I worry about so many different things, that it’s not funny. But the one thing I worry about the absolute most, is my next seizure.
There are lots of big things to worry about in this life, like climate change, or more specifically our lack of action to meaningfully address it with any urgency. I also worry in the same way about world peace, or more specifically our lack of sustaining that, too. But since my epilepsy began a couple of years ago, what I worry about more than anything, is my next seizure.
I could drone on for ages about my previous seizures, and already have, as you may have noticed, but what occupies my headspace continuously and relentlessly, is my concern over my next seizure.
Will I be at home when it happens? Or will I be elsewhere? Will I be seated, or will I be standing, and fall down hard? Will I hit my head, and end up concussed? Or maybe I will sprain my ankle again? I know I will bite my tongue. I always bite my tongue, hard enough that it bleeds.
Will I piss myself? Will I soil myself? I hope not, they are both very unwelcome extras.
Will I wake up in an ambulance? Will I wake up in A&E? Will I wake up at all? And if I do, will I realise I even had a seizure? Will I remember anything about it?
Will I have a heart attack? Will I stop breathing?
Will I die?
I’ve had cluster seizures in the past, that means more than one seizure at a time. My record is six in one go. I’ve been in status epilepticus before as well, that means not recovering properly in between. Both of those things can be fatal without an urgent medical intervention. Been there, done that. And my most recent seizure nearly resulted in a heart attack, and I had shallow, irregular breathing along with it.
All of those things can potentially result in SUDEP, which stands for Sudden Unexpected Death in Epilepsy. I’m at real risk of dying from my next seizure. Or the one after that. Or the one after that. You get the idea.
I’ve had 13 heavy duty, tonic-clonic seizures, across 6 incidents, since all this started back in April 2021.
The first three incidents happened before I was diagnosed, and started treatment via medication. The second three incidents happened after treatment began. The first three incidents got progressively worse. The start of treatment reset that somewhat, but the second lot of seizures were then also progressively worse.
I learned why. Some people, like me, respond to the epilepsy meds well at first. And then the drugs begin to lose their effectiveness as you develop resistance. It’s called a “honeymoon period”, and for me, the honeymoon is nearly over, again.
A numbers game
(Author’s note: This section is dull. If you’re not detail oriented, you can read the first two paragraphs of this section, and then the last two paragraphs, and get the gist of what I’m saying. I didn’t edit this section down, because it illustrates the depth, and intensity of my obsession.)
Trying to predict when my next seizure will happen is more difficult than predicting the weather, or the winner in a horse race.
You can look at the data, the stats, whatever, but there are too many unknown factors to make an accurate call. That doesn’t stop me from trying. I’d like to be prepared for my next seizure. As much as I’m able to be, anyway.
I’ve made a simple chart, with incident dates, the number of days in-between, and where noted, the number of multiple seizures I had during that incident, to see if there is any sort of discernible pattern:
Incident 1 – 29/4/21 – Day Zero (2 seizures)
Incident 2 – 6/8/21 – Day +99 (2 seizures)
Incident 3 – 18/9/21 – Day +43 (142 days total) (6 seizures)
– Treatment via meds began the same day as incident 3 –
Incident 4 – 14/9/22 – Day +361 (503 days total)
– Dosage of medication increased –
Incident 5 – 3/5/23 – Day +231 (734 days total)
– Dosage of medication NOT increased –
Incident 6 – 23/7/23 – Day +81 days (815 days total)
– Dosage of medication increased –
With pre-emptive apologies to all doctors, and mathematicians, let’s play with those numbers.
From my first incident, to my most recent, is 815 days total. I had 6 incidents in that time, which works out to be around one incident every 136 days.
My first 10 seizures occurred across 3 incidents, as they were clusters. If I use the same formula with the number of seizures instead, of incidents, the average gap leaps up to one seizure every 63 days. Neither number is particularly helpful since my longest gap between seizures was 361 days, and my shortest was 43 days.
