2020 has been a strange and difficult year thus far. So, we want to use this October to honor the struggles, pain, and growth that have occurred this year, while also continuing with our mission to increase awareness of dysautonomia, and the everyday experiences of people living with dysautonomia.
How to get involved
We are proud Spoonies!
Spread awareness and have fun.
Take a photo of yourself with a spoon on your nose (it's a lot easier than it looks!) and share it on Facebook or Instagram with the hashtag #DINETspoonie and #SpoonieChallenge. If you aren't already following DINET, follow us on Facebook and our new Instagram page @DINETorg.
Don't stop there - tag 3 friends to share the challenge with you and increase your chances to win. The more you share, the further the awareness spreads!
We will randomly select a weekly winner from all entries. Each winner will receive a custom DINET facemask (they're awesome!), along with a DINET tote bag.
GRAND PRIZE - At the end of the month, a Grand Prize Winner will be selected to be the DINET Awareness Feature! As the 2020 winner, an article will be written about you and your journey living life with dysautonomia - how you were diagnosed, how your life has changed and the message you most want people to know about living with dysautonomia. Your story will be featured on our website and our Facebook page and the story will become a permanent part of the DINET website. The personal stories on our site are an important part of the support new members find when coming to our site for the first time. You can be a part of that support and education.
Anyone can enter and win the weekly challenge, however, if a friend or family member is drawn for the Grand Prize, the story and feature will be focused on the person living with dysautonomia.
Follow us on Facebook
Masks for Awareness
Make sure the only thing being spread this October is Awareness! When you purchase a DINET mask on our website, you will be spreading awareness AND helping other communities at the same time! How? ALL of the proceeds from mask sales will go toward donating masks to organizations around the country that work with people who are chronically ill, have little or no health insurance, and/or have difficulty accessing healthcare. We have also committed to sharing vital information about dysautonomia with these organizations and their patrons so that undiagnosed people who don’t have access to specialized medical care may be able to learn about the condition and advocate for testing. $10 per mask (Includes shipping) Buy a mask today!
Living with Dysautonomia
We are so excited that we will be launching a new section on our website, Living with Dysautonomia, filled with TONS of tips, ideas, and support for addressing day-to-day aspects of living with dysautonomia. This October we will share at least 15 new articles filled with practical information about mental health, work, disability resources, service animals, emotional support animals, technology, and education.
AND our YouTube channel - Chronic Corner - will debut three new videos about different aspects of symptom management. If you haven't visited the channel yet, there are 18 original videos about POTS, other types of Dysautonomia, management and lifestyle issues. You don't want to miss it!
Other things you can do to help
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. Please consider a donation, it is greatly appreciated. Donate today.
Print 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.
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.
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”.
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.
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.
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.
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
There is very little literature about the effects of POTS on pregnancy. There is far more studies related to the effects of pregnancy on POTS patients and their symptoms. However, to put anxious minds at ease, there has been no significant change in maternal or fetal related complications and 60% of patients remained stable or improved during pregnancy (Blitshteyn et al., 2012).
According to current research 2/3 of women experience improvement of symptoms in the second and third trimester and 1/3 of women develop worsening symptoms. There does not appear to be a difference between first-time pregnancies versus multiple pregnancies and there is no evidence of adverse events in pregnant women with POTS. POTS does not pose an increased risk for pregnancy or birth. (Kanjwal et al.,2009)
Physiological changes in pregnancy
In the first trimester, there is a 50% increase in blood volume to supply the vascular system of the uterus, an increase in cardiac output and peripheral vasodilation. There is a decreased sensitivity to vasoconstrictors such as angiotensin and norepinephrine and an increased production of vasodilators like nitric oxide and prostacyclin. (Goodman et al., 1982; Gant et al., 1980) This can increase the acute symptoms of POTS in the first trimester, such as tachycardia, lightheadedness, fatigue and even syncope as well as other symptoms of POTS. Still, 60% of patients remained stable or reported improved symptoms during pregnancy (Blitshteyn et. al., 2012)
Treatment of POTS in pregnancy
The treatment of POTS in pregnancy is highly individualized and based on symptom relief. It is recommended that general guidelines for POTS treatment be used during pregnancy. (Sheldon et al., 2015)
Usual first-line treatments are:
Exercise - 25 to 30 minutes of mild exercises per week, avoiding upright posture (swimming or recumbent bike are recommended and better tolerated) and exercises performed lying on the left side to minimize compression of the vena cava.
Oral hydration of 2 l of water daily as well as increased salt intake of 3 - 5 gm sodium per day except if hypertension is present or pregnancy is high risk for hypertension.
Compression garments can be helpful and are covered by most insurance plans with a prescription. There are also compression stockings specifically designed for use during pregnancy.
