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Neurology
Ophthalmology
Neurosurgery
EMERGENCY

Idiopathic Intracranial Hypertension (IIH)

High EvidenceUpdated: 2025-12-24

On This Page

Red Flags

  • Fulminant IIH (Rapid visual loss)
  • Cranial Nerve palsies (other than VI)
  • Thin patient (Red flag for secondary cause)
  • Visual Field Defect (Enlarged blind spot)
Overview

Idiopathic Intracranial Hypertension (IIH)

1. Clinical Overview

Summary

Idiopathic Intracranial Hypertension (IIH) is a condition of raised intracranial pressure (ICP) of unknown aetiology, predominantly affecting obese women of childbearing age. The historical term "Benign" is obsolete because it carries a high risk of permanent blindness. The classic presentation is headache (worse on lying flat/Valsalva), transient visual obscurations, and pulsatile tinnitus. Examination reveals Papilloedema and occasionally a VIth nerve palsy. Diagnosis requires satisfying the Modified Dandy Criteria: Signs of raised ICP, Normal MRI/MRV (excluding thrombosis), and Opening Pressure >25 cmH2O on Lumbar Puncture. Management is urgent preservation of vision. Weight loss is the only disease-modifying therapy. Acetazolamide reduces CSF production. Surgical interventions (Shunts, Stenting, Fenestration) are reserved for threatened vision or intractable headache. [1,2]

Key Facts

  • Epidemiology: 90% are obese women (BMI >30). Incidence is rising with the obesity epidemic.
  • Pathophysiology: Controversy exists. Likely a mismatch between CSF production and resorption, possibly driven by venous sinus stenosis (transverse sinus).
  • Vision is Key: Headache is the symptom, but Blindness is the outcome. Regular visual fields are mandatory.
  • The "Stenosis" Debate: Venous Sinus Stenosis is common. Is it the cause (obstruction) or the effect (compression by high ICP)? Recent evidence suggests stenting can cure it.
  • Secondary Causes: Tetracyclines, Retinoids (Vit A), Steroid withdrawal, Addisons, OSA.

Clinical Pearls

"The Whooshing Sound": Pulsatile tinnitus (hearing one's heartbeat) is a highly specific symptom for raised ICP. It often stops if the patient compresses their jugular vein.

"Transient Visual Obscurations (TVOs)": Grey-outs of vision lasting seconds, triggered by bending over or standing up. They indicate optic nerve head ischaemia/congestion.

"The Empty Sella": A common MRI finding in IIH. The high pressure flattens the pituitary gland against the floor of the sella turcica.

"Don't Miss the Thrombus": A Cerebral Venous Sinus Thrombosis (CVST) mimics IIH perfectly. You MUST request an MRV (Venogram), not just an MRI.


2. Epidemiology

Incidence

  • General Population: 1-2 per 100,000.
  • Obese Women (20-44y): 20 per 100,000.
  • Paediatric IIH: Rare. Affects boys and girls equally. Often not associated with obesity.

3. Pathophysiology

The "Monro-Kellie" Imbalance

The skull is a fixed box containing Brain, Blood, and CSF. In IIH, the CSF volume/pressure is high. Why?

  1. CSF Resorption Failure: Arachnoid granulations fail to drain CSF into the venous sinuses.
  2. Venous Hypertension: High central venous pressure (due to obesity/abdominal pressure) is transmitted to the intracranial veins, reducing the gradient for drainage.
  3. Transverse Sinus Stenosis: Seen in >90%. It creates a pressure gradient. Stenting it can normalize ICP.
  4. Hormonal/Metabolic: A link to Adipokines/Vitamin A metabolism? (Retinol increases CSF production).

4. Clinical Presentation

Symptoms

  1. Headache (90%):
    • Daily, dull, global.
    • Worsened by Valsalva (Coughing, Straining) and Recumbency (Morning headache).
  2. Visual Obscurations (TVOs) (70%):
    • Brief (<30s) greying out of vision.
    • Binocular or monocular.
    • Precipitated by posture change.
  3. Pulsatile Tinnitus (60%):
    • "Whooshing" or "Heartbeat" in the ear.
    • Unilateral or Bilateral.
  4. Diplopia:
    • Horizontal diplopia.
    • Due to VI nerve (Abducens) palsy - a "false localising sign" caused by stretching of the nerve.

Signs

  1. Papilloedema:
    • Swollen optic discs.
    • Blurring of margins.
    • Haemorrhages (Splinter).
    • Paton's Lines (Retinal folds).
    • Note: In chronic IIH, the disc becomes pale (Optic Atrophy) - a sign of permanent damage.
  2. Visual Field Defect:
    • Enlarged Blind Spot (earliest sign).
    • Constriction of peripheral field.
    • Nasal step.
  3. Sixth Nerve Palsy: Failure of abduction.

5. Investigations

Imaging (MRI + MRV)

Mandatory rule-out of structural cause.

