Lisa's Story

The year 2005 turned my life completely upside down. I found out that I had the condition from reading what the doctors from the hospital had written to my GP in the letter that they give you on discharge. I wasn't actually told. I was given a bottle of pills and told I was going to get better if I took them. I didn't realise how serious it was. I was under the impression that it was a simple thing just like an infection that you could get rid of. Then I did my research.

The Diamox really affected me and I suffered badly from the side effects. I was up in bed for the best part of 6 months until the side effects slowly wore off. I still have some side effects but they aren’t as severe as they were then. I was so scared in the beginning and I still am now. I have my good days and bad days but I’ve got to carry on going. The headaches are excruciatingly painful and IIH comes with a whole host of other symptoms too. I myself have learnt when my pressures high or I’ve got a migraine so I manage my condition as per my needs.

Having IIH has had a massive impact on my life and has really knocked me for six. I’m no longer the person I used to be and if I try to be I pay a hefty price health wise. Having this chronic condition hasn’t only affected me but that of my daughter but together we get on with things. IIH is an awful condition but in a way I’m grateful to it. If it wasn’t for the IIH and IIH UK I wouldn’t have met some of the most wonderful people I’ve ever known. I have met some lifelong friends through IIH UK and I’m eternally grateful for their help and support.

Lisa x

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