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Autoimmune Basis for Postural Tachycardia Syndrome
Hongliang Li, MD, PhD; Xichun Yu, MD; Campbell Liles, BS; Muneer Khan, MD; Megan Vanderlinde‐Wood, MD; Allison Galloway, MD; Caitlin Zillner, BS; Alexandria Benbrook, BS; Sean Reim, BS; Daniel Collier, BS; Michael A. Hill, PhD; Satish R. Raj, MD; Luis E. Okamoto, MD; Madeleine W. Cunningham, PhD; Christopher E. Aston, PhD; David C. Kem, MD
Abstract
Background Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiological role in POTS. We tested the hypothesis that they harbor functional autoantibodies to adrenergic receptors (AR).
Methods and Results Fourteen POTS patients (7 each from 2 institutions) and 10 healthy subjects were examined for α1AR autoantibody‐mediated contractility using a perfused rat cremaster arteriole assay. A receptor‐transfected cell‐based assay was used to detect the presence of β1AR and β2AR autoantibodies. Data were normalized and expressed as a percentage of baseline. The sera of all 14 POTS patients demonstrated significant arteriolar contractile activity (69±3% compared to 91±1% of baseline for healthy controls, P<0.001) when coexisting β2AR dilative activity was blocked; and this was suppressed by α1AR blockade with prazosin. POTS sera acted as a partial α1AR antagonist significantly shifting phenylephrine contractility curves to the right. All POTS sera increased β1AR activation (130±3% of baseline, P<0.01) and a subset had increased β2AR activity versus healthy subjects. POTS sera shifted isoproterenol cAMP response curves to the left, consistent with enhanced β1AR and β2AR agonist activity. Autoantibody‐positive POTS sera demonstrated specific binding to β1AR, β2AR, and α1AR in transfected cells.
Conclusions POTS patients have elevated α1AR autoantibodies exerting a partial peripheral antagonist effect resulting in a compensatory sympathoneural activation of α1AR for vasoconstriction and concurrent βAR‐mediated tachycardia. Coexisting β1AR and β2AR agonistic autoantibodies facilitate this tachycardia. These findings may explain the increased standing plasma norepinephrine and excessive tachycardia observed in many POTS patients.
Read the full research article here. 
 https://www.ahajournals.org/doi/full/10.1161/jaha.113.000755?sid=2a92ae76-d6fc-491c-9e79-43190d584090&amp;#sec-5
edriscoll
Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.
The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.
Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about Postural Orthostatic Tachycardia Syndrome, click on the links under the POTS category in the Information Resources section of the navigation bar.
 
edriscoll
All of Us Research Program - Champion Partnership.  The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S.  The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same?
Why is that important to dysautonomia patients?  Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia?  Is it a primary disorder or secondary to MS or another illness?  Are you a man or a woman? What age are you? All of these things impact the way dysautonomia effects us and how we are treated.  Yet, most medical treatments are based on the average response the average amount of people have to the average amount of symptoms.  Precision medicine seeks to change that by having enough data stored to allow physicians and researchers to gather very specific information from people with very specific criteria. So, if a doctor is treating a man in his 70's with dysautonomia as a secondary illness to Parkinson's disease, the treatment plan won't be based on data derived from a study that was collected from 25 - 35 y.o. women with POTS contracted after flu, mono, and other viral illnesses.  
To join All of Us and to find out more about the program, please visit their site https://www.joinallofus.org/en  or contact DINET at webmaster@dinet.org  if you have questions about DINET's involvement. 
All of Us Thank You for Champions_DINET.pdf
edriscoll
We welcome your letters to DINET's Medical Advisors.  Please be aware that the information provided is not meant to be a diagnosis or medical advice.  It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org 
Q:   Is there any connection between autonomic dysfunction occurring after the gallbladder is removed.  I’ve noticed at several of my support groups that there are a number of young people who have had this procedure performed and then developed dysautonomia following it.   
Submitted by Michael W, Facebook Follower
A:   I agree! that is a very astute observation!
I have also seen it.  I don’t have a good explanation but I think the delayed gallbladder emptying on Hida scan is probably related with joint hypermobility spectrum (similar to delayed gastric emptying) I am not convinced that biliary dyskinesia commonly reported essentially means a pathology.  These are my personal observations for the last several years. Only 3 days ago I asked my students to take it up as a research project. Hope to get it published eventually. My answer may not be supported by peer-reviewed research.
Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas
Q:  I have been diagnosed with POTS and autonomic dysfunction and recently IBS.  My question is since gastric issues are common for people with dysautonomia, are disorders like IBS, colitis, etc just symptoms of dysautonomia or are they separate illnesses that develop because of dysautonomia?  Thank you for your concern. 
Submitted by Cathy, DINET member
A:   The short answer is that it is not known and likely variable in different patients. Patients can absolutely have colitis of various causes that have nothing to do with autonomic dysfunction. For example, there is no reason why someone with POTS cannot also be unlucky enough to have ulcerative colitis. I do suspect, however, that in some patients that have gastric emptying problems, that there may be a link. At this point in time, the treatments are largely symptomatic. Hopefully, that will change over time as our understanding of the mechanisms of illness improves.
Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Q:    When I was first diagnosed with POTS, I had syncope or presyncope episodes 5 or more times per day.  After working with a cardiac rehab program prescribed by my doctor, I have been able to reduce my episodes to 2 - 3 per week. They taught me all about hydration, breathing from the diaphragm and learning the warning signs and not to panic when I feel an episode coming on.  All of it helped me greatly. I’m wondering if there are any rehab programs, similar to pulmonary or cardiac rehab, for dysautonomia patients to learn how to manage and live better with this illness?
Submitted by Joann, Facebook Follower
A: There are some rehabilitation programs that have adopted a version of the Levine exercise protocol. Locally, the cardiac rehabilitation program has created a "POTS program", and I think that other places do have something similar. However, I do not know of a comprehensive program. The Mayo Clinic does have a Pediatric program that is a multi-disciplinary, intensive 3-week outpatient program that is focussed on improving the functioning of these children (and getting them back into school). Often patients learn how to manage and live better with their illness from other patients, through patient advocacy groups, online groups and sometimes local support groups.  
Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Q:   Can autonomic dysfunction cause skin issues like eczema, heat rashes, psoriasis, etc.?  Thank you,
Submitted by Evelyn, DINET Member
A:   No, autonomic disorders typically do not cause eczema, heat rashes or psoriasis. However, psoriasis and some other skin conditions are autoimmune disorders, and autonomic dysfunction can occur secondary to autoimmune disorders.  Therefore, individuals with autoimmune disorders, which may include skin manifestations, can have co-morbid autonomic disorders due to a shared pathophysiology rooted in autoimmunity.
Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic
Clinical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Science
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Goldstec
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
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edriscoll
Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders.  These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan.  When one of those illnesses is an eating disorder, the complexities can be significantly magnified.
Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows:
"Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning."
The lifetime prevalence estimates for bulimia nervosa and anorexia nervosa in US adults are 1.0% and 0.6%, respectively. [1] Members of the dysautonomia community are most likely some of the people additionally affected by these severe conditions.
In wading through the medical literature on eating disorders and dysautonomia, several parallels emerged. These parallels can be seen in the demographics of the patient population, as well as in the symptoms both disorders can demonstrate.  For instance, both anorexia nervosa [1] and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, are more commonly observed in women and adolescent girls. [2].  Also, anxiety and depression are common in both dysautonomia [3] and eating disorder patients. [1]
Further, POTS and other forms of orthostatic intolerance can cause gastrointestinal symptoms, such as nausea and vomiting and severe POTS may interfere with eating. [4] [5] A POTS patient and an eating disorder patient may both have disrupted eating patterns, but the underlying causes and appropriate treatments are very different. Although I did not find specific evidence in the literature of such symptoms misattributed to eating disorders, it is not uncommon for a misdiagnosis of anxiety or other psychiatric illness attributed to POTS. [5]
There is also evidence that eating disorders, particularly anorexia nervosa, may cause changes in cardiac function, structure, and rhythm. [6] Children with anorexia and bulimia may exhibit abnormally low blood pressure, slowed heart rates, and high heart rate variability. [7] In the abstract to a 2014 article in Clinical Autonomic Research, Takimoto, et al. reported autonomic abnormalities during tilt-table testing in study participants with anorexia nervosa. [8] Similarly, POTS and other forms of dysautonomia, display hallmark symptoms of high heart rates, abnormal rhythms, and erratic blood pressures. [13] And the irregular response of the autonomic nervous system during the tilt table test is one of the most recognized diagnostic criteria used to confirm a POTS diagnosis.
