Welcome to IIH UK
The IIH UK website is a source of information for IIH – idiopathic intracranial hypertension – home to a collection of leaflets about IIH and associated concerns to people with IIH, and a source of links to further sources of information about IIH. There is also information on what IIH UK is and our plans for the future.
IIH, Idiopathic Intracranial Hypertension, is a neurological condition of high pressure of the fluid around the brain. It is also known as benign intracranial hypertension (BIH), although this term is falling out of use as the condition can cause visual loss and therefore is certainly not harmless or benign, as sufferers who live with it's effects daily would agree. It is also sometimes called pseudotumor cerebri (PTC) because there are some of the signs and symptoms of a brain tumour without a tumour being present (pseudo meaning false).
The space around the brain is filled with a water–like fluid (cerebrospinal fluid). If there is too much of this fluid present, the pressure around the brain rises because the space containing the fluid cannot expand. It's this high pressure that produces the symptoms of IIH. There is no cure for IIH, and the 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
IIH UK gratefully acknowledges the support of