Tag Archives: epilepsy

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 My video on the main page is now out of date, and I need to somehow motivate myself to update it, or make a new one.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?

20 Years of Me

"Personal Use", Depression, drug use, epilepsy, EpilepsyHippy, nostalgia, the hippy,

Hello! And Happy New Year!

2024 is a special year for me, as it is my 20th anniversary of being a fake online hippy. That’s no small achievement, considering the last thing the world probably needs is a fake online hippy. Yet here I am.

I didn’t plan on becoming a fake online hippy, it just sort of happened, organically. I first used the name “northlondonhippy” on some online forums, unsurprisingly about drugs, and drug use. It wasn’t just about weed, although a lot of it was, but it was mainly about magic mushrooms. They were sort of legally available to buy in London until 2005.

When blogging first started getting popular, I was between jobs, so I started my first website, a Blogspot blog. And back in 2004, it really was a blog.

I had no idea what I was doing, much like now, only my writing in the beginning was really just stream of consciousness drivel. I even called it drivel for the first few years. I literally wrote about what I had for lunch, or how many joints I smoked. It was dull, but I posted frequently. And people read it anyway. I had followers, and fans. It was weird.

Around the same time I started posting online, I got a job with BBC News. I should have abandoned drug blogging then,, but I didn’t. I just quietly, and secretly kept going.

In 2006, I relaunched myself online with my own website, and URL. I tried to get more serious about my writing, and in some ways I did. I wasn’t as consistent, or regular in my posting habits, but I tried to have more to say. That first version of this website, was hacked to oblivion, and I lost a lot of my original content.

Things turned weird at work, and I got fucked off. So I did what any sensible human being would do, I secretly wrote a book while sitting in the BBC Newsroom. That book is called “Personal Use”, and I published it in October 2016. I wrote and published an actual book, I wasn’t just a blogger any more.

I was clueless how to promote the book, so for the first few months, I didn’t. I just gave copies of the eBook away to people on Twitter for free. And then I sent out three PR letters, and I included a signed, printed copy of the book, some chocolate, and a limited edition “Personal Use” mug. If you’ve got a mug, you’re lucky. There aren’t that many of them in the world.

I think it was the mug that did it, because one letter got a positive response. I was invited to the LBC studios, where I was interviewed by James O’Brien in January 2017, on his birthday. I hear that since Mr. O’Brien had me on his show as a guest, he’s become quite popular. Wish my radio debut had the same effect on me! To be fair, the interview did briefly increase my book sales exponentially, but it was fleeting.

I should have capitalised on this more, I should have used the momentum I had to build more of a profile. I knew I was risking my job, but I didn’t care. In fact, a part of me hoped I would be found out, as the publicity would have been useful. And then everything changed.

Mrs. Hippy had been unwell, and I didn’t really grasp how serious things were. When I did, I recommitted myself to my job, and backed off from trying to promote the book. Not long after that, my own health problems began. They’re the ones that led me to give up my job, and eventually dub myself “Epilepsy Hippy”.

When I gave up my job in Spring 2020, I outed myself as I became a full time hippy. I still didn’t realise how sick I was, and I hadn’t been diagnosed with epilepsy yet. I received a partial diagnosis around 18 months, and 10 tonic-clonic seizures later, but I didn’t receive a full diagnosis until just last month. It’s been a long, hard, confusing, frustrating, and nearly deadly 5 years, but I’m still here.

I think epilepsy is going to kill me. It’s come close a couple of times. I’m not coping with it well, and I’m struggling to figure out what to do with the rest of my life. Not knowing if you’re going to drop dead tomorrow, tends to make long term planning a bit trickier.

My anniversary year will be as much about looking back, as it is looking forward. I’m going to get nostalgic, but I’m also going to try to push myself to do more, to be more. There’s got to be a reason why, after 20 years, I’m still a fake online hippy. Together, maybe we can figure it out.

So here’s to the last 20 years of my life pretending to be a hippy online for fun, and (no) profit. I promised myself when I gave up my job that I was going to concentrate on doing good, and having fun, and thanks to my poor health, I have failed at both. I’m going to pretend that my anniversary year is going to turn all that around. And my main aim for 2024 is a simple one, to not die, and to see in 2025. Anything I do beyond that, is a bonus.

So stay tuned, as I will be sporadically posting stuff as we approach the 18th of March, which is the actual anniversary of my first ever blog post. Who knows, perhaps after 20 years of being a fake, online hippy, I will finally become an unlikely, overnight success. And it would probably totally do my head in.

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 Problem(s) with British Medicinal Cannabis

cannabis, cannabis evangelist, ceasefire4good, decriminalisation, Depression, drug use, epilepsy, legalisation, Politics, society, the hippy, , , , , , , , , ,

by Doug – the northlondonhippy

This hippy opinion piece takes a deep dive into the dismal state of British Medicinal Cannabis.

