the ganglionic antibody should have their physician contact:
Mayo Clinic Laboratories
Cardiac atrophy has been pinpointed as the cause of orthostatic intolerance in astronauts. Research has shown that astronauts' hearts actually shrink and stiffen due to the reduced blood volume caused by microgravity (Mitka, 2002). Researchers want to find out if the cardiac atrophy is entirely reversible, and if the loss of mass can reach a point where it leads to catastrophic consequences (Healthline Scripts: Cardiac Atrophy, 1998). This finding may have implications for people who develop orthostatic intolerance due to being bedridden. Whether or not the finding can be applied to a percentage of patients who develop orthostatic intolerance for other reasons has yet to be proven. 
Cardiac disease can cause POTS symptoms. Most physicians are quick to rule cardiac disease out.
Cardiac electrophysiologic property abnormalities may be occurring in some POTS patients. Data from one study suggests abnormalities of atrioventricular conduction and ventricular repolarization in some patients with POTS (Singer, Shen, Opfer-Gehrking, McPhee, Hilz, & Low, 2003). The investigating physicians of this study concluded that these findings may reflect intrinsic cardiac electrophysiologic abnormalities or may be secondary due to abnormalities of cardiac autonomic innervation.
Another study suggested a primary sinus node abnormality could be present in a subset of POTS patients (Singer, Shen, Opfer-Gehrking, McPhee, Hilz & Low, 2002). Abnormal rate-dependent P-wave axis behavior has been observed in a small subset of POTS patients. This could be interpreted as a primary sinus node abnormality. However, several publications caution against ablating POTS patients.
A Mayo clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states "in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia" (Shen, 2002).
Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their "sinus tachycardia", they were left with profound orthostatic hypotension (Grubb & Karas, 1999).
Cervical stenosis is a condition in which the spinal canal is too narrow, causing compression of the spinal cord and nerve roots. It was once reported that POTS patients with cervical stenosis may benefit from craniovertebral decompression (Rosner, D'Amour & Rowe, 1999). A few patients have reported a decrease or resolution in POTS symptoms after undergoing surgery to correct this condition. Yet other patients have not had any decrease in POTS symptoms after undergoing surgery to correct cervical stenosis. Some physicians are convinced that cervical stenosis can cause POTS, others debate the relationship.
Chemical exposure may cause POTS symptoms in some individuals. Researchers at Johns Hopkins University have tested Gulf War vets to see if they have neurally mediated hypotension or POTS. The study aimed to find out if environmental factors such as pesticides, vaccinations or infections are associated with having POTS.
Chiari malformation is a condition in which the cerebellar tonsils protrude down into the spinal cord. This can restrict the flow of cerebral spinal fluid. The symptoms of Chiari are similar to those of POTS. A number of Chiari patients have reported being diagnosed with POTS. Some of these patients proclaim a decrease or resolution in POTS symptoms after undergoing surgical correction of their Chiari malformation. Other POTS patients with Chiari malformation have not experienced any benefits from corrective surgery. Some physicians are convinced that Chiari malformation is a cause of POTS, others doubt the relationship.
CSF leaks are characterized by a severe headache that becomes worse when upright.  This is a key factor in Spinal CSF leaks, but it is also a symptom in POTS patients and they are frequently confused. However, recent research has discovered that patients with CSF frequently have POTS as well, further making the diagnostic process difficult.  Since all patients with CSF have orthostatic intolerance related to POTS, there is a danger that further investigation may stop there, causing missed exploration into a CSF leak.  Read more 
Diabetes can produce the symptoms of POTS (Llamas, Garcia, Gaos, Jimenez, Villavicencio, Cueto & Arriaga, 1985). There are different types of diabetes, including diabetes insipidus, that are associated with POTS symptoms. Read more 
Ehlers-Danlos Syndrome (EDS), a connective tissue disorder, is found in some POTS patients. Physicians propose that these syndromes occur together due to abnormal connective tissue in dependent blood vessels in those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures (Rowe, Barron, Calkins, Maumenee, Tong & Geraghty, 1999).Simply put, this connective tissue abnormality allows excessive amount of blood to pool in these patients' lower limbs when they stand up.  
There are a variety of types of Ehlers-Danlos syndrome. Classical and Hypermobile EDS (hEDS) were originally reported in orthostatic intolerance patients (Rowe et al., 1999). Many POTS patients with EDS have hEDS (Grubb, 2002).
The classical form of Ehlers-Danlos syndrome (types I and II) is characterized by soft, hyperextensible skin; easy bruising; poor wound healing; thin, atrophic scars; hypermobile joints; varicose veins and prematurity of affected newborns (Wenstrup & Hoechstetter, 2001). Mutations in type V collagen are a major cause of the classical type of Ehlers-Danlos syndrome.
Clinical features associated with hEDS include soft skin and large and small joint hypermobility (Wenstrup & Hoechstetter, 2001). Skin may be stretchy but scarring tends to be normal. POTS patients with hEDS are often hypermoblie/hyperflexable, double jointed, pale, female and tend to have blond hair and blue eyes (Grubb, 2002). The genetic basis for hEDS is unknown.
