My IIH Story

I became unwell in March 2016. My doctor reffered me to the Endocrinologist as he thought I had a hormone imbalance. I carried on with a headache for 8+weeks,passing out and my vision becoming worse.May 2016 I booked myself in with the optician.....1.5 hours later in there I was told NOT to drive and was sent to hospital where more tests happened as I had a 'squashed' optic nerve. I was sent for an emergency MRI scan,this showed fluid on the brain. May 16th I had my first lumbar puncture measuring more than 35cm. Doctor took it down to 17cm and I was diagnosed with IIH. Things didn't stop there......3 days later my fluid pressure was back and was told to keep taking acetazemolide until I see the neurologist......where am I now August 2016 I have had another MRI scan as neurologist thinks I also have blood clots in my head (hence the headaches)

along the way I have had lots of horrible side affects and symptoms. I can't wait until my head is all stable and I feel 'human' again.