Idiopathic intracranial hypertension - anyone have it?

I have been given a potential diagnosis of idiopathic intracranial hypertension. I have to go for an MRI in the next couple of weeks and then depending on those results, I might have to have a lumbar puncture to confirm.

Does anyone else have this or know anyone who has it? The neurologist was great but I would like to hear experiences of someone who actually has it. Things I am interested in is treatments, what were their symptoms, how did they get diagnosed etc. My neurologist is surprised I am not having any symptoms (i.e. no headaches, blackness in vision, tinnitus etc). It was only picked up due to an eye test I had with an optometrist in March this year.

Thanks

hey, I have a friend who has it. Are you on fb? There are a fair few groups on there people who have it. And my friend uses it a fair bit. Ill come back in and give you more info later or feel free to pm me :) (Im off to bed, with a very cranky bubba :( )

Yes I am on Facebook. I would be really interested in any information you can provide.