FAQs

Dysautonomia has a long history, with documentation dating back to before 2000 BC in regions like China, India, and Indonesia. Each country had a similar name for the condition. In China it was known as ‘foot qi’, in Japan they called it ‘leg disease’, and in India and Indonesia it was named “berebere” which translates to “I can’t, I can’t”.

Over time the disease was found to be more common in cultures that consumed a lot of white rice. It has been discovered that the consumption of white rice can lead to thiamine (vitamin B1) deficiency, a vitamin which is crucial for nervous system health. Its prevalence increased notably in the 1800s, particularly among navy personnel on long voyages.

In 1884 a Japanese naval doctor by the name of Kanehiro Takaki became aware of the ‘berebere’ disease becoming a major health issue in the Japanese navy, causing a high number of deaths. He conducted a critical study which involved embarking on a voyage and altering the sailors’ diet by reducing the amount of white rice they ate. His findings confirmed that the ‘berebere’ disease was linked to dietary habits, especially the consumption of white rice, which can lead to thiamine (vitamin B1) deficiency. His research laid the groundwork for later discoveries of other contributing factors, including nerve damage, genetic disorders, blood loss, and histamine disorders. For more information, read  Top 9 things you need to know about dysautonomia

Dysautonomia is an umbrella term encompassing different conditions affecting the Autonomic Nervous System (ANS). Imagine the body as a complex network of highways where traffic signals are essential to smoothly regulate the flow of cars. If those signals start to malfunction, the traffic would become chaotic and unpredictable. This is similar to what happens in dysautonomia, it is 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.

Dysautonomia is a significant disruption in how the body’s automatic processes are regulated. It is a complex condition where the autonomic nervous system (ANS) is out of balance, primarily showing an excessive activation of the parasympathetic (fight or flight) system. This imbalance can affect various body systems, leading to issues with immune system regulation, respiratory rate (when awake and while sleeping), bowel movements, balance, equilibrium, memory, attention, sleep patterns, temperature control, hormonal balance, and nutrient absorption. Despite consuming sufficient nutrients, individuals with dysautonomia may experience deficiencies due to this autonomic disruption. For more information, read  Top 9 things you need to know about dysautonomia

Dysautonomia can present a wide range of symptoms that can vary greatly from person to person. Here are some common symptoms experienced by those with the condition:

• Extreme Fatigue: Many people with dysautonomia experience debilitating fatigue, sometimes being bedridden and unable to perform simple tasks like using the bathroom or getting a glass of water. This is often misdiagnosed as adrenal fatigue.
• Heart Palpitations: Erratic heart rates, especially when lying down, moving, sitting, or standing, are common. This can be alarming and may lead to frequent ER visits despite normal test results. Postural Orthostatic Tachycardia Syndrome (POTS) is a frequent symptom.
• Visible Signs: Poor blood flow can cause parts of the body, particularly the feet and legs, to turn purple or pink. Other visible signs include dry skin and acne-like blemishes.
• Sensitivities: Individuals often have extreme sensitivities to light, sound, heat, and cold. These sensitivities can cause significant discomfort, such as eye strain, the need for sunglasses indoors, and severe anxiety from minor temperature changes.
• Cognitive and Physical Impairment: Cognitive functions like memory and focus are often impaired, creating a “haze” or brain fog. Physical activities can become very challenging, and there is a frequent need to take breaks and rest.
• Daily Function Challenges: Everyday tasks become extremely difficult, feeling like moving with heavy weights. Standing for too long can cause dizziness or a feeling of faintness, and muscle pain can make activities like climbing stairs or opening jars nearly impossible.
• Sleep Issues: Sleep patterns are often disrupted, leading to non-restorative sleep. Insomnia is common, making it difficult to wake up even with alarms.
• Immune System Deregulation: Frequent infections and severe autoimmune responses are common. Patients may experience repeated sinus infections, ear infections, and other illnesses.
• Unpredictable Daily Functioning: The variability of symptoms makes it hard to plan activities, as the ability to participate can change dramatically from day to day. Feeling well enough to go out often results in a host of symptoms upon returning home.

These symptoms collectively create a challenging daily life for individuals with dysautonomia, significantly impacting their overall quality of life.

Diagnosing dysautonomia often involves specific tests like the tilt table test or QART (Quantitative Sudomotor Axon Reflex Test). Consulting a neuromuscular specialist is recommended for an accurate diagnosis. An at-home preliminary test involving a safety pin can also help indicate nerve sensitivity, suggesting the need for further professional evaluation. The most common diagnostic process (even with doctors) is done by checking the above symptoms with yours and following through with nutrient and bloodwork testing.  For more information on diagnosing dysautonomia. For more information, read  How Do I Know If I Have Dysautonomia.

Dysautonomia can be triggered by various factors, including infections, childbirth complications, head injuries, significant blood loss, and hereditary factors. Common comorbid conditions include Ehlers-Danlos Syndrome (EDS) and MTHFR gene mutations. Despite the diversity in causes, the approach to managing dysautonomia typically involves re-regulating the nervous system.

There are often complexities around using terms like ‘cure’ and ‘remission’. The general consensus in the medical world is that dysautonomia is a lifelong condition that is not curable. However, there is substantial evidence and case studies of individuals who have overcome all symptoms. This indicates that there is not only hope to overcome the condition, there is also proof that it’s possible to live a full life after the condition.

Various treatment options exist for dysautonomia, including IVIG (Intravenous Immunoglobulin) therapy, medications like beta blockers and midodrine, and lifestyle changes. IVIG has shown promising results but is expensive and not typically covered by insurance. Medications offer some relief but often do not lead to complete recovery. Many patients adopt a self-managed approach, involving holistic lifestyle and dietary changes, which can be effective in managing symptoms.

Dysautonomia can significantly impact daily life, with symptoms varying from day to day and person to person. The condition can worsen over time, affecting the nervous, immune, and hormonal systems. Successful management often requires a comprehensive approach to rebuild these systems, navigating challenges like poor blood flow, dietary impacts, and the need for increased rest. For more information, read  Top 9 things you need to know about dysautonomia

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 your gut (microbiome) rather than just genetics.

Dysautonomia appears to have a hereditary component in some families, though it’s been found to be more closely related to the microbiome than genetics alone. Historical causes often link to nutritional deficiencies, particularly diets high in white rice and low in thiamine-rich proteins

The Human Genome Project has taught us that our environment and lifestyle choices can influence our genes significantly, which is also true for dysautonomia.

Dysautonomia often leads to widespread deregulation, affecting multiple systems, including the immune system and organ functions. This can result in increased susceptibility to infections, autoimmunity, and conditions affecting the thyroid, kidneys, and liver. Neuropathy is also common due to prolonged blood pooling, leading to nerve damage.

For those recently diagnosed with dysautonomia, managing the condition involves understanding its fluctuating nature, regulating the microbiome, rebuilding the immune system, and repairing damaged nerves. Common recommendations include increasing sodium intake and wearing compression hose. However, a comprehensive approach involving lifestyle, limbic and nutrition adjustments on a specific protocol are crucial to the healing journey. For more information, read  What Treatment Options Are Available For Dysautonomia?