Tag Archives: EpilepsyHippy

A Long Overdue and Rambling Update

Depression, epilepsy, EpilepsyHippy, the hippy, , ,

I didn’t know what else to call it. It is what it is. I haven’t written anything here in a few months. That’s down to the holidays, my stupid birthday, and then a couple of brand new seizures. My video on the main page is now out of date, and I need to somehow motivate myself to update it, or make a new one. A new one would be better, in every possible way. Let’s see how I feel in the next couple of weeks. 

This section is turning into more of an epilepsy blog, so let’s start with my latest incident(s), and build out from there. 

[WordPress suggested a trigger warning, because I deal frankly with health issues, physical & mental. That’s what this extra line you’re reading is: A trigger warning. You’ve been warned]

Two for the price of one?

I had two brand new tonic-clonic seizures at the beginning of February. The first one struck me at quarter to midnight on the first Friday of the month. It was 194 days since my last tonic-clonic seizure, which was in July 2023. 

It was the first seizure I’ve had that wasn’t in the morning, or very early afternoon. That has never happened before. And I felt fine, and completely normal leading up to it. 

Mrs. Hippy went to bed a little before me, and was still awake when she heard me cry out. It’s not really a cry, it’s just the sound of all the air in my lungs being forced out by the tonic portion of the seizure. She says I sound like wounded animal. 

Mrs. H. came downstairs to find me in full seizure mode, which she timed at around 5 minutes. When I didn’t recover, she phoned 999, and the paramedics were here 7 minutes later, four medics in total.

It took me 45 minutes to an hour to recover enough to understand what was going on. My tongue was bitten to hell, but I had no other physical injuries. The last thing I remember is thinking I might have had a focal seizure. A lot more on this in a bit.

The next 36 hours, give or take, are a bit fuzzy, because I had a second, full-on, tonic-clonic on the Sunday morning, around 10:30am. I don’t remember anything about that morning, until well after the seizure. 

Mrs. Hippy said this one wasn’t as bad as Friday night’s, but from my perspective, it was worse. I was more agitated, and confused. And I bit my tongue even worse, I caught the edge this time. Ouchies. 

It took the paramedics 14 minutes to arrive this time, and we topped out at 6 of them inside my house at the very peak of the drama, while I struggled to recover. 

My brain seems to come back online in stages, which makes it even more difficult to look after me in the immediate aftermath of a seizure. I am as strong as an ox, and as clumsy as a bull in a china shop at first. I have motor function, but very little motor control. I am semi-conscious as well, but I don’t understand words. I’m not even sure I hear them at first.

When I do start speaking, it’s mostly gibberish. I can’t understand words either. It’s called aphasia, and I have it post-ictally for a short time, as well as during partial aware focal seizures. Again, more on them shortly. 

The one thing I always seem to say that is comprehensible is just plain sad. What I say, over and over, is this: “Help me”.

The last part of my brain to come online seems to be my ability to record, or retain memories. So basically, I am semi-functional, and conversing, before I can record the memories of it. It’s like walking into the middle of a movie, or joining a TV show already in progress. It’s disorienting. 

This second seizure was also very unexpected, as I’ve never had two seizures so close together… except for the many clusters I’ve had. But when I’ve had clusters, they have been much closer together, minutes in between, to an hour maybe. 

Were these two seizures close enough together to be considered a cluster? I don’t have a definitive answer, but my gut says yes. So for the purposes of moving forward, I had two seizures in one weirdly gapped cluster and I am counting this as one incident. 

I did ask my GP, and she couldn’t say for certain either, but her inclination was to agree with my conclusion that it was one cluster. If my neurologist disagrees when I eventually ask, I’ll correct this, but based on my count, here are my new stats:

In the last 34 months, I’ve now had:

15 tonic-clonic seizures across

7 incidents.

4 of those incidents were clusters of

2 or more seizures in a row. My worst cluster was

6 seizures in one day. I could have died.

The paramedics have now been called

12 times, resulting in

10 visits to my house and

4 blue light trips to A&E, and 

1 hospital stay for

4 days which began with

24 hours of complete sedation…

And that saved my life. 

With both new seizures, I declined their kind invitation to spend 12 hours at A&E, but then I never, ever say yes. I’ve only ever been taken to A&E, because I was unconscious, or too  incoherent to say “no thank you” at the time. If I’m going to die, I’d much rather die at home. 

Focus on this:

Back in November, I wrote this piece, speculating with some actual evidence, that I might be having more than one type of seizure. I feel like an idiot that it took me so long to work all this out, but I got there in the end. 