  • MRI Brain:
    • Normal brain parenchyma (No tumour).
    • Signs of High Pressure:
      • Empty Sella (70%).
      • Flattening of posterior globe (Posterior Sclera).
      • Distension of optic nerve sheath.
      • Tortuous optic nerve.
  • MR Venogram (MRV):
    • Rule out Sinus Thrombosis.
    • Look for Transverse Sinus Stenosis.

Lumbar Puncture (LP)

The Diagnostic Test.

  • Opening Pressure:
    • Must be measured in Lateral Decubitus position with legs extended (relaxed).
    • > 25 cmH2O: Diagnostic for IIH.
    • 20-25: Equivocal.
    • < 20: Normal.
  • CSF Analysis: Normal protein/glucose/cells.

Ophthalmology Review

  • Visual Fields (Humphrey): Mandatory baseline and monitoring.
  • OCT: Quantifies papilloedema thickness.

6. Management

Management Algorithm

        DIAGNOSIS CONFIRMED
                ↓
    ┌───────────┴───────────────┐
  VISION         VISION         VISION
  STABLE       THREATENED       LOST/SEVERE
    ↓             ↓                ↓
- Weight Loss  - High Dose ACZ   - EMERGENCY
- Acetazolamide- Topiramate      - SURGERY
- Headache     - Consider        (Shunt/ONSF)
  mgmt           Surgery

1. Medical Management

  • Weight Loss: The only curative treatment. Loss of 5-10% body weight often induces remission. GLP-1 agonists (Semaglutide) are showing promise.
  • Acetazolamide (Diamox):
    • Carbonic Anhydrase Inhibitor. reduces CSF production.
    • Dose: High! 500mg BD up to 4g daily.
    • Side Effects: Paraesthesia (fingers/toes), Metallic taste (fizzy drinks), Acidosis, Kidney stones.
  • Topiramate: Weak CA inhibitor + Weight loss benefit + Migraine prophylaxis. Good alternative.
  • Furosemide: Weak evidence. Used as adjunct.

2. Surgical Management

Indications: Fulminant IIH (Vision failing rapidly), Failure of medical therapy.

  • CSF Diversion (Shunt):
    • Ventriculo-Peritoneal (VP) or Lumbo-Peritoneal (LP) shunt.
    • Effect: rapid pressure drop.
    • Problem: High failure rate (blockage/infection) and "Low Pressure Headache".
  • Optic Nerve Sheath Fenestration (ONSF):
    • Slits cut into the nerve sheath to relieve pressure locally.
    • Saves vision but does NOT cure headache.
  • Venous Sinus Stenting:
    • Newer procedure. Stenting the transverse sinus stenosis.
    • Outcomes: Excellent for pressure and headache. Lower revision rate than shunts. Requires a gradient >8mmHg.

3. Deep Dive: Venous Sinus Stenosis - Cause or Effect?

"The Chicken and Egg."

  • The Finding: >90% of IIH patients have stenosis of the Transverse Sinus on MRV.
  • Hypothesis A (The Effect): High Intracranial Pressure compresses the sinus (which is a soft tube). The stenosis is a result of the disease.
    • Evidence: Doing an LP to lower pressure often resolves the stenosis temporarily.
  • Hypothesis B (The Cause): The stenosis creates a "dam", preventing CSF drainage. This causes the high pressure.
    • Evidence: Stenting the stenosis cures the disease in many cases.
  • The Consensus: It is likely a vicious cycle. A small stenosis raises pressure -> High pressure compresses the sinus further -> More stenosis -> Higher pressure.

4. Surgical Atlas: Stenting vs Shunting

A. Venous Sinus Stenting

  • Procedure: Endovascular (Interventional Neuroradiology). Access via femoral vein. Deployment of a self-expanding stent into the transverse sinus.
  • Pros: Minimally invasive. Cures the pressure gradient. Solves the "whooshing" noise immediately.
  • Cons: Requires dual antiplatelets. Risk of haemorrhage. Failure rate (stent thrombosis).

B. Ventriculo-Peritoneal (VP) Shunt

  • Procedure: Neurosurgical hole in skull -> Tube into ventricle -> Tunneled to abdomen.
  • Pros: Guaranteed pressure reduction.
  • Cons: High Failure Rate. The ventricles in IIH are usually small ("Slit Ventricles"), making placement hard. Shunts often block or over-drain (causing low pressure headaches). 50% require revision within 2 years.

7. Differential Diagnosis
  • Cerebral Venous Sinus Thrombosis (CVST): The "Can't Miss" diagnosis.
  • Space Occupying Lesion: Tumour/Abscess.
  • Meningitis: Chronic (TB/Fungal).
  • Malignant Hypertension: Check BP!
  • Medication Induced: Tetracyclines (Doxycycline/Minocycline), Vitamin A (Isotretinoin), Growth Hormone.

8. Prognosis
  • Vision: 10-25% suffer permanent visual loss.
  • Recurrence: Can recur if weight is regained.
  • Headache: Can persist even after papilloedema resolves (Chronic Migraine phenotype).

