If you haven’t heard of dysautonomia, you aren’t alone. Many outside of the medical community have never heard of the disorder or have only heard it referenced in passing. It is not, in fact, as uncommon as you might think – dysautonomia affects 70 million people worldwide.
In recent years, one of the spotlights on dysautonomia was when Solange Knowles, the younger sister of Beyoncé, announced her diagnosis with the autonomic nervous system condition. Solange had canceled performances previously, citing an undisclosed medical condition as the cause. At the end of 2017, shortly before a scheduled New Year’s Eve performance at the AfroPunk Festival in Johannesburg, Solange shared with her fans that she would once again have to cancel. This time though, she decided to publicly share her struggle with dysautonomia and that her medical team had advised her against the long plane ride and undertaking a demanding performance. When a condition is rare, it can often take a well-known celebrity to bring awareness, recognition, and research funding. Solange’s disclosure helped to get people talking and made many clicks over to their search engine of choice to type in “what is dysautonomia?”
What is Dysautonomia?
Dysautonomia is an umbrella term that covers a whole range of autonomic nerve disorders. The autonomic nervous system (ANS) is responsible for controlling the critical yet involuntary physiological processes that take place continuously in your body. Our autonomic nervous system regulates functions such as our heart rate, blood pressure, respiration, digestion, bladder, etc., all without our knowledge. The underlying cause can vary, but functionally, in people with dysautonomia, the ANS nerves don’t communicate effectively, resulting in a wide variety of problems that vary from person to person. Symptoms can include urinary and bowel incontinence, anhidrosis (the absence of sweating), hypotension (low blood pressure), abnormal heart rate, difficulty swallowing, loss of consciousness, and many others that relate to the body’s automatic regulation.
Traumatic Brain Injury (TBI) and Dysautonomia
The physical trauma of a traumatic brain injury (TBI) can cause temporary or long-lasting dysautonomia. Unfortunately, there is a lack of research around dysautonomia associated with TBIs. The research that does exist seems to suggest that the presentation of dysautonomia with TBIs can often be associated with a more unsatisfactory outcome. However, in taking a step back, you realize that dysautonomia occurs in the most severe cases of TBI, where patients are in a coma or requiring a ventilator. This does not mean that all presentations of dysautonomia for TBI patients indicate a poor outcome because each brain injury is unique as well as its accompanying symptoms.
In 2019, the Journal of Neurosurgery explored the connection between brain injury and dysautonomia. In their conclusion, the researchers stated that,
It is also likely that brain injury alters the fine balance between the sympathetic and parasympathetic arms of the autonomic nervous system, resulting in an imbalance of the homeostatic mechanisms that maintain normal organ system function and their interactions with each other… Autonomic dysregulation can cause changes in cardiac output, disruptions in regional blood flow, alteration in renal clearance, and imbalance in electrolytes that can cause a reciprocal loop of further autonomic dysfunction. However, evidence in the current literature is often contradictory, and hence more translational research is warranted, as the understanding of these relationships and potential therapeutic targets will inevitably improve patient outcomes.”
The bottom line is that there is clear evidence of the brain injury and dysautonomia connection. However, more research is still required to improve the understanding of this disorder, allow for early recognition, and improve treatment options.
What are the symptoms?
Below is a more detailed list of the common symptoms of dysautonomia, but note that this list is not exhaustive:
- Balance problems
- Dizziness and fainting
- Breathing issues
- Low Blood Pressure
- Noise/light sensitivity
- Visual disturbances
- Nausea and vomiting
- Urinary problems
- Difficulty digesting food and GI problems
- Tiredness and body weakness
- Inability to regulate body temperature
- Sluggish pupil reaction
- Exercise intolerance
Diagnosis and Treatment
According to the Mayo Clinic, there are various ways to diagnose dysautonomia, including autonomic function tests, tilt-table test, gastrointestinal tests, quantitative sudomotor axon reflex test, thermoregulatory sweat test, urinalysis, and bladder function (urodynamic) tests, and ultrasound. For more information on diagnosis, we’d encourage you to check out the Patient Care & Health information provided by the Mayo Clinic.
Symptoms with dysautonomia are highly variable; many treatment measures for secondary forms of dysautonomia are targeted to address the underlying condition. If it is a primary form of dysautonomia, treatment focuses upon the specific functions in the body that are being affected. Treatments are often supportive in nature versus curative.
How can Power of Patients help?
Power of Patients can help manage the wide variety of symptoms that can present with Dysautonomia and TBIs in general. Our goal is to empower you with the resources to gather your data and take charge of your treatment. The free Power of Patients Dashboard helps you track symptoms and triggers, providing valuable data towards recovery research to aid millions. Power of Patients has also gathered educational resources on treatment options and includes information on upcoming clinical trials. Sign up today for our free Dashboard, which allows you to streamline your treatment and recovery with contextual data tailored around your specific circumstances.
Author: Meaghan Murphy