The subject is divisive, and there’s bound to be an opinion in here that pisses off nearly everyone.

Introduction

Cannabis was legalised for medicinal use in the United Kingdom in 2018, under a ridiculously rigid, and poorly implemented regime for a substance that is quantifiably considered extremely safe. And it is all the medicinal users of cannabis, whether legally sourced, or reliant upon the legacy market, who have continued to pay the price for the mess that is legal cannabis in Britain today. 

The general standard of the products legally available isn’t great, nor is their continued availability. And the customer service side of this industry is even worse, from the initial tidal wave of bureaucracy, to chasing your regular, monthly prescription renewals. It’s been a disaster. 

Improvements are constantly promised, yet rarely ever seen, but the issues are even deeper, and more systemic than that. The entire set up is not fit for purpose, and needs to be overhauled from the ground up, using other country’s superior implementations as a guide. 

The First Elephant in the Room

It seems ridiculous that I even have to point this out, as I rarely see it mentioned, but to me it is the biggest, dumbest accommodation made, in the entire British legal cannabis system. And the way everyone just rolled over on it, continues to boggle my mind. That accommodation is this: 

Medicinal herbal cannabis has to be vaporised. This is a mandatory restriction, because if you smoke it, somehow it magically invalidates your prescription, and makes your consumption illegal. WTF?

Smoking cannabis is one of the oldest, and certainly most common forms of consumption in history. It may not be the most ideal, but certainly shouldn’t that decision remain with the consumer?

It’s fine if doctors want to endorse and encourage vaporisation as their preferred method for patients medicating. I own several vaporisers myself, and I love them. But at the end of the day, when I need to finally get some sleep, nothing hits me the same way as a neat joint (no tobacco) of pure Indica flower. 

I’m sure some of you naughty legal prescription holders out there still skin-up on the QT as well, but the fact is that you shouldn’t need to hide your preference for combustion. 

By all means recommend vapes, endorse them, subsidise them even, but don’t force them on everyone with some bizarre, performative, restrictive law. It makes a mockery of the entire system that is meant to legitimise the use of cannabis as an actual medication. Questioning, and denying the medicinal value of a perfectly valid method of consuming it, diminishes much of what you’re trying to achieve. 

When the guidance, and the laws were being drafted, did anyone even put up a fight? There are plenty of people who were involved in this process, who knew better, yet rolled over anyway.

Cali Legal Weed

The US State of California legalised cannabis in 1996 for medicinal use. The system was really simple, and far superior to ours. 

After an inexpensive visit to specialist doctor, who reviewed your medical history to see if you suffered from one of the many qualifying conditions that might benefit from cannabis, you were issued with a medical cannabis ID card. With that card, you could then visit your local, legal dispensary, where you could safely purchase your cannabis flower, from a knowledgeable bud tender, who had personally sampled every strain available, and could offer useful advice on your choices. You could even smell the aroma of the bud, before you buy, which is more crucial than you might realise when selecting the right strain for you. 

Dispensaries popped up all over the state, and the sky didn’t fall in. In fact, the system was so successful, that 20 years later, they extended legalisation to include all adult usage, medicinal or not. 

It’s not just California; more than half of all US states have now legalised weed. Many countries have relaxed their approach to cannabis, and many more are expected to follow in the near future. Sadly, Britain is not one of them.

British Legal Weed

To secure a legal prescription here in the United Kingdom, your only option at this point is to go private. The NHS still refuses to accept the undeniable benefits of medicinal cannabis use, but that is an argument best left for another day. I want to concentrate the system we have now.

As with going private for anything medical, private cannabis is expensive. There are consultation costs, prescription renewal costs (with some clinics), admin fees, delivery fees, and the cost of the actual medication itself. Oh. and don’t forget you need a proper herbal vaporiser, which is not an insignificant cost. 

You need deep pockets, and for many, those pockets need to be even deeper than what they might spend for the equivalent from the legacy market. Or if they previously grew their own, it would cost exponentially more. Going legal ain’t cheap!

I don’t currently have a prescription, but I do have more than one qualifying condition, so I am eligible. And I do have a Cancard,  but more on this a little later.

I monitor the state of our legal cannabis market via the many subreddits, and forums online dedicated to the subject. While I will acknowledge that people tend to post complaints in general, more than praise, the scales of the posts I see on medicinal cannabis tip heavily towards the negative. I’m sure there are some patients happy with the system, and if it works for you, that’s great. But I am even more certain, anecdotally anyway, that the majority are not happy, and would welcome significant improvements. 

