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About edriscoll

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    Advanced Member
  • Birthday November 14

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    New Hampshire
  • Interests
    gardening, painting, cooking, sewing, reading, creating art with a variety of materials

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  1. @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 husband and me, we walked out and found another doctor. You are right, we can not diagnose you, but your symptoms are real and any doctor who refuses to seriously consider a disorder so closely mirroring your symptoms should be fired. The medical system is intimidating and even more so when you feel ill and need them the most. So it is hard sometimes to remember that they work for you! As with any one else in your employ, if they aren't listening or following direction, they need to be replaced. @Pistol has given you excellent advice on how to proceed and how to (hopefully) manage your symptoms. I would add a couple of things - sometimes doctors are not familiar with the term dysautonomia, some are more familiar with POTS. But they all are familiar with the autonomic system and the symptoms caused when it isn't working correctly. Sometimes, you can get further if you can find a common terms to use for discussion. Don't give up on a doctor because they haven't heard of dysautonomia or POTS. They can still be a great ally I ran into a hiccup when I finally found a cardiologist familiar with POTS who ordered my first TTT. It was negative. Luckily, the cardiologist was convinced from my symptoms and discussions with my PCP, that something was going on with my autonomic system. So even though I didn't fit the diagnostic criteria for POTS, I fit the symptoms for some form of autonomic dysfunction (dysautonomia). I was referred to a neurologist who had experience in autonomic issues and have been successfully managed since then. I add this because the MOST important thing is finding a doctor who believes you and is willing to partner with you. If you have a good relationship with your PCP, they can be extremely valuable in helping you find the right fit for treatment. My PCP believed in me and trusted my judgement, so she sent a letter of introduction to each new doctor I've had, explaining what my symptoms are, how real they are and her background with me as a patient. It is sad to say, but a doctor telling another doctor (in professional terms) this patient is telling the truth, this is not anxiety, depression or mental illness, has saved me a lot of time and frustration. We shouldn't need to have a doctor vouch for us, but I've found that it has helped save me from multiple visits trying to convince a new doctor that I really am ill. I agree with @Pistol completely when she suggests that you keep researching, learning and advocating for yourself. You have already proven that you have the capacity to be your own detective by finding our site and forum. Keep reaching out for help and guidance and especially support. It is a very difficult illness for people to understand because like with so many other "invisible illnesses", you can look great, seem great much of the time. You can look wonderful even when your symptoms are at their worst. And the fatigue that comes with dysautonomia is a hard symptom for family and friends to understand too. I hope you will post again and reach out when you need support. You are not alone in this. Best of luck in finding a doctor or getting tested and let us know how you are doing.
  2. 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
  3. 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 then of course wash your hands thoroughly when you get home. If you can't get disposable gloves, wear winter gloves through the store. You would still take them off and put them in a pocket until you get home or better yet, on the floor of your car. You can wash them when you get home. Even with gloves, you will still need to wipe down your groceries, etc. But the idea of the gloves is that they remind you not to touch your face! They have blue, orange, black colors available and anything colorful will work. Nothing is 100% naturally, but the main danger is touching your face in public, so anything that helps with that, will, hopefully keep us safe. Best wishes everyone!
  4. 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 EXPERTISE Adolescent Medicine, Chronic Fatigue Syndrome, Orthostatic Intolerance, Pediatrics, Postural Orthostatic Tachycardia Syndrome (POTS), Syncope RESEARCH INTERESTS Chronic fatigue syndrome; Fibromyalgia; Elhers-Danlos Syndrome; Orthostatic intolerance syndromes; Gulf War illnesses; Pelvic congestion syndrome
  5. 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
  6. 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 Directors
  7. 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
  8. 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 decade. Our shared experiences make an enormous impact on other patients, especially newly diagnosed people or people sharing new or worsening symptoms. There is enormous comfort in learning that you are not alone. One of the most common experiences specific to POTS and dysautonomia patients is the difficulty in getting a diagnosis, finding a physician that believes you, understands you and even knows something about the disorder. The other commonality is the invisible illness aspect. We just look so good while feeling so bad. This can lead to a lot of misunderstandings with family and friends and sometimes a lack of support. Our member stories and forum give DINET members a chance to share those stories with each other, but it does not give us a direct platform to share with the medical community and researchers - Story Booth does! Participating is simple. You must be 18 or older You must be able to read and speak English There is a pre-interview survey, a post-interview survey and one 20 minute interview about your experiences. The phone interview is audio-recorded by the Story Booth team. The