Written by Doug – the northlondonhippy
For better, or mainly for worse, my go-to responses since discovering I have epilepsy have been either fear, or denial.
To be fair, sometimes it’s a combination of both fear, and denial. They are not the most productive of responses, and don’t serve me well, but what are the alternatives? If you read this to the end, you’ll discover the alternatives are even worse.
(Trigger warning – This piece deals frankly, and honestly with depression, suicidal thoughts, potentially fatal seizures, and euthanasia. Click here if that’s not your vibe right now.)
I had another seizure about a month ago, it was a bad one. As if there are good ones. For some context, it was worse than my previous seizure last September.
For even more context, you could read this lengthy, self-indulgent essay I wrote last September about my long road to discovering I have epilepsy. Or I could just quickly summarise it for you:
Since at least 2018, I’ve had weird, seemingly
unrelated symptoms that began more than…
2 years before my first seizure.
I had my
first seizures in April 2021.
In the last…
2 years, I’ve had…
12 full-on tonic-clonic, or…
grand mal seizures…
across…
5 separate incidents…
3 of those incidents were seizure clusters…
also called…
Acute Repetitive Seizures.
The worst of which involved…
6 seizures in one day…
without recovering in-between.
That’s called…
Status Epilepticcus.
The paramedics have been called…
9 times.
And they’ve visited me…
7 times.
I’ve been to A&E…
3 times,
which included one admission for…
4 days.
On the first day I was…
sedated intravenously for…
24 hours.
And it saved my life. I nearly died.
Since 2019, I have seen…
3 neurologists…
2 misdiagnosed me.
1 neurologist saw me before the seizures even started…
1 neurologist saw me after my first seizures, and still misdiagnosed me, and…
1 neurologist, the third one, finally nailed my complex diagnosis.
I have
Right Temporal Lobe Epilepsy (RTLE)
1 in 100 people have epilepsy
1 in 100,000 have RTLE
Since beginning
treatment via prescription medication…
2 of those 5 incidents occurred.
I am not seizure free.
Even with medication, and following all medical advice…
30% of people with epilepsy continue to experience seizures.
I think I’m…
1 of them.
That about sums it up.
Don’t worry, it’s not a pity party. There are plenty of people with worse health issues, and dramas than mine. I’m definitely not looking for sympathy, I write about my experiences to help myself process stuff, and work things out. If others benefit from it, or find it interesting, that’s just a bonus.
Auras
This is an update on that essay I mentioned, as with every incident, I learn more about my condition. And when I do, it forces me to recontextualise everything that’s preceded it with this new, better understanding.
For example, I have a much better grasp on what’s known as an aura. My aura. It’s what you experience just before you have a seizure, like a herald, or warning. It can be a sound, a vision, a smell, a taste, or in my case, an emotion, or more accurately, a specific series of them. I’ve since discovered that people with RTLE often have emotional auras, so it fits.
Stop for a second, and just imagine what it’s like to have your negative emotions become symptoms. You start to question if whatever you’re feeling is real.
Just before a seizure hits, I feel several emotions, suddenly, and deeply. Out of my five incidents, two of them are complete blanks, and I have no memories. But of the three I can recall, all of them had this combination of emotions.
First, I experience a sense of immense sadness. That’s followed by an incredibly strong feeling of impending doom.
Imagine answering the phone, and being told everyone you care about and love, just died in a fiery car crash. Immense sadness.
And then you turn around, glance at the TV, and the news is reporting that every nuclear tipped missile on the planet has inexplicably launched, and all life is about to be obliterated in less than 15 minutes. Impending doom.
That’s the intensity, but what is more difficult to convey is the suddenness of it all. It just comes out of nowhere, and it all packs quite a wallop.
The third, and final thing I feel is something I’d never heard of before called a Jamais Vu, and it’s the strangest feeling of them all. I struggled to articulate what it is like, and it is only through digging deep into RTLE that I came across the concept.
A Jamais Vu is the opposite of Deja Vu. Instead of something feeling oddly familiar, you experience the reverse, where something that should be familiar, feels suddenly alien. That description isn’t doing the actual feeling any justice. It’s like being dropped into a simulation of your real life. Everything just seems off, in a palpable, tangible way, like you’ve been transported into a false reality. And then I suddenly blackout.
