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Everything posted by edriscoll

  1. The word we have received from our medical advisors here at DINET regarding the vaccination is very much in keeping with what Yogini posted - it is such a new vaccine that there is no data related specifically to the effects on dysautonomia patients. It is a personal choice, but the general consensus is that the common side effects seen with the vaccine are far less medically traumatic than the more severe effects of the virus. Unfortunately there is just too little known about the virus, the vaccine and dysautonomia to give you a definitive answer. Generally the only contraindication
  2. Interview by Chelsea Goldstein for Dysautonomia Information Network Hi! My name is Savannah and I am 26 years old. I have Postural Orthostatic Tachycardia Syndrome (POTS). I also have Ehlers Danlos Syndrome (EDS), Gastroparesis, Trigeminal Neuralgia, Vocal Cord Dysfunction, and dermatographia. I love to read, paint, knit, color, sing, and pretty much anything else that could be a creative outlet. I accomplished my dream of becoming a nurse, but dysautonomia took that from me. I’m currently an LPN, and I hope for a cure one day so that I can become an RN in labor and delivery. Until
  3. 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 fo
  4. "Being an American" begins with "all men are created equal" which is why as Americans we should all be concerned that all of our citizens have the same rights to health care, as well as the many other basic necessities of life. Thank you for your comment.
  5. Below is a statement from the Board of Directors of DINET and the Administrator of this forum in response to recent efforts to bring awareness to the many forms of racial inequality and injustice in our country. We invite members to join in this discussion, however comments and remarks must be related to the subject of race and healthcare only. We remind members that we do not allow political discussion or commentary on this forum and any remarks outside the subject of healthcare will be edited or removed. Thank you. DINET has always been grounded by the principle of support. In
  6. @Starrynight I am so glad that you found us! Your story is so typical of so many of us with dysautonomia. I read a portion of your post out-loud to my husband and after every few sentences said "that sounds just like what you went through". My PCP suggested POTS to me and gave me an article to give to my cardiologist (after I wore heart monitors multiple times) showing only "non-threatening" rhythm issues. The cardiologist wouldn't even consider POTS or read the article and handed it back to me while telling my husband to consider a therapist for me. After choice words from both my hus
  7. DINET's VP, Chelsea Goldstein posted this question to the dysautonomia community to see what tips people came up with to explain to the "healthy" world, what we have discovered during our years of frequent stay-at-home time and isolation. 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  8. A friend of mine gave me a great idea for shopping yesterday. We live in a very cold area - in fact we are supposed to get 6 inches of snow tomorrow. So our cars aren't hot and even having the heat on in the car doesn't help because it gets cold so fast. Her suggestion was to bring gloves with you to the store, preferably disposable gloves. You can still get disposable gloves at Amazon. They don't need to be medical gloves, just something to wear over your hands. Put them on right before you go in the store, throw them away before you get in your car. Once in the car, use sanitizer and
  9. 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 pop
  10. 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
  11. Dr. Blitshteyn, one of the leading specialists in dysautonomia disorders and one of DINET's medical advisors wrote two articles specific for dysautonomia patients and those with chronic illness. Part 1 - What we should know and Part 2 - What to do now. These are anxious times and certainly even more stressful for those of us living with chronic illness, but being prepared, taking precautions and encouraging our close family members to do the same is the best we can do. We will continue to post information as we receive it. Many thanks to Dr. Blitshteyn. -- DINET Board of Dir
  12. Paths and Stories After reading an article, use your browser's back button to easily return to the Table of Contents on this page. Mental Health and Chronic Illness by Hallie MacDonald Lefty-Loosey, Righty-Tighty: The Autonomic Nervous System, Blood Vessels and POTS by Susanne Rimm Meet the Member: Claire's Story by Chelsea Goldstein The Story Booth Project: Sharing the Stories of Patients and Caregivers by Ellen Driscoll Meet DINET's Board of Directors Updated: Research and News about Dysautonomia and Related Illnesses Updated: Open Recruitment Studies
  13. 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. Why did DINET choose this project? DINET has been collecting and sharing the stories of our patients and caregivers for over a dec
  14. It is overwhelming when you are first diagnosed. But it does get easier over time and you begin to manage your symptoms. You may want to take a look at a video we produced about POTS called Changes: Living with Postural Orthostatic Tachycardia Syndrome. It includes interviews with patients and specialists. Understanding the syndrome is half the battle. https://www.dinet.org/info/video-living-with-pots/changes-living-with-postural-orthostatic-tachycardia-syndrome-r113/ Best of luck and keep asking questions and talking to other people living with this - it really does help. H
  15. Just to add a safety note here - since the expected changes in HR and BP can cause syncope or presyncope symptoms, please be sure to have someone with you if you attempt to measure at home, especially the first time you try this. Fainting suddenly can result in serious injury so please take precautions to have someone available who could lower you to a safe position if you feel faint or become dizzy.
  16. Our quarterly newsletter, Dysautonomia News, has an opening for a writer. The newsletter covers a variety of lifestyle and medical topics, as well as medical news, a medical Q & A column, research and open studies. We publish to a large audience of DINET members and opt-in Facebook followers who receive the edition via email. The newsletter is very well received drawing consistent "open and read" statistics far above the industry norm, so your articles will reach a wide audience and give you a great opportunity to help others living with dysautonomia. You do not need to be a professio
  17. #GivingTuesday is an international day that was started to bring attention to nonprofits and their causes; an international day of charitable giving. DINET relies on donations, big and small and all are important and greatly appreciated. But just as important to DINET's effectiveness are the stories that we all share about our journey, our experiences with this disorder and the people who help us along the way. In honor of #GivingTuesday, please share a story about how DINET or a person you met through DINET has helped you along the way. I will start with mine. When it was first
  18. Great new video just posted by Lauren - Chronic Corner on YouTube covers travelling with POTS and other chronic illnesses. She offers her tips and also shares tips sent in by members and followers of DINET. Worth watching. Also, check out the article written by DINET's VP, Chelsea Goldstein ,
  19. When I rise quickly and walk, I become pre-syncopal and experience similar strange sensations in my hearing and vision. Everything sounds as though it is very far away and the world becomes very grey. I almost always remain conscious but I can't speak or move during these episodes. I was given a similar explanation by my doctors as Pistol was given, that it is the result of changes in circulation and BP. But I've never experienced this when sitting or lying down, only when I change position or move to quickly. You didn't say what tests were run on your heart and lungs. But while shor
  20. There is not always an underlying cause for POTS. It can also be the end result after the body being stressed by illness (such as flu or virus), trauma and surgery. To suggest that there is always an underlying cause or condition that is ongoing in addition to POTS is not correct.
  21. @Stark Thank you for bringing this study to our attention and sharing with members. I will post it to our research page and share with our Facebook followers. Thanks so much!
  22. Thank you KiminOrlando for making this point. FAST (shown in this image posted) is the acronym for remembering what to do to check for stroke vs other causes of drooping or numbness. The impact of stroke can be reversed in part or entirely if medication and treatment is sought as quickly as possible. If anyone has numbness in the face, do the FAST test. 1. Ask someone to watch you smile to see if your smile is symmetrical. If you are alone, look in a mirror to see. 2. Raise both arms over your head. Do both go up to the same level? 3. Is your speech slurred or jumbled? 4. Time - go
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