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Promoting, encouraging and facilitating progress in the understanding and management of IH - Chronic Idiopathic and Secondary Intracranial Hypertension
What is IH? -
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The latest news on current research and our progress toward a cure.
Research Introduction -
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Explore resources designed especially for caregivers, families and friends.
Contact Us
Intracranial Hypertension Research Foundation - Formerly called Benign Intracranial Hypertension and Pseudotumor Cerebri
Intracranial Hypertension Research Foundation (IHRF): the first 501(c)3 nonprofit in the world to advocate for, collaborate and support new medical research for people affected by chronic intracranial hypertension (IH), formerly known as pseudotumor cerebri and benign intracranial hypertension.
The Intracranial Hypertension Research focuses on the creation, collaboration and support of new medical for chronic intracranial hypertension (IH), formerly known as pseudotumor cerebri and benign intracranial hypertension. We work to expand knowledge about chronic intracranial hypertension, including idiopathic intracranial hypertension (IIH) and secondary (SIH) while helping to foster medical research that will lead to better, new treatments and a cure. The IH Research Foundation also offers education and support for people with chronic IH, families, physicians, medical professionals and researchers. We answer questions about chronic intracranial hypertension!
Chronic IH (including IIH) can be a lifelong disorder and is considered a rare disease. Idiopathic intracranial hypertension (IIH) occurs without an identifiable, underlying cause. Secondary IH means that there is an underlying cause, such as another disease or drug reaction. “Intracranial hypertension” means high (CSF) fluid pressure within the skull; the pressure pushes on the brain and is transmitted along the optic nerves. Symptoms of chronic intracranial hypertension include vision loss, blindness, extreme pain (often a headache described as beyond the worst possible migraine imaginable, unresponsive to pain medication), and general life-altering disability. Many people with chronic IH cannot work or go to school. Chronic IH occurs in both men, women and children of all races and ethnicities. Being overweight and a woman of childbearing age are associated with idiopathic intracranial hypertension, but not with secondary IH.
For many years, IHRF ran the first global patient registry for chronic IH patients designed for research—the IH Registry—in partnership with Oregon Health & Science University (OHSU). “Intracranial” is sometimes spelled “intercranial” which is incorrect.
Welcome
Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension. We also provide assistance, education, and encouragement for individuals with chronic IH, their families and medical professionals.
Our mission is to discover why intracranial hypertension happens, along with new, effective treatments. Our ultimate goal is to find a cure.
IHRF News and Events
- An Important Announcement About the IH Registry
- Mortality and IIH
- IH Registry Study on Emergency Department Usage by IIH Patients
- Diamox Sequels Update
- IH Registry and Pediatric Intracranial Hypertension
- IH Registry Study Finds Kidney Stones Are NOT A Common Side Effect of Daily Acetazolamide Treatment
- Journal of Pediatric Neurology, Pediatric IH Issue
- IH Registry Acetazolamide Use & Pregnancy Study
- The IH Registry and the Global Rare Diseases Registry
- IHRF Scientific Advisor Awarded NSBRI/NASA Grant to Study Non-Invasive Pressure Monitoring
- IHRF/NASA Research
- Patient Survey: IH Registry Enrollment and Follow-up Process
- The Liverpool Review: Rare Disease Day 2011
- Two Registry Studies Are Published
- IH Registry Provides Research Resource Data to eagle-i Consortium
- The Columbian: Vancouver Family Combats Rare Hypertension Condition
- Pregnancy and Diamox Use Study Update
- Oregon Lions Award IHRF Co-Founder Highest Honor
- IHRF Establishes Neuro-Imaging Library at OHSU
Focus on Papilledema
Is it always present in intracranial hypertension?
Papilledema, or swelling of the optic nerves, is often considered a hallmark sign of intracranial hypertension. But what does your doctor see when he looks into your eyes? Read on to find out what papilledema is, why it develops, what a venous pulsation is and whether papilledema is necessary for an IH diagnosis.
How does papilledema occur? The optic nerve is actually an extension of brain tissue, connecting the inner lining...Read More »
Is Vision Loss in IIH Associated With Weight Gain Before Diagnosis?
Surprising Findings From IH Registry Study Published in the Journal of Women's Health
Previous research on women with IIH has suggested that obesity or recent weight gain was associated with a greater risk of sustained vision loss or deterioration of the vision field. The following paper is the second research study published from an IH Registry project.
Previous research on women with IIH has suggested that obesity or recent weight gain was associated with a greater risk...Read More »