My Acetazolamide Case Study

I decided to do my own replication of the University College London acetazolamide case study (for more information, see my 2/15 post). This is not something to be entered in to on a whim. Acetazolamide is a hard core drug and I had to get blood work done regularly to monitor potassium levels and red blood cell count among other things. It has some very scary possible side effects including bone marrow stopping the production of red blood cells. It is a diuretic and it is important to monitor kidney function. So, one must commit to regular blood work. As an aside, I wish someone would attach a statistical measure to possible side effects. Then, it would be easier to make educated decisions. For example, if there is some extreme side effect, it would be helpful to know if 5% or 46% people in the clinical trial experienced it. Okay, I am off that soap box for now.

I started my dosing at 250 mg. on April 15th. I slowly ramped up to 500 mg. Then, I went to 1000 mg. for one month. I noticed colors looked brighter. I also had an improvement in my fields. I doubted if anything; other than increased color vision, was happening until I got off the drug. Then I realized that, indeed, it had helped. One would expect it to help the clarity of vision if I had any residual CME.

But, I also noticed an increase in my ability to find things. Do not get me wrong, I was still quite impaired. But, I did not run in to things in my own home. My shins had no bruises and I could wear skirts without looking like I was married to an abusive little person. I did not collide with door jambs. I could find most anything I needed independently. Still, I doubted my improvement. Now, that I am off the medication and have regressed, I notice that it was helpful in ways one would not expect if it simply resolved CME.

So, why did I discontinue using the drug? Well, I felt like absolute…..crud. At first, the 1000 mg dosing was fine. Besides having pins and needles in my extremities, being a little more tired than usual and everything tasting like metal, life was good. Then I started to become very fatigued. Getting out of bed in the morning became an act of will. If I did not have responsibilities, I probably would have spent the day in sweat pants (always my data point for a major case of the blahs). I also started having, shall we use a nice medical euphemism and say “gastrointestinal distress" on an all too regular basis.

So, better vision is not so useful when you feel awful. But, it does make me relatively optimistic about the potential of the Brimonidine Tartrate implant being developed by Allergan. For more information see the post from 4/20.

I think back to everything I have tried, from acupuncture to stem cell implants. Glaucoma drugs to microcurrent……there always seems to be a bit of efficacy to each. I think of microcurrent’s basis in sending an electrical current to the retina. Then, I see the implantable chip which generates electricity and stimulates the retina. Acupuncture is also an electrical process. So, there are some interesting parallels. My fields responded to acetazolamide. If it could be delivered locally, then we would have a more realistic therapeutic option. But, the devil is always in the details.

Now it is time to soldier on and be grateful for the desire to do so. An old friend called me, he is in his late thirties, a single dad and dying of a rare disease for which not ONE clinical trial has been conducted. So, we are relatively blessed compared to many. But, it is only human to lose sight of that when one is losing sight.