Pseudotumor Cerebri (Idiopathic Intracranial Hypertension): What to Watch For

Pseudotumor cerebri, also called idiopathic intracranial hypertension (IIH), feels like a pressure problem inside your skull even though imaging looks normal. The big risk is vision loss, so spotting symptoms early matters. This page explains common signs, how doctors check it, and practical steps you can take now.

Common symptoms and warning signs

The most typical sign is a daily headache that often gets worse when you cough, bend over, or strain. Your vision can blur or go dark briefly — those short blackouts are called transient visual obscurations. You may also notice double vision, ringing in the ears that matches your pulse, and neck or shoulder pain. On eye exam, doctors often find papilledema (swelling of the optic nerve) — that’s the red flag they worry about.

If you’re a woman of childbearing age with recent weight gain, your risk is higher. Certain drugs can trigger or worsen IIH — think high-dose vitamin A, retinoids, and some antibiotics like tetracyclines. If you’re on these meds and develop headaches or vision changes, talk to your doctor right away.

How it’s diagnosed

Diagnosis combines an eye exam, brain imaging, and a lumbar puncture. Your eye doctor will check vision and the optic nerve, often with visual field testing and optical coherence tomography (OCT). An MRI (and sometimes MR venography) rules out tumors or venous clots. The lumbar puncture measures opening pressure — elevated pressure with normal spinal fluid content supports the IIH diagnosis.

Don’t skip tests: catching subtle vision loss early is how permanent damage is avoided.

Treatment and what you can do now

First-line medical therapy is weight loss if overweight and acetazolamide, a drug that reduces cerebrospinal fluid production. Topiramate can help both headaches and pressure in some people. Short-term fixes include therapeutic lumbar punctures to lower pressure quickly, but they’re not a long-term solution.

For worsening vision despite meds, surgical options exist: optic nerve sheath fenestration can protect eyesight, and venous sinus stenting helps when a venous narrowing is the problem. These are specialist procedures, so a retina specialist or neuro-ophthalmologist should be involved.

Practical tips: monitor your vision daily (note blurring or dark spots), avoid over-the-counter vitamin A supplements, and keep a headache diary to show your doctor. If vision suddenly worsens, or you develop new double vision, seek emergency eye care. Regular follow-up with visual field testing and OCT is key — treatment decisions hinge on preserving sight, not just easing headaches.

If you have questions about medications, side effects, or weight-loss options, bring a list of current drugs and recent weight changes to your appointment. Early action preserves vision and makes managing IIH much easier.