How about if we average the gaps between incidents? There are 6 incidents, but only 5 gaps to measure, for the same total of 815 days. Dividing by 5 gives us 163 days, which again, isn’t a particularly helpful prediction.
One last try. I’ve put my incidents into 2 groups, pre and post treatment via medication. So let’s put the first three incidents aside, as they happened prior to any medical intervention, or diagnosis.
After incident 4, my medication dose was raised. It was not raised after incident 5. I don’t know why, but it was raised again after incident 6. The medication clearly works, for a while anyway, and then a seizure breaks through. The lack of an increase in my meds after incident 5 is probably why incident 6 happened so soon after the one before it.
Based on the relative effectiveness of my meds, I went 361 days without a seizure after initially beginning treatment, and then another 231 days after my dosage was increased following incident 4. The average between the two is 296 days. But if we include incident 6, the average drops to 224 days, which still seems too long to me.
What happens if we average all of it? The gaps, and the average gaps, and the other predictions I’ve made? I have done the calculations and have come up with 170 days, which is reasonably close to some of my earlier predictions, and it comes from the most complex formula in this process. And 136 days comes from my most basic prediction.
So my final prediction is that my next seizure will happen between 136 and 170 days after my most recent incident. My most recent incident was 23/7/23, 136 days after that is the 6th of December 2023. And 170 days after my last seizure is the 9th of January 2024. Put it this way, if I haven’t had my next one by the 9th of Jan, I am going to start to really, REALLY worry. Hey ho.
Will I have a seizure on one of those dates for sure? Who knows? Anything is possible. That said, it does give me a rough idea how long I could be safe. Not that I can trust any of this made up BS, any more than I can trust my faulty, misfiring brain.
There is no real answer
I did an awful lot of mathematical wanking to come up with those ultimately meaningless predictions. I could have my next seizure tomorrow. I could have my next seizure next week, next month, or next year. Or, in my dreams, I would never have another one again.
That’s the goal, that is my dream, to remain seizure-free for the rest of my life, but I now know that’s unlikely. My seizures aren’t an “if” any more, they are definitely a “when” at this point. I’ve learned that much in the last couple of years, and it was a hard lesson.
After my next seizure, they will raise my current medication to the maximum dose. After that, when I have another seizure, I will be looking at transitioning to a different medication, and starting the honeymoon period process all over again. FML.
There are too many variables, and too many unknowns to reliably predict when I might next have a seizure. I wish I could predict it, and prepare for it, but alas, I cannot. No one can.
One of the many things I’ve learned since being diagnosed with this miserable affliction is that no two people experience epilepsy in exactly the same way. While we all may have seizures, how we got there, and what we experience around them, varies widely.
What’s Your Flavour?
My flavour of epilepsy is called Right Temporal Lobe Epilepsy, or RTLE. It’s considered rare, but I have encountered a few others online who also have it. I was lucky to be finally diagnosed correctly, and it was my third neurologist who worked it out. And that diagnosis was confirmed via an EEG, because this time, they knew where in my brain to look.
I first had what I now call pre-epilepsy symptoms 5 years ago. My first documented one was in October 2018, two and a half years before I would have an actual seizure.
Why do I say “documented”? I say that because it involved an incident with my old car, that friends of mine also recall. I don’t drive any more, I had to give it up.
I had some sort of brief blackout while driving to work in central London one night, that resulted in both my front tyres being flattened. It took me ages to connect this event to my illness, but when I did, it made me realise that my epilepsy didn’t just suddenly appear in 2021 out of nowhere.
Some people sense that something is wrong just before they have a seizure. That’s referred to as an “aura”. Think of it as a herald, before catastrophe strikes. Everyone’s aura is different. It can be a sound, a smell, or a sensation or feeling. My aura, when I can recall it, is emotional, which is a feature of RTLE.
