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edriscoll

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  1. @JimL Agreed. This is such a highly individual issue. So many other things factor into the results. Regarding dysautonomia specifically, I can see why exposure in high degrees could potentially have an impact on the nervous system. But, again, like all things with dysautonomia, the treatment is very individualized. So all of this data needs to be incorporated with all the other things affecting a person's health. @JimL I know it was a while ago that you made this comment, but I just saw it now - Applause for the "Chuck McGill" reference. Love it!
  2. Dear Member, Perhaps you have emailed or PM'd DINET with a question or you use the forum to connect with other people living with dysautonomia. I hope the information has helped you in some way. We are all here to try and make this all a bit easier. Today is Giving Tuesday the day that jump-starts the giving season for charities. I'm reaching out to ask you to please donate to DINET. Do you remember how important it was to you to be able to find someone available to answer questions, share experiences, and give you support when you needed it? It is so important that our work continues for you and the other people living with this illness. DINET is a nonprofit, run on the dedication of our volunteers - all of whom have dysautonomia too. But the website, the forum, the videos, presentations, and research all take funding. And this is a critical time for DINET. In years passed we have relied on grants and other forms of funding so that we didn't need to ask for money from the people we support. However, current funding streams are being awarded to large organizations and large research projects, not to grassroots groups focused on day-to-day patient and caregiver support, like DINET. But as you know, the work we do is just as important. We know money is tight for everyone and you are most certainly dealing with medical bills and medication costs. But whatever you can spare helps and if you can't donate, ask the people around you to in your name. Tell them how hard this small charity works to help people like you and how little support we have to do it. We want to continue to be there for you and the next person in need. But we need your help to do that. We wouldn't ask if we didn’t have to. Please donate today. https://www.paypal.com/us/fundraiser/charity/1552351 Thank you for your time, Ellen Driscoll, President Board of Directors, DINET Donations are tax-deductible and 100% of funds raised go directly to programs and projects that support and educate patients and the medical community.
  3. When many people hear the term "volume depleted" in reference to a person's condition, they mistakenly think it means the same thing as saying a person is dehydrated. But the difference between the two is an important thing to understand. Total body water makes up 45 to 60% of body weight depending on age, gender and race. Total body water is then broken up into intracellular and extracellular body fluid. Each of these compartments represents 45 and 55% of the total body water. The extracellular compartment is further divided into plasma volume, interstitial volume, and bone and connective tissue water. Finally, blood volume includes the sum of extracellular plasma volume and red blood cell volume. (1) What does all of that mean? Simply put, the amount of water in your body is not the same as the amount of fluid in your tissues or the amount of water in your blood (plasma). The term "hypovolemia" refers to decreased volume in the vascular system. This can be with or without the loss of total body water (dehydration). In fact, severe dehydration can cause hypovolemia, as can vasodilation. It is vasodilation that is at the root cause of one recognized POTS subtype - Hypovolemic POTS. Vasodilation is the widening of blood vessels causing an increase of blood flow and a decrease in blood pressure. In a healthy body this happens automatically as a part of the autonomic nervous system in response to increases in temperature, low oxygen levels, medications, exercise, and other things. (2) When vasodilation does not occur the way it should it can result in hypovolemia, meaning the vascular system in the body does not have enough fluid volume. In the case of hypovolemia, drinking water alone can not correct the issue because filling up the tank (the stomach) with water can not be guaranteed to increase the volume within the vascular system if the flow is restricted by a dysfunctional pathway, in this case vasodilation in a dysfunctional Autonomic Nervous System. Hypovolemic POTS describes a person with POTS symptoms as a result of low blood volume (hypovolemia). For a person with Hypovolemic POTS, treatment is centered around balancing an adequate intravascular volume by increasing fluid intake to 2 to 3 liters per day and salt intake to 10 to 12 grams per day, in many cases medications are used to assist the body in correct vasodilation. IV hydration is also sometimes used to help the body maintain the body's fluid balance. For more information about the subtypes of POTS, including hypovolemic POTS, please visit https://youtu.be/U0s26KdDDdU?feature=shared For a better understanding of how the Autonomic Nervous System functions, please visit https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/understanding-the-autonomic-nervous-system-r208/ References: 1. Guatam Bhave MD, PhD, Eric G Neilson, MD, "Volume Depletion versus Dehydration: How understanding the difference can guide therapy", published by National Library of Medicine, June 2011 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4096820/ (2) Cleveland Clinic website, "Vasodilation" https://my.clevelandclinic.org/health/diseases/23352-vasodilation#symptoms-and-causes Image: Cleveland Clinic website "vasodilation"
  4. @RecipeForDisaster There is a great article full of helpful gadgets and tools that can be really helpful https://www.dinet.org/content/living-with-dysautonomia/technology-education/optimized-living/ The article is a couple of years old but it's easy to find updated forms of the tools mentioned.
