Dysautonomia: Causes, Symptoms & Treatment Explained

What is Dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System (ANS). The Autonomic Nervous System controls the automatic functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.

The autonomic nervous system (ANS) is the part of the nervous system that regulates functions that are automatic in nature such as heart rate, blood pressure, digestion, excretion, perspiration, temperature regulation, pupil dilation, circulation, and respiration among others. The ANS is responsible for maintaining homeostasis, or equilibrium, in the body.

Affected Body Parts/Organs

When dysautonomia occurs, the following systems and organs may be affected:

• Cardiovascular system: Heart rate variability, blood pressure irregularities
• Gastrointestinal system: Digestive dysfunction, constipation, diarrhea
• Genitourinary system: Bladder dysfunction, sexual problems
• Thermoregulatory system: Temperature control issues, sweating abnormalities
• Eyes: Pupillary dysfunction
• Respiratory system: Breathing irregularities
• Endocrine system: Hormonal imbalances

Prevalence and Significance

Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.

2. History & Discoveries

Historical Recognition

A similar form of this disorder has been historically noticed in various wars, including the Crimean War and American Civil War, and among British troops who colonized India. This disorder was called “irritable heart syndrome” (Da Costa’s syndrome) in 1871 by American physician Jacob DaCosta.

An inherited form of dysautonomia, known as Riley-Day syndrome, was first described in 1949. In later years, genetic testing identified this as an inherited form of familial dysautonomia.

Major Breakthroughs

In this video Dr. Low, the physician who coined the term, “POTS”, describes the early days of the development of autonomic medicine and summarizes key findings about POTS in recent years. Dr. Phillip Low played a crucial role in defining POTS (Postural Orthostatic Tachycardia Syndrome), one of the most common forms of dysautonomia.

Familial dysautonomia (FD) is a rare neurological disorder caused by a splice mutation in the IKBKAP gene. The mutation arose in the 1500s within the small Jewish founder population in Eastern Europe and became prevalent during the period of rapid population expansion within the Pale of Settlement.

Evolution of Understanding

Particularly in the Russian literature, a subtype of dysautonomia that particularly affects the vascular system has been called vegetative-vascular dystonia. The term “vegetative” reflects an older name for the autonomic nervous system: the vegetative nervous system.

3. Symptoms

Early vs. Advanced Symptoms

Early symptoms often include:

• Dizziness upon standing
• Fatigue
• Brain fog
• Heart palpitations
• Digestive issues

Advanced symptoms may involve:

• Severe orthostatic intolerance
• Gastroparesis (delayed stomach emptying)
• Temperature regulation problems
• Chronic fatigue syndrome
• Sleep disorders

Common vs. Rare Symptoms

Common symptoms include: Balance problems; Fainting or passing out (especially when standing up); Nausea and vomiting; “Brain fog,” forgetfulness or trouble focusing; Fast heart rate (tachycardia) or slow heart rate (bradycardia); Pinpoint eye pupils or unusually wide eye pupils; Changes in bowel movements (constipation or diarrhea); Fatigue or ongoing tiredness; Sexual dysfunction; Chest pain or discomfort; Frequent urge to pee (urinate) or urinary incontinence.

Rare symptoms may include:

• Coat hanger pain (neck and shoulder pain)
• Temperature dysregulation
• Non-length dependent neuropathy
• Autoimmune manifestations

Symptom Progression

The symptoms of dysautonomia, which are numerous and vary widely for each person, are due to inefficient or unbalanced efferent signals sent via both systems. Symptoms can be intermittent or progressive, depending on the underlying cause and type of dysautonomia.

4. Causes

Biological and Environmental Causes

Primary dysautonomia results from: Inherited or degenerative neurologic diseases including Synucleinopathy, a group of neurodegenerative diseases including pure autonomic failure, Parkinson’s disease, dementia with Lewy bodies and multiple system atrophy.

Secondary dysautonomia can be caused by: COVID-19 infection (especially “long COVID,” when you have symptoms for much longer than expected); Ehlers-Danlos syndrome (and other connective tissue disorders); Guillain-Barré syndrome; Lewy body dementia; Lyme disease; Medications or medical procedures; Multiple sclerosis and neuromyelitis optica; Multiple system atrophy (MSA); Parkinson’s disease; Postural orthostatic tachycardia syndrome (POTS).

