Finding Out if You Have IIH

How doctors check if you have too much brain pressure

Simple Explanation First 👨‍⚕️

Doctors need to check 3 main things:

1️⃣ Your eyes - An eye doctor looks at the back of your eyes
2️⃣ Your brain - A special picture (MRI) of your brain
3️⃣ Your brain fluid - A test to check the pressure (spinal tap)

What to expect:

• It takes time - Usually several doctor visits
• Different doctors - Eye doctor, brain doctor, maybe others
• Some tests might be uncomfortable - But they help find the problem
• Ask questions - Doctors should explain everything

👇 Keep reading for more detailed information

Diagnostic Criteria

Doctors need to confirm ALL of these to diagnose IIH:

  • ✓ Signs of increased brain pressure
  • ✓ High pressure reading on spinal tap (≥25 cm H₂O)
  • ✓ Normal spinal fluid
  • ✓ Normal brain scan (no tumors or blockages)
  • ✓ No other cause found

Common Symptoms

Primary Symptoms

  • Severe headaches (94% of patients)
  • Pulsatile tinnitus (60%)
  • Visual disturbances
  • Papilledema (optic disc swelling)

Visual Symptoms

  • Transient visual obscurations
  • Blurred or double vision
  • Visual field defects
  • Photophobia (light sensitivity)

Other Symptoms

  • Neck/shoulder pain
  • Dizziness
  • Nausea
  • Cognitive difficulties

⚠️ Red Flag Symptoms

Seek immediate medical attention if experiencing:

  • Sudden, severe vision loss
  • Persistent visual field defects
  • Rapidly worsening headaches
  • New neurological symptoms

Common Tests

Eye Test

Eye Examination

An eye doctor looks at the back of your eyes to check for swelling.

Brain Scan

MRI

A special picture of your brain to make sure nothing else is causing the pressure.

Pressure Test

Spinal Tap

A test to measure the pressure of the fluid around your brain and spine.

Eye Picture

OCT Scan

A special camera takes detailed pictures of your optic nerve.

Blood Work

Blood Tests

Check for other problems that might cause similar symptoms.

Vein Check

CT/MR Venography

Special scan to look at the veins in your brain.

Diagnostic Process Timeline

Initial Consultation

Primary care or emergency visit for symptoms. Initial neurological examination and referral to specialists.

Ophthalmology Evaluation

Comprehensive eye exam including dilated funduscopy, visual fields, and OCT imaging.

Neuroimaging

MRI brain with and without contrast, plus MRV to evaluate venous sinuses.

Lumbar Puncture

If imaging is normal, LP performed to measure opening pressure and analyze CSF.

Diagnosis & Treatment Plan

Confirmation of diagnosis based on criteria and initiation of appropriate treatment.

Important Considerations

  • Proper positioning during LP is crucial - must be in lateral decubitus with legs extended
  • BMI affects pressure readings - higher BMI may have slightly higher normal pressures
  • Time of day matters - CSF pressure can fluctuate throughout the day
  • Multiple specialists needed - typically involves neurology, ophthalmology, and sometimes neurosurgery

Differential Diagnosis

Conditions that can mimic IIH and must be ruled out:

  • Cerebral venous sinus thrombosis
  • Brain tumors or masses
  • Chronic meningitis
  • Medication-induced intracranial hypertension
  • Sleep apnea
  • Endocrine disorders