How Do I Know If I Have Dysautonomia?
If you're reading this, it is likely because you or someone you know is dealing with physical and/or mental symptoms that cannot be explained by their Family Practitioners. Those same well meaning practitioners' diagnosis and treatment plans are often even less helpful. Anyone who has heard the words “I think you’re just depressed” or “maybe you should exercise more” knows how frustrating and disheartening it is to try to find answers about chronic illness.
For many with this condition, the journey is a long road paved with unanswered questions and confusing test results. For those who are lucky, a proper diagnosis arises quickly, and for the first time they hear the word “dysautonomia”.
But for others, a diagnosis is less forthcoming, and many wonder: how do I know if I have dysautonomia, especially if my practitioner hasn’t labeled it in my charts? Thankfully, an increasing number of patients are able to come to a strong conclusion on their own by reviewing their own symptoms, reactions, and test results.
First, let's get an idea of what happens when someone has dysautonomia. Imagine your body is like a complex network of highways with traffic signals that smoothly regulate the flow of cars. Now if those signals start malfunctioning, traffic would become chaotic and unpredictable. This is similar to what happens in dysautonomia, a condition where the body's internal "traffic signals" – the autonomic nervous system (ANS) – do not work as they should, leading to various symptoms and difficulties. The ANS is responsible for all “auto” responses in the body like: breathing, sleeping, heart rate, digestion, hormones and so much more!
Since these “traffic signal malfunctions” of the ANS can cause hundreds of different symptoms, it’s no wonder that doctors struggle to diagnose and even treat dysautonomia properly. There are fewer than 150 providers in the US who are trained to diagnose and treat autonomic disorders.
What treatment options are available for dysautonomia?
Dysautonomia is a condition where there is a dysfunction in the autonomic nervous system (ANS) which controls unconscious body functions such as breathing, blood pressure, and digestion.
Top 9 things you need to know about dysautonomia
Dysautonomia is becoming increasingly common; currently over 70 million people worldwide experience the condition (Cleveland Clinic).
What Are the Symptoms of Dysautonomia?
It is unfortunately common for patients to be seen by multiple doctors without receiving a clear diagnosis, or to keep being told that their issues are “psychosomatic”. This leads to many people with chronic illness realizing that they need to evaluate their symptoms and piece together a probable diagnosis on their own.
So what are the symptoms of dysautonomia? Since the condition is caused by a dysfunction of the ANS, they can be wide ranging and include any organ system in the body. Some of the most common symptoms are:
- Extreme Fatigue- this is more than just being tired; it’s often described as “being exhausted on a cellular level”. People find themselves too fatigued to get up to use the bathroom or get a glass of water no matter how uncomfortable they are. Many people with this symptom are misdiagnosed with Adrenal Fatigue.
- Heart Palpitations: Erratic heart rate when lying, moving, sitting or standing. This tends to be one of the more concerning for people - it can feel that they are having a heart attack and often end up in the ER, only to be told that everything is normal. This is a primary symptom of POTS (postural orthostatic tachycardia syndrome) - the most common subtype of dysautonomia, with an estimated 500,000-3 million sufferers in the US alone.
- Visible Signs:There are only a few visible symptoms of this condition, with many considering it an “invisible illness” where the sufferers typically appear well despite being very sick. Some symptoms are still visible, such as blood pooling in the legs and feet that can cause them to turn red or purple. Additionally the skin can experience extreme dryness or acne-like breakouts, and many experience an overabundance (or complete absence) of sweating.
- Sensitivities: Extreme light and/or sound as well as hot/cold sensitivities are common. Some patients have to wear sunglasses even indoors, cannot stand any level of noise, and are unable to tolerate temperature fluctuations. Hot temperatures especially cause many with dysautonomia to feel extremely ill, the heat increasing the severity of their other symptoms.
- Cognitive and Physical Impairment: Often called “brain fog” - it can feel like being in a haze, not fully awake, or struggling with cognitive functions like memory and focus. People often can’t finish sentences or remember things clearly, which is distressing. Anxiety and depression are also extremely common in this condition, with many who need medication in order to manage it.
- Daily Function Challenges: Everyday tasks become arduous, similar to moving with heavy weights attached to the body. Even standing too long can make dysautonomia patients feel like they will pass out or tip over, and standing itself can feel physically painful. Pain in muscles, shortness of breath, and low energy all make daily tasks difficult to complete.
- Sleep Issues: Disrupted sleep patterns lead to non-restorative sleep, making it difficult to wake up, even with alarms. Some struggle with insomnia, others with hypersomnia, and some with both. And this non-restorative sleep increases daytime fatigue.
- Immune System Deregulation: This may manifest as frequent infections or severe autoimmunity, complicating health further. Many dysautonomia patients will have chronic bladder or blood infections that never go away despite repeated treatment.