9. Evidence and Guidelines
  • IIH Treatment Trial (IIHTT): Confirmed efficacy of Acetazolamide + Weight loss vs Placebo.

10. Patient Explanation

What is IIH?

It is a condition where the fluid pressure around your brain is too high. It mimics a brain tumour (hence the old name "Pseudotumor"), but there is no tumour.

Why me?

We don't know exactly, but it is strongly linked to weight. Hormones may play a role.

Is it dangerous?

It is not life-threatening, but it is sight-threatening. The pressure squeezes the optic nerves and can cause blindness if untreated.

What is the treatment?

The most effective treatment is Weight Loss. Losing 10% of your body weight can put the disease into permanent remission. We also use water tablets (Acetazolamide) to lower the pressure.


11. References
  1. Mollan SP, et al. Idiopathic intracranial hypertension: consensus guidelines on management. J Neurol Neurosurg Psychiatry. 2018;89:1088-1100.
  2. Wall M. Idiopathic Intracranial Hypertension. Neurol Clin. 2010;28:593-617.

12. Examination Focus

Common Exam Questions

1. Pharmacology:

  • Q: What is the mechanism of Acetazolamide?
  • A: It inhibits Carbonic Anhydrase in the Choroid Plexus, reducing the transport of bicarbonate and sodium, and thus water, into the CSF space.

2. Anatomy:

  • Q: Which cranial nerve is most commonly affected and why?
  • A: The VIth (Abducens). It has the longest intracranial course and is tethered at Dorello's canal, making it susceptible to stretching by raised ICP.

3. Imaging:

  • Q: What is the "Empty Sella" sign?
  • A: Herniation of the subarachnoid space into the sella turcica, flattening the pituitary gland. It is a radiological sign of chronically raised ICP.


13. Technical Appendix: Modified Dandy Criteria

For Definite IIH Diagnosis:

  1. Signs/Symptoms: Symptoms of raised ICP or Papilloedema.
  2. Neurology: No localising signs (except VI nerve palsy).
  3. Imaging: Normal MRI/CT (No mass, no thrombosis).
  4. Pressure: Opening Pressure >25 cmH2O (Adults) or >28 cmH2O (Children).
  5. Biochemistry: Normal CSF composition.

Note: "IIH without Papilloedema" (IIHWOP) exists but is controversial. Requires strict criteria (Pressure >25 + VI nerve palsy OR Stenosis on MRV).


14. Ethics: Weight Bias in Neurology

"Just lose weight."

  • The Problem: Doctors often treat IIH patients dismissively, attributing the disease solely to "lifestyle". This leads to disengagement and poor outcomes.
  • The Reality: Obesity is a complex metabolic disease, not just "willpower".
  • The Approach:
    • Don't just say "Lose weight". Refer to bariatric services.
    • Acknowledge the pain. Headache makes it hard to exercise. Depression is a comorbidity.
    • Treat the condition medically while weight loss is in progress.

15. Examination Focus (Expanded)

Advanced Viva Questions

1. Radiology:

  • Q: What are the radiological features of raised ICP?
  • A: Empty Sella, Tortuous Optic Nerves, Flattening of the posterior globe, Distension of the perioptic subarachnoid space.

2. Pharmacology:

  • Q: Why do we use Acetazolamide and not Furosemide?
  • A: Acetazolamide directly targets CSF production at the Choroid Plexus (Carbonic Anhydrase dependent). Furosemide is a loop diuretic and has minimal effect on CSF.

3. Surgery:

  • Q: What is the main complication of ONSF?
  • A: Blindness (due to central retinal artery occlusion or nerve damage) and Diplopia. It also fails to treat the headache in many cases.

Medical Disclaimer: MedVellum content is for educational purposes and clinical reference. Clinical decisions should account for individual patient circumstances. Always consult appropriate specialists.

Last updated: 2025-12-24

At a Glance

EvidenceHigh
Last Updated2025-12-24
Emergency Protocol

Red Flags

  • Fulminant IIH (Rapid visual loss)
  • Cranial Nerve palsies (other than VI)
  • Thin patient (Red flag for secondary cause)
  • Visual Field Defect (Enlarged blind spot)

Clinical Pearls

  • **"The Whooshing Sound"**: Pulsatile tinnitus (hearing one's heartbeat) is a highly specific symptom for raised ICP. It often stops if the patient compresses their jugular vein.
  • **"Transient Visual Obscurations (TVOs)"**: Grey-outs of vision lasting seconds, triggered by bending over or standing up. They indicate optic nerve head ischaemia/congestion.
  • **"The Empty Sella"**: A common MRI finding in IIH. The high pressure flattens the pituitary gland against the floor of the sella turcica.
  • **"Don't Miss the Thrombus"**: A Cerebral Venous Sinus Thrombosis (CVST) mimics IIH perfectly. You MUST request an MRV (Venogram), not just an MRI.
  • High pressure compresses the sinus further -

Guidelines

  • NICE Guidelines
  • BTS Guidelines
  • RCUK Guidelines