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  1. Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious, preteen girl. Read the rest of Isabelle's story in the Feb 2019 edition of Dysautonomia News
  2. Traveling can be an undertaking for anyone, but it is particularly difficult for those of us who are balancing our precarious health and our everyday lives: you could be thinking, “How could I possibly think about travel in addition to everything else?” Travel IS possible with dysautonomia though it can be difficult. However, the rewards of traveling, whether they are exploring a new place or visiting loved ones, can be well worth the struggles. Here are five tips for traveling with dysautonomia: 1. Build in margin. This was the best travel advice I ever received from a stranger on a plane. She told me the key to reducing stress in life was building margin into everything you do. Do you think you need two hours to get through the airport? Schedule two and a half. That margin allows for any unforeseen mishaps (which will certainly happen) and prevents you from rushing. For me, rushing is almost guaranteed to cause a flare, whether it be moving too quickly and getting my heart rate too high, or the stress of rushing causing me to forget something important. 2. Prepare, Prepare, Prepare. For anyone, forgetting something on a trip is annoying but, for us, it can mean the difference between being relatively healthy and really, really sick. Not to mention, we have that pesky little thing called brain fog that can make remembering things tricky. Start packing early and always use some type of checklist that you refer to multiple times. If you travel frequently, keep a core list of items you need, organized by category (e.g.; medications, toiletries, core clothing, assistive devices, etc.), and you may even consider making supplemental lists for specific types of travel (e.g.; summer trip, winter travel, staying with friends/family, etc.). Also, NEVER cross anything off your list until it is permanently in your bag. This prevents major mishaps such as taking your medications out of your suitcase the night before and forgetting to put them back in your bag because they were already crossed off your list. Next, *try* to pack minimally. This does not mean leaving your essential medical devices and medications at home—we know that it may be impossible to pack light with these items. This does mean, however, that if you are going to be lugging a lot of medical items around you may thank yourself if you leave that cute, but impractical outfit at home. Try to pack things that are multifunctional (e.g., comfortable shoes that can be dressed up or down) to limit the physical and mental stress of keeping track of (and carrying) so many things! 3. Know that air travel IS possible. I used to love the thrill of flying and the energy of the airport. I still do, as long as I am realistic about how I navigate these situations with dysautonomia. Start preparing the week before you fly. Prioritize light, daily stretching to prevent muscle cramps. Drink even more water than usual two days before the flight. Make sure you have everything you need; for me, this includes high-quality compression socks, comfortable clothes, my medication (always, always in my carry-on!), a vomit bag, a neck pillow, two empty water bottles (refill stations are in most airports), salty snacks, a packet of electrolyte mix, and a tube of Icy Hot. Your list may be different, but put some thought into it ahead of time. Also, the flight will likely be uncomfortable, so balance that by treating yourself! Save a book you’ve been wanting to read/listen to for the flight. Download your favorite TV show to binge watch. Bring snacks you love. Next, it never hurts to ask. Call ahead and arrange a wheelchair or trolley escort through the airport, if needed. If meals are being served on the plane, call the airline to be sure your dietary restrictions are on file; they will bring you meals to accommodate your restrictions, and you will get served first! If your suitcase is overweight, or you have extra bags, due to medical devices remind your gate agent that they cannot charge you baggage fees for these items. Request a hand security check if removing your medical devices is a hassle. Make your airline aware of your condition (even if it is invisible), and request to board with those who need additional assistance. Sometimes, upon request, the airline may even give you the bulk seat which has extra legroom, for no additional charge. It doesn’t always work, but it is worth a try! It is always helpful to have documentation of your condition with you, in case anyone questions you. Lastly, try not to be embarrassed about asking for needed accommodations. Admittedly, I do sometimes get shy about asking for help, but I am always so grateful I chose not to stress my body more than it needed to be. 4. Plan for arrival fatigue. Travel is tough. You will be tired when you arrive at your destination. If you flew to your destination, have a plan in place to get to your accommodations painlessly—call ahead to arrange a pick-up car or shuttle, check to make sure Uber/Lyft regularly frequents that airport, or have a loved one pick you up. Save walking and exploring public transportation for later in your trip when you feel more rested. Plan for a travel flare, but hope it never comes. Try to limit your activity on your first day of arrival. Also, be easy on yourself if you need to take one, two, even a few days of your trip to rest. I used to get angry with myself when I traveled to an amazing location and spent half the time in bed and, ultimately, pushed myself too hard. I’ve changed that mentality. If I need to rest for three days, so be it, even if it means that I only get one day of truly enjoying my trip. To me, one day of actual enjoyment is far better than five days of pushing myself to the point of distress. Jetlag can be a whole different beast for those of us with dysautonomia when changing time zones. Do your best to follow the golden rule of jetlag – try not to sleep during the day. That being said, those who created the golden rule probably never felt the crippling fatigue of dysautonomia. If your body is forcing sleep upon you that you can no longer fight, do not stress. Sleep. You may take longer to adjust to the new time zone, but it is worth it to keep yourself as healthy as possible. You will probably wake up at strange hours of the night. Have a good book on the ready to distract yourself because stress will only keep you awake. You will adjust eventually. 