Hi my name is Lyndal i was diagnosed less then a month ago and living in a small town and flitting between my place on my own and with my parents as well as numerous trips to melbourne it has been a very long month.
i didnt really notice much when it first came on, i noticed my vision (which is already quite bad normally) seemed to be worse but i put it down to needing new glasses and so just made and appointment with my optomitrist. on the 2nd of November i began experiencing headaches but got a cold symptoms soon after and put the headaches down to that though nothing eased them i just assumed between my eyes and being sick it was nothing. the cold left but headaches remained and so i put it down to my poor eye sight having suffered headaches from poor vision before. On my appointment with my optomitirist he was able to find that i had paplilodema and from there i was sent straight to the doctors who sent me straight to emergency where after hours of waiting i was finally given an MRI and it was confirmed i had IIH. The doctor then explained i needed to have a lumber puncture done. this alone freaked me out as i have had some bad expereinces with them and having mild scoliosis and uneven hip/leg hight preforming a lumber puncture on me is not easy. after some convincing the agreed to do a guided on the monday and begin me on Dimox. i returned home on strong pain medication and took it easy. By saturday afternoon i was experience sever headaches or worse then what i had become accostomed too. i was hurried back to emergency by my parents and there i had a lumber puncture done. i was admitted and monitored saturday night. Sunday morning i complained of further headaches not quite as sever but they were still there. it was here they first mentioned sending me to Melbourne (about 3 hours away) to see a neurologist. however Monday morning where my headaches had returned to thier full strenth i was sent home to continue taking the dimox and strong pain medication. The next few days saw me sleeping most of the day and taking medication. By that Thursday my headaches couldnt be controlled by anything and i made an appointment with my GP who send me back to emergency and faxed my details to a neurologist who was a bit more local. The hospital then send me home by 11:30 as they were too busy to conduct my lumber puncture and was planning on organisng a guided one for the next day. Friday moring at about 9:15 i recieved a phone call from my GP offfice saying the neurologist had called and i needed to get into emergency straight away. upon arrival and much stressing on my mothers part i was finally seen where my second lumber puncture was done with very little results. i was then moved a short 3 hours later to have my eyes rechecked as upon arrival i couldnt clearly make out the top letter (they told me i was pretty much blind in my left eye) upon returning to bed and laying down my headaches soon increased and nausia hit, and i was given more for pain and they began really trying to get me a bed in Melbourne to see a neurologist.
By 7 that night i had a bed, my flight was arranged and by 8 i was on my way. once in Melboure i was both the neuro-sergeon and neruo-opthamologist and a quick disscussion was had between them and my surgery was scedualed for 7 the next morning for and LP shunt to be put in. i seemed to be recoving well after it and was sent home on the tuesday. unfortunatly for me i was to suffer an abnormal headache late friday night and rushed back to hospital much to my parents fright. during my trip into town (my parents living 15 minutes away from the nearest hospital) i was sick and the headache worsend. upon arrival at the hosptial i was taken in almost immediatly morphine given and more rounds of CT scans and x-rays. they were send back clean but the neurologist in Melbourne wanted to see me for himself so back i went. i have no been home almost a week and taking it easy but the headaches i was suffering after the shunt was put in changed 2 days ago and became more sever yesterday. we are now on watch with my headaches and may possibly be going back to Melbourne for a 3rd time to have my shunt looked at.
Im still new to all this and hope i used the right terms and things, emotionally im still trying to come to terms with it all and have no idea how its going to affect me or anything, some of my friends have been really supportive others not so much which makes it hard sometime when they dont understand im still recovering. im now hearing rumours about people i work with telling each other im lazy and not doing my job. i asked for it to be kept quiet as im still unsure how to explain it to everyone and what happens from here especially with the problems i keep running into.
Any advice anyone has would be such a relief as i feel so in the dark about it all. thanks

Bless your heart! I'm so sorry this has been such a long, painful process. I actually ended up with severe pain and seizures after my lumbar shunt surgery. Fortunately, it was an easy fix..they gave me two caffeine drips. I was bouncing off the walls and horribly nauseous, but it stopped the seizures and the headaches. They basically said I lost a lot of spinal fluid very quickly, so would take time for my body to adjust..have they explored low pressure options for your symptoms?

Work is still very difficult for me. We have to be careful about how much we share and who we talk to about it. You may want to look through the Useful Guides and Printouts section for suggestions. We have advocates for chronic illness here, but I'm not sure who you'd contact for suggestions in Australia. Hopefully other members will have more information for your area. You have to take care of yourself first and foremost though.

I hope you find some relief soon! Please keep us posted and let us know if you have any questions or concerns..we'll do our best to help you through this difficult time!

Julie