I tried to get a prescription a couple of years ago, but I lacked proof of the years of therapy I had when I lived in the states, as well as the psychiatric drugs I was force fed. Since then, I’ve been diagnosed with a rare, hard to treat form of epilepsy. And I’ve had seizures while taking lots of different pharmaceutical drugs, so I definitely have proof now I qualify, should I wish to pursue the legal route again. But for me to consider it again, the system would need that overhaul I mentioned.

Even the initial process can seem daunting to some, and quite frankly, that is because it is a huge bureaucratic mountain for many to climb. 

You need to get a summary of your care, from your GP surgery. Not all surgeries are helpful. And you need to be able to prove that you have at least one qualifying condition, and that you’ve tried two prescription medications that failed to help with it. Plus if it is a mental health issue, you also need proof you have tried therapy as well. 

And that’s just to qualify for the initial consultation, though to be fair, if you make this far, it seems most people are prescribed. 

After your initial consultation, the real fun begins… Trying to get a hold of your medication of choice. Some clinics limit, or push you to products produced by their parent companies, and they all seem to want to push people towards oils first. 

The clinic that prescribes you, then has to send your prescription to a dispensing pharmacy. Until recently, that prescription had to be on paper, but now it can be sent electronically. Either way, there will still be a delay in dispatch, assuming they have what was prescribed available, and in stock. And how many times you have to contact them all to chase it, when something goes wrong. 

Most people have to try many strains before finding one that helps, as the doctors are not that knowledgeable about the products. 

There’s an open secret regarding doctors who prescribe medicinal cannabis; they’re really only in it for the money, and very few have any useful knowledge of cannabis, beyond the 2 hour online training course available to be able to prescribe it.

Yes, you read that right. For a doctor to be able to prescribe cannabis privately, for a fee, all they need to do is follow some simple guidelines, and maybe complete a short online training course. 

Don’t get me wrong, my personal view is that any doctor should be able to recommend cannabis in the same way they recommend aspirin. And you should be able to self-refer for cannabis, the same way you can purchase aspirin over the counter. Technically, cannabis is safer than aspirin. 

Who would you rather have helping you choose a strain for your condition? A fully trained doctor who spent 2 hours studying cannabis, and cannabis based products online, or a bud tender, that’s tried every product they’re selling? I know whose endorsement would matter more to me, and I bet I’m not the only one. 

Legal vs Legacy

In all of my 40+ years of consuming cannabis, I have never bought mouldy weed. I’ve never found insects in a bag of weed either, and I have hardly even seen a seed since the mid 1980s. And I’ve never had to wait 2-4 weeks for my medication. None of that is true for British medicinal cannabis. Everything I’ve mentioned has been an issue for patients at some point, especially the delays. 

The legacy market has been efficiently providing quality products for decades, and continues to do so, all around the country. How it does that is yet another discussion, for another day. 

The legacy market is unregulated, so it is obviously less than ideal, but it’s still a business, reliant upon repeat custom. Selling quality products insures punters come back, again and again. 

From my perspective, the legacy market still remains superior to our legal prescription market. The quality, and standard of products is consistent for me, the prices have remained steady for years, and the customer service has always been first rate. 

The legal market is stressful. The medicinal cannabis subreddits are full of people going through all sorts of unnecessary drama to receive their medication, if they receive it at all. 

Delays aren’t just common, they are expected, as is having your first (or second, or third) choice of medication unexpectedly unavailable for weeks, without explanation. And then when it does come back into stock, there’s a rush on it, and they quickly run out again.

And if the random availability wasn’t bad enough, the products themselves can vary. One batch of your favourite strain could hit just right, and then the next prescription for the same strain, does nothing for you. There is no consistency, and much of what is sold, is very dried out, lacking any aroma, or terpenes.

Whether you source it from the legacy, or legal markets, there is a superior third option for sourcing, but you’re not allowed to use it.

The Second Elephant in the Room

In many places, where cannabis is legal, growing your own at home is permitted. This is a no-brainer, as patients can produce their own high quality medication at home, much cheaper than they can buy it from either the legal, or the legacy market. 

Growing quality bud is a skill, but it is one that most people can master given the time, especially if they’re motivated. And who would be more motivated than someone suffering medically, who wants to keep their costs down, during a global financial crisis!? 

Growing your own should be at the very heart of our drug laws, especially medicinally. It should be a cornerstone of the policy, instead of leaving greedy corporations to produce substandard products. As far as elephants and rooms go, I’d say this is a massive one. 

To sort of paraphrase Moses, “Let my people GROW!”

AI Generated, 6 fingered Moses knows where it’s at!

One Last Room, One Last Elephant

Medicinal cannabis is a divisive subject, but it is especially divisive within itself. The amount of bickering I see within the cannabis community is depressing. 

