As many of you know going to the Dr. is such a pain. I have visited the neuro-ophthalmologist every 2 months since August 2014! Every time I go, 2 things happen. I get a vision field screening test and the Dr checks my optic nerves for swelling. Over the last couple of appointments by nerves have looked good so he has slowly been lowering my Diamox dosage. At the height of all this IIH madness I was taking 6 pills a day. I am currently down to 1 for the next month and then off completely for him to recheck. This is the first time since being diagnosed with Chiari in 2007 and now IIH I will be completely off of all medication. This is a blessing but also super scary.
I honestly don't know how to live my life without medication. For too long, prior to IIH, I had been on Topamax. I mean on it so long that I enjoyed the tastes of cokes, and other things people couldn't get past with this med. But now that I am almost completely off meds my old taste buds are coming back and things that used to taste great to me, don't anymore. (Great for the waistline) It is just so weird. The other thing I am more worried about than anything is, I don't have a neurologist anymore. Mine retired in December of 2014. It didn't matter at the time because of my visits to the neuro-ophthalmologist, but now what am I supposed to do? What happens if heaven forbid everything starts "flaring up" again. UGH having a chronic illness really does stink!