Neuroscience and Mental Health
What Is Dysautonomia and Why It Matters
Dysautonomia affects over 70 million people globally.
Context
Dysautonomia affects over 70 million people globally. The condition relates to our well-being and physical and mental health.
Dysautonomia includes common conditions such as Pure Autonomic Failure, Diabetic Autonomic Neuropathy, Vasovagal Syncope, and Postural Orthostatic Tachycardia Syndrome.
I decided to write this article after a recent situation affecting one of my family members and after reading an inspiring comment from a discerning reader Heather Thompson who suffered from dysautonomia. Heather left an informing message on the attached piece close to my heart.
Heather’s daughter also has this condition, dysautonomia. You can read the remarkable story of Heather at this link: Today, I Claim the Powerful Woman I Am — Before & After the Accident that Changed my Life.
My purpose is to create awareness of this severe and common condition by leveraging worldwide campaigns through articles, research papers, and reports from patients on social media and local governments.
October is dysautonomia awareness month which might inspire us to collaborate globally. This month brings an opportunity to spread the word for empowering people suffering from this condition.
What is Dysautonomia?
Our autonomic nervous system regulates involuntary physiologic processes such as heart rate, blood pressure, digestion, sexual arousal, and respiration. It includes three components known as sympathetic, parasympathetic, and enteric. Those components play different roles in our physiology and mental health.
Dysautonomia refers to a cluster of medical conditions caused by issues with the autonomic nervous system. This condition can be acute, progressive, or chronic. Dysautonomia also relates to degenerative neurological diseases such as Parkinson’s disease and Alzheimer’s disease.
National Institute of Neurological Disorders and Stroke (NINDS) compiled valuable resources for practitioners and patients. In addition, NINDS supports and researches dysautonomia. The purpose of NINDS’s research is to discover ways to diagnose, treat, and prevent disorders.
According to NINDS, we don’t have a cure for dysautonomia yet. However, some treatments are available for its secondary form. These treatments are symptomatic and supportive. For example, low blood pressure is treated with fludrocortisone and midodrine medication and a diet high in salt.
There are many clinical trials in the US and several other countries investigating dysautonomia. You can access these trials and find more information about them at this link. There are also some papers providing some interesting perspectives.
A Condensed Review of Dysautonomia on Medical Literature
When I checked the medical databases, I came across over 15,000 papers related to dysautonomia studies. In this section, I introduce a few recent studies to give you an idea of the nature of these clusters of conditions.
This recent study points out that “increasing numbers of COVID-19 patients continue to experience symptoms months after recovering from mild cases of COVID-19. Amongst these symptoms, several are related to neurological manifestations, including fatigue, anosmia, hypogeusia, headaches, and hypoxia. However, the involvement of the autonomic nervous system, expressed by dysautonomia, which can aggregate all these neurological symptoms, has not been prominently reported. Therefore, the study hypothesizes that “dysautonomia could occur in secondary COVID-19 infection, also referred to as “long COVID” infection.”
As mentioned in this paper, “Alzheimer’s disease is the most common neurodegenerative disorder, and its prevalence increases with age. Although there is a large amount of scientific literature focusing on Alzheimer’s disease cardinal cognitive features, autonomic nervous system dysfunction remains understudied despite being common in the elderly.” This study reviewed the evidence for autonomic nervous system involvement in Alzheimer’s disease. Researchers identified four major potential causes for dysautonomia in Alzheimer’s disease.
This study investigated Guillain-Barré syndrome (GBS) by assessing the spectrum and predictors of dysautonomia and its impact on functional outcomes. The study concluded that “dysautonomia in GBS is a manifestation of more severe involvement of the peripheral nervous system. Accordingly, mortality and functional outcomes are worse. There is a need to investigate if more aggressive treatment is warranted in this category of GBS.”
This paper summarizes “the evidence regarding the role of autoimmunity in four syndromes including chronic fatigue, postural orthostatic tachycardia, complex regional pain, and silicone implant incompatibility syndromes.” According to the paper, “these syndromes could be incorporated in a new concept of autoimmune neurosensory dysautonomia with the common denominators of autoantibodies against G-protein coupled receptors and small fiber neuropathy.”
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex condition affecting blood flow. As pointed out in this paper, “although diagnostic criteria have been developed characterizing POTS, no single set of criteria is universally accepted. Furthermore, there are gaps in the present criteria used to identify individuals who have this condition. The reproducibility of the physiological findings, the relationship of symptoms to physiological findings, the presence of symptoms alone without any physiological findings and the response to various interventions confuse rather than clarify this condition.” So, the study attempts to address “critical issues regarding the pathophysiology and diagnosis of POTS.”
Dysautonomia Awareness Month
October is dysautonomia awareness month. Dysautonomia International launched the first Dysautonomia Awareness Month campaign in October 2012. Since then, many people have participated in collaborative activities.
These activities aim to reduce diagnostic delays, improve resources, create compassion for patients in communities, and increase support for research funds.
You might create awareness via social media. For example, you can post your stories, articles, or resources you find related to this condition. There are common hashtags on social media such as #Dysautonomia #Pots #31DaysofDys #DysautonomiaAwarenessMonth that you can use in your tweets.
You can share your personal experience, family members’, friends’, and colleagues’ experiences on social media. You can also take photos and email them to dysautonomiainternational.org. Your input might contribute to further research.
Support Organizations for Dysautonomia
Here is a list of organizations supporting dysautonomia.
Conclusions
Dysautonomia is a complex autonomic nervous system condition. Millions of people suffer from this condition.
Recent patient reports and scientific studies indicate that neurological implications of the Covid-19 virus, especially excessive cytokines, can also have an impact on autonomic nervous system conditions such as dysautonomia.
Raising awareness about dysautonomia can help patients get diagnosed promptly. We know that many dysautonomia patients suffer from undiagnosed and even misdiagnosed due to a lack of awareness of the condition.
Here is a sample letter from Dysautonomia International that you can share with your local government and request support. Let’s take this opportunity of awareness month for dysautonomia and spread the word to empower people suffering from this condition.
If you or your loved ones suffer from dysautonomia, please leave a comment on this article.
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