Welcome to IIH UK
The IIH UK website is a source of information for IIH – Idiopathic Intracranial Hypertension, and links to resources and information about IIH. There is also information about IIH UK and our plans for the future.
Idiopathic Intracranial Hypertension (IIH), is a neurological condition defined by increased intracranial pressure around the brain without the presence of tumour or disease.
Alternative Names
An earlier name: Benign Intracranial Hypertension (BIH) is little 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) because some sufferers present with signs and symptoms of a brain tumour despite no tumour being present, ('pseudo' meaning false).
The space around the brain is filled with a water–like fluid (Cerebrospinal Fluid). If, due to a variety of factors the pressure around the brain rises then the space containing the fluid cannot expand. It is this excessively high pressure–called hypertension–that produces the symptoms of IIH. There is no cure for IIH, but IIH UK is supporting ongoing research. Current treatments for IIH come with many side effects and offer no guarantee of success.
While IIH may not be a life threatening condition, it is certainly life changing. The quote below is from someone suffering from IIH.
Imagine your head feels as though it's been crushed by a vice, a headache unlike anything you've ever felt before, where every part of your head hurts and the pressure is unbearable, and it's a pain no-one can see.
Imagine a world in permanent soft focus, where things come in twos, where things disappear momentarily, where you can't tell how deep a step is, where bright light is a pain you can't stand.
Imagine a world that sways around you, where you feel as though you're in the middle of a storm on a cross channel ferry, feeling dizzy and sick - yet you're standing still.
Imagine you're so totally exhausted that your body doesn't want to move and all you want to do is sleep, yet an incessant roaring in your ears keeps you awake.
Imagine feeling lost and fearful, confused in a place you used to know well.
Welcome to the world of IIH
©Rachel Turner - IIH UK