Dysautonomia is a term for a group of conditions that affect the autonomic nervous system. This system controls vital automatic processes such as blood pressure, heart rate, breathing and digestion. People with dysautonomia have trouble regulating these functions, which can lead to lightheadedness and fainting, an unstable heart rate and blood pressure, digestive problems and more.
Dysautonomia symptoms should be evaluated by your physician, since heart and other medical conditions can cause similar problems. Call 911 if you have chest pain, severe shortness of breath, fainting with an injury, fainting during exercise, or sudden weakness, numbness or trouble speaking.
Dysautonomia can occur on its own (primary) or as a result of another condition (secondary).
Forms of primary dysautonomia include:
Neurocardiogenic syncope
Postural orthostatic tachycardia syndrome (POTS)
Familial dysautonomia
Multiple system atrophy
Orthostatic intolerance
Dysautonomia can also develop along with conditions such as:
Traumatic brain injury
Post-concussion syndrome
Mast cell activation syndrome
Ehlers-Danlos syndrome
Chronic fatigue syndrome
Joint hypermobility syndrome
Multiple sclerosis
Parkinson’s disease
Rheumatoid arthritis
Diabetes
Lupus
Celiac disease
Lyme disease
How Common Is Dysautonomia?
Dysautonomia is relatively common. Dysautonomia International estimates that more than 70 million people worldwide live with some form of it (1). Even so, awareness of dysautonomia is still limited, and many people spend years and see several providers before getting a diagnosis.
There is no single cure for dysautonomia, and most treatment focuses on managing symptoms.
What Are the Symptoms of Dysautonomia?
People with dysautonomia often deal with headaches, fatigue, fainting, sensitivity to light and sound, a high or unstable heart rate, unstable blood pressure, dizziness, vertigo, nausea, brain fog and trouble thinking.
They may also have balance problems, chest pain, constipation or diarrhea, frequent urination, erectile dysfunction, trouble tolerating exercise, shortness of breath, sleep problems, trouble swallowing, tremors, mood swings, anxiety and depression.
Symptoms vary from person to person and tend to come and go over time. No two cases of dysautonomia are exactly alike.
Symptoms can be set off by heat, fatigue, dehydration, alcohol, exertion and emotional stress. Because stress can trigger symptoms, some people with dysautonomia are wrongly told their symptoms are “all in their head.”
What Causes Dysautonomia?
Dysautonomia has many possible causes. It may be a primary condition, part of a neurodegenerative disease, or a result of something like a viral infection, toxic exposure or injury. There is no single cause.
How Is Dysautonomia Diagnosed?
Dysautonomia is often evaluated with a tilt table test. You lie on a motorized table that tilts you to different angles while your heart rate and blood pressure are monitored. Abnormal changes in heart rate or blood pressure between lying down and being upright can point to dysautonomia.
Many people with secondary dysautonomia have tilt table results that don’t meet formal diagnostic criteria. Those criteria come from primary forms of dysautonomia. For example, POTS requires a heart rate increase of at least 30 beats per minute when upright, without a significant drop in blood pressure (more than 20 mmHg) (2). When dysautonomia develops after a concussion, an autoimmune disease or another condition, changes in autonomic function may not reach those cutoffs but can still contribute significantly to a person’s symptoms.
What Happens in the Nervous System With Dysautonomia?
Normally, you don’t have to think about breathing or digesting your last meal. These functions are handled by the autonomic nervous system, which keeps blood pressure steady, controls breathing, regulates body temperature and controls heart rate. It also controls digestion, sexual function, pupil size and much more. Nearly all of your vital functions are under autonomic control (3).
One of the autonomic nervous system’s most important jobs is making sure blood reaches every part of the body. To do that, it needs to know where your body is in space and where your head and body are in relation to gravity.
