Dysautonomia 101
Getting diagnosed with a chronic illness can be scary, frustrating, and confusing. Living with chronic illness can be a daily battle not just with your disease, but also with healthcare providers, coworkers, and even family members who struggle to understand the challenges you may face. At Vitassium, we seek to offer a safe space for you to ask questions and find helpful solutions.
Below are some common questions and answers about dysautonomia, as well as information about conditions such as Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Ehlers Danlos Syndrome, and Myalgic Encephalomyelitis (ME).
If you'd like a more in-depth explanation of dysautonomia, we encourage you to visit Dysautonomia International's website.
Who is at risk?
People of any age, gender, or race can be impacted.
Is dysautonomia isolated?
Dysautonomia can be seen alone. It can also occur secondary to other medical conditions, such as Sjogren’s, diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Lupus, and Parkinson’s. Additionally, patients who experience dysautonomia may also have Ehlers Danlos Syndrome (EDS) and gastroparesis.
Dysautonomia is not rare.
More than 70 million people worldwide live with various forms of dysautonomia.
Is there a cure?
Although there is currently no cure for any form of dysautonomia, groups like Dysautonomia International are funding research to develop better treatments, and hopefully someday a cure. Additionally, here are some helpful tips and resources available for when you are diagnosed.
Does my doctor know about it?
Maybe. 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.
Can dysautonomia be treated?
To help manage symptoms, patients are advised to do things like avoid sitting for long periods of time, treat contributing medical conditions and adopt a useful physical therapy routine. Additionally, it is often recommended to increase both fluid and salt intake in order to increase blood volume.*
Types of Dysautonomia that May Be Helped by Vitassium
Postural Orthostatic Tachycardia Syndrome (POTS)
POTS is estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. The condition can cause lightheadness, 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.
A 2021 study, published in the Journal of the American College of Cardiology, concluded that a high sodium diet could help reduce common POTS symptoms, including low blood volume, increased standing heart rate and increased norepinephrine (adrenaline) levels.
POTS can be diagnosed using orthostatic vitals (measurements of heart rate and blood pressure taken laying down, and then at a standing position for 2, 5 and 10 minutes) or a Tilt Table Test (TTT), and can be defined as a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension (low blood pressure upon standing). In children and adolescents, a revised standard of a 40 bpm or more increase has been adopted.
Orthostatic Hypotension (OH)
Orthostatic hypotension happens when the body cannot maintain proper blood pressure and causes sudden decrease in blood pressure when a person changes position, such as rising from a sitting or lying position to standing, or when standing motionless in one position. Symptoms of orthostatic hypotension may include lightheadedness, dizziness, or fainting (syncope). Orthostatic hypotension can be caused by many different diseases that impact the autonomic nervous system, which is the part of the nervous system responsible for regulating blood pressure.
Neurocardiogenic Syncope (NCS) or Vasovagal Syncope
NCS, also known as vasovagal syncope, is the most common form of dysautonomia, impacting 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 the frequent fainting attacks. Learn more about dysautonomia from Dysautonomia International.
Other Conditions
Ehlers Danlos Syndrome
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. Learn more about Ehlers Danlos Syndrome from the Ehlers Danlos Society.
Long Covid
"Long COVID" is an umbrella term for the long-term health effects that may happen after SARS-CoV-2 infection, such as organ and tissue damage that can occur during the acute infection, inflammation, autoimmunity, coagulation problems, or other complications. Often, Long COVID is compared to one of the most common forms of dysautonomia – POTS – due to orthostatic intolerance. In fact, POTS is currently the most common post-COVID diagnosis, although Long COVID can also cause other types of dysautonomia. Read more about Long COVID and Dysautonomia.
Myalgic Encephalomyelitis
Myalgic Encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a serious, debilitating, complex chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body's production of energy. ME/CFS can cause orthostatic intolerance in some patients. Read the CDC's definition of Myalgic Encephalomyelitis.
Sjögren’s
The autonomic nervous system is frequently affected by the autoimmune disease, Sjögren’s, which is the second most common cause of autonomic neuropathy. Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. Watch this video on Sjögren’s Syndrome and The Autonomic Nervous System.
Learn more about the science behind Vitassium.
*This has been shown to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension. Most individuals with POTS and some other forms of dysautonomia are advised by their physicians to consume 2-3 liters of hydrating fluids and 8-10 grams of salt per day. Check with your physician for your specific needs. For more severe cases, pharmacological treatments are also available. For an extensive overview of dysautonomia, its causes, symptoms and treatments, check out this guide from Dysuatonomia International.
Sources
- Abed, Howraa, Patrick A. Ball, and Le-Xin Wang. “Diagnosis and Management of Postural Orthostatic Tachycardia Syndrome: A Brief Review.” Journal of Geriatric Cardiology 9 (2012): 61-67.
- Grubb, Blair P. “Postural Tachycardia Syndrome.” Circulation: Journal of the American Heart Association 117 (2008): 2814-817