  5. Tune in to share the stories from people living with dysautonomia. Hear about their journey to diagnosis and how they are managing since. You are guaranteed to hear experiences that you share with others. Join us for the premiere on 10/26 at 1 pm to chat live with other people living with dysautonomia.. If you can't make the premiere, you can catch the video later on. The video will remain available after that date. https://www.youtube.com/channel/UCUZMfU6I2622J6Fv50oFaiQ
  6. Join DINET on our YouTube channel for a two-part discussion on Mental Health & Chronic Illness. We are joined by two therapists who not only have years of experience in the field of Mental Health, but they are also caregivers to family members living with chronic illness. A must-see for all of us dealing with the ups and downs of living with this disorder and a must-see for caregivers dedicated to helping us along our way. Part 1 of this series is available beginning 10/12 - Part 2 of the series will premiere 10/19 and will remain available after the discussion closes.
  7. DINET Dyscussion's video on our YouTube channel - POTS Subtypes with our very own, Susanne Rimm, RN Susanne discusses the Autonomic Nervous System, how it works and the effects when it dysfunctions. Learn about the 3 recognized subtypes of POTS, how they are similar and how they differ, as well as the treatment approaches of each. Susanne does a tremendous job of explaining the complex systems using real world analogies. There is much to learn from this whether you have POTS or another from of dysautonomia. Available now.
  8. Tina Borsa, LCMHC is a highly motivated individual with over 20 years’ experience working with children, adolescents, and adults as a teacher, counselor, and mentor. Experience with at-risk as well as high functioning clients in both individual and group settings. Worked with culturally diverse individuals from various socioeconomic backgrounds. Strong organizational skills that assist in a team environment. Currently, Tina is a Senior Staff Clinician and Training Director at a nonprofit outpatient counseling center in Keene, New Hampshire. As a clinician, she specializes in working with children and their families, adolescents, and adults. Tina brings her experience with play therapy to working with children who are dealing with trauma, behavioral and emotional problems. She works with children and adolescents with behavioral, school, and social problems. Tina is also trained in Emotional Freedom Technique (EFT) and mindfulness techniques as well as family systems theory. Tina is an EMDR (Eye Movement Desensitization and Reprocessing) Certified Therapist. Tina has also worked with children and adults that have had disabilities including but not limited to Spina Bifida and Cerebral Palsy. With adults her clients include those with depression, anxiety, and trauma. Tina has a holistic approach with a focus on creative expression such as Soul Collage to help people find purpose and hope in their daily lives. As training director, Tina brings her passion for networking and connecting with the community. She truly enjoys helping student interns and pre-licensure clinicians navigate their way in the clinical world and form their professional identity. She believes the training program has a critical role in being both a resource to our community and providing education. In her personal life, Tina is a caregiver to her husband, Matt, who lives with a Traumatic Brain Injury (TBI) and deals with other medical complications. They live in southwestern New Hampshire with their Siberian Husky, Snow. Lori Lohmann is a Master’s level clinician in a community mental health setting. Lori has worked in mental health since 1988, in multiple capacities, in NJ and NH. Her experience began with an internship at a battered women’s shelter in NJ. From there, she worked for a mobile crisis unit in Monmouth and Ocean counties where she gained experience in diagnosing severe mental illnesses, such as Schizophrenia, Bipolar and personality disorders. After moving to NH, Lori transitioned to community mental health where she has worked as a case manager, a residential counselor, and as both an adult and children’s therapist. The defining moment in her career development occurred in July of 2000, when her then 13 yo daughter was diagnosed with a malignant brain tumor. This profoundly informed her perspective regarding the effects of chronic illness, both on the individual and the family system.The consequences of living with or caregiving to a person with a chronic illness can be overwhelming. The financial, emotional, and physical fallout can lead to depression, anxiety, or both. Having experienced all of these things in her personal life has afforded her the compassion to help clients develop coping skills to navigate the difficult circumstance of living with chronic mental or physical challenges. Since then, Lori’s sister has been diagnosed with dysautonomia giving her first-hand knowledge of the impact of this disorder. As a caregiver she has learned how to advocate for clients' rights, giving her a unique perspective in working with clients. She has learned to look beyond the symptoms presented and to consider the mind/body connection in order to help people move beyond their specific diagnosis or illness. Susanne Rimm was born and raised in Germany, but she lived in the US for over 30 years. She is a retired/disabled RN with more than 24 years of experience in the medical field. This gave her a unique advantage to research the field of dysautonomia since her diagnosis of HPOTS in 2012. Since then she has served as a moderator on DINET's forum and she has written several articles for DINET. Susanne believes that despite the challenges of dysautonomia we can live a rich and rewarding life - as long as we make peace with our limitations.
  9. @MikeO That looks great! I have an instant Pot and I love it. Especially in the summer when I really don't want to heat up the kitchen. But I never thought of making eggs in them. What a great idea. My husband can't stand the smell of hard boiled eggs, but I have discovered that my pot works great outside on my deck under our umbrella. So your idea is pure genius. Thank you so much for sharing.
