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Director of the University of Central Florida–Rochester Regional Health POTS clinic. I have been in practice since 2004 and caring for patients with POTS since 2012. I was previously in Rochester, NY until moving to Orlando, FL in 2024. At present, I see patients year-round specifically for POTS and cardiovascular autonomic dysfunction while at UCF Health-University of Central Florida. Five weeks/year, and spaced out throughout the calendar year, I return to Rochester, New York and see patients exclusively for POTS and cardiovascular autonomic dysfunction. While I am back in Florida, I work remotely with my POTS nurse practitioner in Rochester so that we continue to manage these patients all year long. I have published with Dr. Svetlana Blitshteyn on POTS and recently presented at Medical Grand Rounds here at VA Medical Center in Orlando on POTS. I have also presented to student health centers at our local universities on POTS to help raise awareness on this very prevalent concern amongst the college-age population.

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"

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.

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

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.

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/#!/

Published Nature Reviews Microbiology, January 2023 Full article available: https://www.nature.com/articles/s41579-022-00846-2#Fig1 Abstract: Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily. Biomedical research has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness; further, similarities with other viral-onset illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome have laid the groundwork for research in the field. In this Review, we explore the current literature and highlight key findings, the overlap with other conditions, the variable onset of symptoms, long COVID in children and the impact of vaccinations. Although these key findings are critical to understanding long COVID, current diagnostic and treatment options are insufficient, and clinical trials must be prioritized that address leading hypotheses. Additionally, to strengthen long COVID research, future studies must account for biases and SARS-CoV-2 testing issues, build on viral-onset research, be inclusive of marginalized populations and meaningfully engage patients throughout the research process. Contributors: Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel & Eric J. Topol

Published in Immunologic Research, April 2021 Study conducted by Dr. Svetlana Blitshteyn and Sera Whitelaw Full article available: https://link.springer.com/article/10.1007/s12026-021-09185-5#Abs1 Objective: To describe clinical features, diagnostic findings, treatments, and outcomes in patients with new-onset postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders following SARS-CoV-2 infection (COVID-19). Methods: We retrospectively reviewed medical records for patients who presented with persistent neurologic and cardiovascular complaints between April and December 2020 following COVID-19 infection.

Video presentation by Dr. Svetlana Blitshteyn Recorded October 2021

Published December 2022, Nature Cardiovascular Research Full article: https://www.nature.com/articles/s44161-022-00180-z Introduction: Postural orthostatic tachycardia syndrome (POTS) can follow COVID-19 as part of the post-acute sequelae of SARS-CoV-2 infection, but it can also develop after COVID-19 vaccination. A new study shows that the rate of new-onset POTS diagnoses is slightly increased after COVID-19 vaccination, but is five times lower than the rate of POTS diagnoses after SARS-CoV-2 infection. Contributors: Svetlana Blitshteyn & Artur Fedorowski

Published December 2022, Nature Cardiovascular Research Full article available: https://www.nature.com/articles/s44161-022-00177-8 ABSTRACT: Postural orthostatic tachycardia syndrome (POTS) was previously described after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection; however, limited data are available on the relation of POTS with Coronavirus Disease 2019 (COVID-19) vaccination. Here we show, in a cohort of 284,592 COVID-19-vaccinated individuals, using a sequence–symmetry analysis, that the odds of POTS are higher 90 days after vaccine exposure than 90 days before exposure; we also show that the odds for POTS are higher than referent conventional primary care diagnoses but lower than the odds of new POTS diagnosis after SARS-CoV-2 infection. Our results identify a possible association between COVID-19 vaccination and incidence of POTS. Notwithstanding the probable low incidence of POTS after COVID-19 vaccination, particularly when compared to SARS-Cov-2 post-infection odds, which were five times higher, our results suggest that further studies are needed to investigate the incidence and etiology of POTS occurring after COVID-19 vaccination. Contributors: Alan C. Kwan, Joseph E. Ebinger, Janet Wei, Catherine N. Le, Jillian R. Oft, Rachel Zabner, Debbie Teodorescu, Patrick G. Botting, Jesse Navarrette, David Ouyang, Matthew Driver, Brian Claggett, Brittany N. Weber, Peng-Sheng Chen & Susan Cheng