#multiple system atrophy

For those of you frustrated that POTS is the only type of dysautonomia that seems to get talked about, or for anyone wanting to learn more about chronic illnesses, here's a great resource.

This page is a comprehensive introduction to the 15 forms of dysautonomia...

"Forms of dysautonomia include: Postural Orthostatic Tachycardia Syndrome, Orthostatic Hypotension, Vasovagal Syncope, Inappropriate Sinus Tachycardia, Autoimmune Autonomic Ganglionopathy, Baroreflex Failure, Familial Dysautonomia, Pure Autonomic Failure, and Multiple System Atrophy."

to all chronically ill and disabled people ever, (gives you so many spoons), here. for these trying times.

October is Dysautonomia awareness month.

Dysautonomia is an umbrella term (for multiple medical conditions) that can cause malfunctioning in someone’s autonomic nervous system.

The autonomic nervous system is responsible for a multitude of bodily functions, such as the regulation of blood pressure, heart rate, digestion, temperature control, etc.

I want to make one thing very clear: dysautonomia is not rare. It is very common and massively under-diagnosed. There is no cure for dysautonomia and managing symptoms is the focus of treatment.

Dysautonomia Resources

*My favorite book about dysautonomia:

•The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Kelly, et al.

*Websites:

•The Dysautonomia Project: https://thedysautonomiaproject.org/

•Dysautonomia International: http://www.dysautonomiainternational.org/index.php

From this fact sheet by Dysautonomia International...

Dysautonomia is pronounced dis’-oughta-know’-me-uh. Dysautonomia is a group of neurological conditions that impact over 70 million people around the world.

Dysautonomia means “dysfunction” of the “autonomic nervous system.” The autonomic nervous system controls all of your involuntary bodily functions like your heart rate, breathing, maintaining proper blood pressure, digestion, sleep cycles, body temperature control, sweating and more.

There are many different types of dysautonomia, including, but not limited to, neurocardiogenic syncope, postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, orthostatic hypotension, autoimmune autonomic ganglionopathy, pure autonomic failure, and multiple system atrophy.

Dysautonomia can also occur secondary to other diseases. Diseases that commonly cause autonomic nervous system dysfunction include all types of diabetes, Sjögren’s syndrome, celiac disease, multiple sclerosis, and Parkinson’s.

Due to the malfunctioning of the autonomic nervous system in people with dysautonomia, symptoms can include tachycardia (a heart rate that is too fast), bradycardia (a heart rate that is too slow), poor blood flow to the heart, brain and other organs, chest pains, lightheadedness, fainting, nausea, a gastrointestinal tract that moves too fast or too slow, blood pooling in the extremities, shaking, too much or too little sweating, cognitive impairments (“brain fog”), headches, and much more.

Some, but not all, dysautonomia symptoms can be minimized by laying the patient down. This helps restore normal blood flow to the brain and chest area. This is why it can be so difficult for dysautonomia patients to stand sometimes.

Dysautonomia comes with a wide range of disability – from mild, to very disabling, to death in rare cases. While some dysautonomia patients can continue with work, school and social activities, many cannot, even with the best treatment currently available.

Some dysautonomia patients will get better over time, by either learning to manage their symptoms better, or by actually recovering from the illness. However, some remain sick with dysautonomia indefinitely, and some progressively get worse.

Many dysautonomia patients experience years of diagnostic delay, and have difficulty finding physicians to treat their dysautonomia once they are diagnosed, because most doctors have not received training on how to diagnose and treat autonomic nervous system disorders.