My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri

i was diagnosed with BIH in jan 05 and had all the regular symptoms and was put on diamox and bendroflumethazide and regular lumber punctures helped although by the end of 2007 i was having lumber punctures every 3 weeks so my neurologist referred me 2 a neurosurgeon and i had a shunt fitted in march this year and all has been well since until 3 weeks ago wen my headaches returned and after more lumber punctures a xray showed my shunt had moved to my pelvis, the docs wernt too worried and have left it as they said it would cause more problems to remove it but they have put a new shunt in last week and im recovering fine. i have had 22 lumber punctures and 2 operations to help and they all do but i hope this shunt will not move again.

BIH MY STORY MY 13 YEAR OLD DAUGHTER WAS DIAGNOSED WITH BIH TWO MONTHS AGO. IT ALL STARTED ONE MORNING WHEN SHE WAS GETTING READY FOR SCHOOL SHE BLACKED OUT AND HAD A FIT. EVER SINCE THEN SHE HAS HAD A PERMENANT HEADACHE AND PAIN DOWN HER SPINE. SHE 'S VERY LUCKY HER EYES HAVE NOT BEEN AFFECTED SO FAR , I HOPE IT STAY'S THAT WAY . SHE HAD AN MRI STRAIGHT AWAY TO RULE OUT A TUMOUR, THAT WAS CLEAR THEN SHE HAD A LUMBER PUNTURE THAT TOLD THE PRESSURE WAS THROUGH THE ROOF. SHE JUST HAD ANOTHER LP WHICH WAS THE SAME SHE WAS PUT ON ACLOZOLIMIDE OR SOMETHING TO THAT NAME BUT IT HAS NOT WORKED PRESSURE STILL VERY HIGH . NOW I'M JUST WAITING ...

I was recently diagnosed with benign intracranial hypertension. its a very rare disease. only 0.9 out of 100,000 have this condition. its basically excess fluid around the brain thats not flushing out from the body. i am awaiting for a letter to come from the hospital to tell me wots has to happen next which i am not looking forword too. i also had to have a mri scan 3 days ago which wasnt pleasant either as i am closdofobic so it was very difficult for me. i found out i had this condition after i went for a regular check-up at the opticians, i knew something was wrong cos i was in there for a while and had other opticians coming to have a look. he referred me straigh to ...