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Dealing with Epilepsy

On December 9 2019, I was officially diagnosed with Epilepsy. I suffered my first seizure November 9th, 2019, and had just undergone an EEG test. I was in no way prepared to walk down this road. Things are a little better now than 8 months ago, but it took a while to get to where I am now.

In total, I have experienced 7 seizures:

  • The first one in November
  • 2 in January
  • 1 in February
  • 2 in March
  • 1 in April

I almost don’t want to use the word “experienced”, because for all of these seizures I completely passed out and am only aware of them because I was told that I had a seizure – and then the muscle pain after each of them. It’s probably more accurate to say that my wife experienced them, and they just happened to me.

But I want to talk about my experience with epilepsy – everything that comes with it. I usually find that writing about things is the best way that I deal with them, and in this case I can probably also help someone else who might be new to it as well. Look at me, I say that like I’m “experienced” – I was only officially diagnosed eight months ago. This is new to me too!

Processing the Information

Another thing that helps me process things is to look at statistics. I’m actively trying to lose weight, so having stats at my back are especially great in that regard. So I want to describe my seizures in as much detail as I can, but I think I need to deal with how I have processed the information coming at me since November.

To do that, I’ve used a very helpful Android app called Epilepsy Journal. A short bit of info about it – it’s an app developed by parents who have a daughter, Olivia, who has severe epilepsy. You can read more about it by clicking through the “About Us” section of the app, should you download it. It’s a fantastic app – it lets you record your medications, your seizures, and you can generate reports that give you tons of information about your progress.

Here are my basic stats:

  • Current time seizure-free: 104 days, 11 hours
    • Last seizure: Apr 3 2020
  • Average time seizure-free (before now): 24 days, 10 hours
  • Longest time seizure-free (before now): 62 days, 16 hours
    • Nov 9 2019 to Jan 11 2020
  • Average seizure duration: 1 minute, 34 seconds
    • Max length: 3 minutes
    • Min length: 30 seconds

There is probably more information I could provide, but I feel this is the most relevant. To me it tells a fairly accurate story: I was feeling really great between November and January. Sure, I had just had my driver’s license suspended for medical reasons, but I knew I just needed to go at least 3 months without a seizure and I’d be on the way to starting the process to get it back and get behind the wheel.

But then on January 11th, another seizure. Two, actually, in the same night. My medication was increased by the emergency room doctors, and that’s what started at least one seizure a month. I was feeling my worst after the February seizure. What good was this medication doing, anyway? How come I was able to go two months without a seizure, and all of a sudden now I can barely go 30 days without one?

Not much has changed since February, except that I had an appointment with my neurologist (there’s a phrase I never thought I’d use: “my neurologist”) in March, and talking with her helped calm a lot of my feelings about the whole situation. I had another medication added to my arsenal, and even though I would go on to have another seizure after the appointment, I was expecting 1-2 more before getting to the full dose of the new medication. I can tell you for sure that it feels different to expect a seizure, than to hope you don’t have one.

The First Seizure

My first seizure came out of nowhere – a Saturday morning when I was cooking breakfast. A normal activity, nothing out of the ordinary for me. My wife was still in bed, and if I’m remembering right, so was our dog – just relaxing in bed while I puttered around downstairs.

The last thing I remember about that morning was laying down some bacon on the frying pan. Right now as I write this I don’t think I remember exactly how many slices I put in the pan – maybe it was three? Possibly four. The only thing that comes to mind is that they were wide slices.

But after that? I remember waking up in a stretcher, in the back of an ambulance. I remember being very confused as the paramedics helped me wake up. I vaguely remember the ride to the hospital – I think it was bumpy but it’s a little blurry.

What I remember is the bed in the emergency room and my wife beside me. There were also various needles in my left arm – an IV I suppose and also something to draw some blood for testing. I was taken for a CT scan – another first – and had a lot of information thrown at me. I was told my driver’s license would be suspended automatically because of the seizure. I haven’t driven since November 2019 – about 8 months now.

The pain I experienced after was probably the worst part of it all. I’m told I hit my back on a baseboard heater when I fell, which led to some of the worst back pain I remember feeling. I could barely stand up straight and it hurt to get in and out of the car. Luckily it didn’t last long, but I remember it well.

But that’s the most that I remember of the first seizure. I don’t know if that’s common for people who suffer seizures, but for me this has been the norm. I pass out, have the seizure, and then slowly come out of it, usually confused. The only differences is which part of me hurts (and lately, it’s been my left arm, which has been severely weakened since January) and once when I threw up. Fun times.