Don’t we all want the same thing? We don’t want to see anyone arrested for possession, whether they have a prescription or not. We all want cannabis use to be seen as the positive, life enriching thing that it is, don’t we? We want it legal for all. 

Having a prescription is meant to shield you from arrest, but it doesn’t, as there have been reports from all around the country of legal patients running into trouble with the law. That shouldn’t happen. Many people get prescriptions just to remain within the law, but what’s the point when the law doesn’t care?

Prescription or not, people should not be arrested for the possession of any drug. It’s not difficult. We’re all meant to be on the same side. Which is why I am even more confused by the hate for Cancard. 

Cancard is a scheme set up by another medicinal cannabis user who avoided a conviction in court by using a medicinal cannabis defence. This victory means everyone who uses cannabis, can use the same defence. Joining the card scheme means you qualify for a prescription, whether you have one, or not.

The patient’s name is Carly Barton, and a few years ago, she decided to stop using the legal cannabis market, and to grow her own instead. Good luck to her, she’s a trailblazer!

I have a Cancard myself, and have been a member of the scheme for several years. They offer police training, and in some parts of the country, that training has helped people like me avoid legal hassles, and in some cases, even keep their medication. 

Sadly, much like a legal prescription, there’s no guarantee a Cancard will prevent arrest, or prosecution. It will however, most certainly be a mitigating factor at some point. And that should result in an “NFA”, as in no further action will be taken, since a successful prosecution is unlikely, because of the medical defence. 

I don’t understand all the hate. Carly, and Cancard just want to prevent arrests, and have done in many cases. A legal prescription is meant to prevent arrest, and confiscation as well, but that doesn’t always work either. 

Can’t we all agree that NO ONE should be arrested, regardless of where they source their medication? 

And that’s the final elephant, in the final room. 

When the UK government legalised cannabis, even privately, that was a tacit admission that cannabis is medicinally beneficial. No ifs, ands, or buts, about it. 

Cannabis is cannabis, whether you grow your own, source it legally, or from the legacy market. If it keeps you healthy, and alive, that is all that matters. 

If these were your only two choices, which would you prefer? Would you rather be illegally alive, or legally dead? I’ve already made my choice. I’m still here. 

I’m actively trying not to die from a potentially fatal form of epilepsy, among other long term physical, and mental health maladies. If you take away my special private medication, and I croak, that shit is 100% on you. I’m still here because of weed. Lots of us are. 

Why can’t we be more like California, and have an actual grown-up, functional, beneficial medicinal cannabis system that’s affordable? 

Why are our politicians from both main parties, so out of step with the electorate, the medical community, and the rest of the world on the simple subject of cannabis? 

Why do we let our rabidly rightwing media dictate our health policy? That’s the real issue, but there isn’t a room big enough to contain that particular pachyderm. 

It’s your body, it’s my body. We all have the innate right to make our own significant health choices that we know benefit us. I know you know this already, but how do we convince everyone else? It shouldn’t be as hard as it has been, and continues to be. But I’m not giving up the fight, I’m still preaching the good word, till my very last breath. And I’m still breathing.

***

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.

Honeymoon’s Over

Depression, epilepsy, the hippy, ,



The hippy gives you a long overdue update on his worsening epilepsy. It’s another depressing read.

Episode Six

I’m still not good. I had yet another seizure in July, and it was my worst one-off seizure so far. And it’s taken me this long to write about it. You’ll see why. 

It nearly gave me an actual heart attack, and I got blue-lighted to A&E. I won’t lie, I never do, this one scared the crap out of me. It was my sixth incident, and thirteenth seizure in the last two and half years. I desperately don’t want it to happen again, but I already know that it will. Another seizure is a statistical certainty at this point. The only questions remaining are when, and how bad, the next one will be.

My most recent seizure happened on a Sunday morning, the day before Mrs. Hippy was due to have day surgery that she had been waiting a very long time to get. I screwed that up badly by having a full-on tonic-clonic seizure while sitting next to her on the sofa.

I asked Mrs. H. to describe what happened, as I don’t recall any of it. She said I made a weird exhale noise, and then I convulsed, while biting my tongue hard enough to draw blood, which ran out of my mouth. I then went stiff as a board. 

When the seizure finished, my heart rate remained high. I received three high heart rate alerts on my Apple Watch. That was new. 

Previously, when I had a seizure, my heart rate elevated wildly during the actual seizure, then came right back down. My Apple Watch recorded that as a minute or two of exercise. 

This time, my heart rate remained elevated after the seizure, and spiked at an alarmingly high rate three times within ten minutes, while I was remaining still. It didn’t register as exercise because I wasn’t moving. Also, Mrs. H said my breathing was shallow, and irregular.

