Kerry's Story

My life changed direction.

Summer 2009 was a bit stressful. Having moved 100 miles to our new home and then sorting out new schools etc. for the children I wasn’t surprised when I started having headaches. At first I didn’t think anything was wrong but gradually became aware that the pain in my head was getting worse and it was there all the time. It never seemed to give me a break. So when I noticed my vision wasn’t right I thought I just needed some glasses, so made an appointment for the opticians. I was told my optic nerves were swollen and sent immediately to my nearest eye hospital where a specialist saw me and explained it could be one of 2 things; Benign Intracranial Hypertension or a brain tumour. I underwent numerous tests over the next couple of days. MRI scan, several CT scans, Lumbar Punctures and blood tests. I was diagnosed 4 days later with BIH/IIH.

I was very thankful that it wasn’t a brain tumour but naively thought I would just be given some tablets and my life will carry on as normal. Throughout my stay in hospital it gradually dawned on me that although they knew what it was, they didn’t have a cure. I was giving Diamox and instructed to attend regular appointments with both my GP and my neuro consultant. My symptoms got worse. I started getting pulsatile tinnitus, became dis-orientated, suffered with double vision, photophobia and the worse for me was memory problems. I had changed from a well-organised confident woman to a scared and frightened little girl.

Now over 2 years later, I am still suffering, but feel lucky that I was diagnosed quickly and am not too debilitated by it. IIH has changed my life. When I look into a mirror it’s a different me looking back, however, I don’t spend my time feeling sorry for myself as there is always someone out there worse off than me.

I have a fantastic support network made up of my lovely family and my wonderful IH friends. IIH UK has played a huge part in my understanding of this debilitating disease and has provided me with hope.

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