At this point, I am pretty sure I recognise the feelings and emotions that make up my aura. Here’s the fun part, I experience the first two of them frequently, but only rarely do I actually go on to experience the third; the Jamais Vu, and then have a seizure. And that’s been going on since I started treatment. I assumed my brain was trying to have a seizure, and the medication was preventing it.
I normalised these random bursts of emotion, that’s how often they happened. I now know if I reach the Jamais Vu, the seizure will definitely follow, and I maybe have 30 seconds to get myself someplace safe before it strikes. It is useful info.
The very first seizure I had, started like this. Sadness and doom. I remember thinking I was having a heart attack, or stroke, though I didn’t have physical symptoms for either. I just knew something was really wrong with me, I was overcome with sadness. I felt like I was going to die. That’s my last memory before I blacked out. I went on to have two seizures right after that, with no recovery in between. I lost around an hour.
My second and third incidents are a total blank for me. I remember nothing about them. For the second incident, I have no memories at all of that day, until I woke up in A&E late in the afternoon.
My third incident was by far my worst. I had 5 seizures at home, and a sixth in A&E. I call it Super September Seizure Saturday. It has a nice ring to it.
After SSSS, I was sedated for 24 hours, and put on an anti-convulsant medication that I continue to take twice daily. I’m on the max dose of it now. I have no recall of what happened that day, and I even lost the memories of the couple of days leading up to it. It was all very traumatic for my faulty brain.
Last September, when I was writing that essay that I’ve now referenced three times, I had my fourth incident. The essay was meant to mark, and celebrate me being seizure-free for an entire year. And then 4 days before the one year anniversary of SSSS, I had a seizure. It was day 361.
It wasn’t my idea to make a big deal out of marking one year, it was my doctor’s. She said we could talk about restoring my driving privileges once I reached the one-year mark. That’s why I was counting. I now know, I’m never going to drive again.
That seizure last September was preceded by the aura I have described. But because I had felt it frequently, and normalised it by then, having been seizure-free for nearly a year, I laughed it off. I had been writing about it that very day, I thought it was an amusing coincidence. And then less than a minute later, I had a full-on seizure.
Up till that point, in my mind since starting treatment, I thought of the possibility of another seizure as an “if”. “If” I have another seizure, I would think every day. And once I got over the shock of incident number four, I realised that it was now not a case of “if”, but “when” my next seizure would occur.
I began to take my aura more seriously. If I felt even the merest suggestion of it, I would try to get myself someplace safe, like my sofa. Another seizure wasn’t a theoretical “if” any more, but a statistical “when”, as it seemed inevitable I would have another one. And I did, 231 days after my last one.
I have followed every instruction issued by my neurologist. I am 100% compliant with my medications. I make a concerted effort to get more sleep, and have been able to improve the amount, and quality of the sleep I get. I also try to avoid any sort of stress. And I don’t drink alcohol at all, I stopped drinking 20 years ago. I do everything I’m supposed to do, and I am still having seizures.
The most significant thing about my most recent seizure, is that it fulfilled one of my deepest epilepsy fears: it happened while I was outside of my house. That said, I was extremely lucky because when I say it was outside of my house, I mean literally outside of my house, on my doorstep.
I was returning home from a routine blood test I get for a thyroid condition I have called Hashimoto’s Disease. Fun fact: People with Hashimoto’s Disease are more likely to also have epilepsy than the general non-Hashimoto suffering public.
The blood test facility is about a 10 minute walk from my place, and I was on the return journey, about 30 seconds from my front door when I felt my aura hit. My last thought before I blacked out was “ut-oh”, I hope this is one of those phantom ones. It wasn’t, it was the real thing.
Here’s another fun fact: I considered killing 45 minutes on the high street after my blood test, and going to see the first showing of Guardians of the Galaxy: Volume 3, as it opened in London that day. It would have been my first visit to a cinema since 2019. I decided against it, for fear of a seizure. That fear stops me doing a lot, but on this occasion, it spared me a worse outcome. Still haven’t seen the film, I hope I live long enough to see it, I loved the first two. Disney+ in August? September? We’ll see.
