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Millions Have Dysautonomia, Most Don't Know About It

By HERWriter
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Millions with dysautonomia know nothing about it Auremar/PhotoSpin

Dysautonomia has been a mystery illness for over 200 years but since the autumn of 2010, it has been my reality. My symptoms included lightheadedness, chronic pain, extreme fatigue and body weakness, anxiety/panic, frequent headaches, fainting, and chronic delayed gastric emptying (gastroparesis).

Finally, in late January 2014, I was diagnosed with a type of dysautonomia called neurocardiogenic syncope.

Dysautonomia International reports that the dysautonomia conditions affect millions of people globally, and many of these people have yet to be diagnosed, or have been misdiagnosed with another illness.

The organization explains that the autonomic nervous system (ANS) is responsible for functions like increasing and decreasing heart rate and aiding in gastrointestinal function.

Every time you stand up, gravity pulls your blood down to your lower extremities, particularly your legs. In a fully-functional ANS, the brain then compensates by sending signals to increase your heart rate and to tighten the blood vessels in the legs, which forces the blood back up toward the brain.

However, in an individual with neurocardiogenic syncope, the body does not carry out this process correctly.

Dr. Blair Grubb explains that syncope, the medical term for fainting, occurs when the blood pressure and heart rate are not properly regulated. (2)

Unfortunately, I have these fainting episodes unpredictably. I usually have put my body through either strenuous physical exertion, or an abrupt change in position, which can be as simple as getting out of bed or standing up from a seated position.

My heart begins to race and my blood pressure drops. Blood pools in my legs, which results in the brain losing blood supply, which in turn causes loss of consciousness, or fainting.

This reaction by the body is called orthostatic intolerance (OI), and is what Dysautonomia International calls the hallmark of generalized dysautonomia.

To determine a person’s susceptibility to syncope due to poor autonomic control, a patient is given a tilt table test.

Dr. Grubb explains that in this test, the individual is monitored closely while strapped to a special type of table, which slowly inclines upward to an angle between 60 and 80 degrees. These shifts in position occur gradually over the time span of about 30 minutes.

With normal autonomic function, the body should be perfectly able to tolerate these changes. However, if an autonomic condition is present, this otherwise mild stress will cause a fall in blood pressure, sharp increase in heart rate, and in some cases, syncope.

During my tilt table test this past January, the nurses in the room did not need to continue administering the test for the full half hour allotted. After one shift or tilt of the table, I not only exhibited the symptoms, but experienced near-complete syncope after just three minutes on the table itself.

Since the test, I have started taking a drug called Midodrine, which works as a stimulator for the nerve endings, which tell the blood vessels to constrict.

At the suggestion of my doctor, I have also increased the salt intake in my diet to keep my blood pressure up, and have found some relief and improvement with the use of compression stockings to further compress the blood vessels in my legs.

Prognosis and treatment will vary based on the type of dysautonomia, its severity, and its longevity. Every case is different and must be approached as such.

There is no cure for dysautonomia, and primary treatment usually merely attempts to suppress the symptoms. Research continues to strive for new ways to confront and someday put an end to the dysautonomia conditions.


1. Fogoros, Richard N. Dysautonomia: A Family of Misunderstood Disorders. About.com Heart Disease. Web. 19 May 2014.

2. Grubb, Blair P. Neurally Mediated/Neurocardiogenic Syncope. National Dysautonomia
Research Foundation. Web. 10 May 2014.

3. Autonomic Disorders. National Dysautonomia Research Foundation. Web. 10 May 2014.

4. NINDS Dysautonomia Information Page. National Institute of Neurological Disorders and Stroke. Web. 11 May 2014.

5. What is Dysautonomia? Dysautonomia International. Web. 17 May 2014.

Reviewed June 20, 2014
by Michele Blacksberg RN
Edited by Jody Smith

Add a Comment2 Comments

EmpowHER Guest

A thought-provoking, well-written article--with just the right amount of medical terminology, that will go a long way towards helping people and physicians diagnose this condition. It was very brave and wise of the author to share her story.

June 23, 2014 - 7:05am
HERWriter (reply to Anonymous)

Thank you so much, Dave!

June 29, 2014 - 7:32pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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