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Site Last Updated 01/09/2017

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What is IIH?

IIIH stands for Idiopathic Intracranial Hypertension is a very rare condition (1-2 in every 100,000). This means that there is too much cerebrospinal pressure in the skull. Idiopathic means of an unknown cause, therefore there is presently no cure for this condition. It is a chronic neurological condition that produces debilitating and life changing symptoms. The symptoms can include:

-  Severe Headaches  -  Nausea / Vomiting  - Chronic fatigue  - Tinnitus  - Confusion

-  Vision problems (flashing spots, double vision and blindness)

Plus many more………..

Diagnosing IIH:

Your GP will probably refer you to a Neurologist who is a specialist in conditions affecting the brain, spine and central nervous system. They will probably ask for some or all of the tests listed below:

-  CT Scan / MRI Scan (See Leaflet)
-  Lumbar Puncture (See Leaflet) Or ICP Monitoring (See Leaflet)
-  Full ophthalmology examination (See Leaflet)

IIH is diagnosed using criteria called ‘The Modified Dandy Criteria’. To view what the criteria states Click Here.  

Treatment Options:

At present there is no cure for this condition so its about managing the symptoms. There are a few medications that are used to help reduce the pressure, these are called Diuretics, most commonly used are the following, Acetazolamide (Diamox), Topiramate and Furosemide. It may also be recommended that you have regular Lumbar Punctures to reduce the pressure. This would be taken alongside pain relief and anti sickness medications.

If these methods do not control the pressures enough it may be recommended that you undergo surgery to insert a shunt. There are presently 3 types of shunts that are commonly used these are:
-  Lumbar Peritoneal (LP) shunt
-  Ventriculoperitoneal (VP) shunt
-  Ventriculoplural (VPL) shunt

There is other shunt options that are less commonly used, your medical team will decide the best option for you. There is also one more surgery option that is not commonly used nowadays called Optic Nerve Fenestration. This will not be considered unless you are in danger of loosing your sight.
(See Leaflet on Surgical Procedures)

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