My partner heard me fall down outside, and a neighbour across the street saw it happen. The neighbour phoned for an ambulance, that was cancelled by a passing doctor. The doctor helped my partner get me inside.
Had the seizure hit 10 minutes earlier, I was crossing a busy A-road, and walking along a bustling high street. Hell, had it happened even 30-60 seconds earlier, my partner wouldn’t have heard me. It could have been so much worse.
I convulsed for 1-2 minutes after I fell. According to my Apple Watch, my heart rate topped out at 159bpm. My resting rate is usually in the low 60s. There’s a decent risk of a heart attack when I have a seizure.
Injury-wise, when I fell down, somehow I hyperextended my left foot, and managed to twist my left ankle as well. Two injuries for the price of one. And I bit the hell out of the right side of my tongue, and there was blood, but that always happens when I seize. At least I don’t seem to piss myself, that’s something I guess.
For 10-15 minutes after the seizure, my brain is shut down. You know when you re-start an iPhone, and the white Apple logo is displayed? You can tap that black screen all you want, but the iPhone isn’t ready for input. That’s my brain for ages. It takes me quite a while to recover. I was blacked out for 10-15 minutes, before I started having flashes of reality. My brain is glitchy as it limps back to life.
What I’ve learned is everyone shouts at you when you’ve had a seizure. That’s the very last thing you need. Paramedics, and doctors, they all shout. It doesn’t help.
As I begin to come back to life, I am disoriented, confused, and agitated, but I’m not deaf. Shouting only makes it worse. I need to be spoken to calmly, and softly.
And this might sound dumb, but I really just need to be told two things, over and over, until I understand them. One is that I’ve had a seizure. Even though it happened to me, I won’t realise that I’ve had one for ages, so tell me. It will speed up the recovery. Then tell me I’m safe. Once I understand those two things, and they register, I will just need to sit quietly with my eyes closed for 45-60 minutes. Just leave me be. When I’m ready, I’ll start asking questions about what happened. That’s much of what I learned from this most recent seizure. It confirmed my aura, and my recovery sequence.
It taken me weeks to nearly fully recover from my most recent seizure, and I can’t say I’m feeling 100% even now. I lose a little bit more of myself every time I have one. Hey ho.
Fear
Since my first seizure, having one outside of my home has become my biggest fear, and I’ve limited how much I go out to a fairly extreme degree because of it. Medical appointments, and the chemist are pretty much it. I don’t see anyone, and I haven’t been in a shop, restaurant, or cinema in years. And I either walk, or take an Uber if I have to go anywhere. Anything I need, I have delivered. It’s not a lifestyle I’d recommend.
Now that I’ve had a seizure outside of my house, that fear has ramped up exponentially. I have absolutely no confidence that it won’t happen again. If anything, I am confident it will happen again. I feel certain it will, and I don’t even want to walk 50 yards to the postbox on the corner.
I’m overcome with fear now. I don’t plan on attending even medical appointments, it’s either telephone or I go without. That’s true for everything. If I have to leave my house for it, it’s ain’t happening. I’m officially, and intentionally housebound for the foreseeable future.
I’m not sure how long I will need to be seizure-free before I will feel confident and comfortable being outside of my house. Six months? A year? More? I can’t say.
Fear consumes so much of my headspace, especially in the immediate aftermath of a fresh seizure, but even well beyond it. I don’t know what I can do to lessen it, except for denial. And I’ve tried that, it doesn’t really work either.
Denial
RTLE messes with your emotions, and that’s especially true for me and the seizure aura I’ve described. It’s why I gave up my job. The last night I worked, I was experiencing this aura sequence, over and over. It’s taken me a while to really grasp this, but my most recent seizure confirmed my suspicion.
Think of it as pre-seizure activity, or you can use my neurologist’s term, a sub-clinical seizure. I thought I was having a breakdown, and I was, but it was also something more. I was signed off after that night, and I never went back.
At the time, I described my depression to my GP as coming in waves, and feeling chemical. I was close, it wasn’t chemical, it was electrical. And it wasn’t just a change in my baseline of depression, it was a symptom of something larger and worse: RTLE.