5. Choose accommodations wisely. I am all for getting local experiences, but accommodations may not be the way to do that when you have dysautonomia. The benefits of a chain hotel include standardized rooms and knowing what to expect. They may have transportation to and from the airport, you can control the temperature of your room, you will know the quality of the beds and linens, you will have a private bathroom, and you can request an accessible room. Upon asking, you can usually get needed items like mini refrigerators, extra pillows, and microwaves. Staying in a local hotel or Airbnb is not impossible, but you should do your research ahead of time to make sure you will be comfortable. It can be trickier to navigate staying with family, friends, or renting a house with a group of people. You will probably have less control over access to food, the comfort of your bed, noise, lighting, and temperature. You may also feel torn between engaging with your companions and retreating for much-needed rest. In these situations, do your best to educate your loved ones early and often about dysautonomia. You can even have an advocate help you do this if you are uncomfortable. That being said, many loved ones have the best intentions but still may not fully understand your needs so you may need to make extra preparations. If you are driving, bring your own bedding that you know is comfortable. I have come to love my sleeping headphones; a headband I can pull over my eyes with soft headphones built in to drown out noise. If food is a concern, offer to grocery shop for the hosts as a way of thanking them, which also ensures you have some foods that you can eat. Or, cook dinner one night – sharing a favorite recipe is a great bonding experience, AND you can cook something that works with your body. If you are renting a group house, offer to be the person that manages the booking situation to find a house that meets your needs. In doing so, you can be sure you won’t be stuck on a rickety pull-out couch or sharing a bathroom with eight people. Most of all, be honest with your loved ones. Most people will appreciate your honesty, and will not view you as difficult or high-maintenance. I have found that when my needs aren’t considered in group travel situations, it is usually the result of a misunderstanding, which can be rectified over time with communication and education. While each of these tips could be an article in their own (perhaps, they will be in the future!), we hope these brief tips provide you with some ideas—and confidence—in planning your next adventure. Return to 02/2019 Table of Contents
  3. Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious, preteen girl. Unfortunately, many of us know this story all too well. Was Isabelle anxious? Maybe. Who wouldn’t be after such an intense health episode with no explanation? In my years of writing the Meet the Member column, I’ve talked with so many women who have conveyed that being dismissed as anxious, dramatic, and overly sensitive have been, by far, the most difficult parts of their dysautonomia journeys. I, too, can relate. Isabelle certainly experienced this dismissal throughout her diagnostic process that took about a year and a half. She visited gastroenterologists, cardiologists and made several trips to the emergency department, but received no explanation for her sustained symptoms. Yet, she knew something was wrong; she went from a top tennis player to not being able to walk a mile in gym class. Though many of Isabelle’s physicians did not take her debilitating symptoms seriously, she ultimately found an insightful doctor who thought outside the box to give her answers. Her now primary care doctor found a connection between Isabelle’s experiences and his time in the Army when he had witnessed several servicemen never return to full health after severe heatstroke. She was ultimately diagnosed with dysautonomia which provided her the validation, and knowledge, to move forward. Her diagnosis was bittersweet; it gave her answers, but it also made a full-time tennis career feel unattainable. Her mom bought her a camera in an effort to help Isabelle forge a new path, and she immediately fell in love with photography. Just a few years ago, she was selected to participate in a National Geographic Student Expedition in Yellowstone National Park. This was a life-changing experience; she solidified her love for photography, she was able to learn from some of the best professionals in the field, and she made lasting friendships. Now, at age twenty-one, she is a freelance photographer for the Arkansas Democrat Gazette and works for a couple of music publications doing concert photography. She is also currently applying to internships and hoping to go to college in the near future. (*editor's note: Photo at right an example of Isabelle's work) Isabelle’s strength, ambition, and maturity were evident during this interview. She has clearly made the best of her life with dysautonomia and credits it with helping her discover her passion for photography. However, her difficult diagnostic experiences—particularly being dismissed as an anxious, preteen girl—have certainly contributed to her identity as a young woman. She discussed some of the issues with the ingrained gender discrimination in some of the healthcare systems. Many women with dysautonomia, like Isabelle, wonder if their initial symptoms would have been dismissed so readily if they were men. She also talked about the insight of her primary care physician who was able to draw a connection between the symptoms of a young, female athlete and full-grown, military servicemen. The dichotomy between supportive and unsupportive physicians is an important issue in our dysautonomia community. It makes us realize that we need to recognize, more often, the doctors, like Isabelle’s primary care doctor, who have been tremendous allies to all of us. Without their insight, research, and help with advocacy many of us would remain undiagnosed in a healthcare system where some professionals are trained that there is a straightforward answer for our complex, and sometimes elusive, collections of symptoms. We commend and thank these medical professionals, and we will continue to do our part in sharing accurate information about dysautonomia. Hopefully, these continued partnerships between the advocacy and medical communities will minimize diagnoses of female hysteria so that ambitious women like Isabelle can move forward to make their mark in the world. Return to 02/2019 Table of Contents