A wide variety of medical complications may occur with the classical and hypermobile types of EDS. Mitral valve prolapse can occur in all types of EDS and delayed gastric emptying has been observed in hEDS (personal observations, Wenstrup & Hoechstetter, 2001). A significant number of individuals with both the classical form and the hypermobile form have dilation and/or rupture of the ascending aorta (Saliba E et al. 2015, Rozado J et al. 2017). Hiatal hernia has been widely reported in adults with EDS (Nelson, Mouchli Valentin, et al 2015) Read more. As previously stated, premature rupture of the membranes in pregnancy (primarily classical type) and poor wound healing (particularly with severe classical type) may occur. Other complications include a mild to moderate increase in peripartum bleeding, joint dislocations, chronic pain (most common in the hypermobile type), surgical complications and intraoperative problems (more common in the classical than hypermobile type), diverticulitis, problems associated with fragile skin (particularly with the classical type) and motor delay (Leganger, Soborg, Mortensen, et al 2016)Read more.
One study on patients with "joint hypermobility syndrome", a disorder similar if not identical to hEDS, showed that 78% had signs of dysautonomia, such as orthostatic hypotension, postural orthostatic tachycardia syndrome and uncategorized orthostatic intolerance (Gazit, Nahir, Grahame, & Jacob, 2003). These patients also had evidence of a-adrenergic and B-adrenergic hyperresponsiveness. The authors of this study note that patients with the joint hypermobility syndrome have apparently intact vagal control of heart rate with disturbed sympathetic function. They further state that "the sympathetic dysregulation associated with joint hypermobility syndrome may have several explanations, such as peripheral neuropathy, blood pooling in the lower limbs, impaired central sympathetic control, or deconditioning due to muscle disuse through pain or fear of pain".
Another study of one hundred and seventy women with joint hypermobility syndrome concluded that non-musculoskeletal symptoms are common in patients with joint hypermobility syndrome, and that individuals with these symptoms may express more fatigue, anxiety, migraine, flushing, night sweats, and poor sleep than their peers (Hakim & Grahame, 2004). Read more
A group of conditions related to joint hypermobility are hypermobility spectrum disorders (HSD).  HSD is diagnosed after all other conditions are rules out, such as EDS and hEDS. HSD can be equal in severity to hEDS and calls for similar care and management.  Read more about HSD
Read more about EDS through these links
Electrical injury has reportedly occurred prior to the development of POTS in a couple of cases (Kanjwal, Karabin, Kanjwal & Grubb, 2009).
Gastric bypass surgery may cause orthostatic intolerance in some individuals.
Lesions of the autonomic nervous system might be causing POTS in some individuals. Research shows that animals become dysautonomic by selectively lesioning postganglionic sympathetic neurons (Carson, Appalsamy, Diedrich, Davis & Robertson, 2001).
Liver disease may contribue to orthostatic intolerance. Compensated Cirrhosis is a condition in which the liver is damaged but is able to compensate for it. This condition coincides with hypovolemia and vasodilation. POTS, as well as peripheral blood pooling and decreased arterial tone, has been found in some patients (Hartleb, Rudzki, Karpel, Becker, Waluga, Boldys, Nowak & Nowak, 1979). 
Mast-cell activation disorders may play a role in the development of POTS in some individuals. Some patients with orthostatic intolerance suffer from episodes of flushing, palpitations, shortness of breath, chest discomfort, headache, lightheadedness, hypotension or hypertension and occasionally syncope (Jacob & Biaggioni, 1999). Exercise may trigger an attack (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Patients may complain of increased fatigue, sleepiness, increased urination and/or diarrhea after an attack (Jacob & Biaggioni, 1999). Symptoms of orthostatic intolerance often worsen after an episode. An increase in urinary methylhistamine, a marker of mast-cell activation, can be found in these patients.
Mast-cell activation results in the release of the vasodilator histamine, which may contribute to symptoms of POTS. Other mast cell mediators, such as plasma prostaglandin 2, may contribute to symptoms as well. Urinary histamine is often measured in the evaluation of flushing, but it is less specific than methylhistamine and not useful in the diagnosis of mast-cell activation (Shibao et al., 2005). Patients should be instructed to collect urine for a 4-hour period immediately after a severe spontaneous flushing episode. Urinary methylhistamine is usually normal between episodes in patients with mast-cell activation disorders, although the patients may experience chronic fatigue and orthostatic intolerance between episodes, which can lead to a disabling condition (Shibao et al., 2005).
Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders (Shibao et al., 2005). Beta blockers may trigger mast-cell activation.
Read more about MCAS
Mitochondrial disease is sometimes found in patients who present with autonomic dysfunction. Read more
Neuropathy may be involved in the development of POTS in some individuals. One study showed that POTS may be, in part, a manifestation of autonomic cardiac neuropathy (Haensch, Lerch, Schlemmer, Jigalin & Isenmann, 2009). Sympathetic denervation of the legs might be the cause of POTS in some patients as well. 
