Are there any suffers out there that would like to share their stories or advice with everyone else?
I am a suffer since 2000. Have recently been having more problems with vision and headaches. Would like some input from fellow sufferers.

I was walking for my exercise one evening this week and all of a sudden both eyes lost central vision for approxamiatly 5-10 minutes. I could still see with my pereperal vision. There was a black circle with a halo of light around it. That would be the best way to describe it. During all of this, I had a pain in the top of my head, it lasted a while aftewards also. But all that day beforehand, I felt terrible, I had no energy just fatigued and had that pressure feeling all day. This is the first time it has ever happened to me and I was scared to death. I was all alone when it happened. Is this the norm?
Any input or info. would be appreciated.

Talk to people on *********.org with arnold chiari malformation and they also have a pseudotumour cerebri area for you to talk with...I had suspected PTC but was lucky to not get that on top of chiari and syringomyelia

hi liberty,
i have had iih for over 3 years now,iih is a very disabling disease that can take your sight.there any many varied symptons but the main are being headache that will not go with any medication and most have pappildema (swollen optic nerves) although pappildema may not be present with everyone.
all scans will come back clear and the only real test to check for iih is a lumbar puncture. after diagnosis patients are normally put on diamox to reduce the cerebal spinal flow.
if vision deteroraites any more then a onsf can be performed (where a slit is inserted in the optic nerve) or a lumbar or ventricular shunt can be inserted to divert the csf.
i have put posts on this board before regarding iih,ptc,bih and myself am having a ventricular pereteneal shunt inserted under stereotactic guidance any day ,so am hoping this is the end of all the pain.
if u think yoyu have iih then you should see a neurologist as soon as possible and keep a check on your eyes.
please ask if you need any more help xx