  4. At first glance, Caryn is living an enviable kind of life: she is 56 years old, living in South Florida and is the Director of Imaging Services for a national radiology group. In the short time, I spent talking with Caryn, her positive disposition and tremendous strength were evident through all that she said. So, while she certainly seems to be living a great life, I suspect that not many people know how hard Caryn has fought to build this life or how much she continues to overcome to achieve it. At age fifty, she was diagnosed with neurocardiogenic syncope (NCS) after a harrowing medical battle that involved misdiagnosis, emergency surgery and nearly losing her life. Even more, all of this happened not long after she overcame thyroid cancer. Caryn’s syncope began in childhood. She regularly passed out at doctors’ offices and during anxiety-evoking experiences. She was diagnosed with epilepsy at age sixteen and was given anti-seizure medications. She continued for nearly three decades believing she had epilepsy. Then, in 2003, she was diagnosed with thyroid cancer. Her thyroid was removed, but cancer returned two years later. She recovered after a second major surgery and months of rehabilitation. By age 45, her cancer was in remission and she thought her battle with illness was mostly over. However, she discovered she was originally misdiagnosed with epilepsy during a routine neurology visit, and the physician proceeded to help her off the anti-seizure medications. She did not experience any seizures after that, though her syncope-related symptoms that began in childhood remained. In 2011, a particularly difficult syncope episode caused her heart to stop, which was followed by several more similar experiences. She had a pacemaker surgically implanted to stabilize her heart rate, but she felt severely ill shortly after the surgery. When she returned to the hospital, she found she had contracted MRSA accompanied by pulmonary embolisms, an infection in her heart and fluid in her lungs. Thankfully, she recovered after months of medical care and rehabilitation, but not without difficulties. She sensed the panic in the eyes of her physicians and family members during her battle with MRSA, and she knew she was near death. Even as she recovered, she feared losing her job as an MRI technician because she could not be around the equipment with a pacemaker. Her story began to turn when she saw a cardiologist who was able to diagnose her with NCS at the end of her first appointment. As he handed her a pamphlet about the condition, she could not believe that her extensive medical journey was culminating in a diagnosis that was “just that simple.” Caryn’s diagnosis was empowering because she finally had the knowledge to help herself cope. She has learned to prioritize activities that are important to her, like exercise. She knows she will be tired after workouts, and she now trains based on her heart rate. She did lose her job as an MRI technician, but this led her to build new dreams and now has a career she loves. She knows to talk herself through the particularly difficult moments and listens to her body when she needs to lay flat. Her experience of dysautonomia has taught her to live in the moment, and to use her own voice to take care of her needs. She has also learned to keep a small circle of support around her including family, friends and supportive colleagues. Now, with a diagnosis of NCS and her cancer in complete remission, Caryn reflected on her experiences: “I thought cancer was hard until this hit me.” Cancer is hard. Individuals who experience it are heroes in their own rights. But, Caryn’s comment made me think—what component(s) of her NCS experience made it harder than her cancer experience? Caryn shared that there was always the possibility that her cancer could be cured, that same possibility does not exist for NCS. She has to think about NCS every day, and every day she knows NCS will be with her tomorrow. As I continue to resonate on this point, I see that everyone’s experiences of illness, no matter the origin, are harrowing in their own way. But, one major dissonance I can see between the cancer community and the dysautonomia community is the level of awareness, research and education about the respective diseases. I hope the future brings a cure for cancer just as much as the next person, yet I also see the tremendous strides our society has achieved regarding cancer treatment and prevention over the last several decades. This type of relative success in the cancer community is motivating and inspiring. Perhaps one day, with continued efforts in awareness and education, dysautonomia will be better understood by the medical community and the general public, too. I hope such awareness and education will minimize the misdiagnoses, improper medication treatments and surgical complications experienced by many dysautonomia patients. Until then, we will continue to share the heroic and inspiring stories of individuals, like Caryn, to work toward that goal. From DINET: If you would like to be considered for a future Meet the Member article, please email webmaster@dinet.org Return to Table of Contents
  5. Beyond our small community of patients and supporters, most people have never heard the term “dysautonomia” and, among those who have, it is commonly thought of as a new disease. However, patients have been experiencing the debilitating symptoms of dysautonomia for centuries, if not longer. The condition’s history began with the discovery of the autonomicnervous system around 130-200 AD by Aelius Galen, a Greek physician and philosopher.1 The nervous system was more heavily researched in the 19th century, 2 but arguably remains one of the most poorly understood mechanisms of the human body. The exact origin of the term dysautonomia is unclear, but the history of one subtype, POTS, is relatively well documented. Some researchers believe that POTS was called Soldier’s Heart or Da Costa Syndrome during the American Civil War and World War I. Soldier’s heart was described as a functional disorder of the heart that involved palpitations, fatigue, and breathlessness,3 and symptoms seemed to manifest after infections like typhoid fever, dysentery, and jaundice. Over 36,000 soldiers were discharged from the Civil War due to “heart disease,” many of whom had the above symptoms.4 There is some confusion about the causal factor(s) of Soldier’s Heart; over the years, it has been associated with anxiety, PTSD, mitral valve prolapse and functional heart disorders. Then, in 1993, Dr. Phillip Low and his research team at Mayo Clinic coined the term POTS.5 Since then, awareness of dysautonomia has grown, but much of that awareness is specific to POTS. I am thrilled that, in the past few years, POTS has gained some recognition among medical professionals. It has also reached major media outlets like CNN, Buzzfeed and the New York Times. This publicity has spread awareness about dysautonomia, but it has also led to other subtypes of dysautonomia, such as neurocardiogenic syncope, multiple symptom atrophy, orthostatic intolerance