Nitric Oxide deficit may play a role in POTS symptoms. Nitric Oxide (NO) is a very simple molecule whose job it is to control blood vessel size with changes in blood flow, changes in blood vessels during inflammation and blood vessel leakiness (Stewart, 2005). Some POTS patients have a deficit of nitric oxide (Stewart, Taneja, Glover & Medow, 2008.). This deficit may relate to the nitric oxide synthase molecule called nNOS, but it also has a compelling relationship with the hormone angiotensin-II.Together angiotensin-II and  NO may help to regulate sympathetic nerve activity in the brain and also in certain peripheral nerves (such as the splanchnic circulation). Moreover, angiotensin-II can result in increased oxidative stress which can itself reduce NO (Dr. Julian Stewart, personal communication, November 28, 2007).
Researchers have found that NO levels can be increased by blocking the most important receptor for angiotensin-II. This may lead to treatments in the future in select groups of POTS patients.
Norepinephrine transporter deficiency is thought to cause POTS in some patients. These patients have an abnormality in the clearance of norepinephrine from the synaptic cleft. The body normally recycles norepinephrine. The protein that recycles norepinephrine doesn't work well in people with the norepinephrine transporter deficiency (Grubb, 2002). Excessive amounts of norepinephrine is spilled over. These people soon become depleted of norepinephrine if the neuron is continually stimulated (Grubb, 2002). They go from having excessive amounts of norepinephrine to having no norepinephrine, at which point they crash. Read More
Other researchers have reportedly discovered hypermethylation of the norepinephrine transporter (NET) gene promoter in POTS patients (Esler, Alvarenga, Pier, Richards, El-Osta, Barton, Haikerwal, Kaye, Schlaich, Guo, Jennings, Socratous & Lambert, 2006) In these patients, the gene for the protein that transports norepinephrine (NET) is turned off because its promoter is turned off. Further studies are being conducted to determine whether hypermethylation of the NET gene promoter is a mechanism or cause of POTS.
The nutcracker phenomenon has reportedly produced POTS symptoms in some individuals. Nutcracker phenomenon (NC) is the congestion of the left renal vein due to its compression by the aorta and the superior mesenteric artery (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The main and common findings of one study on pediatric NC patients were chronic fatigue associated with orthostatic hypotension and/or postural tachycardia (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The authors of this study point out that "the originally reported symptom of NC is renal bleeding. However, reported 'renal bleeding' patients, including ours, have no complaints of chronic fatigue and our 'chronic fatigue' (NC) patients have no renal bleeding". Some of these patients did report fibromyalgia type pain. Some patients had proteinuria, others had no urinary abnormalities. 
The authors of this study explain the various ways in which NC might affect autonomic function: First, severe congestion in the kidney may cause the expansion of the renal venous bed, which would affect the renin-angiotensin system. Secondly, severe congestion in the adrenal medulla, which is innervated by sympathetic nerves, may disturb a complex set of central neural connections controlling the sympathoadrenal system. On the other hand, overproduction or night retention of catecholamines might be responsible for the various symptoms of pediatric chronic fatigue syndrome (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The nutcracker phenomenon occurs in adults as well as children. Transluminal balloon angioplasty has successfully been used to treat compression of the left renal vein between the aorta and superior mesenteric artery (Takahashi, Sano & Matsuo, 2000). 
The methods used to diagnose nutcracker phenomenon include Doppler US, MRI and three-dimensional helical computed tomography. Dr. Takahashi (personal communication, September 8, 2002) explains the procedures for testing as follows: Conventional ultrasound requires patients to be examined for left renal vein obstruction in 4 positions: supine, semisitting, upright and prone. Nonvisualization of the left renal vein lumen or absence of the left renal vein wall between the aorta and superior mesenteric artery is regarded as signifying left renal vein obstruction. Doppler color flow imaging can be used to locate a blue-colored blood stream flowing to the dorsal direction. This is a collateral vein flowing from the left renal vein into the paravertebral vein. With MRI, oblique coronal images along the left renal vein, and also axial images, are recommended to visualize the collateral veins around the left renal vein. 
The relationship between headaches and nutcracker syndrome is explored in a recent study (Stuberrud, Cheema, et al 2020) Read more
Nutritional deficiencies can lead to autonomic dysfunction. The B vitamins 1, 3, 6, and 12 have been reportedly linked to dysautonomia symptoms (Autonomic Dysfunction, 2000). Folic acid deficiency (B9) can also cause POTS symptoms.
Other neurological conditions, such as multiple sclerosis, are sometimes associated with autonomic dysfunction.
Parasites can transmit diseases, such as Chagas, that can cause POTS symptoms. Some patients report developing POTS after having Lyme disease. 
Porphyrias have been associated with POTS symptoms (Stewart & Hensley, 1981). Porphyrias are rare, mainly genetic disorders that affect the body's ability to make hemoglobin. They are caused by deficiencies in enzymes involved in the synthesis of heme. Porphyria patients are often overly sensitive to sunlight. 