SUDEP, or Sudden Unexpected Death in EPilepsy is caused by irregular breathing, and heart attacks due to weird brain activity, after a seizure. I don’t know if that means this incident was an actual brush with death, but it sure felt like it. 

Mrs. Hippy rang 999 as she was concerned by my shallow breathing, and they dispatched an ambulance quickly. They always do, the risk of death is real. 

I was semi conscious when they arrived, but I do not remember interacting with the paramedics inside my house. Mrs. H says I spoke to them quite a bit. She also said I didn’t argue with them about taking me to A&E. That’s also new, usually, if I am able, I put up a fight. If I’m going to die, I want to die at home, not in some cold, brightly lit hospital A&E cubicle. 

I’ve described my aura before, it’s what people experience leading up to a seizure. Everyone’s is different. Mine is a series of emotions. I feel immense sadness, followed by a sense of huge impending doom. I get this occasionally, without it leading to a seizure, and while I don’t recall having it directly before this particular seizure, I did have it once the day before, and much earlier in the morning on the day. I’ve had it enough, that up until now I’ve mostly tried to ignore it. I would just get myself someplace safe, and wait. Most of the time, it just passes, but sometimes I go on to have a seizure. 

On the occasions I can recall my aura, I do have a third stage, that I’ve only experienced when I’ve had a seizure, called a Jamais Vu, and it is the most disturbing emotion of the bunch. It’s made even more disturbing because I now know that if I reach this stage, a seizure will definitely follow. 

When I have a seizure, the lights go out suddenly, and it wipes out my memories leading up to the event. And the bigger and badder the seizure, the more of my memory that gets wiped. For example, during my worst incident, where I had six seizures in one day, it wiped out the memory of the previous few days leading up to the event. Having a faulty brain sucks. 

The reverse of the suddenness of the seizure, is the slowness of my recovery afterward. It can take an hour, or more, for me to regain full function and control, but that process is gradual. 

It’s like my brain comes back in stages. Motor function seems to return first, and I flail about quite a bit. Speech returns too, but I often don’t make sense, or jumble up my words for a while. The last thing that seems to return is my ability to store memories, so frequently I don’t recall my words, or actions in this period. 

After the actual seizure, this period of semi-functionality is probably where I am at most risk. I am unsteady, confused and disoriented. And I’m not all there. If I had a seizure on a busy road, I could easily stumble into traffic. People might think I was drunk, or crazy. They certainly wouldn’t immediately work out I was in a post-seizure fugue state. 

My memories of my last seizure are disjointed, and spread out. I recall snatches of conversation in the ambulance outside of my house. They couldn’t take me to my hospital of choice, the Whittington, for some reason, and instead insisted on the North Middlesex. The North Mid is slightly closer, but I am on the books of the neurology department of the Whittington, that’s why I preferred it. The care I’ve received in both hospitals has been fantastic.

I have no memories of the around ten minute drive to the hospital, but I do recall the flicker of the blue light as we set off. I don’t recall being transferred into the A&E, and my next memory is being semi-conscious, and noticing they had put a cannula into my hand, with what looked like a litre of saline connected to it. 

They told me they thought I had a heart attack, and had taken blood to test for enzymes that mark a heart attack. They handed me a carrier bag, Mrs. H had put my epilepsy mobile phone, and a change of clothing into it for me. The first thing I did was text her, to let her know I was still alive. She was happy to hear from me.

As I recovered, and my brain function gradually returned, I noticed a really unpleasant smell. This is gross, but I’m not going to leave any details out, even the really embarrassing ones. I thought someone in a nearby cubicle had shit themselves. I was wrong, it was me. I soiled and pissed myself during the seizure. That was also new, a first for me, and why, along with the near heart attack, I am describing this seizure as my worst one-off seizure. 

Now I knew why Mrs. H had put a change of clothing in the carrier bag. It was a godsend, and extremely appreciated. The I/V finished, and they disconnected it, so I asked to use a restroom, where I was able to clean myself up, and change my clothing. When I returned to my critical care cubicle, they redirected me to a different area, a cubicle with three high-backed easy chairs, and two other people already there. They told me to sit, and wait. I wasn’t sure exactly what I was waiting for, but I sat there for a while. 

I sat there as long as I could, but I grew more agitated with each passing minute. They hadn’t made it clear to me that they were waiting for the results of my heart attack blood test. I knew I had absolutely no chest pain, and that was good enough for me.

After an hour or so of sitting in the big chair in the little room, I finally decided it was enough, and I found the nurse would had been helping me. I told him I had to leave, now, and asked if he could remove the cannula from my hand. He made me wait until he found a doctor to speak to me.

