Dysautonomia

What is dysautonomia?
Dysautonomia refers to a disorder of autonomic nervous system (ANS) function. Most physicians view dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive ANS activities also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Dysautonomia also can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson’s disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia. Hallmarks of generalized dysautonomia due to sympathetic failure are impotence (in men) and a fall in blood pressure during standing (orthostatic hypotension). Excessive sympathetic activity can present as hypertension with a rapid pulse rate.

Is there any treatment?
There is no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, frequent small meals, a high-salt diet, and drugs such as fludrocortisone, midodrine, and ephedrine.

What is the prognosis?
The outlook for patients with dysautonomia depends on the particular diagnostic category. Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.

What research is being done?
The NINDS supports and conducts research on dysautonomia. This research aims to discover ways to diagnose, treat, and, ultimately, prevent these disorders.

Select this link to view a list of studies currently seeking patients.

Organizations
National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55066
http://www.ndrf.org/
651-267-0525

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
https://www.rarediseases.org
203-744-0100, Voice Mail 800-999-NORD (6673)

Dysautonomia Foundation
315 W 39th Street, Suite 701
New York, NY 10018
https://www.familialdysautonomia.org
212-279-1066

Familial Dysautonomia Hope, Inc. (FD Hope)
121 South Estes Drive, Suite 205-D
Chapel Hill, NC 27514
http://www.fdhope.org/
919-969-1414

Dysautonomia Youth Network of American, Inc.
1301 Greengate Court
Waldorf, MD 20601
https://www.dynakids.org
301-705-6995

The Multiple System Atrophy Coalition
8311 Brier Creek Parkway, Suite 105-434
Raleigh, NC 27617
https://www.multiplesystematrophy.org/
866-737-5999

This information was developed by the National Institute of Neurological Disorders and Stroke, National Institutes of Health.

Office of Communications and Public Liaison, National Institute of Neurological Disorders and Stroke, National Institutes of Health. NINDS Dysautonomia Information Page. Available at: https://www.ninds.nih.gov/health-information/disorders/dysautonomia. Last accessed April 24, 2023.

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