It is important for physicians to rule out porphyrias before prescribing medication to POTS patients. Some medications that are considered unsafe for porphyria patients are used to treat dysautonomia. Read more
Syringomyelia is a condition in which a cyst grows within the spinal cord. POTS can occur in patients with this condition. Syringomyelia is similar to POTS in that it usually occurs between the ages of 25 and 40, it can have a sudden onset, some patients have Chiari malformation and some patients may experience long periods of stability. The symptoms of syringomyelia can worsen with straining or any activity that causes cerebrospinal fluid to fluctuate. Many POTS patients also report a worsening of symptoms upon straining. Partial sympathetic denervation of the legs in those with syringomyelia might explain the occasional occurrence of postural tachycardia syndrome (NINDS Syringomyelia Information Page, 2020). Read more
Tumors can lead to autonomic dysfunction. Tumors, such as pheochromocytoma and neuroblastoma, can secrete catecholamines that affect the autonomic system. Pelvic ganglioneuroma is another type of tumor that has also been associated with autonomic dysfunction (Gentile, Rainero, Luda & Pinessi, 2001). Tumors can cause compression, which directly affects the autonomic nervous system. Tumors are also capable of having a paraneoplastic effect on the ANS by producing autoantibodies against acetylcholine receptors in the autonomic ganglia (Mayo Clinic Fact Sheet, 2020). 
Thyroid disease can cause symptoms that are similar to those of POTS.
Viruses are thought to be the provoking factor in approximately 50% of POTS patients (Low & Schondorf, 1997, p. 279). There are reports of dysautonomia occurring after the Epstein-Barr virus (Itoh, Oishi, Ohnishi, Murai & Imawatari, 1993). Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis (Grubb, 2000). Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period (Grubb, Kanjwal & Kosinski, 2006).
These are but a few of the possible causes of POTS symptoms. More information on causes of autonomic dysfunction can be located at the National Dysautonomia Research Foundation.
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(2001). National Institute of    Neurological Disorders and Stroke.    http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm     24. Raj, S. R., Biaggioni, I., Yamhure, P. C., Black, B. K., Paranjape, S. Y.,   Byrne, D. W., & Robertson, D. (2005). Renin-aldosterone paradox   and perturbed blood volume regulation underlying postural tachycardia   syndrome. Circulation. 111(13), 1574-1582.     25. Rosner, M. J., D'Amour, P., & Rowe, P. C. (1999, September). Neurally    Mediated  Hypotension: its Surgical Evaluation, Management and Early    Outcome as Part of the Fibromyalgia—Chronic Fatigue Syndrome.    National Fibromyalgia Research Association's Subgroups in    Fibromyalgia Symposium. Portland, Oregon.    http://www.nfra.net/SubRosner2.htm     26. Rowe, P. C., Barron, D. F., Calkins, H., Maumenee, I. H., Tong, P. Y., &    Geraghty, M. T. (1999). Orthostatic intolerance and chronic fatigue    syndrome associated with Ehlers-Danlos syndrome. Journal of Pediatrics,   135, 494-499. PMID: 10518084 [PubMed - indexed for MEDLINE]     27. Shen, W. K. (2002). Modification and ablation for inappropriate sinus   tachycardia: current status. Cardiac Electrophysiology Review.   6(4), 349-355. PubMed     28. Shen, W. K., Low, P.A., Jahangir, A., Munger, T. M., Friedman, P. A.,   Osborn, M. J., Stanton, M. S., Packer, D. L., Rea, R. F., Hammill, S. C.   (2001).  Is sinus node modification appropriate for inappropriate sinus   tachycardia with features of postural orthostatic tachycardia syndrome?   Pacing & Clinical Electrophysiology, 24(2), 217-230. PubMed     29. Singer, W., Shen, W. K., Opfer-Gehrking, T.L., McPhee, B. R., Hilz, M. J.,    & Low, P.A. (2002). Evidence of an intrinsic sinus node abnormality in     patients with postural tachycardia syndrome. Mayo Clinic Proceedings,   77, 246-252.           30. Singer, W., Shen, W. K., Opfer-Gehrking, T.L., McPhee, B. R., Hilz, M. J.,    & Low, P.A. (2003). Heart rate-dependent electrocardiogram abnormalities   in patients with postural tachycardia syndrome. Autononomic Neuroscience,   31, 103(1-2), 106-113. PMID: 12531404 [PubMed - in process]     31. Singh, N. K., Jaiswal, A. K., Misra, S., & Srivastava, P. K. (1987).    Assessment of autonomic function in Guillain-Barre syndrome and its   prognostic implications. Acta Neurologica Scandinavica, 75, 101-105.    PMID: 3577674 [PubMed -indexed for MEDLINE]     32. Steinmann, B., Royce, P. M., Superti-Furga, A. (1993). The Ehlers-Danlos   syndrome. In: P. M. Royce & B. Steinman (Eds), Connective tissue   and its heritable disorders (pp. 351-408).New York: Wiley-Liss, Inc.     33. Stewart, J. M. Local vasoconstriction in postural tachycardia   syndrome. Retrieved April 19, 2005, from Center for Pediatric     Hypotension.             34. Stewart, J. M., Ocon, A. J., Clarke, D., Taneja, I., Medow, M. S. (2009).   