The doctor told me if I left, I was leaving against medical advice. I was cool with that, I felt fine. Well, as fine as one can feel after a heavy duty tonic-clonic seizure. Other than a deep gash in my tongue from biting it so hard, I had no other injuries. I had no chest pain from the suspected heart attack, I don’t think I had a heart attack, but I do think I came close. I didn’t wait for the test results.

The nice nurse removed my cannula, and asked someone else to go outside with me and wait, while I summoned an Uber. And fifteen minutes later, I was home, safe and sound. 

The fallout

I was meant to be the responsible adult the next day, on Monday morning, dropping off Mrs. H, and collecting her after her long planned and awaited, day surgery. Clearly, I was in no shape to deal with any of that, nor was Mrs. H. 

My seizures are particularly traumatic for Mrs. Hippy, witnessing them, dealing with them, phoning for ambulances, the lot. These were unforeseen circumstances, beyond either of our control. Mrs. H rang the hospital early, and told them what happened. They were not unsympathetic, but clearly it is a hassle for them too. 

I spoke to my GP on the Monday morning, and told her what happened to me, and to my partner. She was very kind, and said she would consult with my neurologist on what action to take. 

Mrs. Hippy also spoke to her GP, about her cancelled surgery. The GP immediately sent a letter to the hospital, explaining what happened, and asking for them to reschedule the surgery as soon as possible, as all the pre-surgical checks remain valid for a while. This letter proved helpful, as Mrs. H had this surgery on Saturday. I tweeted about it. 

Yes, I tweeted. It will always be Twitter to me. 

I wasn’t so good after this seizure. I was bad. I’ve been weepy. I’m not a weepy person, and yet, I have found myself quietly in tears most days. That’s not an easy admission. 

Screwing up Mrs. H’s surgery is unforgivable. Everyone keeps telling me it’s not my fault, and while I accept that I didn’t cause my own seizure, it was still me who had it. It was me, who forced the short notice cancellation of her surgery. I beat myself up about it constantly. I think that’s part of the reason it has taken me this long to write about something that happened nearly two months ago. I had to wait until Mrs. Hippy’s surgery happened.

She only had nine days notice for the rescheduled date. The hospital is doing Saturday surgeries to help clear the backlog, and Mrs. H qualified because her pre-surgical checks were still valid, and she had been on the waiting list for one of the longest times. Plus, I am certain the GP’s intervention played a part. I feel very fortunate that it is finally done, and Mrs. H is recovering well so far.

But it wasn’t just Mrs. H that was weeping for, I wept for myself too. After dancing around it for a couple of years, and nearly dying from it a couple of times before, it really hit me. This fucking epilepsy bullshit is what is going to fucking kill me. I always wondered how I was going to die. Now, I am pretty fucking sure I know. 

Honeymoon’s Over

My GP had trouble getting in touch with my regular neurologist, and it took a couple of weeks before a duty neurologist raised my epilepsy medication dose. It was long overdue, and should have been raised after my seizure in May. I don’t know why it wasn’t. Hey ho.

A quick history of my epilepsy:

I started having weird, seemingly unrelated emotional, and neurological symptoms about two and a half years before my first seizures. I saw my first neurologist one and a half years before my first seizure. I knew something was wrong, I had no idea what it was. Neither did that doctor, he misdiagnosed me, but to be fair, he didn’t have much to go on.

Incident one consisted of two seizures, with status epilepticus in-between. I was seen by paramedics, but refused A&E

I saw neurologist number two after my first seizures. He also misdiagnosed me, and missed an opportunity to prescribe epilepsy meds. And he told me if nothing else happened in the next 90 days, I was clear of epilepsy. I believed him, I wanted him to be right. He wasn’t. Whoops. 

Incident two was around100 days after my first incident. And it was also two seizures, but I didn’t recover as quickly, so this time the paramedics dragged my unconscious ass to A&E. When I woke up, they sent me home with a referral to neurologist number three. They didn’t catch neurologist number two existed.

Incident three was six seizures in one day, five at home, and the sixth whilst in A&E. I was sedated for 24 hours, and put on epilepsy meds. I’m still taking the same drug today, only at a much higher dose. 

Today, the day I am writing this, is the second anniversary of this day, which I call Super September Seizure Saturday, or SSSS for short. I nearly died that day, and had they not sedated me, you could cross out the word “nearly”. 

I saw neurologist number three a few weeks later. She finally, correctly diagnosed me with Right Temporal Lobe Epilepsy, and she immediately increased my medication dose, from the non-therapeutic starter dose I began in hospital, to a therapeutic level. 