Medications during pregnancy
Whenever possible patients have weaned off medications during pregnancy. For patients with debilitating POTS symptoms, particularly patients with recurring syncope, medications can be safely prescribed. (Ruzieh, Grubb, December 2018)
Some of the more commonly prescribed are ( not limited to )
Midodrine - trialed in pregnant patients with POTS with no adverse maternal or fetal outcome (Kanjwal et al., 2009: Glatter et al., 2005)
Beta Blockers - such as Propanolol were found to be effective on lessening symptoms without adverse reactions (Raj et al., 2009)
Fludrocortisone - used by Kanjwal et al., 2009 in a pregnant patient with POTS with no significant adverse effects.
In patients who are not fully helped with the above solutions, Duloxetine and Venlafaxine can be added with particular benefit to patients who suffer from symptoms of fatigue and anxiety.
Pyridostigmine may improve tachycardia in POTS patients (Raj et al., 2005; Kanjwal et al., 2011). However, Pyridostigmine also increases bowel motility. Therefore, although it does not have adverse reactions specific to pregnancy, it is not tolerated in many patients due to multiple GI side effects (Kanjwal et al., 2011)
IV fluids - infusing 1 L of normal saline over 1-2 hours weekly may be helpful in refractory cases. It can then be increased or decreased on an individual basis as needed. If IV Fluids are used, it is recommended that it be done on an outpatient basis and to minimize the risk of infections and thrombosis, the use of central lines and infusion ports should be avoided. (Ruzieh, Grubb, December 2018)
Bedrest - partial bedrest may be recommended in patients with recurring syncope or falls.
There are no special considerations for vaginal delivery vs C-section. Both can be carried out successfully without complications. The choice for what is used should be made solely based on obstetrics. (Glatter et al., 2005; Powless et al., 2010; Blitshteyn et al., 2012; Lide, Haeri 2015) No evidence was found to favor one method or type of anesthesia used - regional vs general vs none. Also, an epidural injection was found to be safe and didn’t trigger POTS symptoms. The birth method or anesthesia used should not be influenced by a POTS diagnosis. It should be solely based on Obstetrician’s recommendations. (Corbett et al., 2006)
Some women experience worsening of symptoms and others find rapid improvement of symptoms after delivery but the majority of women remain stable. Breastfeeding is safe and encouraged, however, caution should be taken if medications are being used to treat POTS symptoms during pregnancy and potentially transfer to breast milk. (Bernal et al., 2016)
According to current research, there is no long term impact of pregnancy on POTS and POTS does not pose an increased risk for pregnancy or birth. HUTT testing is safe during pregnancy.
It is recommended that patients with debilitating POTS symptoms consult with a high-risk obstetrician, and any obstetrician treating a POTS patient should take the time to learn about POTS and dysautonomia in general as well as the medications used to treat it.
Special note for POTS patients with EDS: Pregnant women living with EDS and POTS are at a higher risk for maternal and fetal complications. Therefore these patients require more monitoring and closer follow up (Jones, Ng 208; Sorokin et al., 1994)
For help in gathering or printing materials for your obstetrician, please contact email@example.com
Ruzieh Mohammed, Grubb Blair P., Overview of the management of Postural Orthostatic Tachycardia Syndrome in pregnant patients, Autonomic Neuroscience, Vol 215, Full Text https://www.sciencedirect.com/science/article/pii/S1566070217303442
DINET has always been grounded by the principle of support. In alignment with our mission of support, we believe Black Lives Matter and support organizations, movements and people working to reduce racism, discrimination, prejudice, violence and systemic injustice in our country and throughout the world.
And, as an organization that believes wholeheartedly in advancing healthcare for our members who live with dysautonomia, we must acknowledge that we have not done a good job recognizing the inequities in healthcare experienced by Black Americans day in and day out, including those who live with dysautonomia.
We are sorry to our Black members, brothers, and sisters for not joining the conversation sooner. We are listening. We will keep educating ourselves. And, as we continue to work toward our goal of a more equitable healthcare system, we will be conscientious about recognizing the particular healthcare inequities faced by Black Americans.
DINET Board of Directors and Administrators
*Thanks to Chelsea Goldstein for the compilation of resources and research contained in this article.