entire process takes about 45 minutes. What to Expect: A MyPaTH Story Booth interview includes a one-on-one conversation with you after you complete a brief questionnaire that asks basic demographic questions such as; your age, gender, education, etc. The conversation will last up to 20 minutes and will be audio-recorded. You will be asked to tell a story related to your experiences as a patient (your illness or interactions with the health care system for example) or your experience as a caregiver. A MyPaTH Story Booth member will explain the process to you and review the consent form. They will go over the extensive security used to guard your information, and answer any questions that you have about the project or the process. They will remind you not to use any identifying information (your name, a doctor's name, the name of a hospital, etc) Each recorded interview is checked through and any identifying information that is accidentally used, will be "bleeped" out before the interview is added to the database. Ready to share your story? Contact mystory@pitt.edu or call 412-864-3025 Want to ask a DINET volunteer a few questions before getting started? Contact webmaster@dinet.org This is an IRB approved research project. 6-14-2017 MyPaTH Poster.pdf
  9. 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. Hang in there.
  10. 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.
  11. 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 professional writer, however, strong writing skills are required. Please understand that this is not suitable for blog writing, although a writer's personal experiences are frequently included in their articles. If interested, please take a look at some of our past publications and email webmaster@dinet.org https://www.dinet.org/info/newsletters/dinet-newsletters-r41/ A writing sample is required to apply.
  12. #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 suggested that I may have something called "autonomic dysfunction", I began searching for anything that I could find on the subject. That was my introduction to DINET and many other organizations with a LOT of medical information. I was frightened, very ill and very overwhelmed. I read, printed, memorized and shared the information from all of the sites. I was now well informed but still just as frightened, ill and overwhelmed. And then something changed. I sent an email to DINET asking a question about information found on the site. I expected to wait a while and then receive a followup email with links to more information or a medical answer to my question. What I received was a personal email from a DINET volunteer. Her email gave me the medical answer and links that I needed and so much more. At a time when I was being shuffled from one lab test to another, one appointment after another, I frequently wondered if anyone remembered my name. But this DINET volunteer took the time to share some of the common experiences dysautonomia patients have. She wrote me and asked questions about how I was managing. She encouraged me to join the forum and to continue to reach out to other people sharing similar experiences. Through the forum and discussions with other members, I was no longer isolated and I was better understood. It was that personal one-on-one communication that I so badly needed and that made all the difference to me. I joined the forum and sometimes just reading something that someone else wrote was enough to help ease my own struggle. I became a volunteer for DINET not long after joining and I try to be that "voice" on the other side of the email or message whenever I have the opportunity. As important as the knowledge and education offered has been to managing my illness, I will be forever grateful for the personal touch and experiences shared by the volunteers and DINET members. That's my story...now it's your turn. ******************************************************************** Ways to donate - https://www.paypal.com/us/fundraiser/charity/1552351 shop - smile.amazon.com (select Dysautonomia Information Network) or check out the many other ways - https://www.paypal.com/us/fundraiser/charity/1552351
  13. 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 ,
  14. 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 shortness of breath is a symptom of dysautonomia, it is also a symptom of other illnesses and it can be difficult for a physician to distinguish between the different issues that are going on. Usually the shortness of breath that is attributed to dysautonomia is related to exercise intolerance or changes in position and it usually resolves quickly if the person stops moving or sits down. It sounds like you are experiencing shortness of breath when you are already sitting. It may sound simplistic but I've attended Pulmonary rehab twice, the first time for Pulmonary Edema (after surgery) and again last winter for an underlying pulmonary/cardiac issue, and I was shocked at how shallow I was breathing without realizing it. I was told that most people do not breathe from the diaphragm as we are meant to, but instead take shallow breathes from only the top portion of their lungs. I was reminded of this when you wrote that your drop in 02 resolves when you take a few deep breathes. Bottom line, there are underlying issues that can have very similar symptoms to dysautonomia., even the deconditioning that can happen after illness can cause dyspnea. If you are getting breathless or notice continued drops in oxygen levels that get worse or don't resolve, don't give up on asking your doctors for help. You didn't mention if your doctors recommended any sort of rehab after the DVT/PE, but it might be worth asking about it. If for nothing else, it is monitored exercise at a slow pace and because it is monitored it may even give your doctors more information about what is going on. It didn't cure me of course, but it really helped me understand how to help myself and manage my symptoms. I hope you feel better soon.
  15. 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.
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