Hey there! 

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! 
Mmidl

Welcome to the group! I'm sorry to hear that medications don't seem to be working. They worked for me at first, but I ended up with a Lumbar Shunt and 15 years later had a Ventricular Shunt installed. They do have other options available now, such as optic nerve sheath fenestrations and venous sinus stenting. You can find more information regarding these procedures at http://www.ihaveiih.com/f59-iih-surgery-and-information and under the General Discussions tab.

Some members have found relief with alternative therapies such as reiki, acupuncture, etc. http://www.ihaveiih.com/f13-alternative-therapy. Others, have found some success in changing their diets http://www.ihaveiih.com/f36-diets. There is unfortunately no cure, but finding the right combination can relieve some symptoms and side effects of medications.

Look through the information and let us know if you have any questions or concerns. We will do our best to answer them or at least point you in the right direction. We are also here to provide you with emotional support because we know how overwhelming and scary this process can be. Please let us know if there's anything we can do to help!

Take care,
Julie

Will keep my fingers crossed..let us know if we can help in any way!