I haven’t mentioned it, but one of my symptoms connected to my epilepsy is very rare. I get ictal nausea, and vomiting. The neurologist said this symptom was key to my specific diagnosis, due to the region of the brain that this type of nausea originates from, along with my seizures. It was confirmed with an EEG. 

I had a bad bout of the ictal nausea in March 2022, and my medication dose was raised again. It remained there until September 2022, when it was again raised after incident number four. I was four days shy of being seizure-free for an entire year.

Incident number four was 361 days after SSSS. The medication kept me seizure free all that time, I think. This was the easiest, lightest seizure I’d ever had. I was on my own, and recovered from it on my own. It took me a bit to work out what had happened to me, but once I noticed my bitten tongue, I knew exactly what had happened. I rolled with it, and recovered relatively quickly. I even finished writing a very long piece about my health that was meant to mark being seizure free for an entire year. I took it in my stride. That hasn’t happened before, or since. 

My medication dose was immediately raised after incident four. 

Incident five was much worse than the fourth. I happened 231 days later, so a slightly shorter gap. It was also a bigger, badder seizure, and I felt the full force of my aura leading up to it. I did have the partial aura the day before, and the morning of, but I ignored them, as it wasn’t uncommon. That was a poor decision, as that morning, I went out for a blood test, and on the way back, the seizure happened just outside of my house. It’s been my biggest fear, and why I rarely go out. It happened on my doorstep, 

I felt it coming as I was walking home, and hoped I would make it inside. I didn’t. Mrs. H heard me go down, a neighbour saw me go down, and a passing doctor stumbled upon the aftermath, and helped Mrs. H get me inside. He also cancelled the ambulance my neighbour phoned, and I was very grateful for that. 

My physical recovery was slower than with incident four. Incident five saw a few physical injuries, as well as the usual tongue biting. But on top of that, it was a massive knock to my confidence. I was already wary of leaving the house, because of the fear of this very thing. And now that it’s happened, that fear is on steroids. I know how much worse it could have been, had it happened only 10 minutes earlier. I was on a busy high street, it’s an A road too. It scares the shit out of me. 

The key here is my medication dosage wasn’t increased after incident number five. I was given a short course of an older drug, a sedative, and a boring one at that. I’d been given this one before, to help with the ictal nausea, but again that was just a short course too.

When my most recent incident happened, number six, it was the worst single seizure I’ve had, on every metric I can think of, and probably a few I don’t even know about yet. 

I am constantly learning new things about epilepsy. Some things I learn through first hand experience, some things I learn about online. And some things, I find out about both ways. That’s how I learned about the concept of a “honeymoon period” with epilepsy drugs. And that’s why the title of this piece is “Honeymoon’s Over”.

After my sixth incident, I went into quite a spiral of depression. I haven’t spoken to my neurologist in nearly 18 months, and haven’t seen her in person in nearly 24 months. I wondered if becoming resistant to epilepsy meds was a thing. Here’s my simple math:

Incident 3 to incident 4 – 361 days

Incident 4 to incident 5 – 231 days

Incident 5 to incident 6 –  80 days

The gap between seizures is decreasing, while the intensity of them is increasing. My dosage was increased after incident four, but not after incident five. If it wasn’t increased after incident six, I predicted my next seizure would be less than 60 days away, and potentially fatal. 

I googled, since I couldn’t ask my consultant. 

That’s how I discovered what a honeymoon period refers to in terms of epilepsy meds. That’s how they describe developing resistance. The drugs work well for a while, until they don’t. Then the dosage is raised, and the honeymoon period resets again somewhat, and you’re good for a while. Until you’re not. Rinse and repeat until you reach the max dose of the medication. 

It took a few weeks for my GP to get advice from a neurologist, to raise my medication dose. The next increase, which I expect will follow my next seizure, assuming I survive it, will bring me to the max dose of this drug. And the incident after that will mean transitioning to a different, probably less effective drug, and going through the whole honeymoon period thing, all over again. FML.

Clearly, and obviously, this is my own speculation based on reading lots of medical stuff online that mostly wasn’t over my head. There’s a tremendous amount of information out there, and much of it lines up with what I’ve been going through. That’s how I confirmed emotional auras are a thing. I’ve worked out so many things on my own, in the absence of actual medical care. And if I ever get to speak directly with another neurologist, I have so many more questions. And stuff they can learn from me as well. 

One thing I’ve learned about epilepsy is that no two people experience it exactly the same way. Everyone who has this stupid condition, has a unique take on it. It manifests differently in everyone, from auras, to the type of seizures they have, and what may or may not trigger them. Epilepsy is a catch-all term for people who have seizures, but those seizures, and the symptoms around them can vary widely. And not even every neurologist is aware of every symptom. 

