Dysautonomia

What is dysautonomia?

Dysautonomia is a general term for a group of disorders that share a common problem – that is, an autonomic nervous system (ANS) that doesn’t function as it should. The ANS is the part of the nervous system that controls involuntary body functions (functions you don’t consciously control) like your heart rate, blood pressure, breathing, digestion, body and skin temperature, hormonal function, bladder function, sexual function and many other functions.

When the ANS doesn’t work the way it should, it can cause heart and blood pressure problems, breathing trouble, loss of bladder control and many other problems.

Who might get dysautonomia?

Dysautonomia, also called autonomic dysfunction or autonomic neuropathy, is relatively common. Worldwide, it affects more than 70 million people. It can be present at birth or appear gradually or suddenly at any age. Dysautonomia can be mild to serious in severity and even fatal (rarely). It affects women and men equally.

Dysautonomia can occur as its own disorder, without the presence of other diseases. This is called primary dysautonomia. It can also occur as a condition of another disease. This is called secondary dysautonomia.

Examples of diseases in which secondary dysautonomia can occur include:

• Diabetes.
• Parkinson’s disease.
• Muscular sclerosis.
• Rheumatoid arthritis.
• Lupus.
• Sjogren's syndrome.
• Sarcoidosis.
• Crohn’s disease, ulcerative colitis.
• Celiac disease.
• Charcot-Marie-Tooth disease.
• Chiari malformation.
• Amyloidosis.
• Guillain-Barre syndrome.
• Ehlers-Danlos syndrome.
• Lambert-Eaton syndrome.
• Vitamin B and E deficiencies
• Human immunodeficiency virus (HIV).
• Lyme disease.

What causes dysautonomia?

Dysautonomia happens when the nerves in your ANS don’t communicate as they should. When your ANS doesn’t send messages or receive messages as it should or the message isn’t clear, you experience a variety of symptoms and medical conditions.

Dysautonomia can affect ANS functions including:

• Blood pressure.
• Breathing.
• Digestion.
• Heart rate.
• Kidney function.
• Pupil dilation and constriction in the eyes.
• Sexual function.
• Body and skin temperature control.

What are the symptoms of dysautonomia?

There are many symptoms of dysautonomia. Symptoms vary from patient to patient. Symptoms can be present some of the time, go away, and return at any time. Some symptoms may appear at a time of physical or emotional stress or can appear when you are perfectly calm. Some symptoms may be mild in some patients; in others, they may interfere constantly with daily life.

A common sign of dysautonomia is orthostatic intolerance, which means you can’t stand up for long, without feeling faint or dizzy. Other signs and symptoms of dysautonomia you may experience include:

Certain conditions and events can bring on the symptoms of dysautonomia. These triggers include:

• Alcohol consumption.
• Dehydration.
• Stress.
• Tight clothing.
• Hot environments.

Are there different types of dysautonomia?

Dysautonomia is a medical term for a group of different conditions that share a common problem – improper functioning of the autonomic nervous system. Some of the conditions caused by primary dysautonomia include:

• Neurocardiogenic syncope (NCS): NCS is the most common form of dysautonomia. It can cause fainting spells that happen once or twice in your lifetime or multiple times every day. NCS is also called situational syncope or vasovagal syncope.
• Postural orthostatic tachycardia syndrome (POTS): A disorder that causes problems with circulation (blood flow), POTS can cause your heart to beat too fast when you stand up. It can lead to fainting, chest pain and shortness of breath.
• Familial dysautonomia (FD): People inherit this type of dysautonomia from their genetic relatives. It can cause decreased pain sensitivity, lack of eye tears and trouble regulating body temperature. FD is more likely to affect Jewish people (Ashkenazi Jewish heritage) of Eastern European heritage.
• Multiple system atrophy (MSA): A life-threatening form of dysautonomia, multiple system atrophy develops in people over 40 years old. It can lead to heart rate issues, low blood pressure, erectile dysfunction and loss of bladder control.
• Pure autonomic failure: People with this form of dysautonomia experience a fall in blood pressure upon standing and have symptoms including dizziness, fainting, visual problems, chest pain and tiredness. Symptoms are sometimes relieved by lying down or sitting.

How is dysautonomia diagnosed?

One of the tests your healthcare provider will use to diagnose some forms of dysautonomia is a tilt table test.

