The hippy figures out a lot of stuff

A Journey of Self Discovery

I didn’t know it at the time, but my most recent health issues started late in 2018, when I had a weird incident with my car. I somehow ended up with two flat tyres. I had no idea how it happened. Still don’t nearly four years later, not exactly anyway, but I do have my theories. 

I call it “weird” because I didn’t have an explanation for how it happened. I was driving into central London to work a nightshift, and about two-tenths of a mile before I reached my office, I found I had deviated from my route. My two front tyres were flat, and I had no idea of the cause.

I didn’t connect the car incident to anything, for the longest time. In my haste to deal with the damage, and get back on the road, I ignored the most important factor: the cause. 

It has only been in the last couple of months, that I realised this incident was most likely the earliest, most tangible evidence that something was seriously wrong with me. Neurologically. 

This is mainly the story of how I ended up being diagnosed with a rare, serious form of the epilepsy. It’s also the tale of how I lost four years of my life because of it. It took some time to work that out too. 

I have Right Temporal Lobe Epilepsy, with Ictal Vomiting. Around 1 out of 100 people in the world have epilepsy, but around 1 out of 100,000 people have the type I’ve got. 

Epilepsy is sadly not my first rodeo, I have had a few other major, complex diagnoses along the way, and they are all part of the bigger picture, so I cover them too. 

There was a long road to reach my epilepsy diagnosis. Far longer than I understood at the time. Truth is, it is still sinking in. 

Since my first seizure, which occurred in April 2021, I have been on what I laughingly call “a journey of self discovery”. I’ve spent far too much time going over the details of my life, trying to figure out how I ended up here. I should also mention that I’ve had a lot of time on my hands. 

As well as travelling a semi-serious path of self discovery, I’ve been playing medical detective too. With the help, and guidance of both my GP, and my current neurologist, I think I have finally pieced it all together. So sit back, strap in, and get ready for a wild ride.

Born too soon

It wouldn’t be my story without the start, and the source of my original trauma, and many of my health issues. I was born six weeks prematurely, way back in the olden days of 1963. 

Cue the violins: I was kept in an incubator for the first four or five weeks of my tiny, little life, and deprived of human contact. They didn’t know if I would make it. Six weeks was pretty early way back then, and I was considered something of a miracle baby for surviving. 

I think I know why I was born prematurely. My mother smoked cigarettes throughout her pregnancy. It was the early 1960s, so no one ever told her she shouldn’t. Ooops.

The first clue I had as a child that my birth was less than ideal, was when I was 6 years old, and in the first grade. I had my first eye test at school. They discovered I had severe myopia, I was extremely short sighted. It explained why I didn’t do well the previous year in Kindergarten. I couldn’t see the blackboard. I couldn’t see anything!

My parents took me to an ophthalmologist. He diagnosed me with my “premature myopia”, and gave me my first pair of glasses. They were just like Buddy Holly’s. I looked like a mini version of him, only without the guitar, or talent. 

I can still remember that moment, suddenly being able to see clearly for the first time at age 6. It was a BFD. My eyes hadn’t been tested until then, and no one picked up on my poor eye sight. I certainly didn’t have a clue, since it was just normal for me. I immediately began to do much better with my school work. I could finally see the blackboard. I could see everything!

Thinking about all this, brought a long lost memory up to the surface. It’s just a small recollection on my road of self-discovery. 

I remembered my parents often yelling at me, at age four or five, for sitting too close to the television. It was a huge clue that they missed, that my vision was less than ideal. Instead they screamed at me that I’d hurt my eyes if I sat too close to the screen. 

How close are you to the screen you’re reading this on? Just sayin’.

I didn’t really understand all this completely, after all I was only 6, but I knew I was different, because I was born too early. 

Truth is, knowing all that I know now about my health, I wish they hadn’t saved me. But hey, ho. I’m still here, still trying to make the best of it.

My belly is burning

Flash forward to age thirteen, and the beginning of puberty. I started getting chronic heartburn. It was mild at first, but quickly worsened. It went on for a while. 