Below is a list of resources we are using to further our education on racial disparities in healthcare:
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington
Communities in Action: Pathways to Health Equity by the National Academies of Science, Engineering, and Medicine
Rare Diseases and African Americans by Black Health Matters
The Overlooked History of Black Disabled People by Vilissa Thompson
Understanding and Addressing Racial Disparities in Healthcare by David Williams and Toni Rucker
African American Health by the CDC
The Burdens of Race and History on Black People’s Health 400 Years After Jamestown by Stephen B. Thomas and Erica Casper
The Tuskegee Timeline by the CDC
Race, History, and the Science of Health Inequities by Sandro Galea
COVID-19 & Racial Disparities:
COVID-19 United States Breakdown by Black Ladies in Public Health
Racism and Inequality in the Face of COVID-19: Viruses Don’t Discriminate, But We Do a webinar moderated by Jamila Taylor
Coronavirus in African Americans and Other People of Color by Sherita Hill Golden
Spotlight on COVID-19 and Health Disparities: Opportunities to Achieve Better Understanding and Equality for Vulnerable Populations by Eliseo J. Pérez-Stable
COVID-19 and Racial/Ethnic Disparities by Monica Webb Hooper, Anna María Nápoles, and Eliseo J. Pérez-Stable
Organizations that work toward health equity:
Society for the Analysis of African American Public Health Issues
Black Ladies in Public Health
National Institute on Minority Health and Health Disparities
Healthy African American Families
Black Women’s Health Imperative
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
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
Laughing at My Nightmare: COVID-19 Resource Relief
Arkansas Community Foundation: Arkansas COVID Relief Fund
Ehlers-Danios Society: Virtual Chat Rooms
Twitter QA: #spooniechat
Our Odyssey: Online Meetups
The Mighty: Come Hang with the Mighty Events
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
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
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
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
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
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 firstname.lastname@example.org All information will be reviewed.
Open Recruitment Studies (updated May 2020)
*****RECRUITING COVID-19 STUDIES: 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: https://www.rarediseasesnetwork.org/COVIDsurvey
Neurology research: New research study conducted by Dr. Blitshteyn to examine the impact of COVID-19 on patients with pre-existing neurological disorders including POTS, OH, MSA, Neuropathy and Chronic Migraine. The study includes a 5 min anonymous survey that a patients neurologist would fill out. Please share this survey with your neurologist if you have tested positive for COVID-19 and you are being treated by a neurologist for the disorders listed. https://patientscount.org
***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/
RECRUITING: 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 email@example.com
Beatriz Kohler, firstname.lastname@example.org
RECRUITING: 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.
RECRUITING: A study is being conducted to examine the affect on parents who are raising a child with POTS. This study is being conducted through the University of Mississippi, under the Principle, Abigail Armstrong for her Master's thesis. Abigail is a POTS patient and DINET member.
This is an IRB approved study.
You must be a parent or primary caregiver of a child 8 - 17 years of age who has been diagnosed with POTS
The child's diagnosis must have been made 6 months ago or longer
You must be able to speak and read English proficiently
This study will be conducting completely online and will take 10 - 15 minutes to complete. The purpose of this study is to better understand the impact POTS has on the parents and the child. The study will ask you to complete a series of brief questionnaires about yourself, your experiences as a parent, and your child diagnosed with POTS.
Please email Abigail with any questions about the study at email@example.com
To begin the study, click on the link provided: https://usmep.co1.qualtrics.com/jfe/form/SV_cIpzp1ncQXLJdad
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
RECRUITING: Clinical Trial: Dr. Satish Raj and the University of Calgary is recruiting POTS patients for a study of the effects of compression on the symptoms of POTS https://clinicaltrials.gov/ct2/show/NCT03484273?term=POTS%2C+Postural+Orthostatic+Tachycardia+Syndrome&cond=dysautonomia&rank=5
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 firstname.lastname@example.org or call 507-284-4462
Participating Clinics: Rochester, Minnesota.
RECRUITING: 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
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
Specifics about the study and a consent form will be emailed to you if you are interested.
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
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
Still 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 email@example.com
Contact: Jenna Adamowicz, MA 631-371-4417 firstname.lastname@example.org
Recruiting: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5
Completed, Results TBA PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan. This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression.
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. https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 Contacts: Arijit K Bhaumik, B.A. CCRP, 734-936-8281 email@example.com Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, firstname.lastname@example.org Estimated Primary Completion Date: July 2018
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 http://www.mayo.edu/research/clinical-trials/cls-20128843 Mayo Clinic location, Rochester MINN, Principal Investigator: Dr. Philip Low Contact: Tonette Gehrking, CAP, 507-284-4462, email@example.com
(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: https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 New York University School of Medicine Estimated Completion date: September 2019
Contact: Horacio Kaufmann MD, 212-263-7225,firstname.lastname@example.org Contact: Jose Martinez, MA, 212-263-7225, email@example.com
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.
(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 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
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, firstname.lastname@example.org 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
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.
DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated.