When you stand up, gravity pulls blood toward the ground. Your body senses the change in blood pressure through stretch sensors in the large arteries of the chest and neck, called baroreceptors. When blood pressure drops, these sensors stretch less, signaling the autonomic nervous system to tighten blood vessels and send blood back up to the brain (4).
Blood pressure sensors are only part of the picture. To regulate blood flow well, your brain also needs to know where your body is and where your head is in relation to gravity. It gets this information from sensors in your muscles and joints, which create an unconscious sense of body position called proprioception, and from your inner ear, which tells your brain where your head is relative to gravity and how it’s moving.
Some types of dysautonomia involve damage to the baroreceptors (5). In others, the immune system attacks autonomic nerve fibers. In conditions such as Ehlers-Danlos syndrome, blood vessels may stretch too easily, making it harder to keep blood pressure steady.
Research suggests that poor coordination between the blood pressure sensors, the body-position system and the inner ear’s balance system may play a role in many forms of dysautonomia (6).
Your brain uses maps to understand where your body is in relation to gravity, how your body parts are moving, and how much blood is needed for a task or position. There are vestibular maps, visual maps, body-position maps and maps of blood flow. When these maps don’t match, the nervous system may have trouble sending blood where and when it’s needed, including to the brain (7).
This mismatch may help explain many symptoms of dysautonomia. Reduced blood flow to the brain can cause dizziness, fatigue and brain fog. The body may try to make up for it by raising the heart rate, and surges of adrenaline can contribute to anxiety and chest pain (6).
The Inner Ear’s Role in Blood Pressure
Your inner ear does more than help you balance. Through a reflex called the vestibulosympathetic reflex, signals from your inner ear travel to blood pressure control centers in the brainstem and help adjust blood pressure and heart rate when you change position. This reflex works ahead of time. It responds to head movement before blood pressure has a chance to fall, while the baroreceptor reflex can take a second or two to react. That head start matters when you stand up quickly (8).
To use inner ear signals well, the brain has to clean them up. The inner ear’s motion sensors, the semicircular canals, give an imperfect signal: during steady turning, their signal fades, and when turning stops, it briefly reverses. The inner ear’s gravity sensors, the otoliths, can’t tell the difference between tilting your head and moving in a straight line. The brainstem and cerebellum solve these problems with a process called velocity storage, which combines and smooths these signals to estimate how your head is really moving and which way is down (8).
When velocity storage doesn’t work correctly, the brain can receive a false sense of motion. A 2022 study in the Annals of Clinical and Translational Neurology examined 53 people with vestibular syncope, meaning fainting triggered by vertigo (9). More than a third had repeated episodes, and about 13% had potentially life-threatening injuries from falls. Ménière’s disease and benign paroxysmal positional vertigo (BPPV) were the most common underlying inner ear disorders. Abnormal inner ear tests were common: 57.5% had abnormal results on a test of the otolith pathways (cervical vestibular-evoked myogenic potentials), and 31% had abnormal head impulse tests. About 1 in 5 also had orthostatic hypotension.
The researchers combined a model of velocity storage with the vestibulosympathetic reflex and the baroreceptor reflex to explain how this happens (9, 10). In this model, a false signal of moving downward can make the brain raise blood pressure when no change in position has actually happened. The baroreceptor reflex then overcorrects, slowing the heart and dropping blood pressure, which can cause fainting. A false signal of moving upward can lower blood pressure directly. Either way, a faulty motion signal from the inner ear and brain sets off the same reflex fainting seen in neurocardiogenic syncope. The authors concluded that vestibular syncope can occur with many different inner ear disorders and that careful evaluation is needed to help prevent repeated falls and serious injuries.
This research is at the core of how we approach dysautonomia. It shows that the inner ear, the brainstem and the cerebellum help control blood pressure, and that problems in how the brain processes motion and gravity can contribute to autonomic symptoms. It’s also why we measure these systems so carefully. Videonystagmography (VNG) records eye movements that reflect how the brainstem and cerebellum are processing inner ear signals, including velocity storage. The video head impulse test (vHIT) measures how well each semicircular canal is working. CAPS computerized posturography shows how well your brain uses inner ear, visual and body-position information to stay upright.
