I've just sort of been hanging out on the boards for the last few months or so, and I thought it was time to say "hi" to everyone. ^_^
I'm a 5 foot, 23 year-old female, married, was hoping to start a family soon, am attending college, and am in poor health (chronic asthma, chronic mild/moderate eczema, food/environmental allergies, and other conditions that my PCP is currently exploring). I have been sick for most of my life, but was only diagnosed with IIH in August of 2015.
My symptoms for IIH became noticeable in June of 2015, I thought I just had a headache due to a history of migraines, and put off seeing the doctor for a month. I was initially diagnosed with a sinus infection and a tension headache, and sent home. The following week, my eyes began to cross with no explanation; I had a previously scheduled appointment with my allergist, informed her of what was going on, she addressed it as if it was caused by a sinus infection. Two weeks later, I ended up at an optometrist's office for the eye crossing and was immediately sent to another specialist who did further imaging and sent me for an MRI and blood work because she saw papilledema with a 6th nerve palsy and was immediately concerned. I was then sent to a neurologist at the beginning of the following week, with no update as to what was happening and was informed that I potentially had IIH and would need a lumbar puncture to confirm. That Thursday, it was confirmed, I was put on 500mg of Diamox, increased to 1500mg within the next month, and sent home. After moving states with my husband, my current neurologist prescribed me Topamax because the side effects of the Diamox were too much to cope with daily. Currently, we are planning a discussion within the next week to figure out the next step before any surgeries since the Topamax does not appear to be working and I am still having blurring/swelling in my optic nerve.
It's been nerve-wrecking reading over all the information, or the lack of information, that there is on IIH, and it's been a struggle for my husband and I now that we're dwindling out of options for treatment that don't involve surgeries.
~Best of luck!