COVID-19 Research: New research study conducted by Dr. Blitshteyn to examine the impact of COVID-19 on patients with pre-existing neurological disorders including POTS, OH, MSA, Neuropathy and Chronic Migraine. The study includes a 5 min anonymous survey that a patient's neurologist would fill out. Please share this survey with your neurologist if you have tested positive for COVID-19 and you are being treated by a neurologist for the disorders listed. https://patientscount.org/
NEW: 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
NEW: Drug discovery programs for synucleinopathies in Multiple System Atrophy https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1008222
NEW: The impact of dysautonomia on patients with Guillian-Barre Syndrome http://bit.ly/2wu9tJZ
NEW: 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. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6064900/
An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211 https://www.sciencedirect.com/science/article/pii/S1566070217301522
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
NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology 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 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf
Updated info from the CDC on HPV Vaccine safety for POTS patients 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
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 towards 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 https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet
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."
In theory, young people with CFS and orthostatic intolerance (plus or minus some form of hypermobility) should not be at greatly increased risk of severe coronavirus disease compared to others their age, provided they don’t have untreated respiratory conditions like asthma.
The data from China and from the state of Washington both suggest that not only do children and adolescents have milder disease and fewer hospitalizations, but they also seem to get the coronavirus less frequently. Only 1% of the known cases in China were children, even though children represent 20% of the Chinese population. That is a curious phenomenon, and might ultimately prove to be due to the fact that the young people were asymptomatic and didn't go in with illnesses that would warrant testing. In any event, it speaks to the milder nature of the illness in younger people.
The epidemiologic data suggest a marked increase in disease severity for each decade above 50-60, especially for those with lung disease like chronic obstructive pulmonary disease (COPD), high blood pressure, and diabetes. So, my pediatric and young adult patients should be relatively protected from severe disease because of their younger age. They also know more than most about social isolation and avoiding illness than most of the general public, so they have much to teach others about how to manage. That said, we don’t have all the facts to make good decisions yet. All I can tell you is that I have not had anyone from my clinic develop coronavirus thus far, acknowledging that we are early in the pandemic.
I completely agree with being cautious. The more we can do now to prevent person-to-person spread, the less likely we will be to replicate the Italian experience where the hospitals are overwhelmed. Using all of the CDC recommendations makes good sense (hand washing, elbow bumps, sanitizer, social isolation, avoiding crowds). On the issue of using face masks, I differ from some of my medical colleagues. Many of their comments are an attempt to deal with limited supply of face masks. But, we are all advised in the hospital to don a face mask when dealing with patients who have respiratory symptoms. So, as a protective measure I would wear a mask in public even though the official recommendation is that it won’t stop the spread of droplets of virus. I suspect it will stop at least some droplets, but the neglected point about facemasks is that they help remind you to not touch your face and inoculate the nasal passages with virus from your hands. They may also create a bit of social isolation, as people will keep their distance from anyone wearing a mask! Some people have been sewing their own facemasks, in an effort to help address the shortages. This is an amazingly positive effort.
My Pediatric Pulmonary colleagues do not think asthma will be a big risk factor, based on their reading of the evidence. Similarly, we don’t think EDS and mast cell activation will necessarily confer an increased risk.
Most classes have been cancelled by now. For those who are working, I would try to work remotely, especially in the next couple of weeks. This might be acting in an overly cautious manner, but I think none of us have to apologize for being overly cautious at this juncture.
The key at this stage is to be very rigid and strict about complying with the recommendations for social distancing and isolation. Remind your friends and family (skeptical or not) that this is no joke, and that lives depend on us pulling together like we all did in response to 9/11/2001. We can do this!
Peter Rowe, MD
Director, Children's Center Chronic Fatigue Clinic
John Hopkins University School of Medicine
Professor of Pediatrics
Adolescent Medicine, Chronic Fatigue Syndrome, Orthostatic Intolerance, Pediatrics, Postural Orthostatic Tachycardia Syndrome (POTS), Syncope
Chronic fatigue syndrome; Fibromyalgia; Elhers-Danlos Syndrome; Orthostatic intolerance syndromes; Gulf War illnesses; Pelvic congestion syndrome
Below are articles full of information designed to help people living with dysautonomia. There are guides written to help your family and friends understand your illness and help you all learn to live with it together. The POTS Guide for kids was created to be used as a handout for your child's teacher, coach, tutor, school nurse, their best friend's mom, or anyone else that may be responsible for your child when you are not there. Many guides include links to pdfs to make it easier to print, email or share. The Patient's Guide is to help patients with tips to prepare for a visit to the ER or a new medical provider. The Information Sheets are designed to help you remember the information you should have with you. The Life with Chronic Illness section includes links to newsletter articles on a variety of subjects about the issues faced for people with chronic illness.
A guide for family and friends
POTS GUIDE - for the family of children & teens living with POTS
I know a kid who has POTS
Hydration and POTS
Preparing for the ER and new medical visits
LIFE WITH CHRONIC ILLNESS
Managing and enjoying life - surviving guilty feelings, service dogs, dehydration, beat the heat, visiting national parks.
Thriving with chronic illness - traveling, adaptive devices, technology, hyperPOTS patient story, finding balance.