What is Dysautonomia?
Dysautonomia is an umbrella term referring to a group of several medical conditions that cause a malfunction of the Autonomic Nervous System (ANS). This is the part of the nervous system that controls automatic processes or the things that your body does without you having to think about them, such as heart rate, blood pressure, digestion, dilation, and constriction of the pupils of the eye, kidney function, and temperature control. Dysautonomia can be acute and reversible, as in Guillain-Barre syndrome, or non-reversable, chronic and progressive.
The autonomic nervous system is extensive, traveling from your brain to the spinal cord and finally–by way of the tenth cranial nerve / vagus nerve, and small fiber autonomic nerves– out to every organ, gland, and blood vessel in your body. It should be noted that oral, head and neck cancer patients that receive radiation as part of their treatments, can have varying degrees of scatter radiation to these structures, and years after treatment develop some of the manifestations of dysautonomia. When the ANS doesn’t work as it should, it can cause heart and blood pressure problems, trouble breathing, and loss of bladder control among other symptoms.
Is Dysautonomia Rare?
Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. 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. As previously stated, head and neck cancer patients treated with radiation can years after treatment develop many of the physical issues attributed to dysautonomia.
What are the Types of Dysautonomia?
The many types of dysautonomia include these as the most revalent:
● Postural Orthostatic Tachycardia Syndrome (POTS) – estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause light-headedness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity, and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
● Neurocardiogenic Syncope (NCS) – NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones, and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school, and social activities due to frequent fainting attacks. This can occur to a lesser degree where chronic dizziness is an issue and does not go all the way to fainting. The condition can also be described when baroreflex disfunction is a problem. The two can manifest is similar ways and both occur simultaneously.
● Multiple System Atrophy (MSA) – MSA is a fatal form of dysautonomia that occurs in adults ages 40 and up. It is a neurodegenerative disorder with some similarities to Parkinson’s disease, but unlike Parkinson’s patients, MSA patients usually become fully bedridden within 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide.
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s. (1,3 ) But in the context of those visiting the oral cancer website, it is a cascade event from head and neck radiation most often.
What Causes Dysautonomia?
Dysautonomias, or malfunctions of the autonomic nervous system, can happen for many reasons. Primary dysautonomias occur due to genetic or degenerative diseases that affect the brain and nervous system. Secondary dysautonomias happen as a result of an injury or another type of condition. Scatter radiation from head and neck cancer treatments occurs frequently, though it may take years from the radiation exposure to manifest. Patients treated with less targeted XMRT radiation have a higher risk of developing this, those with newer IMRT radiation treatments or proton beam radiation have less scatter radiation. This is highly dependent on the individual mapping of the radiation targets, and proximity to sensitive nerve structures near the base of the skull.
Of the Americans who survive head and neck cancer, around 4% develop lower cranial nerve deficits after radiotherapy , and in those with persistent disease who require rescue salvage surgery, the rate of cranial nerve complications rises substantially to 40%.
Who Can Get Dysautonomia?
People of any age, gender, or race can be impacted by Dysautonomia.
What are the Symptoms of dysautonomia?
People living with various forms of dysautonomia have trouble regulating some of the ANS systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
● Balance Problems
● Chest Pain/Discomfort
● Nausea, Vomiting, GI Trouble
● Irregular Heart Rate and Blood Pressure
● Fainting/ Loss of Consciousness
● Erectile Dysfunction
● Noise and Light Sensitivity
● Lightheadedness, Dizziness, Vertigo
● Visual Disturbances
● Sweat less than normal, or not at all
● Swings in Body Temperature
● Difficulty Swallowing
● Brain Fog/ Forgetfulness
● Sleep Disturbances
● Frequent Urination, Incontinence
● Low Blood Sugar
● Exercise intolerance
What Kinds of Doctors Treat Dysautonomia?
Patients with autonomic disorders usually require a multi-disciplinary team, as autonomic disorders can impact almost every organ and system of the body. While each specialist will have his or her own areas of expertise, it is still important for each member of the patient’s team to be familiar with the most up-to-date information on the patient’s autonomic disorder.
Is There a Cure for Dysautonomia?
There is no cure for dysautonomia. Secondary forms of dysautonomia may improve with treatment of the underlying disease. The best that can be done now is to deal with the various manifestations of it and their individual symptoms. Treating symptomology is not the same as treating the disease and is a coping mechanism not a cure. Lifestyle changes will be necessary for many of the symptoms to be reduced or mitigated.
In many cases treatment of primary dysautonomia is symptomatic and supportive, meaning the treatment includes treating the symptoms of the disease. Secondary forms may improve with treatment of the underlying disease. For instance, measures to combat orthostatic hypotension include elevation of the head of the bed, water bolus (rapid infusion of water given intravenously), a high-salt diet, and drugs such as fludrocortisone and midodrine. (NIH)
Even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life. (1, 2, 3, 4, 5)
What is the Prognosis for Dysautonomia?
The outlook for individuals with dysautonomia depends on the particular diagnostic category. People with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. After living with the progressive disease and nerve damage for many years, death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.
Join the Oral Cancer Support Forum
If you are experiencing dysautonomia as a result of treatment, join the Oral Cancer Support Forum. This forum is a location where interaction between individuals with oral cancer, friends and family members who are supporting those with cancer, survivors, caregivers, and even interested members of the public, can meet to share experiences and ideas, ask questions, and hopefully, find inspiration from those who have traveled this path before them. It is designed to facilitate the exchange of dialogue between those concerned with oral cancer and provide a “human” component to dealing with the disease. Others may have helpful workarounds for dealing with the long-term effects of radiation cascade nerve damage.
Join us today to find information and most importantly, hope. Register Free Today