Defects in cutaneous angiotensin-converting enzyme 2 and angiotensin-(1-7)   production in postural tachycardia syndrome. Hypertension.   53(5), 767-774. PubMed   35. Stewart, J. M., Taneja, I., Glover, J., & Medow, M. S. (2008).   Angiotensin II type 1 receptor blockade corrects cutaneous nitric   oxide deficit in postural tachycardia syndrome. American Journal of   Physiology. Heart and Circulatory Physiology. 294(1), H466-73. PubMed     36. Stewart, P. M., & Hensley, W. J. (1981). An acute attack of variegate    porphyria complicated by severe autonomic neuropathy. Australian    and New Zealand Journal of Medicine, 11(1), 82-83.   PMID: 6941785 [PubMed - indexed for MEDLINE]     37. Takahashi, Y., Ohta, S., Sano, A., Kuroda, Y., Kaji, Y., Matusuki, M., &    Matsuo, M. (2000). Does severe nutcracker phenomenon cause pediatric   chronic fatigue? Clinical Nephrology, 53, 174-181.    PMID: 10749295 [PubMed - indexed for MEDLINE]     38. Takahashi, Y., Sano, A., Matsuo, M. (2000). An effective "transluminal    balloon  angioplasty" therapy for pediatric chronic fatigue syndrome with    nutcracker phenomenon. Clinical Nephrology, 53, 77-78.   PMID: 10661488 [PubMed - indexed for MEDLINE]     39. Wenstrup, R. J., & Hoechstetter, L. B. (2001). The Ehlers-Danlos syndromes.   In S. B. Cassidy & J. E. Allanson (Eds.) , Management of genetic   syndromes (pp. 131-149). New York: Wiley-Liss, Inc.     40. Vernino, S., Low, P. A., Fealey, R. D., Stewart, J. D., Farrugia, G., &     Lennon, V. A. (2000). Autoantibodies to Ganglionic Acetylcholine 
  Receptors in Autoimmune Autonomic Neuropathies. The New England    Journal of Medicine, 343, 847-855.   


POTS Myths

By edriscoll, in POTS,

As with many disorders that have received little research, there are numerous false assumptions made about POTS. Many of these assumptions stem from the lack of information available about this disorder. This page was created in hopes of clarifying some of these false assumptions. Suggestions for this page can be sent to: Dysautonomia Information Network
Myth: POTS symptoms only occur while standing.
Many patients report symptoms occurring while sitting or lying down. Standing does exacerbate symptoms.
Myth: Everyone with POTS faints.
Many people with POTS have never fainted.
Myth: POTS symptoms are present at all times.
The symptoms of POTS can vary greatly from day to day and hour to hour.  
Myth: Most doctors will be competent in treating POTS patients.
Some doctors have never even heard of POTS. It is essential to one's well being to seek out a specialist.
Myth: People get POTS because they are lazy and deconditioned.
People can get POTS symptoms due to prolonged bed rest, however the symptoms should diminish as the person becomes more active. The origins of chronic orthostatic intolerance are certainly distinct from laziness or deconditioning.
To read about the causes of POTS, please see our article "What causes POTS?"  https://www.dinet.org/info/pots/what-causes-pots-r98/

Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. 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.  
There are many different types of dysautonomia and many symptoms that can occur at once or at different times and at different severities, making dysautonomia very difficult to diagnose.  It is also the reason that there is no one treatment plan advised for patients.  Treatment is sculpted to the patient.  However, there are symptoms that are common between patients regardless of the type of dysautonomia.
difficulty sitting or standing upright dizziness, vertigo, and syncope (fainting) or pre-syncope fast, slow, or irregular heartbeat chest pain low blood pressure gastrointestinal disturbances nausea visual disturbances weakness shortness of breath mood swings anxiety fatigue and intolerance to exercise migraines sleep pattern issues frequent urination Temperature Regulation Problems and heat intolerance concentration and memory problems (brain fog) poor appetite sensitivity to bright lights and loud noise (irregular pupil dilation)  Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorders that result.  It is common for diagnosis to take a longer than many other disorders, however with the proper diagnostic testing the type of dysautonomia can be identified and effective treatment prescribed. 
DINET provides information , personal stories and articles written by patients about the types of dysautonomia, treatment and living with these chronic illnesses.   This site focuses on the following types of dysautonomia; please note, these are not the only types or subtypes of the disorders described.  Please explore the different categories under Information Resources to find out more about dysautonomia disorders. 
Postural Orthostatic Tachycardia Syndrome
Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.
The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.
Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, explore the POTS category in our Information Resource section.
Neurocardiogenic Syncope (NCS)
Sometimes referred to as neurally mediated syncope or vasovagal syncope, this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes.
Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, explore the  NCS category in the Information Resources section. 
Pure Autonomic Failure (PAF)
A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat.
Our web site provides a page full of links to pure autonomic failure resources on the Internet.
Multiple System Atrophy/Shy-Drager Syndrome (MSA)
A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). 
Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy).
MSA is a very serious form of dysautonomia that can be fatal.  
Our website provides a page full of links to multiple system atrophy resources on the Internet.  
1. Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.
2. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm
3. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press.
4. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal.  77, (908), 379-382.
5. Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

By Susanne Rimm
Okay – let's be real. We are tired, dizzy, sick to our stomachs; we can’t stand up but are not supposed to lie down all day, can’t think straight, can’t talk long, can’t stop peeing. We either sleep too much or not at all, our stomachs are too lazy or too active, our gut is irritable and  so is our mood.  Heat is our enemy but we seek warmth when the trembling chills get ahold of us.  Our HR and BP are happily occupied on a rollercoaster WITHOUT supervision … and I haven’t even started on what a BAD day is like! 
Our doctors are either frustrated or ignorant,  labeling  us as either mentally ill or hypochondriacs. People around us think we are victims of our vivid imaginations or want for attention ( as if !!! ) and I won’t even mention the hateful stares I get when I dare to use the motorized wheelchair in Walmart when I am so young and perceived to be healthy.
So we take our pills, eat our salt, drink fluids and squeeze ourselves willingly into our hose ( no. I’m not talking about skinny jeans .. ) - just to make it through another day. But what if there was something else, some things that we could try on OUR time, at OUR tolerance, at OUR convenience … what if there were more things to try that might help us manage our symptoms? 
As I researched information for this article I found a wealth of alternative methods and treatment options that may help ease some of our symptoms. Of course I am not claiming there is a cure, but there are things we can take and do to improve our quality of life.  Before we take a look at our options, it is important to remember to consult your physician before making any changes to your treatment or health care plan. Now let’s get started. 
What we eat is equally important to how we eat it. When we eat a meal the parasympathetic branch of the autonomic nervous system activates and increases circulation in the gut, causing us to feel tired and sleepy after a big meal. In dysautonomia patients this can backfire and cause the sympathetic branch to try to compensate and hence wreak havoc on our symptoms. That is why it is important to eat not only healthy choices but also to avoid big meals. 
It is generally recommended that 6 or more snacks a day are gentler on us than 3 big meals. Despite our need to drink a lot of fluids we should avoid drinking DURING a meal and save our drink for afterwards.  Eating consciously, slowly and chewing well helps with foods being more easily digested. Chewing helps to break down food and predigest it with enzymes in saliva. Drinking will dilute these enzymes and therefore require more effort in digestion. 
Generally speaking carbs are more difficult to digest than other foods. This especially includes sugars, pasta, breads etc. Anything made from white flour can be especially hard to digest and it  is also void of beneficial nutrients and fiber. Small helpings of nutrient-rich grains such as whole wheat flour, oats, certain rice types, barley, quinoa etc are filled with healthy nutrients and easier to digest. Nuts and healthy oils such as Avocado, Olive Oil, Nut butters etc are recommended. High amounts of protein ( as you can find in lean meats, eggs, beans, nuts etc )  are generally preferred. 
In addition to what we should eat there are also recommendations as to what we should avoid: alcohol, caffeine and sugars are some examples. Of course each person may need to avoid other foods that could be causing allergies or reactions, like dairy, gluten, high acid foods etc.  In people with illness affecting their kidney function, high protein diets need to be avoided also.  
Always consult with your medical team before making major changes to your diet.  If you are concerned about reactions or sensitivities you may have noticed with foods, consider keeping a food diary for a few weeks to help you track any changes you may experience.  
More on POTS  and diet can be found here
Supplements and Herbal Preparations
There are no herbs or supplements approved by the FDA, and, as with medications, what is helpful for one may do harm to another. The effectiveness of herbs has not been proven and all herbs or supplements need to be approved by a physician since they can impact the effectiveness of medications  The following listing of herbs is not to be confused with treatment suggestions, it is simply a list of substances that can have an effect on the ANS and may actually be harmful if taken by POTS patients.
Valerian Root
This herb has a generally calming effect on the nervous system and may or may not help with insomnia, attention deficit, anxiety, and CFS. Prior to modern medicine it was used to treat a condition called “Hysteria”. 
Butcher’s Broom
This herb got its strange name due to its tough branches, which butchers used to clean off their contaminated surfaces. It is said to have anti-inflammatory effects and is thought to constrict veins, therefore aiding in returning blood to the heart. This is the reason it was used for both fainting and the treatment of hemorrhoids. 
Hawthorne Berry
This small fruit has been used for thousands of years in traditional chinese medicine and is native to North America. It contains antioxidants that are said to be anti-inflammatory. It is a vasodilator and therefore can lower blood pressure, and its mildly sedative effects may reduce anxiety. Since Hawthorne contains fiber it is also used to aid in digestive problems.  
