Monday, August 8, 2016

No meds

I have been off all medication for a couple of weeks now. I go back to the neuro-ophthalmologist on Sept 1 to see how I am doing. The first thing he will ask is, "How are the headaches?" This is such a hard question to answer. Yes I have had a couple of headaches (super manageable) but still happening. I told hubby this and he said,"what if they are just you know normal headaches?" (In my head I am thinking, there is no such thing for me.) After all these years, he still doesn't get it. Another super frustrating thing about a chronic illness. It is so hard for those without the illness to understand what is really going on mentally, physically, emotionally.

Anyway back to the dr, if I tell him yes there have been headaches, back on the meds I go. If I tell them there haven't been and my eyes look good, I stay off. (My wallet will thank me!)

That is just my short little update until Sept 1. BTW I no longer like the taste of any sodas. (I have always been a Diet Coke addict, guess not anymore)

Wednesday, June 29, 2016

Could I possibly live medication free?

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!