December 1, 2016. My first birthday without my mom, my first seizure. I was at a restaurant with my dad, getting ready to head to a special viewing of a movie. The last thing I remember was him pulling out his credit card. Apparently I continued to talk after that, until I was on the floor.
Eventually, 911 was called, and a woman who was a nurse came and walked my dad through what was happening. I came to in the ambulance. Confused, I told the EMT I thought it was 2009. Perhaps that is because I suspected I was in the ambulance with my mom. I don’t know. But either way, the confusion took about a good 30 minutes to an hour to really wear off.
They took me in for a CAT scan, and sent me on my way. Confused, tired, and very sore. I was aware that I had a grand mal seizure, lasting approximately 4-5 minutes. Luckily, I didn’t urinate, or bite my tongue, or severely injure my head when I fell. The soreness lasted about 2 days. The day after I was weak, and so sore I could barely walk. My jaw… well that is still sore, two weeks later.
That seizure, in my mind, was brought on by lack of sleep and nothing else. I had woke up at 3 am that day, and couldn’t get back to sleep. I then went to work in the morning, traveled three hours to get to my dad, and went out to dinner. The week before I had gotten many lousy nights of sleep, so I was really exhausted.
When I got home I found myself a primary care physician, who referred me for an MRI and to a neurologist. She also prescribed me Ativan. She said she was giving it to me for anxiety, but I am curious if her real reasoning was she thought my seizure was related to alcohol withdrawal. That is how the neurologist treated it as well. Nobody else seemed to believe that it was going to end with a diagnosis of epilepsy.
I, on the other hand, knew that it would. My grandfather was an epileptic. I had never considered this a genetic disorder, nor concerned myself with the possibility that I might have it. But sure enough, my grandfather’s first seizure was when he was 28; mine was on my 29th birthday.
My MRI came back completely clear. But then the EEG results came in. Clear, unmistakably, Left Temporal Lobe Epilepsy. Immediately, my neurologist prescribed me 500 mg of Keppra, twice a day. I was disheartened, to say the least. My doctor seemed, well, surprised. I was not. Disappointed, sure, but from the moment I heard I had a seizure, I knew what it was.
So, here come the adjustments… Keppra. This medication is supposedly the least offensive of all of the AED’s (antiepileptic drugs). It isn’t safe for women to take if they are pregnant, or trying to get pregnant. So I guess that is something I won’t be worrying about for a while. It wasn’t really on the agenda anyhow, but it stings to hear that it will be complicated if it ever does become something we can afford, or desire.
But the massive, huge, glaring side effect of Keppra is the “Keppra rage.” It is so common it has a nickname. And there are streams of conversations about it online. At first, my reaction to the Keppra was a giddy feeling. I’d have fits of giggles and feel very floaty and tired. But then, on day 4 of this medication, I fell into a funk. A Massive Black Hole Funk. I was irritable, depressed, angry, frustrated, and every little thing made me feel like I needed to punch someone.
Today is much better. But I didn’t do anything differently, or significantly. So I’m not sure if I’m just in for a roller coaster, or if there is something that seems insignificant that made a big difference? Or, will it just settle down? Some people say after about a month, the side effects mellow out and you’ll be okay… Some people don’t ever get used to it and just suffer with the rage, or have their doctor change their medication.
Today is day 5. All I can tell you is that I will certainly keep an eye on it, track how I’m doing day to day, and see about what I can do to ease things. It doesn’t help that there are a few major issues I have to tackle this month. My stress levels are through the roof… there will be a lot of playing of mantras in my brain.
I have to say, I’m so grateful to have a partner that is sticking with me through it all, and trying his best to remember that I may not be in control of my moods at all time (talk about frustrating to be around!)