The Medication

To put it mildly, medication has been an issue for me. From the start, after the first neurology appointment, I was given the option to start on medication (this was before my EEG). I was told that not everyone decides to take medication for seizures unless directed to, mainly because of various negative side effects.

Given this information I decided not to go with a medication plan; but after my EEG in December, it was determined that I should start medication immediately. So started my first experience with antiepileptic drugs.

I was first introduced to Levetiracetam, which is the generic name for what’s most widely known as Keppra (often, I refer to what I’m taking as Keppra as a short-hand that I can pronounce). It has some seriously scary side effects. Here are some of the most common:

  • Feeling aggressive or angry (colloquially known as “Keppra Rage”)
  • Anxiety
  • Depression
  • Change in personality
  • Drowsiness

There’s actually a much longer list of “most common” side effects over at Drugs.com, but it was a bit disconcerting to hear described to you over the phone shortly after a first-time-ever EEG appointment.

If I’m being honest, I think I did feel the mood changing effects (which I was told only last for “the first few weeks”). I remember lashing out when I normally wouldn’t, or being more short with co-workers. Those feelings wouldn’t last long, and I’d sheepishly apologize after, but I can say for sure it was noticeable.

And that was just on a low dose. I’ve since been bumped up to 2000mg a day, which from what I understand is the max dosage. But it’s not stopping there – the name of the game for treating epilepsy is to find the right combination of drugs and see what works. Considering that a lot of these drugs are also used to treat people who are bi-polar, I can sort of understand why it’s a mix-and-match game.

I’m now on a second medication – Lamotragine – which apparently is meant to target ‘focal’ areas of the brain vs. generalized areas that Levetiracetam targets. The side effects of Lamotragine are a lot less severe, but they’re still present.

Another factor to this is that my neurologist doesn’t know exactly what she’s treating. She is trying to figure out what caused my epilepsy, but it’s still unclear. Perhaps in the future, she can figure it out, and have a better treatment plan for me.

Mental Health

This topic took me a long time to write. The biggest difficulty is because I don’t know how to write about it, exactly. I’ve definitely had some personal experience with different aspects of mental health, but I’m sure nowhere to the degree of people who deal with it every day. That’s the hard part for me. Who am I to talk about my experience with mental health?

Most of it relates to my main medication, Levetiracetam. I don’t have too many bad days anymore compared to the “early days” (which is only 7-8 months ago now). But apart from mood changes, there were times when I was just experiencing “too much”.

To explain it a little better…it could be something like having my fill of people, or maybe even just being in an environment that was too loud or busy. Usually the fix was as simple as moving to a quiet place or going home.

But there’s another side too, that relates to what I already wrote about – the anxiety of not knowing when another seizure will come. There was anxiety whenever I was getting close to the 30-day mark – at one point, that usually meant a seizure was coming, and I wasn’t sure whether I’d have a seizure or keep going without one. I could feel just a little bit of extra stress around the days leading up to that special number.

And then there was also frustration. I remember feeling frustrated that I had to start from zero again. I remember feeling frustrated that I’m already doing everything I can to prevent a seizure, and yet they still happen.

Others may be feeling it worse than I do, or struggle with mental health more than I do, but it’s real enough for me. I am just lucky and thankful that it doesn’t impact my life as badly as it could.

Wrapping Up

As I finish writing about my experience, I am now over 100 days seizure-free. This is a huge accomplishment for me, and I’m looking further ahead to October, when I might be able to drive again.

I’m in a good place right now. I’m sleeping well and getting better every week. I’m hopeful instead of fearful. In short I feel like I have some measure of control. Believe me, it’s taken a long time to get to this point.

I also know that I could have another seizure and just as easily restart my progress. That’s sitting there in the back of my head, and it’s something I have to live with. But I am choosing not to let that dictate how I live and interact with everyone else in my life.

In writing this account of my experience with epilepsy, I’m hopeful of two things. First, that it informs people who know me understand what I’m going through and how it’s affecting me. And second, that maybe it will help someone with similar struggles and know that they’re not the only one going through it.

I for one have got a lot simply from reading other people’s experiences in places like Reddit or other articles. If this doesn’t help, there are many other resources that can. Even recently I learned about a new term (Breakthrough Seizures) that helped me relate to what I’ve already experienced.

I’m still learning as I go.

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