Over 70 million people worldwide live with various forms of dysautonomia.
However, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
Keep reading to find out more about this disorder, its symptoms, resulting conditions, causes, types and treatment.
What is dysautonomia?
Dysautonomia is a term that describes a group of disorders involving dysfunction of the autonomic nervous system (ANS), which controls many automatic bodily functions, including heart rate, blood pressure, digestion, and temperature regulation. When the autonomic nervous system malfunctions, it can lead to a variety of symptoms, which can be mild or severe, and may fluctuate in intensity.
In simple terms, dysautonomia is when the system that controls automatic body functions doesn't work properly. This can cause symptoms like dizziness, fainting, fast or slow heartbeats, digestive issues, severe pain, and trouble with temperature control. It’s a broad term for different conditions that affect the body’s "auto-pilot" system, making basic body functions feel out of balance.
It is crucial to point out that dysautonomia (or any other issue with the autonomic nervous system, such as a damaged vagus nerve) generally is the underlying cause of other important health problems.
Common symptoms and resulting disorders
Dysautonomia can lead to several disorders and symptoms, which can vary widely depending on the type and severity, but they generally affect basic body functions. Here are some of the most common symptoms and conditions:
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Rapid or irregular heartbeat (tachycardia or arrhythmia)
Dizziness, especially upon standing (orthostatic hypotension)
Fainting or near-fainting episodes (syncope)
Fluctuations in blood pressure (high or low)
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Nausea, bloating, and early satiety (feeling full quickly)
Constipation or diarrhea
Swallowing Difficulties (Dysphagia): Autonomic dysfunction can affect the muscles involved in swallowing, leading to a sensation of food sticking in the throat or difficulty swallowing. This can increase the risk of choking and aspiration (inhaling food into the lungs).
Gastroparesis: This is a condition where the stomach empties more slowly than normal, causing symptoms like nausea, bloating, early fullness when eating, vomiting, and abdominal pain. Gastroparesis occurs when the vagus nerve, which helps control stomach movements, is affected by autonomic dysfunction.
Irritable Bowel Syndrome (IBS): Dysautonomia can worsen IBS symptoms like abdominal pain, diarrhea, or constipation.
Esophageal Dysmotility: This occurs when the muscles in the esophagus fail to contract or relax properly, disrupting the smooth passage of food from the mouth to the stomach. Dysautonomia can impair this process because the autonomic nervous system directly influences esophageal motility. Here’s how dysautonomia affects esophageal function:
Disrupted Muscle Coordination: The autonomic nervous system controls the muscles of the esophagus, including the smooth muscles that push food down and the lower esophageal sphincter (LES), which prevents acid reflux. In dysautonomia, nerve signals can become erratic or weak, leading to poor coordination of esophageal muscles and incomplete or abnormal contractions.
Delayed Esophageal Transit: When autonomic dysfunction slows or weakens peristalsis (the wave-like muscle contractions that move food), food can remain in the esophagus for longer than normal. This can cause symptoms like a sensation of food getting “stuck,” chest discomfort, or regurgitation.
Lower Esophageal Sphincter Dysfunction: Dysautonomia can impair the LES, the muscle at the bottom of the esophagus that opens to allow food into the stomach and closes to prevent stomach acid from backflowing. If the LES fails to contract or relax correctly, it can lead to acid reflux or gastroesophageal reflux disease (GERD).
Acid Reflux and GERD: Dysautonomia can increase the risk of gastroesophageal reflux disease (GERD), where stomach acid flows back into the esophagus. This can lead to symptoms like heartburn, chest pain, and, over time, esophageal inflammation.
Bloating and Gas: Poor motility in the stomach and intestines can lead to excessive gas and bloating, which are common complaints among people with dysautonomia, especially those with conditions like POTS.
Digestive difficulties caused by dysautonomia may lead to malnutrition, weight loss, or deficiencies in essential nutrients due to poor absorption or restricted diets.
