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.