How Is Dysautonomia Usually Treated?
There is no current cure for primary dysautonomia. Secondary dysautonomia often improves when the underlying condition is treated.
Treatment usually focuses on reducing symptoms and may include medications to help regulate heart rate and increase blood volume, increasing fluids and salt when recommended by a medical provider, compression garments, exercise programs to build stamina, and counseling to help with the emotional challenges of living with a chronic condition. These treatments help many people manage their symptoms.
How the NeuroRescue Program Can Help
Our care is designed to work alongside your physician, cardiologist and other providers, never in place of them. Please don’t change or stop any medication, or make changes to salt or fluid intake, without talking with your medical provider.
One of the brain’s most important jobs is figuring out where you are in the world. It uses your inner ear to sense where your head is in relation to gravity and how it’s moving, your muscles and joints to sense where your body is and what it’s doing, and your eyes to sense where you are in relation to everything around you. Your brain combines all of this into a picture of where you are, so you can respond to the world around you.
Research suggests that many of the problems in dysautonomia may be linked to trouble combining information from the visual, vestibular and body-position systems, which can affect how well the brain regulates blood flow (11, 12). Because the inner ear and the brain’s motion-processing systems help control blood pressure, we look closely at how your inner ear reflexes, eye movements and balance are working as part of evaluating your dysautonomia.
The NeuroRescue Program is designed to address problems in the visual, vestibular and body-position systems and, just as importantly, how well they work together. Using a series of gradual challenges against gravity, our goal is to improve communication between your eyes, inner ear and body, to support better autonomic regulation. Some types of dysautonomia respond differently than others, and results vary from person to person.
Depending on your needs and test results, your program may include specific eye exercises (13), vestibular therapy (14), electrical stimulation (15), light therapy, also called photobiomodulation (16), and exercises in a virtual reality environment (17). Transcranial magnetic stimulation (TMS) has also been studied for autonomic function (18). At our clinic, TMS is provided by our psychiatric mental health nurse practitioner, who will evaluate whether it may be appropriate for you. Some programs include mild hyperbaric therapy as a structured recovery option between more demanding therapy sessions. The therapies we recommend are always chosen based on your testing and exam findings.
How the NeuroRescue Program Works
Your NeuroRescue Program begins with your Discovery Day. We start with a detailed history of your condition and your life on a timeline. This helps us understand the factors that may have contributed to where you are now, and identify related conditions that may be making it harder to move forward.
We measure how your visual, vestibular and balance systems are working through computerized analysis of your eye movements, inner ear reflexes and balance under different conditions. Our testing includes videonystagmography and saccadometry to measure several types of eye movements, the video head impulse test to measure inner ear reflexes, and CAPS computerized posturography to assess your balance under different sensory conditions. We also use NeuroSensoryMotor Integration testing to evaluate hand-eye coordination and cognition, and Virtualis testing to assess dynamic eye tracking and your perception of vertical in a virtual reality environment.
We combine this with a thorough physical and neurological exam of your sensory, motor, autonomic and cognitive systems. We also review any relevant lab work, imaging and prior testing, and integrate it with our findings.
Together, this helps us understand which parts of your nervous system are working well, which are struggling, and how quickly they tire. We use that information to design your personal NeuroRescue Program, aimed at improving function in the systems that need support and helping them work together. Our testing also helps us decide when to push and when to let you rest, which matters when pushing too hard can leave you wiped out for days.
Our goal is to help you build tolerance for being upright and active, so you can get through your day with more energy and fewer symptoms.
Your Next Step
Living with dysautonomia can be exhausting, and it’s often invisible to the people around you. You don’t have to keep pushing through alone. To find out if the NeuroRescue Program is right for you, contact one of our patient care coordinators to schedule your Discovery Day.
