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.firstname.lastname@example.org
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