Lumbar Puncture #2

Back in June my neuro-opthalmologist proposed an experiment for me to undertake in order to ascertain whether or not I could safely discontinue taking Diamox (acetazolamide) without my Intracranial Hypertension threatening my vision and my life. The proposal was simply enough explained: Taper off Diamox in a two week period (as per his instructions) and have a lumbar puncture (spinal tap) at the end to measure the pressure of cerebral spinal fluid without medication. Tomorrow I will be getting that lumbar puncture at 3pm EST.

Diamox Sequels

My unexpected virtual silence in these previous weeks has been as a result of unforeseen side effects from tapering off the Diamox. I have been exhausted, confused, nauseous, in pain, but, most of all, I've been dizzy. This room is spinning right now, in fact, and I'm hanging on tight to my keyboard in between taps. My doctor told me to keep going unless my vision is affected, so here I am, Diamox-free spinning on solid ground praying that these side effects are only a sign of withdrawal and not of active disease. I had one questionable moment of color blindness earlier this week that has been the only thing piercing tiny holes in my life preserver of confidence and hope that I will not have to take this medication again.

I am not writing to bad mouth Diamox. Not by any means. Diamox has helped me save what fractured vision I have left. Diamox has helped turn day long headaches, pressure, confusion and pain into daily, or sometimes even less frequent, headaches that allow me to find corners of the day in which I can write, communicate with others and live my new low impact lifestyle. Diamox wrapped a lasso around my unbridled, untamed cerebral spinal fluid teaching my insides lessons yours may already know. I don't hate Diamox, but it has its own payment that I think I have paid long enough: it is a Pregnancy Category C medication which means, "Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks." While there is plenty of anecdotal evidence of the drug's safety after the first trimester, all stories of women taking the drug any earlier, that I have heard, have been heart-breaking and frightening.

So tomorrow's a big day. I won't get the results right away (at least I don't think I will), but answers will be on their way. Even though I know all the side effects I'm feeling right now will not disappear over night, I'm fairly certain I will feel somewhat better when the lumbar puncture is behind me. (pun?)

Part of me wants to say my blogging schedule will come back to life on Tuesday, but I'm gong to be realistic about this: I'm taking one more week of brain and eye rest. Rivera Runs Through It and all of my blogging life will go back on schedule starting Monday, August 27th. I look forward to the return of my routine! I just hope my eyes and brain will be ready for it!