In December, I finally spoke to my neurologist, and she agreed with my hypothesis. For me, this really is the final piece of the puzzle. 

Since at least October 2018, I have been regularly experiencing clusters of focal aware, and focal partial aware seizures. 

At first, I thought they were two separate phenomena. The first was what I described at the time as “chemical waves of deep sadness and depression”, along with something else I called “brain blips” or “blanking out”, when I would lose a few moments, or more, and not know what happened. 

Apparently, it is not unusual for someone to have difficulty recognising they are suffering from focal seizures for a long time. The problem is that the instrument you’re using to interpret the issue, your brain, is the same thing that’s malfunctioning. It’s like trying to use a faulty computer to check if the computer is faulty. It won’t always be able to self-diagnose. 

I’ve referenced bits of this before, if you read back some of the earlier pieces here on the #EpilepsyHippy section of my website. I’ve talked about what I refer to as the incident with my car in October 2018. I have confirmed these details with people I knew at the time. 

The car incident is this: I somehow ended up on a street I didn’t recognise, with two flat tyres, near my old office, while driving to central London for a nightshift. I had no explanation how it happened. 

In my haste to deal with the double flat tyres, and get my car out of central London before the expensive parking restrictions came into effect, I was distracted from thinking about the most important aspect of this: the cause. 

After many hours of hassle, I managed to get the car to my local mechanic, who asked me how it happened. And I remember struggling to answer him. I should have given more thought to the cause of the incident at the time, but I just wanted my car fixed. 

I wouldn’t actually connect the car thing to my illness until June 2022, nearly 4 years later. And I only had the chance to run this all by my neurologist in December 2023. Not only did she agree with my guess that the car incident was related to my epilepsy, but she said most likely I had other symptoms that I didn’t notice, even before this. I expect she is correct. 

I actually first clocked that something was wrong with me in either December 2018 or January 2019. I ignored it at first, as that’s what guys do with medical symptoms, isn’t it? Hopefully, it will just go away on it’s own. Mine didn’t.

With the benefit of hindsight, and my neurologist’s agreement, I now know that what I was experiencing back then were clusters of focal seizures. The waves of depression weren’t chemical, they were electrical. And the brain blips, were the seizures being memory wiped at the end.

I spent a great deal of my phone call with my neurologist in December, talking about these focal seizures. I’ve had them for more than 5 years, but only really worked out what they were in September of last year. That’s five full years, and for half that time I was having tonic-clonic seizures too. I knew they were related, I started to think the focal seizures were my aura… The sensations that precede a seizure… And they are my aura, but they are also a type of seizure in their own right. That’s been a huge revelation for me. I finally understand so much. 

My seizures begin in my right temporal lobe. Seizures there are known to cause emotional responses, jamais vu, and memory issues, as well as nausea, and vomiting. I experience all of that. If the seizure in my right temporal lobe is bad enough, it expands to my entire brain, and I have a full-on tonic-clonic seizure. Everything fits with my diagnosis. 

The last night I worked, which will be five years ago this March, is something else I’ve dwelled upon for a long time. Again, if you read many of the pieces in this section, you will see me refer to it. 

I now know, without a shadow of a doubt, that what caused me to fall apart that night was a cluster of focal seizures. I confused it with a breakdown. I didn’t know for sure if it was neurological symptom, but I did wonder about it, even at the time. Back then, I confused my symptoms with MS, thanks to a well intentioned consultation with Dr. Google. 

I requested a referral to my first neurologist, at the same GP appointment, when I was signed off from my job for depression. I had no idea at the time that the two things I saw her for that day, were really the same thing. My neurological issues directly caused my emotional, and psychological issues, by messing with my mood, and brain.

If you’ve ever had good MDMA, this may make sense to you. You know that feeling, the waves of electricity, joy, pleasure, love, whatever you want to call it? It’s why they call it “ecstasy”. Now, imagine instead of love, and joy, you have the same intensity of waves, but this time it’s intense sadness, overwhelming depression, and impending doom. Over, and over again, for hours. That’s what a cluster of these seizures are like. Now, imagine trying to work while experiencing them, while still not knowing what they are. No wonder I broke into a million tiny, little pieces.

And I did break. Badly. It got so bad, that I methodically plotted my exit from this realm. And I would have gotten away with it too, if it weren’t for those pesky, meddling international authorities!