At the time, I thought my symptoms, the increased depression, and something I called brain blips, or time skips, were suggesting MS thanks to an ill-advised Google search. I asked for a referral to a neurologist nearly 2 years before my first seizure, as I knew something was neurologically wrong with me, even back then. It just wasn’t clear what it was at that point.
The first neurologist I saw mis-diagnosed me, but to be fair to him, he didn’t have that much to go on. I normalised my symptoms, left my job, and hoped I would recover. I didn’t.
That first neurologist did say to request a re-referral if my symptoms continued, but I didn’t. I justified it by telling myself I didn’t want to waste the neurologist’s time, but the sad, simple truth is I was in denial again. Or still. Denial is my go-to, whenever I can move past the fear.
After my first seizures, I desperately didn’t want them to happen again. And I didn’t want it to be epilepsy. I saw a different neurologist, my second, and he didn’t think I had a seizure, and he didn’t think it was epilepsy. This is very much what I wanted to hear. He told me if I didn’t have another seizure within 90 days of my first one, then I would be clear. He fuelled my denial, and fanned the flames of my hope that I didn’t have epilepsy.
I dutifully counted down 90 days, and practically celebrated when I reached that milestone. I wrote to the second neurologist with the good news, and cancelled future appointments. And then 9 days after that, I had my second incident and ended up in A&E.
And then… and then I did nothing. I went into peak denial. I didn’t contact neurologist number two, I didn’t even phone my GP. The A&E doctors referred me to a third neurologist, so I just decided to wait for that appointment, in October.
And then Super September Seizure Saturday happened. I’m a bit hazy after that, my recovery was slow. I was angry that I survived. I saw no point in life, and if I am honest, I still don’t.
I don’t know why I was saved. It was a low point, and I’ve only continued on that downward slide. What purpose does my continued existence serve? I haven’t had a single good day since all this started. That’s one thing I’m not denying. Every time I try to move past it, something trips me up.
The third neurologist finally diagnosed me in October 2021. My first documented pre-seizure, epilepsy-related incident was in October 2018. It’s been fucking up my shit for way too long now.
The near-year I spent thinking “if” I have another seizure is another example of denial. I had been toying with the idea of trying to get some freelance work around Xmas time, as I miss working, but the seizure in September smashed that idea into tiny little bits.
There’s a thin line between denial, and delusion, and I think I may have crossed it when I considered working again. Who would hire an epileptic hippy for any job that mattered, when I could collapse at any time without warning, in a really disturbing way, that traumatises people who see it? And then I would need a few weeks to recover from it. And why would I wish that on any employer? I’m not quite as delusional now, but the denial remains strong. I don’t see how I can ever work a normal job again, something else I reluctantly can’t deny.
I even tried denial as a coping technique for the entire month of March this year. I decided not to mention epilepsy at all, and just have a make-believe normal month. I say make-believe because even though I didn’t mention it, I still thought about it. A lot. Sometimes denial, strong it may be, still isn’t enough.
I wrote, and published 10 new pieces on my website that month. All of them were meant to not be sad, or depressing. They were meant to be entertaining, and fun.
The new material is called The Sex, Drugs, and Rock & Roll Collection. It’s was meant to be a departure, or relaunch from all the doom, and epilepsy gloom. Writing it is the most fun I’ve had in a very long time. That part of my denial was good.
I revisited my past. Why? Simple, I’ve hardly left the house or done anything in the last four years. The past is all I’ve got.
There was a time in my life where I used to do really cool stuff, but those days feel like a million years ago now. Time travelling back to them with my faulty brain was as much an exercise in creativity as it was in simple recall. I worry about my memory, but I’m pleased to say that the old days are still accessible in my mind.
I wrote about the summer of 1982, back when I lived in New Jersey. I saw Bruce Springsteen hanging out, and jamming in local seaside bars. And he saw me too.
I wrote about starting my career at MTV in the mid 80s in NYC, back when MTV was the biggest, and coolest thing in the entire world.
