Abstract Dysautonomia is a condition of autonomic dysfunction. It can impact individuals of any age, race, ethnicity, or sex. Although dysautonomia is being investigated, there is still a lot that remains unknown about the condition and its exact parameters. Dysautonomia is divided into two groups of primary dysautonomias and secondary dysautonomias. Although symptoms will be different for every patient, there are a handful of symptoms that most patients have in common. The outlook for most dysautonomia patients is good, even though there are some conditions which can prove fatal. The exact lifestyle changes that each patient will need to manage their condition(s) vary, but there are a few common lifestyle changes which are suggested for most autonomic disorders.
Introduction
Dysautonomia. Many people are not familiar with this condition and the ones who are are often left searching for more information. Dysautonomia is a term that has only recently begun to be used and accepted within the medical community and among patients. But what exactly does dysautonomia mean? Medical words such as this are broken down into components to allow for quick communication among healthcare professionals about what each term means. For example, if you were to break down the word “cardiac” into its medical terminology components, you would have the components “cardi/” and “-ac”. “Cardi/” means “heart” and “-ac” means “pertaining to”. Looking at the word “cardiac” in its medical terminology components would give you the sentence “pertaining to the heart” and that is exactly what cardiac means. Now, if you were to break down the word “dysautonomia” into its medical terminology components you would essentially have the sentence “a condition of autonomic dysfunction.” This describes exactly what dysautonomia is.
Dysautonomia refers to a group of conditions which cause dysfunction of the autonomic nervous system. The autonomic nervous system (ANS) is a branch of the body’s peripheral nervous system. The ANS further branches into the sympathetic and parasympathetic nervous systems which control the “fight or flight” and “rest and digest” body functions. The sympathetic nervous system controls the fight or flight response and releases chemical messengers to prepare the body to fight off danger or participate in a strenuous or stressful activity. Similarly, the parasympathetic nervous system controls the body's rest and digest functions by releasing chemical messengers to relax the body and enable things like sleep and digestion. When you put these things together and observe the functions of the ANS as a whole, it is observed that the autonomic nervous system regulates all of the body’s unconscious activities. Unconscious body activities are the ones that do not need to be thought about to perform such as breathing, heart beat, digestion, and sexual response (1). When a patient develops a form of Dysautonomia, one or more of these body functions do not properly function. These Dysautonomias are broken down into the two main categories: primary and secondary.
Primary Vs. Secondary Dysautonomia
Primary and secondary dysautonomia are both types of dysautonomia, but they have different origins. Primary dysautonomias are autonomic conditions that develop as a result of degenerative diseases or genetics. Secondary dysautonomia occurs as the result of a secondary condition or an injury (2). Since dysautonomia has only recently begun to be researched in depth, there are still a lot of mysteries around what the exact parameters of this set of conditions are. Many different conditions present with elements of autonomic dysfunction, but that does not necessarily make them all true dysautonomias. That being said, there still seems to be a lot of confusion within the medical community about what truly counts as a dysautonomia. Conditions such as fibromyalgia are commonly accepted as dysautonomias by the dysautonomia community and may even be accepted as a dysautonomia by doctors, but as of 2020 they are not listed as being officially classified as a dysautonomia (7). The primary dysautonomias are generally considered to be:
Postural Orthostatic Tachycardia Syndrome (POTS)
Neurocardiogenic Syncope (NCS)
Multiple System Atrophy (MSA)
Familial Dysautonomia (FD)
Pure Autonomic Failure
Most sources will list the primary dysautonomias the same because as it is there are only a few of them that exist and they all typically stem from a specific source or sources, however, secondary dysautonomias are more complicated. There are many conditions that present signs of dysautonomia and autonomic dysfunction, but as of 2020 there are only a handful of conditions that are officially listed as causing secondary dysautonomias and these conditions include:
Diabetes.
Ehlers-Danlos syndrome.
Muscular sclerosis.
Rheumatoid arthritis.
Lupus.
Parkinson’s disease.
Sjogren's syndrome.
Celiac disease.
Sarcoidosis.
Chiari malformation.
Amyloidosis.
Charcot-Marie-Tooth disease.
Guillain-Barre syndrome.
Lambert-Eaton syndrome.
Vitamin B and E deficiencies
Human immunodeficiency virus (HIV).
Lyme disease.
Crohn’s disease, ulcerative colitis.
These are just a few of the dysautonomias that are thought to exist though. For example, Fibromyalgia and Interstitial Cystitis are also commonly considered to be dysautonomias even though they are not officially listed as being an autonomic disorder. What does this mean for patients? Unfortunately, it means that there is still a great deal to learn about dysautonomia and autonomic disorders. Just because a condition a patient is experiencing is not technically considered to be a dysautonomia, does not necessarily mean that it isn’t. Patients and medical professionals must remain open to the possibility of many different conditions being or causing autonomic disorders. Until dysautonomias are better understood scientifically, many patients and medical professionals will continue to rely on using symptoms to diagnose autonomic disorders.
Common Symptoms of Dysautonomia
Dysautonomia is not a one size fits all diagnosis. Dysautonomia ranges from mild to severe and can get worse over time (more on that later). For every patient there are a vast number of symptoms that may or may not occur or can occur later on even if the symptom(s) was not present to begin with. Even with this vast array of variables, there are a handful of symptoms that most dysautonomia patients experience which healthcare providers may use to diagnose autonomic disorders (2):
Shortness of breath
Balance problems
Light/noise sensitivity
Low blood sugar
GI disturbances, vomiting, nausea
Large swings in heart rate or blood pressure
Forgetfulness and confusion (commonly called “brain fog”)
Sleeping problems
Incontinence and frequent urination
Exercise intolerance
Fatigue
Inability to regulate body temperature
Migraines and/or frequent headaches
Dizziness and/or lightheadedness
Sexual dysfunction
Chronic pain
Sweating too much or not at all
You may experience all or none of these symptoms if you have dysautonomia or think you may have dysautonomia, but these symptoms are common among many dysautonomia patients.
