Pseudotumor Cerebri

National Organization for Rare Disorders, Inc.

It is possible that the main title of the report Pseudotumor Cerebri 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.


  • Benign Intracranial Hypertension
  • Idiopathic Intracranial Hypertension (Primary Intracranial Hypertension)
  • Secondary Intracranial Hypertension

Disorder Subdivisions

  • None

General Discussion

Intracranial Hypertension (Pseudotumor cerebri) is characterized by increased pressure inside the skull. Intracranial means inside the skull and hypertension means high fluid pressure. Basically, the pressure of the fluid that surrounds the brain (cerebrospinal fluid or CSF) is too high. Elevated CSF pressure produces severe headache and often visual difficulties, which, if left untreated can result in loss of vision or blindness.

Pseudotumor Cerebri and Benign Intracranial Hypertension are both former names for Intracranial Hypertension (IH) which are now considered inaccurate. These names do not adequately describe the disorder and downplay the seriousness of IH. There are two categories of IH: Primary Intracranial Hypertension and Secondary Intracranial Hypertension.

Primary Intracranial Hypertension, also known as Idiopathic Intracranial Hypertension (IIH), occurs without known cause. This form most often occurs in young, overweight, females in their reproductive years (ages 20-45).

Secondary Intracranial Hypertension has an identifiable, causative agent, including drugs
(such as tetracycline, lithium, Vitamin A-derived oral acne medications, and steroids, especially during withdrawal), growth hormone treatments, excessive ingestion of Vitamin A, sleep apnea and certain systemic diseases such as lupus, leukemia, kidney failure (uremia), meningitis and dural venous sinus thrombosis. Many other causes have been suggested in the medical literature but have not yet been confirmed as true causes.

Although many factors are known to trigger the disease, the mechanism by which IH occurs, in either Primary or Secondary forms, is not known. In many cases, either type of IH may be chronic.


National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981

Pseudotumor Cerebri Support Network
3521 Westbay Drive
Powell, OH 43065

Intracranial Hypertension Research Foundation (IHRF)
6517 Buena Vista Dr
Vancouver, WA 98661
Tel: (360)693-4473
Fax: (360)694-7062

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

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766

Chiari & Syringomyelia Foundation (CSF)
29 Crest Loop
Staten Island, NY 10312
Tel: 718-966-2593
Fax: 718-966-2593

For a Complete Report

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see

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