Vitamins and Minerals
Dysautonomia patients are often deficient in certain vitamins. Vitamin B 12 has an effect on the brain and nerves, therefore a lack of it can cause a wide range of symptoms.  Numbness, tingling, memory loss, cognitive issues, muscle weakness, dizziness, palpitations,tachycardia, nausea, and diarrhea are just some of the symptoms this deficiency can cause. B 12 supplements come in different forms such as oral, sublingual, subcutaneous and intramuscular preparations. Levels considered to be normal are 200-900 ng/ml. 
Vitamin D  is another vitamin that appears low in some dysautonomia patients. It is a substance required by the body for calcium absorption which is responsible for bone growth, cell growth and immune system functioning. 90% of the Vitamin D needed by the body is made by sun exposure, so it is difficult to get enough Vitamin D in our diet alone. Vitamin D deficiency can cause fatigue, hair loss, depression, frequent infections, memory loss and more. A normal level of Vitamin D is 20-50 ng/ml. 
Another substance that can be low in dysautonomia patients is Ferritin.  Ferritin is a protein that helps the body store iron, therefore a lack of it can indicate anemia. Symptoms of low Ferritin can include rapid heartbeat, lethargy and weakness, hair loss, bruising and, oddly, the desire to eat non-food items (Pica). Normal levels of ferritin are 12-300ng/ml for males and 12-150 ng/ml for females. 
Physical Therapy
Author’s note: the following information was collected in an interview with Ben Rittenhouse, DPT
1a) What are exercises or methods you recommend to prevent or combat deconditioning for someone who is exercise intolerant to upright exercises? 
1b) What exercises will strengthen leg muscles and venous return? 
Deconditioning is a definite concern with patients that have POTS. In general, exercises that engage the larger muscle groups of the lower body will enhance venous return.  Even simple exercises such as ankle pumps may be a starting point for some patients with a low tolerance. The goal is to work up to activities such as recumbent biking and eventually a walking or swimming program. Exercise is one the best ways to promote venous return and begin to allow the body to tolerate more upright postures. Peripheral veins have one-way valves that direct blood flow back to the heart. As muscles are engaged, they act as a pump to help that process. A progressive exercise program is one of the best ways to combat deconditioning.
2a) CFS (Chronic Fatigue Syndrome) can be a companion disorder to POTS - do you know of any methods used in your occupation to improve wakefulness and energy?
2b) POTS affects both HR and BP - are you aware of any interventions to improve circulation to the brain 
Exercise increases blood flow to the brain as well as the muscles. This helps enhance oxygenation to the brain and can improve alertness. Research is showing us that exercise can improve mental clarity, creativity, memory, and mental health. Several years ago, the American College of Sports Medicine coined the phrase “Exercise is Medicine.” This is very true when addressing symptoms of POTS. Exercise can be one of the best “medicines.”
3) Elevated norepinephrine levels cause a constant state of fight-or-flight, which causes a lot of tension in the muscles and often causes coat hanger syndrome in POTS patients. What treatments can patients do at home to relax the muscles without using medications? Particularly treatments that are not dependent on using cold or hot techniques since patients are frequently cold and heat intolerant.    
People may find that they can have relief with techniques such as deep breathing exercises or meditation to help address muscle tension and stress associated with POTS. Overall, resting in a recliner is better than lying down flat as the goal is to slowly and steadily increase the tolerance to upright positions. However, cervical pain may need to be examined by a healthcare professional to rule out other musculoskeletal contributors.
 4) What can you recommend for patients who want to exercise but have orthostatic hypotension?  
Although this can pose a challenge, I would encourage patients to start slow, find their baseline and work up from there. It is important to have a good home blood pressure cuff to be able to monitor the BP and also pay extra attention to symptoms to maintain safety. Often patients are hesitant to exercise with orthostatic hypotension but exercise is usually one of the best treatments.
 5) Does trigger point release cause relaxation of the muscles or does it tighten them?  
Often trigger point release can be very effective in helping muscles relax. However, people have different levels of tolerance to techniques such as TPR. Due to the “fight or flight” nature that you mentioned, I find this is sometimes difficult for patients to tolerate.  Instruments such as a Theracane can allow patients to be in control which can help reduce adverse effects in POTS. In some cases, dry needling can also provide relief from trigger points as well. 
Overall, exercise and physical therapy can be great treatments to address POTS. I would recommend that anyone who struggles with positional tachycardia be assisted in beginning a program by a physical therapist. A progressive exercise program can be very helpful and effective in addressing positional difficulties and often give someone handles in managing their symptoms.
Chiropractic care
Author’s note: The information in this chapter had been provided by Sherri “Dr Sherri” Collett, practicing family chiropractor.
Dr. Sherri Collett:  Chiropractic Care addresses the nervous system. Gentle Chiropractic care can affect the ANS, which is primarily affected in people with POTS. Chiropractic helps the body to regulate itself – when it is free of misalignments that may be interfering with the nervous transmissions to the rest of the body. It is a natural way of allowing the body to heal itself, from within. 