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Excessive sweating or lack of sweating
Intolerance to heat or cold
Temperature sensitivity, feeling too hot or too cold more easily
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Shortness of breath
Chest pain or tightness
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Chronic fatigue and general weakness
Feeling extremely tired, even after minor exertion
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Brain fog (difficulty concentrating and memory issues)
Difficulty focusing or staying mentally alert
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Difficulty urinating or frequent urination
Incomplete bladder emptying
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Blurred vision, especially when standing up
Light sensitivity
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Dysautonomia can interfere with sleep cycles, leading to conditions like insomnia, restless legs syndrome, and sleep apnea, all of which contribute to fatigue and poor health.
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The ongoing physical and mental stress of living with dysautonomia symptoms can increase the risk of mood disorders, particularly anxiety and depression. These mental health conditions may arise as a response to the physical limitations and lifestyle changes associated with dysautonomia.
A cardiologist or neurologist with experience in dysautonomia should be able to determine whether you have this disorder or not.
Causes
Dysautonomia can result from various causes, including genetic predisposition, viral infections (like COVID, for example), autoimmune diseases, or trauma.
Some causes include:
Ehlers-Danlos Syndrome (EDS): Some people with this connective tissue disorder experience dysautonomia symptoms, especially related to blood pressure and heart rate, due to weak blood vessels and other structural issues.
Autoimmune Diseases: Conditions like lupus, Sjögren's syndrome, and rheumatoid arthritis can cause autonomic dysfunction as part of their broader effects on the body.
Diabetes: Long-term diabetes can damage the autonomic nerves, leading to symptoms like digestive problems, issues with blood pressure regulation, and difficulty sensing low blood sugar.
Parkinson’s Disease: This degenerative neurological disease can cause autonomic issues like blood pressure instability and difficulty swallowing as the disease progresses.
Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME): People with CFS/ME often have autonomic symptoms, including dizziness, fainting, and blood pressure regulation issues.
Types of dysautonomia
Primary Dysautonomias:
These are disorders where the dysfunction of the autonomic nervous system occurs independently and is not caused by another underlying condition.
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Key Features: Rapid heart rate increase upon standing, dizziness, fatigue, and exercise intolerance.
Common in: Young women, but it can affect all ages and genders.
Cause: Often idiopathic, but may be triggered by viral infections, trauma, or autoimmune conditions.
Subtypes:
Neuropathic POTS: Associated with nerve damage.
Hyperadrenergic POTS: Linked to overactivation of the sympathetic nervous system.
Hypovolemic POTS: Due to low blood volume.
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Key Features: Fainting due to a sudden drop in blood pressure and heart rate.
Triggers: Standing for long periods, emotional stress, or pain.
Prognosis: Often benign but can disrupt daily life.
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Key Features: Gradual degeneration of the autonomic nervous system, leading to symptoms like orthostatic hypotension, urinary retention, and sweating abnormalities.
Progression: Unlike multiple system atrophy (MSA), PAF does not involve significant motor or cognitive impairments.
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Key Features: Severe autonomic failure combined with motor and cerebellar symptoms, such as tremors, rigidity, and balance issues.
Prognosis: Progressive and often fatal, with symptoms resembling Parkinson’s disease.
2. Secondary Dysautonomias:
These occur as a result of other medical conditions affecting the autonomic nervous system.
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Key Features: Damage to the ANS due to prolonged high blood sugar, leading to symptoms like gastroparesis, bladder dysfunction, and blood pressure instability.
Prevalence: Common in patients with long-term diabetes.
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Key Features: Autonomic dysfunction caused by autoimmune diseases (e.g., Sjögren’s syndrome, lupus, or autoimmune ganglionopathy).
Cause: The immune system attacks parts of the ANS.
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Key Features: ANS dysfunction following infections like COVID-19, Epstein-Barr virus, or the flu.
Examples: Long COVID dysautonomia, which can manifest as POTS-like symptoms.
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Key Features: Autonomic dysfunction alongside motor symptoms such as tremors and rigidity.
Common Symptoms: Orthostatic hypotension, urinary issues, and gastrointestinal problems.
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Key Features: POTS and gastrointestinal issues linked to connective tissue defects.
Cause: Structural abnormalities affecting vascular and nervous system stability.
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Key Features: Damage to the autonomic nerves due to chronic alcohol consumption.
