Benign Intercranial Hypertension (BIH)

Benign Intercranial Hypertension ( BIH )



Gday, My name is NikkiBlu and im a 30 year old woman from Sydney Australia that has just been diagnosed with Benign Intercranial Hypertension ( BIH ) it is a rare 1in every 100,000 people (mostly woman) get it. BIH is a condition were my spine create too much spinal fluid and it is putting pressure on my brain. Our brain sits in spinal fluid under our skull so when there is excess fluid it squashes my brain and is squashing the nerves and blood vessels going to my eyes, this loss of blood flow is what creates the blurry vision spells and dizziness. I also have a headache 24/7.

I was diagnosed with BIH about 8 weeks ago ... after i had a 5 day period of a very painful stuff neck and dizzy spells and blurry vision episodes where i lost my vision for about 20 seconds at a time ... after blood tests, CT scans, ultra sounds and x-rays and finally a lumber puncture (LP)- a LP is a needle in your spinal cord to drain the spinal fluid. i was then diagnosed with BIH . i saw an Osteopath who sent me to my GP he organized all my tests, then he sent me to an ophthalmologist, and finally a neurologist .. i had a LP when i was 8 so i remember how painful it was and was really scared when my neuro Dr told me i would have to have one. he sent me to Ray scan to have it under CT machine to test my fluid and flow rate, my fluid was fine no sign of any nasty bugs but my flow rate was very high it was 38 .. (this means that there was too much fluid in there and it flowed out very fast) i had the LP ray scan in Liverpool Sydney the Drs there were really wonderful and even though it did hurt they was very caring and really looked after me... it costs me $250 after my Medicare rebatehe put me on 1/2 twice daily Diomox tablets, these are horrible, they give me a metallic taste in my mouth especially with carbonated fluid like beer and soft drink, and i get tingly fingers and hands and sometimes my feet. My hands and feet are also very sensitive and often feel very week ( like trying to open a jar is often hard) I am getting tired more easily as well and at night time my eyes feel like they are hanging out of my head, in the mornings it takes me ages to wake up and my eyes are heavy for about 30 mins… Everyone is different and has different reaction to the LP, the drugs to BIH. after 5 weeks on the diamox i went back to my neuro who said cos im still having the speckles of light in my vision ( like looking through a kaleidoscope) that the drugs are not working... and i would have to have fortnightly LP ... to this i was not impressed... As they cost $250 (after Medicare rebate) to get them done at ray scan with a CT machine i asked if there was a cheaper alternative. So he booked my into Liverpool hospital to have it done via xray ...... So on Tue i rocked up to the hospital got in my nice lady hospital gown and got my anisetic which bloody stings ... after about 20 mins of trying to get the needle in and changing needle size and trying again... the tears started streaming down my cheeks... he tries to no avail for the next 25 mins till I finally said I don’t want to be a pin cushion if you can get it in I will go to ray scan and pay to get it done with the CT. he told me he was going to get another opinion the next Dr came in and started poking around by this time I had hot flushes and the sweats and was really nauseous … after another 45 mins I begged them to stop as I could not handle the pain anymore I was sobbing in pain and was unable to hold still any longer anyway …. I layed in the hospital for about an hour and just wanted to go home and get into my own bed
it is now 4 days later and my back is killing me .... i feel like a pin cushion. So next Tue im booked back into ray scan where i will pay the $250 just to have a pleasant and successful LP compared to the hospital visit.So im booked back into get one with Ray scan with the CT on Tue at least it is over and done with in 25 mins.. Im not impressed with the $250 but if it has to be done it is worth paying the $250 and getting it done with less pain and more accurate machines to get it in right …

My Neurologist is Dr Griffith in Liverpool he is good except he want me to have fortnightly LP's ... i dont know if i can handle going through that every 2 weeks ....
i read on another site tonight that she thinks BIH causes weight gain not the other way around... i have gained 15 kgs in the last 5 months for no reason ... and how am i meant to loose weight when i feel so tired and sore all the time ??? it is a catch 22... the more awareness we have about this the better. if 1 in every 100,000 people get it ... that means that there is thousands of people out there that also have and most proberly done even know they do ... Im getting use to having a constant head ache but it hurts when I cough and can feel the pressure on my brain a lot more… im looking forwards to learning more and finding a cure to this really crappy disease. NikkiBlu