I feel guilty for how little I've involved myself in these discussions since starting Potiga, but you can take that as an indication of efficacy. As difficult as it is to pin down exactly what the drug is doing, it's pushed the importance I ascribe my tinnitus from #1 with a bullet to several notches down the list. But! I'm not here to debate if it's worth it to pursue RET/EZG (it was, for me, enough that I'm about to spend $270 in credit on another month's supply). I'm here to tell a CAUTIONARY TALE.
This past Friday, I spent four hours in the emergency room. Most of that time I was doped up on Ativan and sleeping soundly, but the precipitating event was very scary, for myself, my workmates, and my family. For the sake of context I'll say that I have not been whacked very hard by the side effect bat while on Potiga. When I first started 300mg TID, I had a couple of ugly nights. At one point I backed down from 300mg after being unable to focus my eyes sufficiently to read. But after I resumed the dosage, I've been well served by the drug and only slightly inconvenienced. Plus, I've had a welcome return of some aspects of my personality I hadn't really missed until Potiga brought them back - creative thinking, problem solving, an enhanced willingness to help others, and closer contact with my emotions. These were things I had lost to stress before every tinnitus reared its noisy head.
So, fan as I am of the pale oblong pill, I decided last week that I would try stepping up my dose. I had a few extra pills from the aforementioned period of backing down in dose, so I cut a pill four ways, giving me 4x75mg pills, and proceeded to take 375 TID for two days. When that didn't seem to affect me more than the 300mg doses, I got lazy with the cutting and decided to try 450mg. I took two doses at that level - one before bed, and one on waking.
Normally, 300mg of Potiga takes about an hour to hit me. I get a bit manic, a bit forgetful, and my tinnitus retreats into my scalp, where it's much less intrusive. I took my morning mega-dose at 6:35 in the morning, and felt fine at 7:30, when it was time to drive to work. On the drive, I caught myself speeding a couple of times, and nearly missed two turns, but the job and the route to get there is still new to me, so I was not convinced the Potiga was to blame. At work I had a pleasant conversation with a workmate, but caught myself rambling a bit, as I do in my manic state, and exhibiting some unusual ticks - clicking my teeth and blowing raspberries when a word would not spring to mind. I decided to note down my side effects, to consider if I could continue at the elevated dose or not. After doing so and working for about twenty minutes, I returned to the office shared by my workmate in order to work on another workmate's computer. Thinking back on the earlier conversation, I decided to come clean, explaining to her that my somewhat strange behavior was a side effect of my medicine and not my usual demeanor.
At some point in this explanation my brain started to shut down. It took it in turns - it was a bit like watching city lights switching off and on in a rolling blackout. I slurred my words, then there were no words to slur. My head sagged. I repeated myself (so I am told) and let sentences trail off into nothing. At one point, after my boss arrived, I was unable to articulate my mouth well enough to speak, but I was able to communicate using American Sign Language, which she and I understand. I could write pretty much throughout, but I was aware of a lack of good judgement on my part. I wrote out instructions to pass on to another technician, should I be unable to return to work that day; halfway through I realized that I was writing these instructions because I felt it possible I might die, yet I had not yet asked for medical attention. After I made my concern known, my boss took me to the ER, where I was given an EKG as well as blood and urine testing. Ironically, I had just been to the doctor a week before to test my liver and kidneys, which are fine now as they were then.
Anyway, to cut this short, it was a dreadful episode, and a terrible thing to do to the fine people I work with and my lovely wife, not forgetting Mom, who drove my wife down, and my daughter whom we kept in the dark until I got home. When I was afraid for my life I thought of all of you here on TT. I was afraid I had put the nail in not only my coffin, but Retigabine's as well. This drug really does help, but it is not to be trifled with. I feel I probably could elevate my dosage to 450 TID safely, but it will be a good long while before I try. A day later I was still feeling some of the effects, and came quite close to wrecking my car, with my family and a couple of friends inside.
Because I know you'll wonder, I don't recall hearing my tinnitus at all after the side effects hit me Friday. But, then, I don't recall 3 of the 4 hours I spent in bed that day either, or much of the rest of the night. Take it slow, folks! The body is the chariot of the mind, and the mind the gatekeeper of the soul. There's no more sobering spectacle than watching the wheels drop off and the the gates swing shut, one-after-another along the narrow corridor.
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