I also wrote my first bit of fiction in ages, a twisty time-travel sci-fi short story that’s chock full of an uncomfortable amount of actual biographical details. If you’ve read any of my health stuff, you’ll get even more out of it. It’s my favourite piece in the collection.
And I wrote about hooking up in the pre-internet age, before apps and websites existed, but it’s actually about a lot more than that. The main story is in three parts, but there’s a bonus fourth section that has a self-contained story that needed to be told on it’s own.
The most disappointing thing about my extended writing exercise is what little impact it has had on anything. I had some traffic from Reddit, but for some reason, my usual audience on Twitter didn’t seem interested. Maybe it’s post-Musk algorithm nonsense, or maybe people have just lost what little interest they had in me? I wouldn’t blame them if they did. I’m just a pathetic downer most of the time.
I seem to get more traffic on my tedious, health-related pieces, than I get on the lighter, more entertaining material. More of you will read this piece, than the fun stuff. It confuses me. People used to dig my writing. It took some of the shine off my enjoyment of creating, and publishing a book’s worth of new material in five-week period. What’s the point of sharing it, if it doesn’t attract an audience? It may all end up in a book one day, anyway. Fuck it.
Death
The one thing I don’t fear is dying from a seizure. It actually wouldn’t be a bad way to go. I fear surviving them. The injuries are no fun, and I have been fairly lucky so far. The immense post-seizure depression, the anger of surviving, the rage of being brought back to life, that’s what I fear.
That’s how I describe the blackout portion of my incidents; it’s as if I’ve died. There’s a sense of peace, and calm that’s indescribable. Nothingness is the most amazing state of being, and it’s how we all spend most of eternity. Life is the noisy, smelly, messy interruption in-between the nothingness. Do you remember before you were born? Exactly. That’s what it’s like having a seizure. Or being dead. You’re not there. You’re not anywhere. You’re just not. It’s bliss.
Coming back after a seizure is like being resurrected. It’s like being brought back from the dead, only it is as traumatic as birth itself. There’s a reason why we can’t remember being born; it’s a horrifying experience, being ripped from the peaceful void, and brought to this bright, noisy, messy, smelly, pointless world. I keep repeating and reliving it. It sucks.
After every seizure, I have regretted surviving. I wouldn’t mind if I died mid-seizure. I wouldn’t even know I was gone. As deaths go, it would be a good one. There would be no suffering, my brain would be checked out, regardless of whatever stress my body might be experiencing.
It’s always worse for whoever witnesses my seizures, than it is for me. My pain starts as I am reborn. It hurts, every muscle, every nerve, every sinew in my body aches. Then factor in the additional injuries, plus my most certainly bitten, swollen tongue, and then all the mental and emotional trauma on top. It adds up to unadulterated misery.
There are four main ways epilepsy can kill you, according to one of the epilepsy organisations I follow on Twitter.
The first one is called SUDEP, which stands for Sudden Unexplained Death from Epilepsy, and it is pretty self-explanatory. I’m guessing heart attacks caused by seizures are included in this category. I’m especially at risk of this one, because of the type of seizures I have, but I think anyone with epilepsy potentially is too. The wildly elevated heart rate is just a bonus.
The second way it can kill you is via Status Epilepticcus, which I have experienced several times. Basically, you just don’t recover. Brain damage or death can occur in as little as 30 minutes, without urgent treatment. There are worse ways to die.
The third possible epilepsy killer is worse, it’s via accidents. Besides not being able to drive a car, bicycles are now not an option for me, neither are roller skates, skateboards, or scooters. Swimming is a no-no, unless I tell the lifeguard, and why would I want to put extra stress on a complete stranger?
I’m not supposed to take baths, but apparently showers are OK. So I’m not allowed to drown, but falling down and cracking my skull open is totally cool? I’d rather not go this way, an accidental death sounds painful. I don’t like ouchies.
And it’s not just the seizure for me, in that 10-15 minutes right afterward, as I recover, my body is on auto-pilot while my brain is not functioning. I’m unsteady, but I move around a lot in a confused, agitated state. My consciousness seems to come back in spurts, and stages. It doesn’t happen all at once, like a seizure in reverse. The recovery process is slow.
