I was diagnosed in 2005 after spending a couple of years going backwards and forwards to my GPs and getting told my job was too stressful, to go home, take some paracetamol and rest.
My headaches got continually worse until I ended up spending a whole week of work being completely bed-ridden as all I wanted to do was sleep and everytime I did get up, I was sick and couldnt see properly. By the Friday of that week, I indentified that I had severe double vision and once again returned to see my GP. He found a papilloedema behind my right eye and when you see all the blood drain out of your doctors face and he tells you to go immediately to a hospital that isnt even your local, you panic.
I ended up in A & E at Addenbrookes Hospital that evening and was admitted almost immediately and had an emergency lumbar puncture in the middle of that night following a CT scan. I was too ill to remember what my CSF was but I know it was incredibly high. The LP itself was stressful and painful as the doctor carrying out the procedure didnt wait long enough for the anasthetic to work.
I then spent the next week in hospital having CT scans, MRIs, I dont know how many appointments with the eye specialists and to top it off....several more lumbar punctures. These ones were much better and didnt hurt as much. They were done by a female nurse who explained everything to me as she went along and made me feel completely at ease. It was the little things like telling me she couldnt paralyse me as the spinal cord didnt go down that far. By the time I had the lastone, I was returning to work immediately after the procedure as they simply didnt hurt anymore. In other words, they just werent a big deal as each month they seemed to hurt less and less.
Eventually I was advised that I didnt have a brain tumor but infact I had a condition called IIH.
Just over a year later, during which I had a lumbar puncture every month as the fluid would rise so quickly, I eventually had a shunt fit in my brain in June 2006. I can now honestly say that I have my life back and its wonderful. I wouldnt say life is the same. Life has had to change and is very different due to the restraints of this condition. But I can now get up most mornings and actually get through the day without a grumble and without pain.
Each month when I get my period, I end up in bed completely blown away by the pain in my head and it happens EVERY month, but only for a couple of days. The hospital have said they could adjust the valve in my shunt to ease the pain but it may very well compromise how good I feel the rest of the month. So its very much a case of sucking it up, but it doesnt help much when you would willingly let someone chop your head off because of the immence pain.
I have started to get more headaches at other times in the month which is concerning, but I am monitoring the situation closely.
OK, I have written far more than I planned and I do hope I havent bored you all too much anyway.
Take care
Christy
Subject: christy - Diagnosed in 2005 
Wed Mar 24, 2010 2:35 pm
for sharing your story with us, you certainly went through the mill getting diagnosed, so I can understand how frustrating and worrying it all was. I'm glad the shunt is working for you and has managed to help you get your life back on track!
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