- Unpredictable Daily Functioning: The variability in symptoms makes planning activities difficult, as the capacity to participate can change dramatically from one day to the next. For those who struggle with this condition, they may feel well one day and then be bedridden for days or weeks afterwards. The mercurial nature of the condition makes it especially difficult to receive diagnosis (or even understanding from loved ones).(Wells, 2016).
These symptoms can be disconcerting at the least and completely disabling at its worst.
Is Dysautonomia Hereditary?
While some cases have shown familial patterns, suggesting a hereditary component, the condition is more often linked to factors like diet and the health of the gut (microbiome) rather than just genetics. (Maltese, 2020). The Human Genome Project has taught us that our environment and lifestyle choices can influence our genes significantly, which is also true for dysautonomia (Collins, 1995).
Far more commonly, dysautonomia is “secondary”, meaning it has a specific condition that caused or contributed to it. There are many of these conditions, some of which include:
- COVID-19
- Lyme
- EDS and other connective tissue disorders
- MS
- Toxins such as mold or heavy metals
- Lupus
- Traumatic brain injury
- And many more (Cleveland Clinic)
Many dysautonomia patients are able to link the beginning of their illness to a “trigger” event (or, more often, a “perfect storm” of events). As the cause can be extremely varied, it can be helpful to determine what the root cause of the condition was and when the trigger event occurred. Despite the diversity of causes, however, the approach to managing dysautonomia tends to follow a unified path focusing on re-regulating the nervous system.
How Will Dysautonomia Affect My Daily Life?
Imagine trying to plan your day but not knowing how you will feel from one hour to the next. This unpredictability is a daily reality for those with dysautonomia. Many find their lives completely turned upside down, wishing only to accomplish the simplest tasks without symptoms.
Some days you might be able to attend school, work or hang out with friends, while other days you might need to stay in bed. This variability makes managing the condition challenging and requires a comprehensive approach to treatment - focusing on rebuilding the damaged nerves, regulating the microbiome, immune, and hormonal systems (Hertel, 2024). Since the highways of our bodies become dysregulated, our “traffic signals” need to be reset.
Conclusion
Dysautonomia is the malfunctioning in the body's internal traffic system, where the autonomic nervous system (ANS) fails to regulate bodily functions properly. Often, the symptoms experienced are triggered by specific stimuli, extreme stress, toxins, illness, over burdening the ANS, and nutrient deficiency. Understanding these root causes is crucial for effectively managing the recovery and stabilization of the ANS.
To diagnose this condition doctors can employ tests, however many individuals can assess for the condition simply by reviewing their own history, symptoms and capabilities from day to day. This self evaluation is how many discover they may have dysautonomia, and begin adjusting their lifestyle to better manage the condition.
The symptoms of dysautonomia can be profound and varied, affecting almost every aspect of life. Individuals might experience visible signs such as discoloration of the extremities, severe cognitive and physical impairment, extreme fatigue, heightened sensitivities and disrupted sleep patterns. These symptoms lead to significant challenges in daily functioning, from basic self-care to social engagements, characterized by unpredictable fluctuation in capabilities.
While dysautonomia can be hard to diagnose with a practitioner, it is simple to review symptoms and history, and to identify the “trigger” that caused symptom onset. Take the “Dysautonomia Test” below to help you have a better understanding of your condition and begin your path to recovery.
REFERENCES
Ahmed F, Askarpour MR, Eslahi A, Nikbakht HA, Jafari SH, Hassanpour A, Makarem A, Salama H, Ayoub A. The role of ultrasonography in detecting urinary tract calculi compared to CT scan. Res Rep Urol. 2018 Nov 15;10:199-203. doi: 10.2147/RRU.S178902. PMID: 30510920; PMCID: PMC6248231.
Wells R, Tonkin A. Clinical approach to autonomic dysfunction. Intern Med J. 2016 Oct;46(10):1134-1139. doi: 10.1111/imj.13216. Erratum in: Intern Med J. 2017 Jan;47(1):126. PMID: 27734621.
Collins FS, Fink L. The Human Genome Project. Alcohol Health Res World. 1995;19(3):190-195. PMID: 31798046; PMCID: PMC6875757.
Hertel A, Black WR, Malloy Walton L, Martin J, Jones J. Cardiovascular Symptoms, Dysautonomia, and Quality of Life in Adult and Pediatric Patients with Hypermobile Ehlers-Danlos Syndrome: A Brief Review. Curr Cardiol Rev. 2024 Jan 24. doi: 10.2174/011573403X271096231203164216. Epub ahead of print. PMID: 38275067.
Evaluate Your Symptoms: Do You Have Dysautonomia?
Take our quick and comprehensive symptom assessment to find out if your symptoms align with dysautonomia and receive personalized insights.
Integrated Health Foundation
Evaluate Your Symptoms: Do You Have Dysautonomia?
This tool is for educational purposes and does not provide a diagnosis. Any results from this assessment are meant to be informative and should not replace professional medical advice.
