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.