Dysautonomia, also known as autonomic dysfunction, is a group of disorders that affect the autonomic nervous system (ANS). Many people with EDS or HSD also have a type of dysautonomia. Common signs of dysautonomia include:
- Tachycardia (fast heart rate)
- Hypotension (low blood pressure)
- Dizziness/lightheadedness
- Gastrointestinal dysmotility (problems moving food through the digestive system)
- Disturbed bladder function
- Temperature and sweating dysregulation
- Sleep problems
Introduction to the Nervous System
To better understand dysautonomia, it is helpful to understand what the autonomic nervous system does. There are two major parts of the nervous system.
The central nervous system is made up of the brain and spinal cord. It serves as the control center for the body.
The peripheral nervous system is the network of nerves that branch off from the spinal cord and extend throughout the body. These nerves connect the central nervous system to other parts of the body, providing communication between the brain and the rest of the body.
Peripheral Nervous System:
The peripheral nervous system is further divided into two parts.
The somatic nervous system connects the central nervous system to the muscles and skin. The somatic nervous system controls movement and carries sensory information to the brain, allowing us to interact with and respond to our environments. It controls voluntary actions that we do consciously, such as walking.
The autonomic nervous system connects the central nervous system to many organs throughout the body. It regulates many involuntary bodily processes that we do not consciously think about, including heart rate, blood pressure, body temperature, sweating, digestion, metabolism and bladder control.
Autonomic Nervous System:
There are two parts of the autonomic nervous system.
The sympathetic nervous system prepares the body for a stressful situation. This is often called the body’s “fight or flight” response. The sympathetic nervous system directs energy to processes that can help a person respond to a threat while slowing down other processes that are less important during an emergency.
In contrast, the parasympathetic nervous system helps to relax the body and conserve energy. This is known as the “rest and digest” state.
Dysautonomia
Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system. Many people with EDS or HSD also have a type of dysautonomia. There are different types of dysautonomia with different symptoms.
People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright. The two most common types of orthostatic intolerance are:
- Orthostatic hypotension (OH) — low blood pressure on being upright
- Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure
Symptoms of dysautonomia
- Tachycardia (fast heart rate)
- Palpitations (feeling the heart racing or pounding)
- Hypotension (low blood pressure)
- Lightheadedness
- Presyncope (a sense of being about to faint)
- Syncope (fainting)
- Blurred vision
- Brain fog (problems with concentration and memory)
- Headaches
- Chest pain
- Shakiness
- Chronic fatigue
- Exercise intolerance and feeling worse after exercise
- Swelling and/or discoloration of the legs after standing for short periods of time
- Cold, discolored hands and feet
- Temperature dysregulation
- Sweating
- Sleep disturbance
- Gastrointestinal issues
- Nausea
- Bladder dysfunction
Diagnosis:
When evaluating someone for dysautonomia, it is important to consider:
- Symptoms
- Triggers
- Factors that can change the symptoms
- Impact on daily life
- Possible causes
- Family history
A simple standing test can help assess changes in heart rate and blood pressure when standing. Testing should be done in a quiet room at a comfortable temperature. The person should lie down to rest for 5 minutes before the testing begins. A tilt table test may also be used to assess a person in more detail. During the test, the person lies on an adjustable table that can tilt upright to measure the effect of positional changes on heart rate and blood pressure.
Other types of testing may include:
- Electrocardiogram (ECG)
- Thyroid function test Hematocrit (included in the complete blood count report)
- Blood pressure and heart rate monitoring
- Echocardiogram
- Exercise stress testing
- Sweat testing
- Plasma epinephrine and norepinephrine levels when lying down and standing
- 24-hour urine sodium test
Diagnosing POTS
POTS is diagnosed when a person has all of the following:
- Frequent symptoms that get worse when standing (including lightheadedness, palpitations, tremor, generalized weakness, blurred vision, exercise intolerance, and fatigue)
- An increase in heart rate of ≥ 30 beats per minute when moving from lying down to standing (or an increase of ≥ 40 beats per minute in people 12 to 19 years old)
- Absence of orthostatic hypotension (meaning there is not a > 20 mm Hg drop in systolic blood pressure when moving from lying down to standing)
Diagnosing OH
OH is diagnosed when a person has either of the following:
- A decrease in systolic blood pressure of ≥ 20 mm Hg within 3 minutes of standing or head-up tilt
- A decrease of diastolic blood pressure of ≥ 10 mm Hg within 3 minutes of standing or head-up tilt
Management:
Dysautonomia can be managed by making lifestyle adaptations, such as:
It is important to identify any triggers that could be making autonomic symptoms worse. Triggers may include:
- Medication side effects
- Dehydration
- Hot environments
- Exercise
- Physical labor
- Alcohol or caffeine intake
- Carbohydrates
- Illness or infection
- Stress
- Pain
- High altitude
- Long periods of rest
- Surgery
- Allergic reactions
Certain medications can worsen symptoms of dysautonomia, such as medications that increase the heart rate. These medications include:
- Stimulants
- Diuretics
- Norepinephrine reuptake inhibitors
Discuss with your doctor whether any of your medications could be making your symptoms worse.