Who Develops Dysautonomia?
Just like dysautonomia is not a one size fits all condition, dysautonomia patients are not a one size fits all group. Dysautonomia can impact anyone of any age, race, sex, or ethnicity. You can develop dysautonomia even if you are perfectly healthy otherwise, or you can develop it if you already have other conditions. Dysautonomia impacts men and women equally, but certain conditions will impact one sex more frequently than the other (2). For example, POTS and fibromyalgia are typically seen in women more than men.
What is the Outlook for Dysautonomia Patients?
When assessing what the outlook is for dysautonomia patients, it depends in large part what condition(s) the patient has and what the patient's lifestyle and treatment decisions are. Many autonomic disorders are not technically progressive, but the symptoms will compound on one another over time if proper treatment strategies and lifestyle changes are not implemented properly. For example, POTS is not technically a progressive disorder, but if POTS patients do not properly manage their stress and lifestyle choices, the fatigue, chest pains, heart palpitations, and exercise intolerance will likely continue to get worse until the patient becomes very sick. However, there are also autonomic disorders which have been proven to shorten life expectancy or even to be fatal. In general, most dysautonomia patients will not have their life expectancy altered by their conditions, but they should expect to have to make significant lifestyle changes.
What are Some Generally Suggested Lifestyle Changes for Dysautonomia Patients?
What exactly you should do to improve your quality of life with dysautonomia will vary between patients and between conditions, but in general these are the top lifestyle changes that doctors recommend to dysautonomia patients:
1. Drink more water
Many dysautonomia patients struggle with low blood pressure, headaches, dizziness, and/or dehydration. By staying hydrated, patients can often improve these symptoms. Additionally, if a patient is immunocompromised (especially if they are female), staying hydrated can help to prevent UTIs by frequently flushing out the bladder.
2. Get more rest
The benefits of getting adequate rest are universal, but especially for dysautonomia patients, quality rest can mean the difference between being functional or being beddridden. In order to improve quality of rest, patients are encouraged to practice good sleep hygiene by turning off all screens at least an hour before bed, going to sleep at the same time every night, and limiting stimulants such as caffeine at least 8-12 hours before bed. There are further things that can be done to improve sleep quality and sleep hygiene, but those are the main points.
3. Reduce stress
This point is fairly universal as well, but also incredibly important for dysautonomia patients. Stress reduction will be different for everyone, but for most people things like yoga, meditation, and perhaps therapy can all help. Some dysautonomia patients do end up changing jobs to move themselves to a less stressful environment and this should be considered if the work environment causes significant stress.
4. Eat healthy
Many autonomic conditions are aggravated by systemic inflammation within the body. Systemic inflammation can be reduced by eating a low inflammatory diet. Additionally, many dysautonomia patients have trigger foods which trigger their symptoms. By identifying and removing trigger foods from their diet, many patients can improve their quality of life.
5. Add in light exercise or housework
Although exercising may sound counter intuitive for combating exercise intolerance or chronic pain, many patients find light activity and exercise helpful in preventing deconditioning. By not exercising or doing light activity, many patients make their symptoms worse because their bodies lose more ability to do those activities. For example, if a patient went from walking three miles every day to being on bed rest for their condition and did not exercise for six months, once they began trying to exercise again they would likely only be able to manage a mile or less due to deconditioning of the body. Furthermore, for patients who experience chronic pain and/or arthritis, lack of exercise and activity often leads muscles and joints to become stiff and achy. Gentle exercise such as swimming, yoga, or walking are all helpful in moving muscles and joints to prevent pain.
References
1. Cherry, Kendra. “How the Autonomic Nervous System Regulates Body Functions.” Verywell Mind, Verywell Mind, 18 Apr. 2020, https://www.verywellmind.com/what-is-the-autonomic-nervous-system-2794823#:~:text=The%20autonomic%20nervous%20system%20regulates,flow%2C%20breathing%2C%20and%20digestion.
2. “Dysautonomia: Symptoms, Causes, Types, & How to Live With.” Cleveland Clinic, https://my.clevelandclinic.org/health/diseases/6004-dysautonomia#:~:text=Dysautonomia%20refers%20to%20a%20group,your%20heartbeat%2C%20breathing%20and%20digestion.
3. “Dysautonomia: Symptoms, Types, and Treatment.” Medical News Today, MediLexicon International, https://www.medicalnewstoday.com/articles/76785#causes.
4. “Identifying Dysautonomia.” The Dysautonomia Project, 15 Dec. 2021, https://thedysautonomiaproject.org/identifying-dysautonomia/.
5. Timothy C. Hain, MD. “Dysautonomia.” Dysautonomia, https://dizziness-and-balance.com/disorders/medical/dysautonomia.html.
6. “Types of Autonomic Disorders.” Patient Care at NYU Langone Health, https://nyulangone.org/conditions/autonomic-disorders/types.
7. Vincent, Ann, et al. “Patients with Fibromyalgia Have Significant Autonomic Symptoms but Modest Autonomic Dysfunction.” PM & R : the Journal of Injury, Function, and Rehabilitation, U.S. National Library of Medicine, May 2016, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4766072/.
8. “What Is Dysautonomia?” Dysautonomia International: http://www.dysautonomiainternational.org/page.php?ID=34.
Comments