and pure autonomic failure, being misdiagnosed as POTS. Still, others have been told that they do not have dysautonomia because they do not present as a typical POTS patient. Last year, DINET began to focus on one of these seemingly a-typical dysautonomia presentations—older age, more specifically dysautonomia among post-menopausal women. To explain this age-related focus, and my involvement, I will start with my own story; I was diagnosed with POTS in my early twenties and was told by a couple of specialists that I was a textbook case. My tilt-table results were well within the diagnostic criteria; I was a young female and my symptoms surfaced after a couple of severe infections. Even so, it took me five years, several hospital stays, countless diagnostic tests, invasive surgery, and three major research institutions before a full diagnosis was made with the relatively common EDS/POTS combo. In other words, my textbook experience was tough. With this context, I could not help but think, “What is the diagnostic process like for individuals who do not check all the typical boxes?” I started doing some work for DINET while this thought occupied the back of my mind. Through DINET, I have I met several individuals who have had similar views, and tirelessly work to challenge some of the predominate dysautonomia stereotypes: “you have anxiety;” “you just need to be more active;” and “you can’t have dysautonomia, you’re too old.” One of these team members, Trudi Davidoff, focused on the stories of DINET members who had particularly difficult diagnostic processes due to ageism. In other words, their doctors operated on the misinformation that dysautonomia only occurs among those of child-bearing age, likely because POTS is thought to surface in adolescence and young adulthood. Some physicians have even refused to test patients for dysautonomia on the basis of being “too old.” Trudi experienced some ageism in her diagnostic process, and she knew that DINET must acknowledge the subset of patients who are beyond child-bearing age—they too need a platform in the dysautonomia community. Last year, Trudi proposed, developed and administered an informal survey to explore experiences of older patients with dysautonomia. While we have much to learn about this topic, some of the responses have encouraged us to dig deeper: one respondent called for doctors to, “look beyond youth. If an older patient described the same symptoms [as a younger patient] what would you think to test for?” Another respondent described, “I had a doctor tell me, when he couldn't figure out what was wrong, that since I had [already] survived 20 years I was clearly going to [be] fine without a diagnosis.” These initial findings will only grow more relevant as our population ages. By 2030, one in six individuals are projected to be over sixty, globally, and older adults are expected to comprise 25% of the populations in Europe and North America.6 Dysautonomia is not exempt from worldwide trends of aging, as the research shows the association with age-related diseases like diabetes,7,8 Parkinson’s,9,10 and Alzheimer’s Disease.11 Additionally, patients have only been actively diagnosed with dysautonomia since the early 90s; some of them are older and may be getting an accurate diagnosis for the first time while the rest of us will eventually be referred to as “old.” It is our job, as advocates, to think progressively to ensure that the medical community has an understanding of dysautonomia among all ages. This is where my role has surfaced – I am currently a graduate student studying gerontology, or the social, cultural, psychological, and biological aspects of aging. Trudi’s work made me think: how many older adults with dysautonomia are undiagnosed or misdiagnosed? Is there an association between dysautonomia and falls? Among older adults who have Parkinson’s, Alzheimer’s and other related conditions, could proper management of dysautonomia symptoms improve their quality of life? I am ecstatic to work with the DINET team to increase awareness about the association between age and dysautonomia as I fulfill my summer internship requirement for graduate school. Together, we decided to tackle this project through two major avenues: 1) to systematically review, and decipher, the scientific studies regarding age and dysautonomia (spoiler: there are so many more than we ever expected!); and 2) to better understand the experiences of individuals 45 years old and older who have dysautonomia. We are at the beginning of our journey, but one thing we have learned is that just as the perception of dysautonomia has shifted through history, we need to challenge our perceptions of dysautonomia to be inclusive of people of all ages. Our first step is to explore this topic further by hearing about your age-related dysautonomia experiences. By gathering this information, we hope to better inform DINET, the medical community and the public about the variety of needs and experiences of dysautonomia patients of all ages. If you are interested in sharing your story for this purpose, we ask that you fill out a short questionnaire, https://www.surveymonkey.com/r/PRXLZ7L The information that is gathered through this survey will be reported in aggregate on DINET platforms, and findings will be available to DINET members in an easily digestible format (bad pun intended). For more information about the questionnaire, this project or the ways the data will be kept and shared, please contact Chelsea Goldstein at Chelsea.goldstein@dinet.org References 1. Ackerknecht EH. The history of the discovery of the vegatative (autonomic) nervous system. Med Hist. 1974;18(1):1-8. 2. Oakes PC, Fisahn C, Iwanaga J, DiLorenzo D, Oskouian RJ, Tubbs RS. A history of the autonomic nervous system: part II: from Reil to the modern era. Childs Nerv Syst. 2016;32(12):2309-2315. doi:10.1007/s00381-016-3247-3 3. Wood P. Da Costa’s Syndrome (or Effort Syndrome). Br Med J. 1941;1(4195):805-811. 4. Soldier’s Heart or Effort Syndrome · Medicine in World War I. Yale University Library. http://exhibits.library.yale.edu/exhibits/show/wwimedicine/diseases-at-the-battlefield/soldier---s-heart-or-effort-sy. Accessed July 9, 2018. 5. Schondorf R, Low P. Idiopathic postural orthostatic tachycardia syndrome An attenuated form of acute pandysautonomia? Neurology. 1993;43. 6. World Population Ageing. New York: United Nations; 2015:2-3. 7. Karupasamy G, Karthick K. Autonomic dysfunction in cardiovascular system of type 2 diabetic mellitus - A bedside evaluation. Int Arch Integr Med. 2018;5(3):30-33. 8. Costa A, Bosone D, Ramusino MC, et al. Twenty-four-hour blood pressure profile, orthostatic hypotension, and cardiac dysautonomia in elderly type 2 diabetic hypertensive patients. Clin Auton Res. 2016;26(6):433-439. 9. Jain S, Goldstein DS. Cardiovascular dysautonomia in Parkinson disease: From pathophysiology to pathogenesis. Neurobiol Dis. 2012;46(3):572-580. doi:10.1016/j.nbd.2011.10.025 10. Rada D, Seco J, Echevarría E, Tijero B, Abecia LC, Gómez-Esteban JC. Dysautonomia Differentially Influences the Effect of Affective Pain Perception on Quality of Life in Parkinson’s Disease Patients. Park Dis. 2016;2016. doi:10.1155/2016/3067426 11. Zakrzewska-Pniewska B, Gawel M, Szmidt-Salkowska E, Kepczynska K, Nojszewska M. Clinical and Functional Assessment of Dysautonomia and Its Correlation in Alzheimer’s Disease. Am J Alzheimers Dis Dementiasr. 2012;27(8):592-599. doi:10.1177/1533317512459792 Return to Table of Contents
