Seizure drugs: Where is our jetpack?

I’ve been on anti-seizure drugs for nearly six years.

It only took the first two years to try out seven different medications that would ultimately land me on my current recipe of 3,000 mg of Keppra and 200 mg of Vimpat each day. (And kids, don’t try this at home.)

Sometimes I wonder if the cloudy head I live in… the zoned out blank stare that takes me over from time to time… the post-chemo brain fog I am surrounded by… is multiplied by these drugs—and I know it has to be somewhat true. After all, these medications were designed to suppress abnormal electrical currents in the brain.

Anti-epileptic drugs (or AEDs, for those in the know) have many side effects, and the one I dislike most of all is fatigue.

I am tired. So fucking tired. I would complain more but I just celebrated my 35th birthday and people like to wave their hands and say, “That’s nothing, wait ‘til you’re my age!”

By the way, no matter who you are, or what you do, someone will always be older than you and will be able to get away with belittling your minor neurological deficits.

They tell you can’t quit these drugs. If you do you could have a seizure and I don’t want that.

I remember what my seizures were like. They weren’t like some of the lightweight seizures I have had described to me by some of my brain tumor peers.

If I stopped my seizure meds, I would live every day waiting to be blindsided by the Mack truck that is the Grand Mal seizure emanating from my left parietal lobe.

Any slight sense of dizziness, lightheadedness, eye twitch or blurriness, will result in me having an increased heart rate and a minor anxiety attack.

When I was newly diagnosed in 2008 I went to see a neurologist. He asked me to describe my seizures, and—I kid you not—I couldn’t even describe the seizure without having a panic attack.

At that time I didn’t know what a panic attack felt like, but I had one in front of the neurologist. He was disgusted with the drama of my panic attack and left the room, but not before telling me that he won’t come back into the room until I calmed down. What a fucking douchebag. No one told me about Ativan until 8 months later, but I digress.

At least.

At least I am no longer on Temodar chemotherapy. At least my skull is healed (though the scar area aches from time to time). At least I can walk again and challenge myself with movement. At least. At least. At least.

Sometimes in pop culture you will hear people say, “I want my jetpack!” This is a way of referencing the expectation that the future will turn out to be a lot more flashy and interesting than what it is in reality. This is how I feel about brain cancer from time to time.

I was diagnosed in 2008. While I am thankful there are treatments available that have extended my life (ahem Temodar, the only freakin’ brain cancer drug approved by the FDA in 30 fucking years), I am appalled at the crap selection of anti-epileptic drugs on the market.

It’s like living in a world where there are hundreds of Hershey’s chocolates and no Ghirardelli. Or if you prefer a beer analogy, there are hundreds of Bud Lights but no Guinness. Or, um, there are hundreds of shitty build-your-own chairs from IKEA but no Eames lounge chairs from Herman Miller.

So I say to you drug developers, and just Science in general, where is my jetpack?

(Bonus points to the pharmaceutical company who names a future minimal side effect AED as The JetPack.)