Between the clusters of near fatal seizures, and my own hand, indirectly caused by clusters of partial seizures, it’s just dumb luck (and modern medicine) that I’m still alive, and my epilepsy hasn’t done me in yet.

Why am I still here? Answers on a postcard, please.

Knowing, understanding, and confirming that I’ve been dealing with epilepsy for longer than I initially realised has been a weird comfort for me. Cathartic even. I feel oddly absolved. Like, I’m not crazy, I’m not a hypochondriac, and I’m not imagining any of this. It’s real, it’s not new, and it’s been messing with me for a long time. Being able to finally lay it all out, in a linear, cohesive, narrative, and connect every dot, has brought me an odd feeling of closure. 

The hardest thing about the focal seizures, is just remembering you’ve had them. There is a mind wiping quality to them. 

When I was discussing this with my neurologist, she asked me how many of them I thought I had. And I couldn’t answer her at the time. Because I didn’t connect the earliest ones to anything, and I confused the more recent ones with being my seizure aura, I didn’t really pay attention to them. If they didn’t lead to a tonic-clonic seizure, then my meds were working. I had no idea they were seizures in their own right. Now, I know. And I’ve started to count, and log the ones I notice, and recall. 

So how many have I had? Realistically, somewhere in between dozens, and hundreds. Definitely more than 100, probably less than a 1000. It’s tricky to put a number on something that’s hard to count, or even be certain you had one. 

When I had the full-on seizure recently, on the Friday night, I definitely had a focal seizure just before. And even knowing what I know now, I wasn’t completely certain until afterward, and I woke up from the tonic-clonic, that I had the focal seizure. And even if I was certain, I doubt I had a full minute between the focal seizure, and blacking out. It doesn’t give me that much warning. 

I do remember putting my iPad down when I had the focal seizure, so I took it seriously enough to protect my electronics. And if the feeling had just passed, I could have picked the iPad right back up again, and I would have forgotten about the brain blink. From now on, I am aiming to err always on the side of caution. If I think I might have had a focal seizure, I’m going to protect myself, and my possessions as best I can. 

Now, what?

Moving forward, god I hate that expression. Like, we have choice of moving backward. Moving backward, I am going to go back in time, and fix all the dumb shit I’ve ever done. Anyway…

My neurologist increased the dosage of my current medication, and I am also gradually increasing the dose of a second, new medication. All this is happening about a month later than expected, as the neurologist’s letter with all of these instructions, took two months to arrive. Had it come sooner, would these changes have prevented my most recent seizures? We’ll never know. 

I have accepted my fate. I have a rare, complex, hard to diagnose, difficult to treat, poorly controlled form of right temporal lobe epilepsy. One person out of 100 people has epilepsy, but only one person out of 100,000 has the same flavour I have. That means maybe only around 700 people in the entire United Kingdom, have the same thing I do. 

One seizure out of 1,000 is fatal for people with well controlled seizures. That leaps to a whopping one out of 150 for people like me, with poorly controlled seizures. I don’t fancy those odds. 

Even with the best of care, and intentions, 30% of patients don’t respond well to medication. I am growing increasingly certain I am one of them. My neurologist says it is still too soon to tell, and I have to try at least one more medication that fails, to confirm it. Why wait? I can see where this is headed.

If I have 3 medications fail, they may offer me surgery, which I will most definitely decline. I don’t want a lobotomy. And even though I gave up drinking more than 20 years ago, I would still rather have a bottle in front of me, than a frontal lobotomy. Boom tish. 

Seriously, I am way too old, and sad to consider major brain surgery. Like I said, I have accepted my fate, and it’s a numbers game. The more seizures I have, the more likely one of them is going to be fatal. I’m cool with it. 

Recovering from a seizure is horrible. It’s like being resurrected, every time. It’s dealing with having a hamburger for a tongue for a couple of weeks. Being slow witted from a course of hardcore benzos for a while too. And most of all, being constantly afraid to leave my house, for fear of dropping in public. 

I spend around a month recovering, and after every seizure, I lose a little bit more of myself, that I don’t ever get back. I thought I knew what bad depression was really like, until epilepsy started messing with me. Post-ictal depression is just so relentless, and unrelenting. Yes, I know they are very nearly the same thing. That’s the point. The hopelessness is bottomless.

Death, on the other hand, would solve all my problems, from the financial, to the psychological, and everything in between. And if a seizure strikes the fatal blow, it would be the sort of pleasant death, everyone else could only hope for. I wouldn’t even know I was going, never mind that I was gone. It would be like someone randomly hit my off switch. It would be the most peaceful departure imaginable. 