  6. At age thirty-eight, Onva was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), after living with thirty years of undiagnosed symptoms. She remembers fainting as early as first grade, often when standing in the lunch line at school. Her mother took her to several doctors and she went through a myriad of tests. At one point she was mistakenly prescribed anti-seizure medication, and at another time her mother was told that she was just an anxious child. For most of her life, Onva thought of her symptoms as “normal” because her mother, grandmother and several extended family members all suffered from fainting, presyncope, hypermobility and/or gastric complications. However, when her son began to develop similar symptoms, she decided that “This is going to stop with his generation, or at least I am going to find out why it's happening and make life easier for him.” Her online research led her to believe that both she and her son had POTS, and that he needed a tilt table test to be officially diagnosed. Unfortunately, local doctors said he was too young to be tested for dysautonomia. Instead of giving up, she sought a diagnosis for herself with the belief that she could, at least, help him manage his symptoms if she better understood her own. Onva’s diagnostic process is all too familiar to those of us with POTS. She incurred high medical bills, she was put on medications like antidepressants and steroids that exacerbated some of her symptoms. Physicians regularly dismissed her as anxious, as from her childhood. Her turning point came when she found a primary care provider who helped wean her off medications that were ill-suited for her and guided her in seeking a true diagnosis. Once diagnosed, she learned to increase her fluid and salt intake once she was able to attribute her symptoms to POTS. She also understood her extreme heat intolerance, and the source of her life-long fainting, especially when she stood in long lines. Though her grandmother had passed, she was able to understand some of her symptoms too. She figured out why her grandmother had pre-syncope symptoms when standing in the church choir, and how she needed to wake up several hours early to give her body time to acclimate. Most importantly, an official diagnosis enabled her to find an autonomic specialist who was willing to treat both her and her son. Though Onva’s physical abilities are limited by POTS, she feels that these shared experiences of illness have given her tremendous love and gratitude for her close friends and family. She has been able to support her family by working in a salon with an owner who understands she may need sick days, a cool environment and later work hours. Most importantly, her son’s symptoms gave her the strength to be a warrior for her family. In this way, she has helped both herself and her son get proper treatment, and she has brought the gift of “knowing” to all of her family members who have lived with undiagnosed symptoms. This experience has shown her that, together, her family can overcome anything. Onva, as an individual with Dysautonomia, as well as a parent of a child with POTS has strong insight into this disorder. She encourages us to shed the shame we have about our bodies. If we need to sit, or lie down, to alleviate symptoms we should do so, regardless of where we may be. She also encourages parents to communicate openly and often with their children who have chronic illness. This communication, she says, provides children with the confidence to share all of their symptoms. Parents are, then, able to become the strongest possible advocates for their children. Finally, her lifelong experiences with POTS have helped her remember that while doctors are important partners, we know ourselves and our needs best. Return to newsletter
  7. Hello all! We are looking for someone who would like to share his or her experiences with Dysautonomia in our next newsletter. We welcome those living with Dysautonomia, those who are in the process of diagnosis, family members and caregivers. We hope to share your story in an effort to connect our readers through shared experience. The process is simple, and will only take about 30 minutes of your time. Please respond below if interested and share a very quick summary (1-2 sentences) of your experience with Dysautonomia/your current stage in the diagnostic process. Thank you! Chelsea Goldstein Meet the Member Columnist
  8. Kat is a thirty-three year old mother, teacher’s aide and student living in Melbourne, Australia. She has always been a strong, active and independent woman. Kat once walked eight kilometers (4.9 miles) each evening, was very active in her son’s school, and worked as a teacher’s aide until POTS altered her life in an instant. When she first experienced symptoms, Kat contacted her general practitioner. Despite his best efforts, he was unable to properly diagnose her after ruling out migraines, chronic sinusitis and even a spread tooth infection. At thirty-two, her symptoms progressed to the point where she failed to remember her son’s birthday party and felt generally unwell. She visited the hospital for the first time in ten years. The attending physicians ran a myriad of tests and ultimately dismissed her symptoms as anxiety—one even went so far as to comment that she was wasting a hospital bed that could be useful for a truly sick person. She spent over a week in the hospital, where many of the health professionals continued to treat her condescendingly. She was only diagnosed with POTS because one night nurse noticed that her blood pressure dropped upon standing. This discovery led her to take notice of Kat’s cold, blue feet and her tachycardia. Kat was diagnosed with POTS and sent home with some medication. While Kat feels that the medication does help, her life has been dramatically altered by POTS. She can no longer care for her son alone, and has had to significantly cut back on her working hours. Occasionally Kat has to use a walker or wheelchair to