That’s been the reason for medication hopping in the past; it’s the reason for undergoing brain surgery now.
I don’t have my medical records in front of me, but I think I had tried four or five different individual medications that had failed to prevent the blackout-style seizures that I was having from 1999-2001. (My epileptologist at the time, Dr. Gates, once asked if having them only once every two months was an acceptable goal for the meds I was taking. Ummm… no.) I don’t think how he’d decide the next one to try was completely random, but it kinda felt like it at times.
Then the non-random next step was spending a week and a half in the epilepsy ward at United Hospital with a bunch of electrodes glued to my head. (I was there on New Year’s Eve, 2001—one of the highlights of my time in the hospital was a group of people who came through singing Christmas carols that night.) The data we gathered from that led to a combination of lamictal and depakote, which resulted in zero seizures for close to 15 years.
It was the first time that I’d taken more than a single medication. After I started having seizures again, it felt like we went back to medication hopping, usually taking three at a time (plus a fourth that wasn’t effective prior to 2002, but now I take it for restless leg syndrome because Teresa doesn’t like getting kicked in the middle of the night). And it wasn’t just additional medications. I started taking additional doses as well: taking them midday as well as morning and night.
I want to take a moment to acknowledge the fact that some people have to take even more medications more frequently to prevent seizures, which can cause additional side-effects. My older brother is a nurse and I think he’s the one who told me that taking eight medications will guarantee a reaction between at least two of them, which could require additional medications to counteract that reaction… I don’t envy the people who need to buy industrial-size pill cases to hold everything that constitutes their daily medication regimen.
Moreover, some of those people have to take different meds at specific times. When recovering from knee surgery, I could take a certain amount of ibuprofen every six hours, so I set alarms on my phone to make sure I wouldn’t forget. Thankfully, my current medications don’t require that specific length of time between doses, but that can also been a problem: I have an alarm to remind me to take my midday meds that I’ll sometimes turn off and immediately forget to take them, which kinda defeats the purpose of setting an alarm.
Missing a dose can frequently lead to having seizures the following day or maybe a day later. That said, I’ve turned off the alarm and missed that midday dose three times over the last two weeks. And I think it’s led to additional seizures once. Well, once so far… the third time was yesterday. Any negative results are yet to be determined.
Which means I’m currently a little worried that the RNS device is already in active mode and preventing any negative results. And I’m worried because of that’s the case, if the computer isn’t gathering data for six weeks as intended, will it be as effective over the long term? Or maybe it’s because after surgery, the threat of an active RNS device has cowed my brain into submission. Even with all of the scans and all of the data we’ve gathered over the years, treatment options are guesswork to some extent. And I guess what’s currently happening is good? I mean, even if I can’t understand why, I really shouldn’t complain about attaining the optimal result of zero seizures.