Dysautonomia is a term used to describe various disorders of the autonomic or automatic nervous system. These disorders usually involve a variety of symptoms in many different organ systems since the autonomic nervous system plays a role in all of them. It commonly affects the cardiac, gastrointestinal, neurological and pulmonary systems but can also affect several others. This invisible illness may be one of the most misdiagnosed and misunderstood medical conditions of all time. One of the biggest obstacles patients find in seeking treatment for their Autonomic Dysfunction is the lack of knowledge and treatment available in our communities and community based health care.
Dysautonomias are classified as either primary in which there is no identifiable cause, or secondary, in which a patient has an underlying medical condition that has triggered these dysfunctions.
Since the autonomic nervous system plays an essential role in all of the bodies automatic functions, or functions you do not think about or have control over, the spectrum of symptoms are vast. This part of your nervous system is responsible for things like heart rate, blood pressure regulation, gastrointestinal function, sweat production/temperature regulation, involuntary eye movement (blinking/pupil dilation), mental clarity, sensory perception and peripheral nerve function to name a few. The symptoms related to these dysfunctions can vary greatly in severity. Some are very mild whereas others are severe and debilitating.
Patients with autonomic dysfunctions struggle with finding local healthcare professionals that understand this chronic condition, or who are willing to learn and direct patients to the appropriate specialists. Unfortunately there is no cure but it is essential for underlying conditions and associated symptoms to be diagnosed and managed. The longer these problems go unmanaged the more deconditioned a patient becomes. This can make the road to recovery longer and more difficult to manage.
To date there are more than 15 different types of dysautonomias. The most common, and in some cases most complex is postural orthostatic tachycardia syndrome. The other two most common forms are neurocardiogenic syncope (also known as vasovagal syncope) and neurogenic orthostatic hypotension.
There are several common coexisting conditions in patients with Dysautonomia. They include:
- Autoimmune Encephalopathy
- Autoimmunity (autoimmune autonomic ganglionopathy-AAG)
- Celiac Disease
- Chronic Regional Pain Syndrome (CRPS)
- Cranio-cervical Instability (CCI)
- CSF Leak Syndrome
- Diabetes Mellitus
- Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome)
- Guillain-Barre Syndrome
- Irritable Bowel Syndrome
- Mast Cell Activation Syndrome
- Median Arcuate Ligament Syndrome (MALS)
- Migraine Headache
- Paraneoplastic autonomic neuropathy
- Small Fiber Neuropathy
- Systemic Lupus
- Sjogren’s Syndrome
- Small Intestinal Bacterial Overgrowth (SIBO)
- May Thurner Sndrome
- Thoracic Outlet Syndrome
Due to the fact that Dysautonomia effects so many different functions of the body the symptoms involved can vary greatly. Many of the symptoms that occur are not obvious, visible symptoms-they occur internally. Some traits are common and seen in most patients with Dysautonomia, some are not so common and patient specific. They can be hard to predict and can come and go at a moment’s notice. Some symptoms are mild and tolerable while others are severe and debilitating. Patients can also experience flare ups of their symptoms which are usually caused by some sort of trigger such as heat, pain, stress, overexertion and several others.
Some of the most common symptoms include:
- Difficulty standing upright-especially for long periods of time
- Palpitations or very irregular heartbeats that can be fast or slow
- Feeling light headed, dizzy or even fainting
- Trouble breathing
- Chest pain/discomfort
- High or low blood pressure (usually low)
- Gastrointestinal problems such as nausea, constipation and diarrhea
- Poor appetite
- Exercise intolerance
- Visual disturbances
- Overactive senses (especially to noise and light)
- Temperature regulation problems
- Brain fog or trouble with concentrating and remembering things
- Frequent urination
- Trouble sleeping or staying asleep
- Mood swings
These symptoms can appear in combinations that can make them very hard to identify leading to frequent misdiagnosis.
There can be a lot of various tests involved with Dysautonomia and it can be overwhelming at times. Some will involve a physical exam in the office while others may require lab work or imaging. Some common testing that patients undergo include:
- Breathing Tests: These tests typically involve doing different breathing exercises and maneuvers to see if a patient experiences changes in their heart rate or blood pressure.
- Tilt Table Test: One of the most common tests involved with Dysautonomia. This test typically involves being positioned on a table in the upright position for up to 20 minutes while watching your blood pressure and heart rate for changes. Normally your body should narrow your blood vessels and increase your heart rate to make up for the drop in blood pressure, but in patients with Dysautonomia this does not happen normally and can cause several symptoms including dizziness and fainting.
- Gastrointestinal tests: Patients with Dysautonomia commonly have slow movement of food and fluids through their intestine so gastric emptying tests are commonly used to diagnose this. Other tests may include upper and lower endoscopy, hydrogen breath test, gastric emptying study, an ultrasound of the celiac arterial plexus and methane breath test.
- Quantitative Sudomotor Axon Reflex Test: Commonly referred to as a sweat test, this study evaluates how the nerves that control your sweat glands respond to stimulation. A small electrical current passes through capsules placed on your forearm, upper and lower leg and foot, while a computer reads the response of your nerves and sweat glands. It is common to feel a warm or tingling sensation during this test.
- Urinalysis and Bladder Function Tests: Some patients with bladder or urinary symptoms undergo a series of urine or bladder tests to evaluate the bladders function. They may also order an ultrasound which will take images of the bladder to make sure there are no signs of infection, tumors or other abnormalities and urodynamic studies
- Cardiopulmonary Exercise Testing (CPET): This testing will involve some form of exercise, usually a stationary bicycle, to evaluate your heart and lung function while exercising.
- Neurocognitive Assessment: This test usually involves a computer test with various questions that will evaluate your ability to concentrate and remember things.
There is usually no cure for Dysautonomia. The secondary forms can sometimes be improved with treatment of the underlying cause but for most cases, especially primary Dysautonomia cases, the treatment is symptom based.
The most common frontline treatment usually involves lifestyle changes that patients work hard to carry out in their day to day lives. These include drinking plenty of fluids, eating a lot of salt, wearing compression stockings, eating small frequent low carbohydrate/high protein meals and aerobic exercises that focus on your lower extremities which are usually done in a seated position.
Your doctor may discuss different medications that can be used to regulate your heart rate (Beta Blockers, Calcium Channel Blockers), increase your blood pressure (Midodrine), hold on to more of the fluid your drinking (Fludrocortisone, Desmopressin) , combat fatigue (Stimulants) and relieve nausea to name a few. In some instances patients with Dysautonomia may require fluids to be give through an intravenous line to combat severe dehydration and flare ups.
Any new diagnosis can be scary, even more so when it seems like there are very few medical providers or resources out there to help you. The good news is that every day more and more research is being done and more resources are being made available to patients living with this condition. It is a long road and can at times have a lot of ups and downs. Once a patient is able to establish a strong care team of providers that are willing to learn about this complex condition they can begin the process of developing a plan. They can start working towards improving their symptoms and regaining quality of life.
Already Scheduled for an Appointment?
Given the complicated nature of Dysautonomia, our appointments tend to take longer than average clinic visits. We also will need to do a few baseline assessments such as an EKG and three different sets of vital signs while you are lying, sitting and standing taken several minutes apart. Given this, we recommend planning on being in the clinic for a total of 1-2 hours for your visit. It is always best to wear loose and easy to remove clothing to make performing your EKG easier. There is also an in-depth new patient questionnaire that you may have already received that is crucial to Dr. Mobarek during your new patient appointment. If you have not received this form, please download and print it from the following link.