And how do I know all this? Because I have done it 15 times already. The difference being that I’ve been revived, and resurrected after each of those previous seizures. It’s only a matter of time before I don’t come back, and SUDEP or status epilepticus takes me.

Until then, I will just keep trying to have as much fun as I’m able. And after reading all that, how much fun do you really think that is? It should be cocaine sex orgies every day, all day, for all of us, anyway. It’s not just my tiny little world that’s ending. It’s actually everyone’s, but I’m letting my tiny little issues distract me from the bigger, scarier picture. Hey ho. 

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 a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real. 

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 if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?

The Final Piece of the Puzzle

Depression, epilepsy, EpilepsyHippy, the hippy, , , ,

By Doug – the northlondonhippy

The hippy has a huge diagnostic breakthrough  regarding his epilepsy. It completes the puzzle of the last 5 years of his health. And it was staring him in the face the entire time.

Intro

Last week, while writing THIS THREAD on Twitter (the website absolutely no one calls “X”) to mark Epilepsy Awareness Month, I became acutely aware that I have more than one type of seizure, and have done for the last, at least, 5 years. 

This is a huge revelation of massive proportions. Well, for me it is anyway. It is the final piece of my health puzzle. 

The Backstory

When my symptoms first started five years ago, there were two main ones. The first was waves of depression; immense sadness, followed by the feeling of impending doom. 

In time, I associated this with my tonic-clonic seizures, and thought it was my aura, the herald of a seizure. And I was correct, but it was also something more, as you will see.

The other symptom was harder to describe, and I used to call them “brain blips” or “time skips”, where I would just lose a few moments (minutes?) of time, and wonder what the hell just happened. Whatever it was, it wiped my memory of itself, I would often quickly forget them. 

I had an incident with my car in October 2018, that I have written about before. I think it was my first brain blip, or time skip, certainly the first I documented. I was driving to work, and somehow ended up with 2 flat front tyres, and on a road near my office I didn’t recognise. I never knew exactly what happened that night. I didn’t even think about it again for a couple of years.

A month or two after that, I started noticing the waves of depression, and the brain blips, but I didn’t discuss either with my doctor for a few more months, even as my symptoms progressed. 

I was scared. I did a Google search, and it suggested I had MS. I wrongly assumed it was correct.

I’ve written about my last night of work several times as well. I’ve been fixated on it, as it was such a massive turning point in my life. 

That night, I was having wave after wave of depression, the sadness and doom I mentioned. I was also having the brain blips too. I had a very public meltdown, left the office broken, and went to see my GP that very morning after work.

I asked my doctor for two things that day. I asked to be signed off work, and I asked for a referral to a neurologist. I never went back to work, and I didn’t see that neurologist for 6 months. And when I did, he misdiagnosed me, and I never went back to him either. 

Learning to live with it

I went around two years after stopping work, before I had my first proper full-on seizure, but in the intervening time, I continued to have the waves of depression, and brain blips. I just normalised them. I knew something was still wrong with me, but I had no idea what it was, and neither did the doctors at the time.

After several incidents of multiple, convulsive, tonic-clonic seizures, a few ambulance rides, and blue light visits to A&E, I was finally diagnosed with Right Temporal Lobe Epilepsy, by the third neurologist I saw. Yes, it took visits to three different consultants before I was properly diagnosed.

After my diagnosis, the brain blips and waves of depression continued. I assumed my brain was trying to give me a seizure. I would experience what I thought was my partial aura, and then not have a full-on seizure, thinking the medication was preventing it from reaching it’s full, destructive potential. This partial aura was so frequent, to the point where I just ignored them. 

I nearly went a year without a seizure, once I started treatment via medication. And four days before a full year, I had tonic-clonic, and it was preceded by the aura I have described. Sadness, doom, and a jamais vu is the full sequence I experience, before a massive seizure. 

As I had some memory of the seizure that time, it gave me food for thought. I had two more major seizure incidents after that, and both had the same aura around them. I felt it the day before, and on the day I had the proper seizures. 

I started logging the partial-aura’s in my epilepsy diary after that. I should have been doing it all along, but I really didn’t see the need if I didn’t go on to have a grand mal seizure. I thought they were the only type of seizure I had. 

Those notes from September of this year regarding my partial aura would become extremely useful. 

The Revelation

If you’ve been following my epilepsy progression, you might have noticed me fixating on what I call the period before my first proper grand mal, or tonic-clonic seizures began. 