There are conflicting views in the literature about the extent to which cardiac complications explain the fatality rates in anorexia and bulimia and whether such changes are reversible. [7] [9] Further research into these questions is needed, but what is certain is that eating disorders can be dangerous and require serious attention.  While most forms of dysautonomia are chronic illnesses, they are not considered life-threatening on their own; rather, they are seriously life-altering and oft-times debilitating. Dysautonomia also requires serious attention and treatment.
Stewart writes that it is essential to distinguish between eating disorders and POTS, noting that anorexia nervosa can cause “POTS-like” orthostatic intolerance in its early stages and young women referred for treatment for POTS symptoms may be underweight.[8]  The similarities in patient demographics and overlap in symptoms between eating disorders and POTS have the potential to complicate the diagnostic picture further.
Patients can have both conditions, of course, which may present additional diagnostic and treatment challenges. An untreated eating disorder might worsen pre-existing orthostatic intolerance. Since poorly managed orthostatic intolerance can cause limitations in many areas of life, such conditions, if unrecognized, could conceivably pose an additional challenge for eating disorder patients in achieving specific functional goals as part of treatment.
There remains much to learn about both eating disorders and dysautonomia. Both can have a profound and long-lasting impact on a person’s life and health at an important point in that person’s development.  Accurate diagnosis and appropriate treatment are vital.
It is important to note that although the focus of this article was on anorexia, bulimia and largely POTS, there are many other eating disorders and dysautonomias. Further, these conditions can occur in people of any gender and at any stage of life.  If you or someone you know is dealing with an eating disorder or dysautonomia, please consult a qualified medical professional without delay.
Bibliography
[1]
National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058.
[2]
R. Freeman, W. Wieling, F. B. Axelrod, D. G. Benditt, E. Benarroch, I. Biaggioni, W. P. Cheshire, T. Chelimsky, P. Cortelli, C. H. Gibbons, D. S. Goldstein, R. Hainsworth, M. J. Hilz, G. Jacob, H. Kaufmann, J. Jordan, L. A. Lipsitz, B. D. Levine, P. A. Low, C. Mathias, S. R. Raj, D. Robertson, P. Sandroni, I. Schatz, R. Schondorff, J. M. Stewart and J. G. van Dijk, "Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome," Clinical Autonomic Research, no. 12, pp. 69-72, April 2011.
[3]
J. N. Johnson, K. J. Mack, N. L. Kuntz, C. K. Brands, C. J. Porter and P. R. Fischer, "Postural Orthostatic Tachycardia Syndrome: A Clinical Review," Pediatric Neurology, vol. 42, no. 2, pp. 77-85, February 2010.
[4]
S. D. Sullivan, J. Hanauer, P. C. Rowe, D. F. Barron, A. Darbari and M. Oliva-Hemker, "Gastrointestinal Symptoms Associated with Orthostatic Intolerance," Journal of Pediatric Gastroenterology and Nutrition, no. 40, pp. 425-428, April 2005.
[5]
B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008.
[6]
M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016.
[7]
J.-A. Palma, L. Norcliffe-Kaufmann, C. Fuente-Mora, L. Percival, C. L. Spalink and H. Kaufmann, "Disorders of the Autonomic Nervous System: Autonomic Dysfunction in Pediatric Practice," in Swaiman's Pediatric Neurology, 6th Edition ed., Elsevier, 2017, pp. 1173-1183.
[8]
J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013.
[9]
NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page.
[10]
Y. Takimoto, K. Yoshiuchi, T. Ishizawa, Y. Yamamoto and A. Akabayashi, "Autonomic dysfunction responses to head-up tilt in anorexia nervosa [Abstract]," Clinical Autonomic Research, vol. 24, no. 4, pp. 175-181, August 2014.
[11]
K. V. Sachs, B. Harnke, P. S. Mehler and M. J. Krantz, "Cardiovascular complications of anorexia nervosa: A systematic review," International Journal of Eating Disorders, vol. 49, no. 3, pp. 238-248, December 2015.
