Hi I'm Sara, I live in Des Moines Iowa.  Diagnosed in February 2015 with IIH.  On a routine eye exam my optometrist noticed an enlarged optic nerve and told me I should get it checked out.  In December I started having horrible headaches that turned into migraines, you all know the story.  I had an MRI done, it was fine. I had had the ringing in my ears and a very painful neck and shoulder condition for almost 2 years, had discounted it off to stress and a desk job. 

I did a google search with some key words and came up with IIH.  I took it to my primary physician and told her that I'd done a bad thing and gone and diagnosed myself.  She said.  Oh, you don't want that disease, it's hard to diagnose, and even harder to treat".  But she helped me go through all the tests and referrals needed to get a diagnosis, which I did with a lumbar puncture in February 2015. 

Come to find out I'm pretty allergic to Diamox, so after some misery and ineffective drugs, we are taking Diamox, Topirmate, and treating my headaches with Depakote and Cyclobenzaprine.  I'm all drugged and haven't worked since April.  I have daily pain and pressure, and there are days that are really bad.
I have some good days now and then.  I've seen a neuro ophthalmologist who says my optic nerves are good so no loss of vision, and so I'm not a good candidate for surgery.

I've spent tons of time researching and it's amazing how little there is out there about IIH>  I put together a guide for new IIH'ers  I would be glad to share with anyone who is interested.  just email me at sarabethn@Hotmail.com and I'll send it to you.

In the meantime, I'm trying to enjoy this journey I find myself on. Taking pleasures in the little things, like taking the time to prepare whole, healthy foods, growing things in my deck garden, sunsets, long walks, being pain free (even if it is only for 5 minutes). 

I appreciate the support I receive from people who have walked this journey before me.  Peace to you sisters and brothers.

Hi Sara, and welcome to the forum.
Please have a good look around this website.  I think you will find that the doctors are not in much agreement about IIH or how to treat it.  Yes, vision can  be at risk when dealing with IIH, but it is not the only reason for having surgery.  I have a lp shunt and never had any optic nerve damage.  My headaches have been mild compared to many.  For me, the higher pressure made my dizziness unbearable.  Having the shunt installed in 2011 has helped tremendously.  

If you have the opportunity, try to see Dr. Michael Wall.  He is a Neurologist with very extensive experience in dealing with IIH.  Last I saw, he was in Des Moines.  

Looking forward to hearing more about you and your journey with IIH.  Be prepared......it may be a long, bumpy ride.