Genetic and Hereditary Factors

Also known as genetic or hereditary dysautonomias, these conditions often reflect problems or mutations which occur during the development of the autonomic nervous system. One type of mutation, found almost exclusively in people of Ashkenazi Jewish heritage, affects the autonomic and sensory nervous system development causing familial dysautonomia (FD).

The carrier rate is 1:32 in Jews descending from this region. The mutation results in a tissue-specific deficiency in IKAP, a protein involved in the development and survival of neurons.

Known Triggers

Environmental triggers may include:

• Viral infections
• Physical trauma
• Toxic exposures
• Autoimmune reactions
• Medication side effects

5. Risk Factors

Demographics at Risk

The majority of them are women, although men may also develop POTS. POTS is less common in young children, but it affects adolescents, and symptoms often develop during puberty.

It is estimated that postural orthostatic tachycardia syndrome (POTS), a common autonomic disorder, affects 1 out of every 100 teens.

Environmental and Occupational Factors

• Previous viral infections (especially EBV, COVID-19)
• Exposure to toxins
• Physical trauma or surgery
• Prolonged bed rest or deconditioning

Pre-existing Conditions

Researchers have found high levels of autoimmune markers in people with the condition. In addition, those with POTS are more likely than the general population to have an autoimmune disorder, such as Sjögren’s disease or lupus.

6. Complications

Immediate Complications

Because dysautonomia affects vital body processes, there are many possible complications. Most of the complications revolve around symptoms of dysautonomia, especially when they’re severe or disrupt your usual routine and activities. Serious symptoms and complications generally include: Heart rate issues (too fast, too slow or irregular); Fainting (which can lead to injuries from falls); Trouble breathing; Disrupted digestion, which may lead to constipation, diarrhea or other problems; Disrupted kidney function, leading to urinary tract infections or incontinence.

Long-term Impact

• Chronic disability and reduced quality of life
• Social isolation and employment challenges
• Mental health impacts (anxiety, depression)
• Cardiovascular deconditioning

Potential Fatality

Dysautonomia can be fatal due to pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

7. Diagnosis & Testing

Common Diagnostic Procedures

Dysautonomia is diagnosed after a thorough patient history and physical exam. The healthcare professional will typically receive a detailed medication list to assess medications that might be causing the symptoms, followed by a thorough review of their medical history to assess for recent volume loss.

Specific Tests

Tilt Table Test: The healthcare professional may perform a tilt table test, during which the individual lies on a table that lifts and lowers to different angles. During this test, the individual is connected to equipment that measures blood pressure, oxygen levels, and heart activity. They are subsequently tilted at different angles to assess how their nervous system regulates and normalizes blood pressure and heart rate.

Other Diagnostic Tests: Other diagnostic tests include breathing tests which measure how the heart rate responds to breathing slowly and deeply for 1.5 minutes at a rate of six breaths per minute; sweating tests which measure the nerves that control sweating; general blood work to look for underlying medical causes (e.g., hematocrit, electrolytes, blood urea nitrogen, creatinine, glucose); and 12-lead electrocardiogram.

POTS-Specific Criteria

A specific group of symptoms that frequently occur when standing upright; A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing.

8. Treatment Options

Standard Treatment Protocols

There’s no cure for dysautonomia, but many symptoms are manageable. The treatment approach for dysautonomia depends strongly on many factors, especially what’s causing it.

Non-Pharmacological Treatments

Lifestyle Modifications: Diet changes. Increasing salt intake can increase your blood pressure, keeping it from plunging as much when you stand. Hydration. Keeping hydrated helps maintain blood pressure.

To combat orthostatic hypotension, one can try a high-salt diet (e.g., adding three to five grams daily to their meals), drinking more water daily, and elevating the head of their bed.

Pharmacological Treatments

Medications such as fludrocortisone and midodrine can increase blood pressure and be used to treat orthostatic hypotension.

Emerging Treatments

Two phase 2 clinical trials to test the safety and effectiveness of three treatments for adults with autonomic nervous system dysfunction from long COVID have begun. The trials are part of the National Institutes of Health’s Researching COVID to Enhance Recovery (RECOVER) Initiative.