[12]
American Psychiatric Association, "Feeding and Eating Disorders," in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition ed., https://doi.org/10.1176/appi.books.9780890425596.dsm10, 2013.
 
[13] Grubb, B.P. & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. "Pacing and Clinical Electrophysiology" 22, 798-810
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Goldstec
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
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WinterSown
I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore.
I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40?  If I found acceptance, why am I not enjoying myself?
I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I  even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand.
Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags.  This is unacceptable to me. I want my energy and my life back.
I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs.  Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies.  Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming.
It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden.  I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds.
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Missy M
Age specific tools for managing chronic illness
I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else.
In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness.
There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life.
One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was  to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it.
Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox.
Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness.
I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed.
Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox.
As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.”
In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management.
Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish.
Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups.
A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness.
It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved.
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edriscoll
The term self-care is becoming trendy, which means you may have heard someone talk about it at some point.  What is it though?  Put simply, it’s caring for yourself, just like it sounds.  So many people spend the whole day making sure everyone around them is taken care of while continually bumping their own care down lower and lower on the to-do list.  Essentially, the more time put towards self-care, the longer you can go between burnouts. 
I used to work for the State Police, and under special circumstances, troopers could provide a gas transfer to a citizen.  You see, if the trooper had not made sure that his or her own tank was full first, then they would be completely useless in helping the citizen in need.  To be the very best mom, sister, daughter, wife, employee, and friend, it’s important to take time to fill up your tank too. Otherwise, there is nothing to give to others. 
Besides having more to give to others, there are health benefits too.  Let’s brush up quickly about dysautonomia, which is dysfunction of the autonomic nervous system.  Within the autonomic nervous system are two parts, the parasympathetic nervous system, and the sympathetic nervous system.  Those of us who suffer from different forms of dysautonomia have a broad goal of activating the parasympathetic nervous system in a healthy way. In fact, research suggests that plenty of self-care activities can enable your parasympathetic nervous system (PNS).  Activating your PNS places your body into a more restful and rejuvenating state.  This can strengthen your immune system as well as make healthy strides towards calming the dysfunction of the autonomic nervous system.  Therefore, more self-care, possibly fewer dysautonomia flares, as well as fewer colds and cases of flu interrupting your year. 
Self-care can be difficult at times because it means saying “no.”  It means saying you can’t fit in that other meeting and take on that additional project.  It means you can’t head up every club and run all the fundraisers.  At the end of the day, you need time for your health- physically, emotionally, and spiritually.  This may look different to different people, but it’s important to learn which activities help to refocus you and ground you, and what invigorates you and rejuvenates you. 
Here are a few ideas that might be a good fit for you, depending on your current needs.  As always, check with your doctor before starting new physical activities.
●       Plant a garden and spend time in it.  Get your hands dirty, literally. 
●       Rearrange your furniture.  Your mind will continue to be stimulated until you are used to the new setup. 
●       Learn how to make a budget that works. 
●       Start journaling.
●       Find a book that interests you and then make time to read it. 
●       Learn about your local history. 
●       Revisit an old hobby. 
●       Learn to sew, cross stitch, crochet or quilt. 
●       Tidy up a small space.  Organizing your space can organize your mind. 
●       Play a new board game.
●       Visit a bookstore.
●       Read a magazine.
●       Do a puzzle.
●       Write a poem. 
●       Make achievable daily goals.
●       Create an inspirational collage.
●       Unfollow toxic friends on social media.
●       Try out a new exercise class.
●       Go to bed early.
●       Go for a bike ride.
●       Spend time with your pets.
●       Do something kind for someone else.
●       Bake something for fun and share with a friend.
●       Take a bubble bath.
●       Buy yourself flowers.
●       Visit an antique shop.
●       Try a new hairstyle.
●       Wrap up in a cozy blanket and drink tea.
●       Look at the stars.
●       Light a candle. 
Schedule some time for YOU and try out some of these activities.  Make time for your mind, your body, and your soul.  You deserve it! 
References:
http://www.thelawofattraction.com/self-care-tips/
https://www.developgoodhabits.com/self-care-ideas/
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