IIH & Eyesight

Permanent vision loss

Permanent vision loss is the major morbidity associated with IIH. An early, hospital-based study that followed 57 patients for 5 to 41 years found that 24% developed blindness or severe visual impairment. Community and clinic-based studies have found a lower rate of severe visual loss of 6 to 14%

Papilloedema is optic disc swelling that is caused by increased intracranial pressure. It can progress to enlargement of the blind spot, blurring of vision, visual obscurations (inability to see in a particular part of the visual field for a period of time) and ultimately total loss of vision may occur.

While IIH patients are usually referred to neuro-ophthalmologists after diagnosis, comprehensive ophthalmologists can play a vital role in the initial management of IIH. They are often the first to see IIH patients and may work together with a neurologists to monitor treatment in areas where neuro-ophthalmologists are not nearby.

Without timely treatment, IIH can progress to vision loss. Unfortunately, early loss often goes unnoticed by patients because it happens gradually, in the periphery.

If you are experiencing sight loss or are partially sighted, the A+ letter just below the IIH UK logo on each webpage will allow you to increase the text size on the page. 

The signs of papilloedema that are seen using an ophthalmoscope include:  

venous engorgement (usually the first signs)

loss of venous pulsation
haemorrhages over and / or adjacent to the optic disc                                                                 
blurring of optic margins
elevation of optic disc
Paton's lines = radial retinal lines cascading from the optic disc.

Losing some or all of your sight can be extremely distressing and can have a big affect on your life. There are lots of organisations that can help you with advice and assist you with your needs. Please see the useful links section below.

Useful links

RNIBThe RNIB help anyone who is affected by sight loss. If you are losing your sight, partially sighted or blind, they offer practical and emotional support.

Action for blindAction for blind people has a great website with many useful links to organisations which help

VisionaryVisionary is a membership organisation for local sight loss charities.


IIH UK is members of the following organisations.

  Genetic Alliance Logo    Neurological Alliance Logo     JLA Logo    Alliance    ;NCVO Logo    RDD Logo