Hi everyone,

I am new to the forum and this is my first post.

I was diagnosed with IIH (also known as pseudo tumor cerebri). This after being misdiagnosed for 2 months. I'll spare you guys those details.

I first started to notice that my left eye was dark at the lower side so if i talked with my hands i could not see them move. I thought it was weird and made an appointment with an ophthalmologist. I got an oppointment 3 months later so i didn't worry anymore with it, i thought i could wait 3 months. But then i started to have daily killer headaches. And my vision would get completely dark for about 15 seconds and then back to normal. And then again dark etc. I just could not take it anymore so one day i decided to go to the ER. There they did a ct scan and everything was fine even perfect the neurologist on duty said. But she did do some test with her fingers and saw that i really could not see when she moved her finger on the lower part of my vision. So i got an emergency oppointment with another ophthalmologist for the next day. The ophthalmologist saw that my optic nerves were very swollen and did some visual field test to confirm. Turns out both eyes were extremely damaged and had visual field loss. He directly made an emergency oppointment for me at a neurologist for two days later. When at the neurologist he emediatly send me to to hospital for a lumbar puncture. There the opening pressure was 48. Extremely high thus. And i had to stay at the hospital.

Here is where all the misdiagnoses started. I stayed 4 weeks in the hospital on different medication including Diamox for the high intracranial pressure. They did series of tests, including blood tests, ct scan, mri, mrv and angiography. Everything was ok, everything was perfect. Nothing to explain the high pressure. So they thought maybe i got better so they did another lumbar puncture to confirm and i should be able to finally go home. But no, pressure was at 45. So now i've already been 6 weeks in the hospital. So finally then they diagnosed me with IIH. Very odd diagnoses for them because I am not overweight (bmi 20). Still it was the only one who would fit since nothing could explain the high pressure in my head.

Then it was time to decide what to do. Because my eyes were getting worse. The dark flashes were getting longer, the headaches still terrible and something had to be done to save my eyes. Otherwise i would get blind very fast. They opted to operate soon. It was going to be a shunt operation and the decided that the ventriculoperitoneal (vp) shunt would be the best option. The next day (july 11th 2013) i had my vp shunt operation. They had to play with the valve a while before we got the pressure at the right level for me. (Thats now 20). 10 days later I got to go home. I felt better. The end? WRONG

2 days at home and I started to get extreme headaches again. Worse than before. And immediately after the operation i started to have a shooting pain in my stomach. I went back to the hospital for a week. Did tests but everything was fine with the shunt.

Now almost 2 months after the operation I still have the headaches and the shooting pain in my stomach. My eyes are doing way better though. I am really gratefull for that. But 24 years old with daily super extreme headaches and shooting pain in my stomach is not really the life i had hoped for.

That's in short (as short as i could) my story. My life is a Daily struggle but happy that i have my vision and could share my story. I know that me and my neurosurgeon and neurologist will find a way to stop the headaches. Its a matter of patience and faith now. I guess.