When we last left off, it was December and I was recovering from a spinal tap and a recent diagnosis of Idiopathic Intracranial Hypertension causing Papilledema. It's been about three months since then and I thought it was about time for an update.
Since December, I have had two neurologist appointments (for my brain) and two neuro-ophthalmologist appointments (for my ocular nerve and vision).
I was very nervous about visiting the neuro-ophthalmologist in late January. At this point, I had been on my medicine, Acetazolamide, for nearly two months. During those two months, I had also managed to lose around fourteen pounds. As weight gain is often a contributor to IIH, this was especially important.
During my appointment, I knew the doctor would run the same tests I was now accustomed to in order to gauge the progress, if any, with my ocular nerve. These tests include a visual field test (staring into a machine and clicking a joystick-like contraption when you see disturbances), an eye pressure test (a puff of air), and laser mapping of my ocular nerve (this one's easy -- just stare at an "x" while a light takes photos of your eyeball). The issue with the last test is that it requires dilation, which necessitates a ride home from my husband while I sit there near-blind looking like an addict (hello, large pupils!). After the tests are performed by technicians, I await the doctor's report.
The minutes spent waiting for this report always feel like hours. Did I improve? Am I going to go blind? Will I have to be medicated forever? Can I, for god's sake, have one measly glass of wine at some point?? My medicine and alcohol are not friends, you see.
Upon entering the room with my report, the doctor seems unusually jovial. I can't make out his expression due to my dilated pupils, but he informs me that I have made "massive progress" and that my ocular nerve looks just about normal now. He even utters a "wow" at one point. He asks how I've managed to lose so much weight over the holidays to which I reply that it is easy to do when you fear for your eyesight! I remark that it's nice to know there is light at the end of the tunnel.
"No, Lauryn," he says, pointing to the exam room door. "The light is right there, beyond that door. You are past the tunnel!"
I try my best (successfully!) not to Kim Kardashian ugly cry from happiness!
He informs me that I should be skipping out of the office with a huge smile on my face and that we will see about lowering my dose of medicine at my next appointment if my progress is steady. I take his advice about the smile but pass on the skipping.
Fast forward almost a month and a half to yesterday. I still have two weeks until my next follow up appointment, but something pushes me to reach out to the doctor to update him on my progress. I send him a note, updating him on my weight loss (another four pounds down!) and confirming that I haven't had any noticeable trouble with the papilledema over the past month and a half. To my astonishment, he replies that there is no reason I should not be able to come down to a lower dose of my medicine due to my weight loss success and that I can now take one pill twice a day instead of two pills twice a day. I am elated, and this time I do just about skip to my car for my nightly commute home.
Writing this, I have spent nearly 24-hours on the lower dose of my medicine and am feeling great so far. I'm hoping and praying that I continue to feel great! I am extremely thankful for my now-strong eyesight, especially since my previous visual field tests proved it was waning this past November. I have learned, over the past few months, that our bodies take time to adjust to changes and that we can't rush them. I have around nine pounds left to lose to achieve my original goal weight and am hoping, by that time, I will be ready for the "low" medicine dose and then no dose at all. For now, I am content on my new "medium" dose of medicine although the goal of being medicine-free will always be in the back of my mind.
