EEGs and a New Anticonvulsant

Since September 2010, when I was first treated for brain involvement with melanoma (left occipital lobe), I've been taking Levetiracetam (name brand Keppra), an anti-seizure/anticonvulsant medication. Since then, no one's reviewed whether there was a continuing need for it.

It finally got reviewed in March by Neurology. They first wanted to wean me off Keppra. Which would have been great as far as I was concerned. Another part of the thinking was that one neurological issue I've had since almost the beginning is that otherwise minor irritations would quickly spread into anger often significantly out of proportion to the incident. This is a known side effect some people experience on Keppra (sometimes referred to as 'Kepprage').  

They did an EEG first, though, and had to changed course. They saw abnormalities that likely represent partial seizures. They are focused entirely in the left occipital lobe, and are likely the source of the visual phenomena I've talked about (not necessarily here), that play in the otherwise missing part of my visual field. Corresponding to this, I'd always noticed that if I forget to take a dose of Keppra, it was pretty easy to figure out because a few hours later the visual phenomena start becoming more prominent, vivid and lively.

The EEG report in part showed, "1-second runs of left > right posterior fast beta frequency activity, taking on a sharpened morphology. At times these runs are followed by poorly-formed slow waves, resembling polyspikes with aftergoing slow waves,..." Their biggest concern from this was that partial seizures, if untreated, can spread to a full seizure. Note: I have not had a full seizure since all these brain issues began. 

So instead of stopping altogether, they started ramping me up on a new anticonvulsant,  Lamotrigine (name brand Lamictal). It also acts as a mood stabilizer, apparently much more so than Keppra. It took 3 months to ramp up to the full dose. I only stopped Keppra this week.

On the positive side, I noticed that being on Lamictal had significantly cut into my short fuse issues. Even while still on the full dose of Keppra. There are some other, mood and focus- related, positive differences too. Like being more in the moment as opposed to being in my head so much.

On the other hand, I have been a lot more absent-minded. Everybody would probably say about themselves, well, I'm absent-minded too. But I started noticing the incidences grow, maybe not quite exponentially, but significantly. Added with some new, subtle balance issues, I moved up a previously scheduled MRI to 2 weeks earlier, thinking these new changes were due to something much scarier. When it came back clear (nothing new, everything else stable), only then did it occur to me to look if there were any side effects of Lamictal (other than the one side effect they warning me about back in March, a rare, potentially fatal full-body rash.) As it turns out these other new issues were also both known side effects of Lamictal.  

On a larger scale of absent-mindedness, I lost my wallet for the first time ever -- I now use a chain wallet. And I locked myself out of my car -- for the first time since high school -- luckily the window was open an inch and I was in a store parking lot. I have not noticed any new problems with some activities, particularly driving (an issue at the top of our minds after someone in my family accidentally drove over an embankment from a parking lot recently. They're OK.) 

The other main changes I've noticed with Lamictal include being slightly less coordinated; subtle balance issues, e.g. when I'm focusing on a task and perhaps leaning or crouching one way or another); skin photosensitivity (skin turns red fairly quickly even using Anthelios suncreen, hat and staying in the shade); skin a bit more prone to rashes; some weight loss; a stiff neck (now gone); less sleep; and despite that, much more vivid dreams, that I also usually even remember the last 1 or 2 of waking up (no complaint there.) These are all known Lamictal side effects.

However, this Tuesday morning I accidentally took a full day's dose (400 mg) all at once, instead of 200 mg morning and evening (even though splitting the dose like that is not part of the prescription). This was something I will try not to repeat again. From about 10:30a to 1pm I kept a shopping bag beside me because I felt so nauseaous that I was going to lose it. Then I stumbled and barely avoided falling down the long stone front stairs to my house, shopping bag and all, near the end of the nausea phase. Not in the afternoon, but later in the evening, I noticed food kept getting stuck in my throat with almost every bite. Apparently that had become slightly uncoordinated as well. I perhaps should have gone to Urgent Care but I guess I felt like I've been through a lot worse. I figured it would fade by the next morning which it did. Benadryl helped too. I don't think I've made a medication mistake like that before (taking too much). 

Since I've been off of Keppra now, I noticed that, one morning when I took the Lamictal dose fairly late, the same short fuse came back. While that's only 1 time, I'm starting to think that maybe being on or off Keppra had nothing to do with that issue.  

So my medication choices so far seem to be a) possibility of a full seizure (no medication), b) seizure control with no other real side effects (Keppra), or c) seizure control with some negative, but also positive side effects (Lamictal). 

I need to discuss with Neurology whether the benefits of Lamictal outweigh the downsides. I like all the positive effects. Perhaps cutting back on Lamictal and adding back in a smaller dose of Keppra might work better. 

My conclusion from all this is, that when it comes to a medication affecting mood and cognition, with every gain there is also a cost. An improvement in one area inevitably takes a bite out of somewhere else -- because we all are using 100% of our brain already (not the myth of only 10%). Or, as I've been thinking lately, as one door opens, another one closes.