Living with Benign intracranial hypertension
A condition with high fluid pressure inside the skull that causes headaches and vision changes.
Understanding Benign intracranial hypertension
The name pseudotumor cerebri means "false brain tumor," because symptoms look like those of a brain tumor even though no tumor is present. It most often, but not always, occurs in young, overweight women. When an identifiable cause such as another disease or a medicine is found, it is called secondary IH.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Severe headache
- Nausea and vomiting
- Vision changes or blurred vision
- Swelling of the optic nerve (papilledema)
- Pulsing sounds inside the head
- Stiff neck, eye pain, or memory problems
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Migraine Foundation and Bobby Jones Chiari & Syringomyelia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: American Migraine Foundation, Bobby Jones Chiari & Syringomyelia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with American Migraine Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The exact cause is not known. It is likely due to high fluid pressure in the skull from a buildup or poor absorption of cerebrospinal fluid (CSF).
Also known as: benign intracran. hypt.; bih - benign intracranial hypertension; idiopathic intracranial hypertension; iih; iih - idiopathic intracranial hypertension; noninfective serous meningitis
Patient organizations
- American Migraine FoundationBenign intracranial hypertension · United States
- Bobby Jones Chiari & Syringomyelia FoundationBenign intracranial hypertension · United States
- Intracranial Hypertension Research FoundationBenign intracranial hypertension · United States
You are more than your diagnosis
Perspectives from people navigating life with Benign intracranial hypertension.
Explore research for Benign intracranial hypertension
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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