run errands and is not able to drive in the afternoons when her symptoms peak. These struggles have made her feel alone, and not able to trust her own body. Kat feels very dependent, too dependent on her loved ones. Most significantly, she has guilt for not being the independent woman she used to be, with the ability to care for her son on her own and remain active in her community. In interviewing Kat, I could empathize with the very sudden and devastating physical limitations POTS has brought to her life. Yet, I could feel her independent, even optimistic spirit shine through her words. Since POTS often confines her to home, she is getting her Bachelors of Primary Education online to maintain engagement on her tough days. Though she feels guilty about the added responsibility POTS has placed on her loved ones, she also talks about how her relationships with them have grown in deep, meaningful ways. She reminds herself to have faith in and patience with one of the most important people in her life—Kat. She realizes how far she has come since her diagnosis, as well as understanding that POTS can be a terrifying, unknown disease. She discusses that she is learning it is okay to be scared. Kat is an inspiration for those of us (which I venture to say is many of us) who feel that we are to blame for our Dysautonomia. We feel guilty for losing our former selves, increasing “burden” on our loved ones and not living up to society’s standards of being productive citizens. Most days we want to return to our old selves, but Kat—through her own practice of self-love—reminds us to appreciate where we are today. Her insight also teaches us that we will not get self-love right every day, and it is okay to feel angry and scared through the daily battles we face. Most importantly, she talks about how many people cannot see our struggles - sometimes not even health care professionals. In a world where we may be dismissed as hypochondriacs, or are told our symptoms arise from “just anxiety,” we are quick to judge and question our own experiences. Kat reminds us “not to let someone else tell you how you feel inside.” A lesson from which we can all draw strength. Return to Newsletter Table of Contents - December 2017
  9. NOTE: If you are a part of a support group or and would like to receive printed materials to share with family, or local medical community, please contact webmaster@dinet.org DINET supports your efforts! You have what? You may have said words like that to your friend or family member when they told you they had a diagnosis. When they began trying to explain things like dysautonomia, autonomic dysfunction, tachycardia and the many other rarely heard words, you may have felt it was all too obscure, too medical to understand. You're right, those are a lot of complex processes and difficult concepts to tie together. Even a large part of the medical community doesn't know about it. If you have a friend or family member who has been diagnosed with an illness falling under the umbrella term "dysautonomia", this guide will hopefully help you understand it and better help support your loved one. What is dysautonomia? Dysautonomia, simply put, refers to a sort of misfiring of the processes in your body that normally function without you needing to think about them. For example, when you go from a dark room to a backyard on a sunny day, you don't make your pupils contract to protect your eyes from the bright light. And you don't have to think about whether your pupils will dilate to allow more light in, when you return to the dark room. For a person with a dysautonomia illness, their pupils may not react automatically. That dysfunction of an automatic system/response in the body is autonomic dysfunction - the core of dysautonomia. Why does my friend/family member have so many different complaints? There can't be that many things wrong with them, can there? The example above doesn't sound too hard to live with maybe, but if you stop and think about all of the functions of the body that we don't have to think about - all of the autonomic functions - we can quickly understand how debilitating this illness can be and how widespread. There are many types of dysautonomia (about 15 types) but they all involve the autonomic nervous system (ANS). The ANS controls: regulating a constant internal temperature regulating breathing patterns keeping blood pressure steady - regardless of body position regulating the heart rate urination/excretion pupil dilation The next time your friend or family member is sweating profusely, has a migraine headache and can't stand up without feeling faint, you will understand better how this can all be happening. What are the symptoms? The symptoms vary depending on the type of dysautonomia, but the most common symptoms are: lightheadedness & fainting tachycardia or fast heart rate chest pains shortness of breath stomach upset exhaustion - far beyond normal tiredness over-sensitivity to temperatures (extreme sweating regardless of temp) "brain fog" - confusion or memory loss that passes What can I do to help? When do I call 911? If in doubt call 911, especially if the person loses consciousness or can not speak or help themselves. It is always better to call than to risk the results of not calling when you should have. But, most cases of fainting or lightheadedness, extreme tachycardia or BP, will resolve itself if the person returns to a lying down position. But that is very dependent on the type of dysautonomia and the other illnesses present. Always call if you are concerned. Understand, support and spread the word! There is nothing that feels better to a person struggling to live through an illness, than to be believed and understood. Too many times patients go through years of being told by the people around them that they are anxious or stressed or they need to push passed their symptoms. When your body feels so out of your control, the last thing that you need to hear is that you should be able to control your symptoms somehow. Once you understand the illness, advocate for your loved one and help them be heard. Remind and support their efforts to be well. Remind them to hydrate. Good hydration with electrolyte products is essential to feeling well. Read more about the effects and pick up a coupon for an electrolyte drink - Banana Bag. Keep them from feeling alone. One of the tough parts of this illness is feeling as though the world is going on without you. On their bad days, instead of trying to push the person to try and do what you can do, try adapting yourself to what they can do. If you invite them to go for a swim and they can't, change the plan to playing cards, listening to music, or just a visit. Your company will go a long way. To learn more about illnesses classified under the dysautonomia umbrella, visit the Information Resources section of our site, or visit MedicalNewsToday for a fantastic article about the different types of dysautonomias. understanding dysautonomia.pdf
