Miss Squeak Story Interacanial Hypertension!

My life changed direction.

Summer 2004 was a bit stressful. Having moved to my new home and then sorting out new stuff in to the house for the my boys  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 at Royal Perth 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 in  Hospital for 2 weeks . 

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 having no sight on the side like tunnel vision and any kind of light hurt my eyes like they were burning out plus some memory problems.  I had changed from a well-organised confident woman to a scared and frightened little girl.

Now over 10 years later, I am still suffering, but feel lucky that I was diagnosed quickly and am not too debilitated by it but on bad days I want to crawl under a rock and hide.  IIH has changed my life.  I still have to have lumber punching done and just had one this week and it's us the worst one ever I still have a very bad headache and throbbing in my eyes but another day of rest and I should be back to myself .

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 Monster who although they don't understand how much pain I am in are still very supportive to me and love me for just being me I thought I would share this as not may people know I have this as I look and act normal haha but it's is a serious condition that I just have to live with and that's that ! I hope it's has helped you to understand me a little more ! 

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Thanks for reading my blog .

Miss Squeak xx