Symptoms: Blood pressure issues, sweating abnormalities, and digestive problems.
3. Familial or Hereditary Dysautonomias:
These are rare genetic disorders that affect the autonomic nervous system.
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Key Features: A rare genetic condition seen primarily in individuals of Ashkenazi Jewish descent. Symptoms include difficulty regulating blood pressure, poor temperature control, and insensitivity to pain.
Cause: Mutation in the IKBKAP gene.
Prognosis: Often diagnosed in infancy and can lead to severe complications.
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Key Features: A group of genetic disorders that cause progressive nerve damage, affecting both sensory and autonomic nerves.
Symptoms: Pain insensitivity, blood pressure fluctuations, and sweating abnormalities.
4. Other Specific Types:
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Key Features: A significant drop in blood pressure upon standing, leading to dizziness and fainting.
Subtypes:
Neurogenic Orthostatic Hypotension (NOH): Caused by nervous system degeneration (e.g., in Parkinson’s or PAF).
Non-neurogenic Orthostatic Hypotension: Due to medications, dehydration, or blood loss.
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Key Features: Impaired ability to regulate blood pressure in response to changes in posture or stress.
Symptoms: Severe blood pressure fluctuations, rapid heart rate, and headache.
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Key Features: Sudden, extreme variations in autonomic functions like heart rate and blood pressure.
Seen in: Severe trauma, brain injuries, or autonomic storming (e.g., following a spinal cord injury).
Treatment
Lifestyle adjustments:
Increased Fluid and Salt Intake: Dehydration can exacerbate dysautonomia symptoms. Drinking more fluids (at least 2-3 liters per day) and increasing salt intake (under a doctor's guidance) helps maintain blood volume and blood pressure. Electrolyte-rich drinks (e.g., electrolyte powders, sports drinks) can help balance sodium and potassium levels and prevent dehydration.
Frequent Small Meals: Eating smaller, more frequent meals can help prevent blood from pooling in the abdomen, which can worsen symptoms. Avoid large meals or meals high in carbohydrates.
Compression Garments: Compression stockings or abdominal binders can help prevent blood from pooling in the lower limbs, improving circulation and reducing symptoms like dizziness or lightheadedness when standing.
Elevate the Head of the Bed: Sleeping with the head of the bed elevated can help prevent symptoms related to blood pressure fluctuations.
Avoid Sudden Position Changes: Standing up slowly and avoiding quick position changes can help prevent dizziness and fainting episodes.
Avoid Trigger Foods: Some people with dysautonomia experience worsened symptoms with certain foods (e.g., caffeine, alcohol, or large meals). Avoiding these can help manage symptoms.
Medications:
Several medications can be used to address the symptoms of dysautonomia, depending on the type and severity of the condition. The following medications serve illustrative purposes and should not be interpreted as medical guidance. Always use medications prescribed and supervised by a doctor.
Fludrocortisone: A corticosteroid that helps increase blood volume by promoting sodium retention, which can help improve symptoms like dizziness and low blood pressure.
Midodrine: A medication that constricts blood vessels to raise blood pressure and reduce symptoms of orthostatic hypotension (low blood pressure upon standing).
Beta-Blockers (e.g., propranolol, metoprolol): Often used in POTS to regulate heart rate and blood pressure by reducing tachycardia (abnormally fast heart rate).
Ivabradine: Used in some cases of POTS to slow down heart rate without affecting blood pressure.
Pyridostigmine: A drug that can improve blood flow and autonomic function by helping the nervous system work more effectively in some cases.
Antidepressants (e.g., SSRIs, SNRIs): Low doses of selective serotonin reuptake inhibitors (SSRIs) or serotonin-norepinephrine reuptake inhibitors (SNRIs) are sometimes used to treat dysautonomia-related symptoms like fatigue, anxiety, or orthostatic intolerance.
Dopamine Agonists: Medications like bromocriptine may be used to stimulate the autonomic system in certain cases.
While there is no cure, treatments focus on managing symptoms. These may include medications to regulate blood pressure and heart rate, dietary adjustments, physical therapy, and lifestyle changes such as increasing salt and fluid intake to prevent dehydration.