  10. WE WANT YOU! Tell Us Your Story About Living with Dysautonomia As a part of this year's DINET Dyscussion Series, DINET will be sharing videos from people living with all forms of dysautonomia for October Awareness Month (October 2023). Sharing is EASY with our step-by-step tutorial! Videos need to be sent by Thursday, October 12th at 11:59 PM EST. Submissions will premiere on our YouTube channel on Thursday, October 26th at 1PM EST. 1. Record a 3-minute video answering the following questions.* How long did it take to get diagnosed? How has your life changed (emotionally, socially, economically, etc.) since your diagnosis? Have there been things that have helped you adjust to life with a chronic illness? 2. Fill out our form and upload your video here! (For a step-by-step tutorial, check out this video) 3. Join us Thursday, October 26th at 1PM EST to view all the video submissions! *The questions are your guide to telling your story. You don't have to answer all of them if you run out of time. And don't worry about a blank moment or a cough or an interruption. We can edit the video. Please send questions or requests for technical assistance to dinetsocialmedia@dinet.org
  11. Long COVID refers to the illness occurring after a person has had COVID-19 infection and has recovered from that infection. Long COVID can produce many symptoms and has been linked to Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome), ME/CFS (Chronic Fatigue Syndrome) and MCA (Mast Cell Activation Disorder) In an effort to best serve the many people coming to DINET to learn about POTS and Dysautonomia related disorders from Long-COVID, we have joined the Long COVID Alliance along with many other nonprofit organizations. Help finding a Long COVID Clinic - Click on the link "See directory here" Help finding a physician knowledgeable in COVID related disorders and illness - Click on the link "See directory here" COVID-19 Insurance and Disability Denial Guidebook - The guidebook is provided by a law firm working with the Long COVID Alliance network. Please check back. We will add new resources and information as it becomes available.
  12. It is, unfortunately, very common to have to sort through doctors to find the right fit. As @Pistol said "kiss a few frogs.." And I think it is true more so when you have an illness that is both complex and difficult to treat. Many doctors are result driven. They want to diagnose, treat and have success. Of course, that's what we want too, the difference is that we are the ones living with the results when there is not the successful outcome we all wish for. I have found that it can go a long way with a doctor to let them know that you aren't expecting them to know everything. That all we are asking for is a doctor that is willing to learn with us. Because there is no one size fits all treatment for any form of dysautonomia. I weed through doctors very easily by their response to information I bring to them. Example - before I was diagnosed, I was put on Cymbalta by my PCP to help with pain from spinal fusion surgeries. I had a hideous reaction. I couldn't lift my head without being so dizzy that I came close to fainting. I was taken off the drug but my PCP was surprised by my body's reaction to the med since it wasn't listed anywhere to be a side effect or known reaction. We ended up chalking it off to some sort of weirdness and I started listing Cymbalta under allergies on my medical forms. Two years later when I was finally diagnosed with some form of dysautonomia, I brought info with me for my next visit with my PCP. It was an article about SNRI's and the effect of that classification of drug on dysautonomia. She was more than happy to revisit the topic. She read the article, asked if she could keep and thanked me for the info. Now, that's a keeper. Keep firing those frogs until you find the Prince, or Princess. The good ones are out there.
  13. I haven't come across what you are asking about. But it sounds like two separate things that I have read about and experienced. The first, as you mentioned relating to the decrease of blood pressure when standing (OI) and the blood pooling in the lower extremities. But separate from that, I have had discussions with my doctors about the "leaking" of capillaries into surrounding tissue that can cause swelling in the extremities. I haven't read or heard anything about this "leaking" or squeezing of capillary blood being related to blood volume upon standing or related to OI/dysautonomia. I do love the imagery of oatmeal squeezing through panty hose. Very interesting article. Thanks for sharing.
  14. @Nymph Low oxygen can be related to many things. Most common with dysautonomia/POTS is shortness of breath with exercise. It usually returns to normal ranges while resting. I have dysautonomia related to damage to my thoracic spine. I had shortness of breath with exercise so all of my doctors believed it to be related to dysautonomia. However, the shortness of breath increased over time. That is not common with dysautonomia. In my case, it turned out to be a relatively rare condition related to the arteries in my lungs and I was able to get the right treatment. But my treatment was delayed for more than a year because the assumption was made that it must be caused by the dysautonomia. My point is that it can be dangerous to attribute all of our symptoms to dysautonomia. I think it is a good idea to have your doctor check you out and rule out any breathing issues. There are many tests that a doctor can do to see if you have any lung issues - and none of them are painful. If your doctor can't explain your issues, ask to be referred to a pulmonologist. Keep us posted and best of luck.
  15. A new study is open for people over 18 who have developed POTS after having a COVID infection. The clinical trial is to learn more about a new medication that may decrease POTS symptoms by decreasing autoantibodies. To learn more about this study and to see if you qualify, visit: https://www.alphastudyforpots.com/#!/
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