Living with IIH

IIH is not life threatening, but it can be life changing. IIH has many symptoms, and for patients with severe symptoms it can affect every aspect of their lives. The words below are those of people who live every day with the effects of IIH, effects that can impact on every aspect of their life.

If you've just been diagnosed with IIH reading some people's accounts of their experiences with IIH will probably worry you. We felt it was important 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.

Stories

Lauren's Story

Lauren's Story

Melissa's Story

Melissa's Story

Diana's Story

Diana's Story

Ann's Story

Ann's Story

Kerry's Story

Lauren's Story

Lana's Video Story

Melissa's Story

Sabrina's Story

Diana's Story

Lisa's Story

Lisa's Story

Karen's Story

Karen Orchard

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 2009 – 2012 Rachel Turner IIH UK

 

News

  • Latest News

    IIH UK's AGM and Weekender are now FULLY BOOKED! Thank you to all those attending!

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  • Fundraising News

    Check out our fabulous fundraisers and events happening in 2013!

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  • IIH Social Gatherings

    IIH UK Yorkshire are meeting on Saturday 6th July at Xscape 12pm. For more details https://www.facebook.com/events/471219289615149/

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  • Information

    Our posters and leaflets are now in many hospitals around the UK. If you could help with distribution, please contact us.

     

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For further information please contact us

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