Hello,

I was diagnosed with IIH in the spring of 2010. I was having some vision changes that were bothering me and headaches that felt like I had a constant sinus infection. I'd complained to my doctor a few times about these sinus headaches and a whooshing noise in my ear. Of course, there was nothing wrong with my sinuses or my ear. It wasn't until I saw my eye doctor for a routine exam that he spotted the papilladema and sent me for further tests. The first few months were terrible. I was what I can only describe as motion sick all of the time. I found I was allergic to Diamox. I tried numerous things for the headaches and nothing helped. I started taking Lasix and things mellowed out. 'Mellowed' may not be the word other people would choose, but for those of us living with IIH, there are some things we just think of as normal. I still have headaches, mostly in the morning, but sometimes whenever they please. I still have a lot of noise in my ear. And the vision changes are daily. I feel queasy from time to time and the motion sickness I have always had is amplified by the IIH.

In 2011 when I saw my opthamologist, there were few changes since my diagnoses. The plan was to continue the Lasix and losing weight. I did so. Because I am uninsured, I didn't have an eye exam again until last month. Immediately my eye doctor contacted my primary care provider and they spoke with a neuro-opthamologist. I was told I needed to immediately be seen as I more than likely need a shunt. Apparently from 2011 to 2012, I lost all but the center vision in my right eye. This is new and scary. I don't know anything about these shunts and joined this forum to read others' stories about them. I hope that this helps me, but I am afraid of the long-term implications of having a shunt. For whatever reason, I find this part of the IIH journey much more scary than the original diagnosis. I had simply hoped that medication and weight loss would make the pressure decrease. Apparently that just isn't how it works. At least not for a lot of people.

Thank you all for sharing your stories so I could learn from them and learn more about IIH. I look forward to interacting with you all in the future.

tar85

To the group

I was diagnosed april 2011, I have had many up and downs and am getting worse and there has been talk about getting a shunt for myself. I set out to find all the information I could about watched other people's videos on YouTube and saw so many bad experiences, I was getting freaked out. Until I came to find the videos of a girl in the London area. Here videos have gave me hope and help me not be "So" freaked out about the surgery. I have a appointment with my dr oct nintha nd hope I come out of it with a better plan and maybe the shunt in my future. I'm tired of feeling like this just like everyone else. I'm tired of taking pills that don't seem to help. There is alot of I formation and printable things on her to that are great. LookiNg forward to interacting with you and talking with you more. I hope your having a good day, ttyl

~Nichole

Hello Tar and

You will find that there is indeed lots of very good info available on this site. We are fortunate to have many members, from all over the world, with many varied experiences.

I had an lp shunt installed last November. Mine has been incident free. And a shunt is often considered when vision is threatened. Since you have already lost some of yours, some corrective action needs to be taken soon to save what vision you have left and maybe even reverse the vision you have lost. I suspect that the main issue will be your lack of insurance. Please check with your local hospital and see if they have charity care or something similiar to that so that your possible surgery would be covered. That would help reduce your stress. Perhaps your surgeon would be willing to help out too. Sometimes they will do surgery for those in need at no charge. I hope that will happen for you.

In the mean time, have a good look around, and feel free to ask any questions that may come to mind. Or come by just to rant and rave if you feel the need. That is fine too. That's why we are here.

Welcome to the group!!! I'm sorry you've had such a struggle..vision loss is so scary! I also didn't respond well to meds and ended up w/ a lumbar shunt. My vision immediately responded and I ended up getting it all back, so there is hope. I've had the same shunt since 2002. I've had three revisions on the valve or catheter, but they've been simple surgeries. Honestly, the shunt saved me and my quality of life has improved drastically..definitely better than I did w/ meds. I think it's important to be prepared, so I would review the print outs and guides..make sure you have a list of questions ready for the surgeon. Let us know if you have any questions or need any additional support.

Take care,

Julie

Hi Tar! Welcome to the group! We're glad you're with us.

I don't have a shunt myself, but there are a lot of folks here who I know can give you a lot of information and support with that. *hugs* Feel free to ask whatever questions you may have sweetie.