Many people with dysautonomia have hypovolemia, or low blood volume. Increasing fluid and electrolyte intake can help increase blood volume. Electrolytes (such as sodium, potassium, and chloride) help maintain the fluid balance in the body. Sodium is especially important for this because it helps the body retain water. Water is attracted to sodium, so increasing sodium intake causes more water to stay in the body.
People with dysautonomia may be told to drink more fluids and consume more salt. Salt intake can be increased by adding more salt to food or by using electrolyte drinks and salt tablets. Increasing fluid and salt intake is not appropriate for everyone, particularly for those with high blood pressure, heart disease, or kidney disease. Be sure to talk with your doctor about how much fluid and salt is right for you.
Many people with dysautonomia experience blood pooling, which occurs when blood collects in the legs and hands rather than being pumped back to the heart. Compression clothing is tight–fitting clothing that can help reduce blood pooling by pushing blood back toward the heart. There are many different types of compression clothing, including socks, stockings, leggings, full body suits, and abdominal binders.
After we eat, blood is sent to the stomach for digestion. This may result in a drop in blood volume after eating. Some people with dysautonomia find that their symptoms are worse after eating a high–carbohydrate meal. It can be helpful to eat smaller meals more frequently throughout the day to reduce changes in symptoms after eating.
People with orthostatic intolerance experience an increase in symptoms when standing. It can be helpful to sit down while doing daily activities, such as loading the dishwasher, preparing food, or showering.
Some people with dysautonomia find it helpful to elevate their legs when resting. This can help reduce blood pooling in the legs.
Exercise is an important part of managing dysautonomia, as well as for managing EDS and HSD. However, these conditions may make it more challenging to exercise. Exercise intolerance may cause a person to become deconditioned due to inactivity. Deconditioning can further worsen a person’s symptoms, so it is important to work with a physical therapist to find appropriate ways to stay active.
Since being upright is a trigger for people with dysautonomia, it is helpful to start with exercises that involve sitting or lying down. Exercise frequency, duration, and weight can be gradually increased over time.
The autonomic nervous system is involved in temperature regulation and sweating, so people with dysautonomia sometimes feel very hot or very cold. Cooling scarves, pillows, and vests can help a person cool down when they are feeling too hot.
Many people with dysautonomia have trouble sleeping. It is helpful to practice good sleep hygiene, which includes:
- Avoiding large meals and caffeine at night
- Exercising during the day
- Creating a comfortable sleeping environment
- Not using technology in bed
- Using relaxation and breathing techniques
The symptoms of dysautonomia may get worse with stress, so it can be helpful for people with dysautonomia to practice stress-relieving techniques to limit the effect of stress on symptoms.
If lifestyle changes are not effective at improving a person’s symptoms, medications may be used to help with dysautonomia. Medications used to manage dysautonomia often focus on:
- Increasing fluid volume
- Narrowing the blood vessels
- Improving the function of the gastrointestinal system and bladder
- Balancing the actions of the parasympathetic and sympathetic nervous systems
FAQs:
More research is needed to better understand the relationship between EDS, HSD, and dysautonomia. Researchers have suggested several possible reasons why people with EDS or HSD may have dysautonomia. These reasons are related to:
- Low blood pressure
- Increased blood pooling
- Low circulating blood volume
- Medication side effects
- Elevated circulating catecholamines
- Autoimmunity
- High levels of histamine
- Problems with the brainstem and spinal cord
Your primary care provider or GP may be able to identify if you have a heart rate or blood pressure problem by checking your pulse and your blood pressure while you are lying down and while you are standing up. They may also want to monitor your heart rate and blood pressure over 24 hours or longer to see what is happening to your heart rate and blood pressure when you experience symptoms. If your primary care provider or GP needs assistance, they can refer you to a specialist with more experience in this area, such as a cardiologist or neurologist.
Certain things can worsen the symptoms of dysautonomia, such as:
- Dehydration
- Skipping meals
- Consuming large meals
- High amounts of caffeine
- Hot showers, hot tubs, and hot environments
- Standing still for long periods of time
- Periods of inactivity
You can keep a symptom log to identify what triggers your symptoms. There are apps for this, or you can track these things on paper:
- Daily activities
- Food and drinks consumed
- When symptoms occur and what they are
- What you tried to manage your symptoms
- How effective the chosen management strategy was at relieving your symptoms
POTS is a disorder of the autonomic nervous system. The autonomic nervous system regulates how fast and strong the heart beats. Most people with dysautonomia have a structurally normal heart. POTS does impact how the heart beats, but it is more accurately thought of as a neurological disorder rather than a heart condition.
Resources:
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