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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.

These are the words of real people with IIH...

(click on the images for the entire quote)

when you have a pain so large imagine your head feels as though I started with horrendous headaches I was suffering headaches all day every day for six months and no amount of tablets would take it off Rob was diagnosed in 2003 2005 turned my life completely upside down rushed to hospital with thoughts of a brain tumour Please don't panic if you have recently been diagnosed... I feel like I have been robbed of my life When I first found out My life as I knew it I was diagnosed with BIH in 1984

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. There are positive stories as well, as some of our contributors show and during the process of collecting experiences of those with IIH, one of the contributors contacted us with an epilogue to her story. Talking about her relationship with her partner, she said:

We have both had our world turned upside down with IIH...but we are now closer, stronger and can take anything life throws at us.

Stay positive!!! Try to limit Anybody who is a negative influence in your life!!

For more information about IIH and it's symptoms, see our page 'about IIH'

Last Modified: 18/09/11

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