  10. Information sheets to help you prepare for your trip to the ER or to a new medical practice. The pdfs of these sheets can be downloaded here Patient Guide - medical trips.pdf for easy printing. Medications - current Name dosage prescribed by to treat what symptom ******************************************************************** NOTES: allergies and notes about reactions to meds should be detailed here. Medical History: Illnesses: (be sure to include when you had the illness, treatment for the illness and whether you completely recovered or are still being treated for this illness) Surgeries: (date, what the surgery treated, was it successful or not? If not, what lasting complications, if any) Specific test ranges or numbers - standard to you. HR range: BP range: Doctor or medical professional most familiar with your illness Name__________________________________ Email Address______________________________________ Phone__________________________
  11. How to prepare for an ER trip or a visit to a new medical practice. Going to the ER or to a new doctor’s office can be a stressful experience. The obvious reason is that we are sick. Sick enough to need an ER or sick enough to need another consult. But the other more difficult reason for the stress, is the reaction we get from the medical professionals we go to for help.. The best way to help your stress level and theirs is to be prepared. Let’s face it, it can’t be easy for the ER team, the doctors and nurses to have a patient in front of them talking about illness and treatments that they know little, if anything, about. So since they can’t prepare, it falls to you. Here are some suggestions to help you get ready in advance. Long before you are in need of new services, create a medical notebook. Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks. It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you. As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction. For example, in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium. This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses. Be sure to include the HR range and BP range that is “normal” for you. And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy. You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you. If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly. Patient Guide - medical trips.pdf
  12. by Chelsea Goldstein Trudi was diagnosed with POTS a few months ago, though she will be turning sixty this year. Some of her physicians were compassionate during her two-year diagnostic process, while others showed lack of understanding, dismissal and even distaste. All of us have similar stories of doctors refusing to believe our state of illness, though Trudi’s experience seemed to be exaggerated by her age, which makes her an atypical patient. Our physicians are trained to look for horses, not zebras. While this adage holds true much of the time, Trudi is a reminder that some patients are zebras, who need zebra-specific treatment. Trudi’s symptoms began with months of gastric distress resulting in a fissure. She was also diagnosed with vertigo multiple times during this period, yet the treatments did not have lasting or curative effect. She knew her condition was serious when she had an automobile accident. While driving in town, she was overwhelmed by the feeling of disassociating from her own body. Her brain knew she needed to turn right, but her nervous system had taken control and continued to veer left. She sideswiped a stopped bus, damaging the side of her vehicle but, thankfully, the accident did not cause any injuries. Over the next 27 months she saw dozens of doctors, including numerous specialists, most of whom had limited knowledge of Dysautonomia. She recounted her myriad of symptoms to all of them—from gastric complications to out-of-body sensations. Many were dismissive, or downright rude. However, one specialist had her do a tilt-table test and, while her results were not overly conclusive, he listened to her entire history. This complete picture of her health enabled him to definitively diagnose her with POTS. These years of appointments exhausted Trudi, and did not result in much physical improvement. However, in her words, she could now “put a name to the beast and learn to tame it.” As an avid gardener, and a professional seed sower, Trudi understands how to manage and maintain organic beings. Just like plants, her POTS cannot be controlled, but she can guide it and give it ideal conditions. She does this by taking advantage of the resources in her hometown of Long Island—all of her medical appointments are a short drive away, and she can use reliable public transportation if needed. She is learning to utilize technology in order access more local resources. She can no longer work in the garden because it triggers her POTS and IBS, and her online company is too demanding for her newly fogged brain. However, she has maintained her passion for all things plants by managing a Facebook Forum on winter sowing seed germination. She also made the difficult choice to be open with her professional partners about her health, who have rallied behind her to identify projects within the limits of her body. She has temporarily hired help for cleaning and yard work. She knows the expenses of these services are worthwhile because she is freed to spend her limited energy on activities that best support her physical and mental vitality. Through it all, she has learned to find joy in things like physical therapy and preparing quick meals for her family. Trudi’s battle with Dysautonomia has been just as harrowing as all of ours, however her developed life experience seems to give her a degree of wisdom about her diagnosis. Throughout her interview, even when discussing difficult moments, Trudi was sure to mention the silver lining of POTS. Her family ‘s help makes her that much more appreciative of her husband and son. Even her dogs have learned to assist her (without training) by pushing her toward the bed when they sense she needs rest, and by acting as supports when she wants to stand. She chooses to see POTS as life changing rather than of life limiting. She uses this positive attitude to focus her energies on advocacy and educating physicians who are unaware of Dysautonomia. Perhaps, through Trudi’s efforts, not all doctors will be as quick to dismiss us as all being horses because sometimes we are zebras and we are all learning to have pride in who we are, with or without Dysautonomia.