The neurologist who diagnosed me said the ictal nausea and vomiting symptoms were key to my diagnosis. And yet, one neurologist disregarded it completely, and another who consulted on my case, had never even heard of it before. Trust me, it exists, it’s horrible, and for me, it is worse than the seizures. I’m awake for the nausea, and I experience every second of it, but when I have a seizure, my brain is shut off completely. It’s the aftermath and recovery that suck.

What I know about the honeymoon period with my medication, is that it doesn’t last. At some indeterminate point in the future, I am going to have another seizure. It may happen without warning. It might be fatal. Or I might wake up to another bout of ictal nausea, that lasts all day. Or I could have my partial aura, which feels like a wave of depression and doom washing over me, and makes me expect a seizure that may or may not come in that moment. It’s a terrible way to live. 

Final Thoughts

This is more like a blog, I know that. It’s off the top of my head ramblings. I wanted this piece to be more considered, but that didn’t work out. And that’s a shame, as this piece is serving several functions. It’s marking the second anniversary of SSSS, it’s the first new piece for my brand new website section on epilepsy, and it’s a record of what’s been going on since May, with my stupid condition. 

The truth is I haven’t been coping with any of this very well. Being able to write about it, is a step in the right direction. I’ve never been as scared as I have been since the last seizure. It was worse than the previous twelve in so many ways. And I wasn’t sure anyone was going to tweak my meds, and as I’ve just explained, they require on-going tweaking, if I want to remain seizure-free.

And that’s the thing, the crux, the heart of all of this. All I want to do is remain seizure-free. I don’t want to have another one. They just keep getting worse. The recovery after each one is harder, I lose a little bit more of myself after each one, too. The key to my happy, healthy future is to prevent all future seizures. And I know that’s never going to be possible. 

In general, one out of one-thousand seizures is fatal. That leaps to one out of one hundred and fifty, if your seizures are poorly managed. My seizures are poorly managed, it’s inherent in suffering from the honeymoon period thing. It’s said around 30% of epilepsy patients continue to experience seizures while on medication. I’m in that group. 

I need better monitoring, I need access to a consultant specialist. My GP surgery is great, but this is all outside of their area. That’s why consultant specialists exist. I don’t know why I’ve had such trouble accessing care. I doubt it is down to my neurologist, but it has to do with my neurologist’s gatekeepers. The NHS is in crisis, that much is evident. It’s been starved of funds and resources for 13 years now. You know what I mean. I don’t blame that on the doctors, nor the administrators. I blame it on the government. Demand has never been higher, the pandemic made all that even worse. 

I wonder if I am counted in that 7 million plus number of patients awaiting treatment? I doubt it, as I am being treated. Under-treated, but treated just the same. Diagnosed too. Diagnosing is the sexy part, doctors love to diagnose people, and rightly, I expect that continues to be the priority. But on-going treatment matters too, and I only seem to be able to access it indirectly, and when I’m in crisis. Some proactive healthcare would delay, or prevent my need for future critical care.

I am terrified by the thought of my next seizure. I know it will be worse. It’s only a matter of time. Will it just be my bitten tongue, or will I have other injuries as well? Will it happen at home, or on one of my very rare trips outside to do something essential. I’m overdue for the dentist, I’ve moved my check-up appointment several times, their office has a tall, steep staircase, that would kill me if I fell down it. How much longer can I live like this? Do I just say fuck it, and pay the price with a broken neck? 

And I know there will be a next time, a next seizure. It’s a statistical certainty at this point. It hangs over my head constantly, it colours my every thought, and decision. It’s the first thing I think of when I wake up, and the last thing I think about before I drift off to sleep. It’s taken over my life in the worst possible way.

I will end on the one reassuring thing, for me anyway, but certainly not for those who I care about, that I will be leaving behind. If a seizure kills me, I won’t even know I’m going, never mind that I’m gone. The way the seizures mind-wipe me, means I know it will be the most peaceful, pain-free death imaginable. I know this based on all of my previous seizures. Had any of them been fatal, I wouldn’t have known it.

Having a seizure is what I imagine death is like anyway. You’re not there. You’re not anywhere. You’re just not. 

Mrs. Hippy will have access to my Twitter account (and this website if she can be bothered), and will post the news, should my untimely death occur. 

Like I said, it’s my sincerest wish to never have another seizure again. But if I have to have a fatal one, just know that I didn’t feel a goddamn thing. 

Doug – the northlondonhippy is a real downer. He used to be the king of fun, he used to be a lot of things. Now, he’s just a shell of his former self. Check out his former self by reading The Sex, Drugs, and Rock & Roll Collection, or if you want to dig deeper, there’s also Hippy Highlights. 

Fear and Denial

anti-natalism, epilepsy, the hippy,

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