I’ve described that time as the slow onset of my epilepsy. I’ve called that time my pre-epilepsy period as well. But the fact is, I had full blown epilepsy even then, only I didn’t realise it until last week. I told you it was a big revelation. 

How can you not realise you have epilepsy? There are more than one type of seizure, and I didn’t realise what I was experiencing for over 2 and 1/2 years before I had convulsions, were something called “focal seizures”. I knew I was experiencing something, but I lacked the understanding, and vocabulary to express it with any clarity. I do now.

When I was writing the Twitter thread I mentioned, I was looking deeper online into different types of seizures. Might sound strange, but since I knew I had (what I thought was only) tonic-clonic seizures, I never really bothered to look into the other types. I really wish I had, because when I did last week, the descriptions of focal aware, and focal partial aware seizures related to temporal lobe epilepsy, were nearly word for word, how I described what I’d been calling my partial aura. 

When I began logging the partial auras a couple of months ago, I tried to do it as soon as I experienced them, as I know there is a big element of memory wiping that happens with them. 

This is a cut and paste from my actual epilepsy diary:

“2-3 Sept 2023 – don’t usually log these, but had this once on 2nd, and twice on the third. Feeling of immense sadness, doom, and my heart rate surged to 115ish each time. Lasted for a few minutes. 

Felt like my aura, but unsure if the meds prevented worse, or it just didn’t reach that level. Will try to log these more, but often they happen, and pass and I just forget them. I normalise stuff too easily. 

Update: I didn’t have a full on seizure, but over those 2 days, I had 5 episodes in total, where I experienced what I now know are the lead-up symptoms, without reaching a full on seizure. The sadness, the impending doom, but something new, or something I hadn’t noticed before… some confusion, and words stop making sense, and sound like gibberish. 

It comes on suddenly, and starts with a weird feeling that is difficult to describe, moves through the phases I described, then fades away. It lasts a few minutes. 

My Apple Watch records these incidents as one minute of exercise, and my heart rate elevates alarmingly, so there are tangible, recorded physical symptoms to go along with the neurological ones. And my resting heart rate remains elevated afterward for days.

The heart rate thing is the same with the ictal nausea and vomiting, as well as the seizures. Especially the seizures, and even more so with my last one. 

I am wondering if what I had over the weekend, the 5 episodes, were some other type of seizure. Focal seizures might fit my symptoms, but would need a neurologist to confirm that. Or it could be my meds preventing my brain from it going full-on, and I’m just getting the rumblings? I have many more questions, than answers.”

As you can see, I even questioned a couple of months ago if these were focal seizures. And then promptly forgot about it, as I have been doing with these incidents for the last five years. 

Focal seizures would explain so much of what I haven’t understood about the first couple of years of my illness. It explains the incident with the car, the brain blips, and the waves of depression. It explains everything. 

Most of all, it explains how epilepsy cost me my job. I’ve had documented tonic-clonic seizure clusters, my record was 6 in one day. If I could have clusters of tonic-clonics, why couldn’t I have clusters of focal seizures as well? I think I can. And I did.

The very last night I worked, I am convinced I had multiple focal seizures, a cluster of them. I’ve worn an Apple Watch for years, since the first model was released. I have heart rate data going back to that date. 

As I mentioned, when I have the focal seizures, or any epilepsy related activity, my heart rate increases dramatically. I also know the date of my last ever shift, as it is burned into my soul. 

I looked up my heart rate during my last nightshift, and it went up to 122bpm, while I was seated at a desk. My normal resting rate is in the low to mid 60s. Only a very brisk walk gets my heart pumping like that, or something epilepsy related. To me, that’s as close to confirmation as I am going to get, that my new theory is correct. The evidence is good enough for me, and I think my neurologist will agree. 

I haven’t spoken directly to a neurologist in a very long time, but I finally have a telephone appointment next month, with the doctor that diagnosed me, and understands my complex condition. And boy, oh boy, do I have a lot of questions!

All I need to do is not die before then. And that might be tricky, as I am expecting a new tonic-clonic seizure in the next month. My seizures keep getting worse, the last one nearly killed me. Who knows what the next one will do?

But if I survive long enough to make my neurologist appointment, I am aiming to get some sort of treatment plan in place, so I might stop worrying about dying every single goddamn day. That would make a good change, wouldn’t it?

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 a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real. 

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 if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?

My Next Seizure

epilepsy, EpilepsyHippy, the hippy, ,

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.