Massage is also a gentle way of stimulating the nervous system through the musculoskeletal system. I highly recommend massage therapy for people that suffer from POTS.
Make sure your Chiropractor  and the Massage Therapist are familiar with the symptoms of POTS since Chiropractic and Massage have been known to affect Blood pressure after treatment. 
Author’s note: The following answers were provided by Rita, a POTS sufferer, YOGA fan and valued DINET forum member.
As someone who has POTS and practices Yoga – how would you describe the positive effects of this type of exercise? 
In my view it has all the benefits of other forms of exercise, but it is extremely POTS friendly for a number of reasons: 
It gets your blood circulating and increases your HR, but not at the same level as cardio. I don’t get any “ Exercise hangover “ headaches and tachycardia as I did with cardio. 
It builds strength
In certain types of Yoga there is a focus on breathing deeply – which is good for POTS. 
Many exercises can be done in a seated or lying position. Which triggers fewer symptoms. 
There is very little equipment involved.
You don’t need to leave your home ( although you  learn faster and more intensely in a studio ) and you can set your own timing and duration. 
The classes themselves – if you do the right type of yoga – are very calming and relaxing, with soft music etc, which makes them quite POTS friendly
Can it help people with brain fog to focus better? 
Similar to cardio, if done regularly I feel more alert and better overall. Yoga is shown to improve concentration because you have to focus on learning and holding poses. 
Does it help even if just done for a few minutes by people who cannot exercise long? 
Yes! I started out very slowly doing the stretch video below. But in order to improve I think you have to be able to push yourself to do more over time. 
Are there any particular positions that help with leg strength and circulation?
Most of the positions help with circulation, and most – other than the warm-up and cool-down exercises – would help with muscle strength. You really use your arms, legs and core. 
Are there any books or websites you recommend? 
I accidentally discovered Yoga through a video called “AM/PM Stretch for Health”, which I randomly bought based on reviews on Amazon. I’d gone to a stretch class at the local gym and wanted to do more at home. The video showed a downward-dog pose and I realized the stretches were actually Yoga. Since I felt so much better from all of the stretches I wanted to try more. 
I learned Yoga by taking classes in a studio.  Finding the right classes with the best style of yoga ( focused on alignment vs weightless vs work-out ) and the right teacher ( gentle and forgiving ) really helped me. You have to be careful in choosing videos and classes when you are first starting out.  Many of the classes and videos can be very vigorous and difficult to handle as a beginner. 
This video is from one of the studios where I took classes - YOGA WORKS. This gives you an idea of what a beginner video is like. You may be able to find more beginner videos online.   
Other methods of exercising and meditating
There are many more ways to use mindfulness as well as physical exercise to calm down our ANS. Deep breathing exercises for example have been proven to be very effective. An introduction to simple deep breathing exercises can be found here: 
Qi-Gong is a way to exercise the mind, body, and spirit, similar to Tai Chi.  Both forms of exercise use deep breathing at the heart of the movements.  My sister suffers from HPOTS which causes exercise and orthostatic intolerance.  She practices Qi-Gong and  finds this form of exercise very helpful.  Here is a video she recommends: 
There is very little information about this form of traditional Chinese medicine’s effects on dysautonomia. Commonly, acupuncture ( inserting needles into designated points of the skin )  is performed to help with pain relief, overall wellness and stress relief. The original theory behind this practice is that inserting a combination of  needles into specific points in the body creates balance allowing energy to flow freely.
In western medicine however, the needles are thought to stimulate nerves and therefore redirect pain impulses. 
Personally I have found counseling, or talking with any person that can listen, to be quite helpful in dealing with the challenges of POTS. The frustrations and feelings of uselessness that I encountered after losing my job and independence as a result of POTS naturally caused depression, as well as anxiety related to my symptoms ( fainting and seizures ). At that time, I realized there was no way I could deal with these feelings on my own. I sought help from a friend who was also a trauma counselor and well  equipped to help me deal with my situation. 
Simply talking about our feelings, putting them into words and realizing that these feelings are a normal result of the limitations we face from chronic illness can be a huge relief. When facing any chronic and debilitating illness we have to face the fact that we are losing a lot of the abilities we had taken for granted. This naturally can force us to deal with all the stages of grief, I know I did. And acceptance, the last stage, can be the hardest to achieve. For me, acknowledging my weaknesses; facing my feelings of anger, despair and fear were a part of the process.  In the end, I realized there was nothing I, or anyone else, could do to change the reality of POTS.  I had to go through these stages in order to accept it and to be able to live with POTS and to work on developing a way to thrive in this new reality. Talking to an understanding and experienced counselor, and even to my best friend at times, has helped me immensely. 
Editor’s note:  If you are struggling with depression or suicidal thoughts, you need immediate, professional attention.  Please contact the National Suicide Prevention Association at www.suicidepreventionlifeline.org or call the 24/7 hotline at 1-800-273-8255
Resources and References
For more information about this topic and related information, visit:
POTS What helps?
Mental Health & Chronic Illness

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