My IIH

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I started to have really bad headaches and a funny eye pain in August 2015 buy I thought was due to working so much so I didn't do anything about it. In September 2015 I went for a routine eye test at the Opticians where he did retinal scans and exams and he recognised that I had a condition called Papilloedema he was concerned about this and made and urgent referral to my GP.

The next day day I began to feel very unwell and saw the GP with my referral. She could see that the back of my eyes were swollen also but noticed other things weren't quite right about me. She wrote a letter to the hospital on-call neurologist and rung my local A&E to expect so that I would have to sit in a waiting room and see triage etc. I went straight to A&E and saw three A&E neurologists 2 of whom could not see the swelling in the back of my eyes and tried to palm me off initially as having migraines. I became frustrated at this point and argued the toss because I knew they were wrong, so they fetched the senior neuro who checked me over and confirmed they were wrong and decided the send me for CT scans and admit me to the neuro ward. Unfortunately on the way to the CT scanner I began to feel more unwell and dizzy as the pressure began to go up and I passed out. 

Once I was okay again I had CT scans which thankfully were "unremarkable". I then preceeded to spend 3 weeks in a hospital bed with various people poking me trying to figure out what was wrong.  Eventually they tried a lumbar puncture on the ward which was unsuccessful because they were unable to secure the needle in the correct position.  2 days later I had another Lumbar Puncture but this time it was xray guided and successful and thus I was diagnosed with Idiopathic Intracranial Hypertension. 

Unfortunately, due to what seems to be a never ending list of hospital check ups. Lumbar Punctures and medication I have since lost my job due to this condition  so I hoping somewhere along the lines in my life time we can come up with some kind of cure because at the age of 23 I have already forgotten what it feels like to be "normal".