I was diagnosed with IIH in 2006, after having symptoms for over two years. I was 19 when I was diagnosed, and my IIH was due to medications, mainly steroids used for another condition that I have.

Since the time that I was 3 years old I had headaches. But then when I was 16 I developed trigiminal neuralgia, because this condition is not seen in people under the age of 50 or so it took about 2 years to figure out what that was as well, until it was pinpointed doctors tried all sorts of meds, including large doses of steroids taken for weeks to months at a time to try to help the pain. During this time I started to lose my vision, I went from 20/20 to 20/200, and almost no side vision by the time that they figured out that it was IIH. When I did finally have a firm answer I spent weeks at a time in the hospital monitoring my levels. After trying Diamox for about 3 months my team decided that it was time to put in a shunt, as my pressure was only going up.

During my first VP shunt surgery the surgeon caused a intercranial hemmorage, causing some brain damage, and lots of grand mal seizures, followed by a month in the hospital.

For about six months things went semi smoothly, but then my shunt mal-functioned, and I had to have it replaced. That shunt also malfunctioned, and within two weeks I had to removed.

I was hoping to go without a shunt but within a month my pressure was so high, that my ophthalmologist called my neurosurgeon at the airport and told him he needed to put a new shunt in the next day, and that was my forth surgery. After this surgery I felt better than I had felt in years, however about a week later I woke up with the worse headache I think that I have ever had. I went to the E.R. and they discovered that I had developed a shunt infection. I was transported to a different hospital, and later that day they removed the infected shunt. By this time the infection had, of course, gone in to my brain. I was in the hospital for several week, and after that I had a pic-line in my heart for the next three months so that I could have IV antibiotics.

After my three month coarse of antibiotics, LP's to make sure that there was no more infection in my spinal fluid, and to check the pressure (which they forgot to do), I went back in for surgery to put in my new shunt.

This one worked pretty well for about 9 months, but I had to go and get the valve replaced because it mal-functioned.

That was just over two years ago that I had my last shunt surgery. About 8 months ago I started to fall, vision is getting worse, headaches are much worse. I had a full work up at neurosurgery in May. My shunt is working fine, everything else is fine, except for my opening pressure is higher than it should be.

My neurosurgeons say that because the shunt is working and it is completely open that they can't do anything, my neurologist says that because I already have a shunt that he really can't do anything. I feel like a ping-pong ball right now, all I ever hear from them is "you’re a very complicated case" or something of the like.

At this point I am already legally blind due to the IIH, my vision is less than 20/600 and no side vision I work with a guide dog (best thing that has happened to me since I got IIH). Now I am having to decide if I will be able to stay in school. I know that is not logical right now, my GPA has already suffered due to the IIH these last 8 months.

So, very condensed version, that is my story of IIH.

Still fighting!!!

hi well you have been through alot and i really feel for you. at the moment there is alot of excitement over a greek study using octreotide which has apparently really helped +even cured people with iih. Check it out on google and maybe ask your neuro about it as from what i have read the worse people like you are really benefiting .Its still in its early stages but check it out it sounds really good no more surgeries for some people, alot of dr,s dont really know about it so maybe you can give the information to your neuro and ask him to check it out and see if you could try it x

I have read a bit about Octreotide, both on IIH support and the internet, however my neurologist does not no anything about it. I will keep pushing them about it, something will have to give eventually.

print out about it and give it to him, also tell him to watch https://www.youtube.com/watch?v=p3Nlqg9BzPo charlottes success at using it which her parents fighted for. some nuero,s dont like it if you know more than them

Thank you for sharing your story Renskip, you have definitely been through a great deal, it is so terrible that your vision and headaches have gotten worse, but yet great that you are still fighting!