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Tolosa Hunt Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Tolosa Hunt Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Ophthalmoplegia Syndrome
  • Ophthalmoplegia, Painful
  • Ophthalmoplegia, Recurrent

Disorder Subdivisions

  • None

General Discussion

Tolosa-Hunt syndrome is a rare disorder characterized by severe headaches and pain around the sides and back of the eye, along with weakness and paralysis (ophthalmoplegia) of certain eye muscles. Symptoms usually affect only one side of the head (unilateral). In most cases, affected individuals experience intense sharp pain and paralysis of muscles around the eye. Symptoms subside without intervention (spontaneous remission) and recur without a distinct pattern (randomly). In addition, affected individuals may exhibit paralysis (palsy) of certain facial nerves and drooping of the upper eyelid (ptosis). Other symptoms may include double vision, fever, chronic fatigue, headaches, a feeling that one's surroundings are spinning (vertigo), pain in the joints (arthralgia), and/or abnormal protrusion of one or both eyeballs (exophthalmos). The exact cause of Tolosa-Hunt syndrome is not known, but the disorder is thought to be associated with inflammation of the areas behind the eyes (cavernous sinus and superior orbital fissure).

Resources

Lighthouse International
111 E 59th St
New York, NY 10022-1202
Tel: (800)829-0500
Email: info@lighthouse.org
Internet: http://www.lighthouse.org

National Headache Foundation
820 N. Orleans
Suite 411
Chicago, IL 60610-
USA
Tel: (312)274-2650
Fax: (312)460-9049
Tel: (888)643-5552
Email: info@headaches.org
Internet: http://www.headaches.org

American Autoimmune Related Diseases Association, Inc.
22100 Gratiot Ave.
East Detroit, MI 48021
Tel: (586)776-3900
Fax: (586)776-3903
Tel: (800)598-4668
Email: aarda@aarda.org
Internet: http://www.aarda.org/

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

AutoImmunity Community
Email: moderator@autoimmunitycommunity.org
Internet: http://www.autoimmunitycommunity.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  11/3/2008
Copyright  1987, 1989, 1997, 1998, 2005, 2008 National Organization for Rare Disorders, Inc.

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