It’s weird having to think of my emotions as potential symptoms, but that’s where I am, and sadly, where I have been for 5 years. Only for a good chunk of that time, I didn’t realise it.
Allow me to explain. My full aura leading up to a seizure is a sequence of three emotions. For the first, I feel an immense sense of sadness, akin to deep grief. That’s followed by the second one, which is a sense of impending doom, as if a nuke was about to obliterate London within minutes.
Imagine deeply feeling both of those emotions, suddenly, and without warning, but without a genuine external source, or justification for experiencing them. It’s disorienting.
The third emotion I experience is the weirdest of the three, and a concept I wasn’t even familiar with until I read about it within the context of auras: A “jamais vu”. It is the opposite of deja vu.
A jamais vu is the feeling of weird unfamiliarity in a situation or place you know is extremely familiar. Imagine being in a fake version of your own home. It looks like your place, but something feels off, like it’s a simulation. It’s eerie, and more than a bit creepy. And then I black out from the seizure.
I occasionally experience what I call a partial aura, where I have the sadness, and the doom, but I don’t go on to have the jamais vu, or a seizure. I have experienced this many times, and have also noticed it often happens the day before, and again just before a seizure.
When I have the partial aura, I brace for impact. I stop whatever I’m doing, and wait for it to either pass, which it mostly does, or go on to the jamais vu, and then a seizure. It’s a continuous, endless worry, waiting for my emotions to alert me. I’ve learned not to ignore, or dismiss it when it happens. I expect it daily, the same way I expect my next seizure.
The partial aura I’m describing began around the end of 2018, and it was frequent. Only way back then, I had no idea it was anything other than poor mental health. It caused me to have a breakdown, which I described at the time as “chemical, and the depression coming in waves”. I was close, it wasn’t chemical, it was electrical. And it was confusing. It wasn’t just poor mental health, it was poor mental health as a symptom of a much larger issue, the onset of my epilepsy.
At the time, I thought I had MS, thanks to Dr. Google, who I should never consult, yet I still do. I asked my GP for a referral to my first neurologist during the same appointment when I asked to be signed off work due to my breakdown. I wasn’t sure at the time that my neurological concerns were linked to my mental decline, but I did suspect it enough to search online for what could be causing both together. That’s how I came up with MS.
It’s not just my next seizure I think about, though I’d be lying if I said it didn’t dominate my thoughts. I do re-run my recent health history, seeking connections, and clues that I missed, and that my doctors missed too. It’s a bit tedious, if I’m honest, but epilepsy has completely taken over my life, and a huge chunk of that time is filled with anxiety, worry, and fear over my next seizure.
I never thought about having epilepsy, until I started having seizures. When I was 17 or 18, my mother told me one of her sisters had it. And she was telling me then because she thought I was clear of the risk. I thought that too, that it was a childhood thing. I didn’t know it could begin at any age. Having it in my genetics is the only risk factor I’ve identified. I don’t know why the seizures started. I don’t know what causes, or triggers them either. There is no pattern, there is no common thread that links all my incidents together. They’ve all happened in the morning to early afternoon. That’s all I’ve got, and it’s not much.
I have no control over when my next seizure will happen. It will happen whenever, and wherever fate decides. There is no fate. There’s just a small, defective portion of my right temporal lobe, that occasionally for reasons unknown, causes chaos inside my brain, and puts my body through the proverbial ringer. And it really wants to kill me, it’s made a few attempts already. And there is nothing meaningful I can do to stop it. I just keep taking the prescription meds, plus massive daily doses of my special private medication, and hope it staves off my next seizure for as long as possible. And until that happens, I will be continue to spend a ridiculously stupid amount my waking hours worrying about my next seizure.
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now “semi-disabled, and semi-retired”, but he’s still available for hire, if you can put up with his epilepsy. All WFH situations considered. He’s bored.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And maybe one day, he will explain why he writes these stupid end sections in the third person. Everyone knows he doesn’t even have a publicist.