Living with IIH
If you've just been diagnosed with IIH reading some people's accounts of their experiences with IIH will probably worry you. Please do remember that many people respond well to medication and undertaking weight loss if recommended. These people are able to resume their normal life and do not require support. We felt it was important though to recognise that some people do have severe problems with IIH. The emotional as well as the physical effects of IIH can be very traumatic. Many people with IIH say that although IIH alone isn't life threatening, it is life changing and the effects can impact on every aspect of their life.
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!
©Copyright 2003 – 2016 Rachel Turner - IIH UK
Under Pressure - IIH Song, © Written and performed by Ryan (RION) Dunkerley
Rion says, 'The inspiration to this song was basically wanting to bring awareness to this disease as watching my wife suffer with it, and there not being much else I can do except educate myself, and be supportive. Music is also a therapy/release for me, so it helps me deal with things.