I Have IIH Are You IIH Aware? Video

My IIH story..............................So Far

I would like to introduce my self my name is Tracey Beamer, i am married to the most wonderful man Stephen, with 4 lovley children ,Katie-jayne,21yrs,Gemma 19yrs, Joshua 17yrs and Chloe 13yrs....... my journey with IIH. well i will start at the begining will warn you its a bit of a long one :-(...... i have suffered with headaches for a long long time, was told it was migrane's no treatment given just carried on with it then in august i was suffering with general all over pain,mainly in my joints i went to see my gp who sent me for blood tests thinking it was arthiritis they all come back clear so she refered me to a rheumotoligist (excuse my spelling ) who diagnosed me with Fibromyalgia Sept 09, my headaches seem to be getting worse so went for a eye test to be sent straight to eye hospital as the pressure was really high behind my eyes, the doc i saw at the hospital was brilliant ( i would reccomend him to anyone) he sent me for a mri scan which i had in nov 09 two weeks before xmas 09 i had a phone call they wanted me to have an urgent mrv scan an lumber puncture before i went back to see my doc, this was a worrying time as it was obvious they had found somthing but i had no idea what!! anyways march 2010 arrived still not had this urgent scan or lp, but time had come for me to see my eye doc, unfortunatley i didnt see him i saw his understudy, who told me i had pressure on the brain!!!!!!! WHAT !!! he then asked if i had any questions me and hubby were so gobsmaked as we couldnt think what to say he said bye and sent us on or way........the next day i rang the eye doc's sec explained what had happened and she got me in to see him the next day... he then explained it all to me that i had iih and what would happen from then on he put me on diamox for my eyes,April 2010 the time had arrived for my mrv scan and lumber puncture at the QE had my scan then after waiting around for 4 hours i asked when i was having my lp one doctor said didnt think i could have one as it would be too dangerous, i asked what do u mean apparently my brain had slipped down the back of my neck, they decided to do the lp anyway my opening pressue was 36, and was sent home, to try a cut the story short...... was refered to a mr matthews at b'ham eye clinic for my iih and a my g flint at qe for my chairi malformation, at the moment i am in limbo as they cannot do the op for the chiari as my icp is to high, but thay cant give me a shunt or an lp as it would bring my hindbrain hernia further down my neck..... HOW DO I GET MY PRESSURE DOWN.?????????? as i really need somthing going through a really rough time at min constant headache,constantly sleeping ...i slept for 21.5 hours straight through the other day and didnt feel as though i had had enough sleep, if anyone got any ideas please share them ...................oh by the way was told to lose weight by my iih doc so have lost 2 stone only for the headaches to get worse but still losing weight....
Thank you for listening ..... xxxx