If I had a seizure on a tube platform, I could end up falling on the tracks from the seizure, or during the recovery period afterward. Bystanders would just see me confused, and behaving bizarrely, and they might not realise I need saving. I’m literally a fatal accident waiting to happen. That scares the bejesus out of me. I definitely don’t want to go this way.
The fourth way epilepsy kills people is literally even more depressing: Suicide. Depression, and epilepsy have a weird bi-lateral, bi-directional relationship. They make each other worse.
In 2019, I was actively suicidal. I now understand that this was part of the onset of my epilepsy, but at the time, I just thought I was weak, and finally surrendered to my depression. What I’ve learned since, is that what I went through was a direct result of my faulty brain.
I would say that I am passively suicidal right now. And I don’t say that lightly. I’d let myself go, if I could, but I wouldn’t take an active role in my own demise. I’m not going to do anything rash, so no need to report me for a welfare check.
I’d be very OK if my next seizure was fatal, though ideally my first choice would be to live the rest of my life without ever having another one. I’d rather not have to recover from another seizure. It is indescribably unpleasant. Even with the meds, my most recent seizure was worse than the previous one. Perhaps I’m becoming resistant to the medication? My next one could be even worse, who knows? But there will be a next one, I’m convinced of that.
I have so many questions that have no answers. I still don’t know if my seizures have a trigger. I don’t think there is anything else I can do to try to avoid them. As a control freak, having something so significant, so far out of my control is unbearable.
I have thought about going to Switzerland. Dignitas. Euthanasia. Perhaps I see it as the only way to regain control of my own fate. I’m not sure, but I think I’ve left it too late, I don’t have it in me to make the journey now. It would be such a pleasant death, peaceful, and on my own terms, but I don’t think I could cope with the trip, or the bureaucracy.
The laws in the UK will change eventually, but not soon enough for me. And I expect when they do introduce assisted dying here, the bar will be set too high for someone like me. You’ll need to be within 6 months of a definitive demise to be eligible for the good drugs. Could I be six months away from a fatal seizure, or six minutes? Maybe and maybe. How long is a piece of string? I might never have another one, or I could have one before I finish typing this sentence. The uncertainty is maddening.
I don’t fear a sudden death, I fear continued life. Every minute of every day, is fairly miserable for me. I am the textbook definition of a loser. All I have done for the last few years is lose things I care about… family, friends, colleagues, my job, my health, and my future. Why should I want to continue, when I have no optimism. I have no hope. What’s the point of even trying, when I could just fall over, and be useless for weeks, or just die suddenly?
They say depressed people have a more realistic view of the world, and as someone who has been depressed for decades, I would agree with that. Existence isn’t a gift, it is a curse. Things generally only ever get worse. Entropy is real. And I’ve had enough. I’ve spent the last couple of years trying not to let my poor mental health, or now my epilepsy define me. I’ve failed. Spectacularly.
I go through the motions. I wake up every day, I pretend everything is just fine, but I know it’s not. I have no purpose, I contribute nothing to the world. I’m an oxygen thief, consuming resources without giving anything back. I don’t see any way out of this, I don’t see it ever turning around. I’m not going to pretend otherwise.
There is no happy ending for me, but ending me would make me happy. I want to go back to the void. I want to cease existing, and a seizure might finally deliver me. I often think about stopping my medications, hastening my own demise, and letting nature take it’s course. And then I realise even with the meds, my potential demise is only ever one bad seizure away.
The northlondonhippy is an epileptic loser, who has no business still existing, yet he continues. He used to be a lot of things, but these days, he’s nothing much. He wrote a book years ago, that you probably haven’t read, along with a bunch of stuff on this website. And it’s really weird when he puts these odd bits at the end of things, written in the third person, when everyone knows it’s the hippy writing them. Weirdo loser hippy shitheel.
The hippy tweets as @nthlondonhippy. Follow him for more depression, and disappointment. When his account goes silent, you’ll know the epilepsy finally got him.
In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email [email protected] or [email protected]. In the US, the National Suicide Prevention Lifeline is at 988 or chat for support. You can also text HOME to 741741 to connect with a crisis text line counsellor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org