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Idiopathic Intracranial Hypertension (IIH)

Idiopathic Intracranial Hypertension (IIH) is a disease of unknown cause defined by increased intracranial pressure (ICP) and typically papilledema. The condition usually occurs in obese women of childbearing age (but can less frequently occur in other situations). The impact for patients is a chronic condition with considerable disability from chronic headaches, impaired vision (which can be permanent) and poor quality of life.

The best way to treat IIH is not fully established. Weight loss has been shown to modify the underlying disease and treat the condition but is difficult to achieve and maintain. Drugs such as acetazolamide have been shown to offer some benefits. Sometimes, when vision is rapidly deteriorating, neurosurgical shunting operations can be used to save vision. However, there are problems with shunts in the long term as many shunts block or fail often leading to repeated operation (sometime multiple repeat operations).

The clinical presentation of IIH is variable, but typical symptoms include:

  • headaches
  • visual disturbance and double vision
  • ringing in the ears

History and terminology

IIH is sometimes known by its earlier name, Benign Intracranial Hypertension (BIH) but this is rarely used because the condition can cause visual loss and therefore is not harmless or benign. You may also occasionally see it referred to as Pseudotumor Cerebri (PTC).

Information about the service

At a one stop appointment you will typically have your vision assessed (visual field test), acuity (reading the letters down a chart) and colour vision checked. You will then see a neuro-ophthalmologist or neurologist with expertise in IIH. It is often necessary to put drops in the eye to allow a better view of the back of the eye (look at the optic nerve and look for swelling called papilloedema). This will mean you are unable to drive home so it is advisable to come to the appointment with someone who can drive you home if needed.

How to contact the service

Andrea Mitchell – Medical Secretary

Last reviewed: 21 June 2023