9. Prevention & Precautionary Measures

Primary Prevention

Since many forms of dysautonomia are genetic or result from other conditions, primary prevention is often not possible. However, some measures may help:

• Early treatment of infections
• Avoiding known triggers
• Maintaining good cardiovascular health
• Proper management of underlying conditions

Lifestyle Precautions

• Gradual position changes
• Compression garments
• Regular but appropriate exercise
• Stress management
• Adequate hydration and salt intake

No Preventive Vaccines

Currently, there are no specific vaccines for dysautonomia prevention, though reducing viral infections (through standard vaccinations) may help reduce secondary dysautonomia risks.

10. Global & Regional Statistics

Worldwide Prevalence

It is estimated that 70 million people worldwide have some form of autonomic dysfunction.

COVID-19 Related Statistics

We included 320 patients (35.92 ± 11.92 years, 73% females). The median COMPASS-31 score was 26.29 (0-76.73). The most affected domains of dysautonomia were gastrointestinal, secretomotor, and orthostatic intolerance with 91.6%, 76.4%, and 73.6%, respectively.

Approximately 2.5% of patients with infection suffered Post-COVID-19 autonomic dysfunction. In an observational cohort study involving 205 patients with confirmed or probable COVID-19 infection who met specific eligibility criteria a high prevalence (25%) of Post-COVID dysautonomia was shown.

Mortality Rates

While specific mortality rates vary by type, Multiple system atrophy (MSA) is rare, with experts estimating that it affects 2–5 people in every 100,000. It usually occurs after the age of 40 years.

11. Recent Research & Future Prospects

Current Research Initiatives

At the core of Dysautonomia International’s mission is the advancement of medical research on autonomic disorders. Research is the key to understanding what causes autonomic disorders, how to best treat them, and hopefully someday how to cure them.

Dysautonomia International launched in the fall of 2012. After our first year of fundraising, in December of 2013, we awarded our first four research grants.

Stem Cell Research

Induced pluripotent stem (iPS) cells have considerable promise as a novel tool for modelling human disease and for drug discovery. While the generation of disease-specific iPS cells has become routine, realizing the potential of iPS cells in disease modelling poses challenges at multiple fronts.

Future Treatment Possibilities

There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia.

Long COVID Research

Researchers plan to enroll 380 total participants at 50 sites across the United States. Teams at the trial sites will recruit participants from their health systems and surrounding communities.

12. Interesting Facts & Lesser-Known Insights

Common Misconceptions

“[A myth is that] POTS isn’t a heart condition – influencers keep calling it a heart condition to make it easier for people to understand, but all it does is confuse what POTS is in the long run! It’s autonomic dysfunction, dysfunction of the system that controls your heart rate. If POTS is all you have, then your heart is perfectly fine, it’s just getting the wrong signals.” – Caitlin P.

Reality: Dysautonomia can have a significant impact on your health, and, depending on the type, the individual and other comorbidities, it can be fatal. Each form may affect your body in different ways – some more direct than others – but dysautonomia is not completely “harmless.”

Diagnostic Challenges

POTS, for example, can take more than five years on average to diagnose. Symptoms related to heart rate need to persist for three to six months before even considering the POTS diagnosis.

Impact on Quality of Life

“Because of my POTS and other syndromes… I can’t work a full-time job. I can do some work from home and people constantly tell me I am so lucky to get to work from home. I would love to be able to leave my house and have a job and meet people and have friends. But they only see that I get to work from home in my pajamas.” – Brittany R.C.

Anxiety Misattribution

Although the origin of POTS symptoms is physical, sometimes people attribute the symptoms incorrectly to psychological disorders such as anxiety. While some people with POTS have anxiety disorders similar to the general population, POTS is not caused by anxiety.

For such patients, the anxiety sensitivity index may have better predictivity for anxiety disorders while the Beck Anxiety Inventory may misleadingly suggest anxiety for patients with dysautonomia.

Pregnancy Considerations

In some studies, slightly more than half of pregnant women with POTS felt better than usual during their pregnancies, which might be due to the increase in blood volume that is present after the first few weeks of pregnancy.

Invisible Illness Reality

Often dysautonomias are invisible illnesses. Patients may not look sick, and yet they have symptoms that make it difficult to work, go to school, and perform activities of daily living.

Note: This report synthesizes current medical knowledge about dysautonomia as of 2024-2025. Medical understanding continues to evolve, and readers should consult with healthcare professionals for personalized medical advice. The statistics and research findings cited represent the most recent available data from reputable medical sources and research institutions.