During this test:

1. You lie on a table that can lift and lower at different angles. It has supports for your feet.
2. You are connected to medical equipment that measures your blood pressure, oxygen levels and heart’s electrical activity.
3. When the table tilts upward, the machines measure how your body regulates ANS functions like blood pressure and heart rate.

Other tests your healthcare provider may use to aid in the diagnosis include sweating tests, breathing tests, lab (blood work) tests, and heart workup (electrocardiography). Other tests may be done to determine if other diseases or conditions are causing dysautonomia.

How is dysautonomia managed or treated?

There’s no cure for this condition, but you can manage the symptoms. Your healthcare provider may suggest many different therapies to manage your particular dysautonomia symptoms.

The more common treatments include:

• Drinking more water every day. Ask your healthcare provider how much you should drink. Additional fluids keep your blood volume up, which helps your symptoms.
• Adding extra salt (3 to 5 grams/day) to your diet. Salt helps your body keep a normal fluid volume in your blood vessels, which helps maintain a normal blood pressure.
• Sleeping with your head raised in your bed (about 6 to 10 inches higher than your body).
• Taking medicines such as fludrocortisone and midodrine to increase your blood pressure.

What are the complications of dysautonomia or its treatment?

The complications of dysautonomia vary depending on the symptoms you experience. In severe cases, people might have life-threatening complications such as pneumonia and respiratory failure.

Dysautonomia can also cause:

• Abnormal heart rate (too fast, too slow or irregular).
• Fainting.
• Breathing trouble.
• Digestive problems.
• Visual problems, such as blurred vision.

What are the risk factors for dysautonomia?

You may be at higher risk for dysautonomia if you:

• Are a Jewish person of Eastern European heritage (only for the familial dysautonomia form of the condition).
• Have diabetes, amyloidosis, certain autoimmune diseases and other medical conditions mentioned earlier in article in the question, “who might get dysautonomia?”
• Have a family member with the disorder.

How can I prevent dysautonomia?

You can’t prevent dysautonomia. You can take steps to manage your symptoms and keep them from getting worse. See upcoming section, “Living With” for tips and more information.

What should I expect if I have been diagnosed with dysautonomia?

No one can know for sure what your life will look like living with dysautonomia. Symptoms vary from person to person. The severity of the condition varies from person to person – from mild and manageable to severe and disabling. The course of the condition changes too – in some people, symptoms are always present; in others symptoms appear for weeks or months or years, disappear, and then reappear. In other words, dysautonomia is unpredictable.

Because of all these variables, it’s important to find a healthcare provider who you are comfortable with and who is knowledgeable in dysautonomia. You may want to start a health diary to share with your healthcare provider. In this daily diary, you can record your symptoms, events that possibly triggered your symptoms, and how you are feeling emotionally. This information can help develop and tweak your plan of care.

What can I do to better live with dysautonomia?

To help manage your dysautonomia symptoms:

• Do not smoke or drink beverages containing alcohol.
• Eat a healthy diet.
• Drink a lot of water. Carry water with you at all times.
• Add extra salt to your diet. Keep salty snacks with you.
• Get plenty of sleep.
• Maintain a healthy weight.
• Keep your blood sugar within normal limits if you have diabetes.
• Listen to what your body is telling you it needs. For example, take breaks from work or school if your body is telling you it needs rest.
• If you feel dizzy, sit down, lie down, and/or raise your feet.
• Stand up slowly.
• Wear compression stockings and support garments to increase/maintain blood pressure
• Avoid sitting or standing for long periods of time.
• Avoid heat. Take lukewarm or cool baths and showers.
• Talk with your healthcare provider before taking any over-the-counter medicine or supplement.
• Ask your healthcare provider if you can drink caffeinated beverages or eat foods with artificial sweeteners. Caffeine should be avoided if you have a raised heart rate. Artificial sweeteners can cause migraines in some people.

Read other wellness tips for living with dysautonomia.

When should I call the doctor?

Contact your doctor if you experience symptoms of dysautonomia, especially frequent dizziness or fainting.

What questions should I ask my doctor?

If you have dysautonomia, you may want to ask your doctor:

• How serious is the type of dysautonomia I have?
• What part of my ANS does the disorder affect?
• What type of treatment and lifestyle adjustments are best for me?
• What signs of complications should I look out for?
• What might I expect to happen to my health in the future?
• What kinds of support groups are available?

To learn more about ongoing studies on dysautonomia, see:

• Dysautonomia Information Network. https://www.dinet.org/
• National Institutes of Health. Dysautonomia. ClinicalTrials.gov.