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Pseudotumor Cerebri

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Copyright 1989, 1996, 1997, 1998, 2002, 2008

NORD is very grateful to Bradley K. Farris, MD, Dean A. McGee Eye Institute and Professor, Departments of Ophthalmology, Neurology & Neurosurgery, University of Oklahoma School of Medicine, for assistance in the preparation of this report.

Synonyms of Pseudotumor Cerebri
  • Benign Intracranial Hypertension
  • Idiopathic Intracranial Hypertension (Primary Intracranial Hypertension)
  • Secondary Intracranial Hypertension

Disorder Subdivisions



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.

Organizations related to Pseudotumor Cerebri
  • Chiari & Syringomyelia Foundation (CSF)
    290 Broadhollow Road, Suite 210E
    Melville NY 11747
    Phone #: 516-228-3565
    800 #: N/A
    e-mail: N/A
    Home page: http://www.CSFinfo.org
  • Genetic and Rare Diseases (GARD) Information Center
    PO Box 8126
    Gaithersburg MD 20898-8126
    Phone #: 301-251-4925
    800 #: 888-205-2311
    e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
    Home page: http://rarediseases.info.nih.gov/GARD
  • Intracranial Hypertension Research Foundation (IHRF)
    6517 Buena Vista Dr
    Vancouver WA 98661
    Phone #: 360-693-4473
    800 #: --
    e-mail: contact@ihrfoundation.org
    Home page: http://www.ihrfoundation.org
  • Madisons Foundation
    PO Box 241956
    Los Angeles CA 90024
    Phone #: 310-264-0826
    800 #: N/A
    e-mail: getinfo@madisonsfoundation.org
    Home page: http://www.madisonsfoundation.org
  • National Institute of Neurological Disorders and Stroke (NINDS)
    P.O. Box 5801
    Bethesda MD 20824
    Phone #: 301-496-5751
    800 #: 800-352-9424
    e-mail: me20t@nih.gov
    Home page: http://www.ninds.nih.gov/
  • Pseudotumor Cerebri Support Network
    3521 Westbay Drive
    Powell OH 43065
    Phone #: N/A
    800 #: --
    e-mail: redbird@icok.net
    Home page: http://www.angelfire.com/ok/PTCSupportNetwork/

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Last modified Wednesday, November 26, 2008