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Personal Stories - Living with IIH


It was on the evening of 17th May 2014, when I got this sudden onset of a headache, and it wasn't your normal headache, it went straight to my neck and back. I felt nauseous, then I went all hot and clammy and of course, photo-phobic. Photo phobia is sensitivity to light.
I went to A&E that night, and spent 4 hours waiting to be seen, with a pounding headache, a stiff neck and sore eyes only to be told it migraine. I ended up spending the next week in bed with the curtains constantly shut, along with the door, to block out the light and noise, It was horrible. Read more


It was January and I had decided we were going to have a family check-up at the dentist and opticians, my four year old son hadn't been to either before and we hadn't had our eyes tested for about 10 years! Well when we went everything went fine and then at last it was my turn. Everything seemed to be ok until the optician said I need to refer you to the eye hospital to do some routine checks. So I waited a few weeks and I had an appointment come through and after spending a whole day at the eye hospital and after test, after test, they confirmed they thought I had Papilledema. Read more


I was 20 years old when I was diagnosed; it started with a persistent migraine. After four weeks I finally decided to book an appointment at the doctors. I was first told I had a head cold/sinusitis and to book another appointment if it wasn't gone within the week. After a week I noticed my vision would become double when I titled my head, I told the second doctor this and he asked for an MRI at the hospital. A few weeks went by and I still hadn't heard from the hospital so a friend suggested I should try Specsavers. I made myself an appointment, when I arrived they looked in my eyes and seemed concerned.Read more

Share your stories and help us raise awareness and aid for people living with IIH. If you have a video about your experience with IIH, please send it to with your name and details.



"Just when I think I have learned the way to live, life changes." Hugh Prather



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