Being a Lab Rat

Having never found a pill that would ease me of my seizures, about eight years ago the neurological clinic I was going to asked if I wanted to participate in a free national trial that was being done to see if a then-popular European anti-seizure drug could get permission here in the USA by the Food & Drug Administration. That drug was Sabril. Having no reliable health insurance plan that would cover newer, unapproved drugs, I said "yes." I was put on an increasingly high dosage of that pill, and could see that it was helping--with regard to the frequency and intensity of my seizures. And I was happy to know I was seeing what could be an answer for me. About three years later I had a thorough eye examination. And the opthamologist who performed it asked for the name and contact numbers of my neurologist. I soon heard from her, and went in for an appointment. Once there, I was informed that my eye doctor had informed her that I had lost quite a bit of my ability to see 'round the outer portions of my eyeball. When looking straight ahead, there was virtually nothing I could see off to the sides. I had been given clues, for when I'd be walking down a street, it was getting more common for me to bump into other walkers on my left and right sides. I'd trip over curbs. And frequently a car would come round a corner and almost hit me. All along, I blamed it on my epilepsy itself. My neurologist had heard that the Food & Drug Administration had ordered that all testing of this drug be halted, as a large percentage of those on it were having permanent eye problems come up. And they'd been testing that drug a second time. The results? Sabril (while still used in Europe) hasn't been approved for use in the USA by the FDA. I've lost quite a bit of my eyesight, and must be careful while on busy streets and in crowded stores. I see virtually nothing more than what is straight ahead of me. When being asked to test a yet-unapproved drug, I would read the printed agreement you are asked to sign. In most cases, it fully protects the clinic or manufacturer that is using you as a test vehicle. They seldom will tell you of the "could happen" aspects.