  13. Hello all! We are looking for someone who would like to share her experiences with Dysautonomia in our next newsletter. Particularly, we would like to interview an individual who is currently going through (or just went through) the process of getting diagnosed with Dysautonomia. You do not have to be formally diagnosed to be featured in this article. We hope to share your story in an effort to connect our readers through shared experience. The process is simple, and will only take about 30 minutes of your time. Please respond below if interested and share a very quick summary (1-2 sentences) of your experience with Dysautonomia/your current stage in the diagnostic process. Thank you! Chelsea Goldstein Meet the Member Columnist
  14. by Chelsea Goldstein Our featured DINET member, Rachel, invites us to the Southern Hemisphere to learn about living with Autoimmune Autonomic Ganglionopathy (Seronegative) (AAG) in New Zealand. While some current political discourse highlights hard differences between peoples, Dysautonomia makes no such distinctions—often operating invisibly and affecting individuals all over the world. Rachel’s story reminds us that, despite our geographic distance and individual circumstances, the highs and lows brought by Dysautonomia are more universal than we may think. Rachel experienced symptoms of Dysautonomia from a young age that became slightly exacerbated in her teen years, though she always felt they were manageable. In 2008, a virus triggered an autonomic flair that led her to see a cardiologist. This visit began her four-year diagnostic process in which she learned that her fainting spells were truly asystolic episodes. Her cardiologist implanted a pacemaker and diagnosed her with POTS. During the darkest time of her experience with illness, she was told her condition was progressive. A career woman and a relatively new mother—her life came to an unexpected, abrupt halt. She lost her job, her marriage struggled as both her and her husband tried to grasp the uncertain future, friendships dissipated and, in retrospect, she realized her sense of self grew increasingly lost among her overwhelming circumstances. She feared, “dying, or worse ending up in a nursing home” unable to care for her two young children. Despite her insurmountable struggles, Rachel held an instinctual feeling that something about her diagnosis was not quite right. Thus, she self-educated and sought a second opinion from an immunologist who correctly diagnosed her with AAG, as well as provided more clarity, and hope, for her future. Rachel’s symptoms began to slowly improve with a proper diagnosis until her AAG went into complete remission. She feels her current quality of life is surprisingly better than it was before chronic illness. Now, she approaches others with a new sense of empathy and thoughtfulness. For all that Dysautonomia taught her about the universal human experience, part of her still sees it as the “questionable ex” who could return at any time to threaten the life she has rebuilt. I have heard Dysautonomia described in this polarizing manner many times—it is both a great teacher and a source of continual fear. We are thankful for the lessons it has taught us, and for the perspective it has provided us. But, simultaneously, we feel like we have had enough character-building experiences, thanks, and we do not welcome the opportunity to learn from Dysautonomia again. All of us in periods of remission, or relatively good health, are moving forward while remaining keenly aware of our past experiences of illness. Every cough, sore throat, minor headache and moment of fatigue reminds us that it could resurface at any time. I have certainly experienced this fear, which I call Post-traumatic Dysautonomia. It’s often viewed as irrational by our loved ones, but for us, we know how quickly our health can spiral. These sentiments of fear toward an uncertain future are all too real in our current world. One wrong play could set off a chain reaction of negativity, and we feel both responsible for keeping all elements of life, including our health, moving in a positive direction, but also helpless to do so. In these moments of rebuilding, Rachel can be a great model. She teaches us to do what we can to have purpose, but modify to be kind to our bodies. She got creative with her career to allow herself to work from home, which led her to discover a passion for writing. She reserves her emotional energy for the loved ones who continue to build her up—her children, her husband who grew with Rachel during her toughest times and her friends who remained constant sources of support. Most importantly, she has learned to value herself as she is, not how she could be. She found pride in her ability to remain connected to her children through her illness, and in the insight she provides to others through her writing. While that “questionable ex” will occasionally make her fearful, she remembers not to let it steal her freedom, or her right to exist. **** Editor's note: After this article was published we received requests from readers asking for more specific information about Rachel's treatment and remission. Below is Rachel's response to readers. Thanks so much Rachel for sharing with all of us. A note from Rachel: My neuro-immunologist had read the scholarly articles of Doctor Vernino, and seen this presentation ( https://vimeo.com/32792885 ). He also spoke with doctors visiting NZ from Europe who gave their opinions on my case. Given that 50% of AAG patients are seronegative, he thought it was reasonable to try some immune suppression and see if there was any change in my symptoms, with a view to further, more serious immune modulation. A plan of Methylprednisolone infusions across 6 months was made, and potentially, IVIG or Rituximab infusions. The IVIG and Rituximab weren’t needed, as I went into remission on the steroids alone. I experienced dramatic improvement in all symptoms; my pacemaker episodes dropped to zero(!) I no longer endured urinary retention and all that it entails, I had energy again, the ability to move around easily, no dizziness, increased gastric mobility, and best of all, I was able to wean off all the medications I had been taking. All of the symptoms that had plagued me were improving. Throughout the six months of infusions I had a roller coaster kind of response to the steroids, with each month less time relapsing into the symptoms. This strong improvement was a surprise to us all. It is of course possible that I was already entering remission when the infusions began. Sometimes patients with AAG spontaneously enter remission. But I believe it was the infusions because of the timing. Although I don’t understand how steroids alone could have achieved this, I’m sure they did and I am delighted! Please be aware that this is sadly not the silver bullet for everyone. It may not be a suitable treatment for all Dysautonomia sufferers. High dose pulse steroids can cause serious issues in many patients especially those with co-morbidities. Please seek the consultation of your doctors as each Dysautonomia patient has a different presentation. I am always cautious about sharing my story as I have no medical explanation to support how it worked. A satisfactory explanation even escapes my very clever doctor! He assures me that further research will some day shed light on the impact of inflammation at a cellular level on the autonomic ganglia. For now, I am content with the fact that my ganglia were not dead, but somehow impaired. Every single day I am grateful that I get to experience life away from Dysautonomia and enjoy physical freedom again. I wish you all, the answers you need, I hope you find treatment that works for you. Return to newsletter table of contents
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