I Am 1 in 100

I have epilepsy; I was diagnosed late in life, almost 4 years ago at the age of 35. I’ve told the story many times but suffice it to say this came as a complete surprise and there was no discernible cause nor any signs leading up to my first seizure. Before this, I only knew of my uncle — not related by blood — who has epilepsy.

My neurologist gave me a hand-wave answer of “genetics”, which is apparently a common source (although nobody really knows how it ties together). Since my diagnosis, I have learned there are many people around my life who have it and many famous people across the world. I may be 1 in 100, but it’s a lot more common than you’d guess.

My Struggles

The obvious struggle I can point to is seizures. In the last 1200+ days, I have had 7 tonic-clonic seizures. I almost wrote that I experienced 7 seizures, but that’s not true at all.

Every time I had a seizure, I woke up not knowing what happened, feeling fuzzy and in the most recent seizures, nauseous, sore all over, and generally drained. The truth is that my wife experienced the seizures, and the entire prospect of watching me go through a tonic-clonic seizure is terrifying for her.

But a lot of struggles aren’t always visible or don’t occur to people. Mental health has been a huge change for me, in large part due to the medication I was started on. Both Levetiracetam (known commonly as Keppra) and Lamotrigine (known commonly as Lamictal) can be occasionally prescribed to bipolar patients, so beyond blocking my seizures, they affect my brain in other ways.

“Keppra Rage” is well-known in epilepsy circles; one of the highly publicized side effects of the drug includes mood changes, and “rage” is one of them. For most people, it takes about 2–3 weeks to adjust to the side effects, and that has mostly been the case for me.

When I first started the drug, I knew for sure there were a few times I lashed out uncharacteristically. I feel that I’m lucky that I now only occasionally feel that kind of mood swing; but beyond that, these drugs made me feel very tired in the immediate weeks and months, and would often be ready for bed before 9 pm.

Mental health is something I’ve been more aware of in the last 4 years though, and not just the “Keppra Rage” aspect. I have seen far more “down” days than ever, and I even had the worst-ever breakdown of my life in January this year, set off by the littlest thing that went wrong (I forgot my work pass at home and had to drive back).

I deal with this by journaling every day, something I only started this past June. I haven’t missed a day yet, even though I might be “cheating” by writing an entry for the previous day as well as the current day, but it’s my journal — I make my own rules.

There are many other struggles and I recently found out that despite not having constant seizures, we all deal with similar issues. Epilepsy is not one-size-fits-all but there are common struggles and I recommend talking to other people with epilepsy — you’re not alone.

What am I doing now?

I try to talk about epilepsy all the time. Well, that’s not exactly true. I don’t bring it up every chance I get, but I try my best to bring awareness to the disease when I can and take part in awareness months — such as November, and March; this article itself is intended to be part of a campaign by Epilepsy Ottawa called “#Iam1in100”.

I’m supposed to take a picture of myself holding a poster, but I feel that’s not my lane. Instead, I write about my experiences and share the various images and graphics on social media posted by various epilepsy groups (including Epilepsy Ottawa).

One thing I wish I could be better at is stopping people when they make jokes about seizures. People often make side comments about flashing lights or burnt toast (although I think that one is for strokes, isn’t it?). On a recent trip to the dentist, the hygienist made a comment about smells and seizures, and I let it pass.

Should I have said something like “please don’t make jokes about that”? It doesn’t bother me personally, but I know it bothers other people. I would be making the world better for someone else. I’m not that type of person to be confrontational, which is the same reason why I tend not to speak up about other controversial topics.

In general, I’m taking care of myself. Beyond epilepsy, I’m actively trying to lose weight, and I think that this has side benefits that can only help me prevent seizures. We figure that lack of sleep is one of my triggers for a seizure, and I believe that weight loss helps with better sleep.

I also feel that if my body is in better shape, that can only help my brain function better. I haven’t had alcohol since 2019, and despite thinking about taking up the occasional drink now that I’m almost 2 years seizure-free, I think I’m going to keep the sober streak going (it helps that good non-alcoholic beers are coming out left right and centre). As I write this, I feel great and in the best shape I’ve been since — ever.

I am 1 in 100, but I don’t let my diagnosis define me.