I finally reached a point, where I couldn’t eat, or drink at all. I was both malnourished, and dehydrated. I could barely even swallow my own saliva, the pain in my stomach was too great. 

My doctor admitted me to hospital, and put me on a drip. They weren’t sure what was wrong with me. They thought I might die. 

I overheard two doctors speculating that I had leukaemia. I had seen “Love Story” on TV, it was a massively popular film from 1970. Spoiler alert, one of the main characters dies from leukaemia. I knew it was a serious disease. I was scared.

I was in the hospital for over a month, and had all sorts of tests. It was hard on my parents. I think everyone believed I really was going to die, but I didn’t. I bet you worked that out already. 

In the end, I was incorrectly diagnosed with an ulcer, and sent home with ulcer medication. I was told it would heal, and I would get better.

My ulcer didn’t heal, the pain continued, but it was more manageable with all the antacids I was being fed. I wasn’t pain free, it was always there, and occasionally it flared up to scary levels of pain. I managed to function, to return to school, and get on with my life. I learned to live with the chronic pain.

Another time jump, it’s now five years later, and I’m age 18. I had a new GP, a kindly old guy, who is probably one of the best doctors I ever had the pleasure of being treated by. He was my parent’s doctor for many years. I even interviewed him once, for a school project when I was 11 years old. I wanted to be a doctor back then. I was 11, I didn’t have a clue!

At 18, I went to see him, specifically to discuss my stomach pain, and he agreed if it were an ulcer, it should have healed already. 

His practice was in his house, which wasn’t uncommon back then. This was in the New Jersey suburbs, where I grew up. He had his own X-ray machine, a full-on monster of a device, with a motorised gurney, that moved your body, while the X-Ray camera took pictures from various angles. I was on there for ages, drinking a chalky, pink liquid called barium. My kindly old doctor was far more thorough than they were in the hospital. 

I didn’t have an ulcer. I have something else, called a “hiatus hernia”, which I was born with, because surprise, surprise, I was born prematurely. Things didn’t fully form, and develop down there before my birth. He could see it clearly on the X-Ray that he showed me. 

Specifically, a hiatus hernia, is a physiological malformation of the stomach, the oesophagus, and the diaphragm. A bit of the top of my stomach, where it connects to the oesophagus, protrudes up through my diaphragm, and stomach acid gets trapped there, causing chronic heartburn. 

The treatment for a hiatus hernia, is pretty much the same as an ulcer, the difference being, having a hiatus hernia is a chronic, ongoing condition, and it won’t ever heal. 

There was a new drug available around this time, an acid inhibitor, the first of its kind, called Tagamet. I was put on it, and while my symptoms didn’t go away completely, it was the best I had felt in 5 years. 

Over time, acid inhibitors improved, and for the last nearly 20 years, I have been on a more modern one that has kept me pain free 99% of the time. I maybe have a minor flare up once, or twice a year, otherwise I can eat just about anything, and not have a moment’s pain. All thanks to that kindly old doctor back in 1981, who finally diagnosed my issue. 

As an aside, I googled my old doctor, and discovered he lived to a very ripe old age, but sadly, and unsurprisingly, he is long gone. He was one of the good guys.

The other thing that came out at age 13, when I hit puberty, was my chronic depression. It’s been a lifelong acquaintance. I had my first suicidal thought at age 13, but more on this later.

Hard to diagnose

My health was pretty good for many years. As long as I took that one stomach pill per day, I was mostly fine. And I got on with my life. I hardly ever saw a doctor, for anything. 

When I moved to London in the early 90s, and started travelling more for work, I needed some vaccines. That’s why I registered with my first GP surgery here. You needed proof of certain vaccines, like Yellow Fever, to enter some countries. 

I picked up a stomach bug in Mogadishu in 1993, when I was covering the arrival of US troops for Japanese television. I came back with chronic, explosive diarrhoea. 

Sorry, gross, I know, but it plagued me for around 6 months. I saw my GP, repeatedly, I had all sorts of tests, and I was even referred to the Hospital for Tropical Diseases in central London. No one could work out what was causing it. 

It was my GP, who finally figured it out. I had some rare intestinal infection, that was easily treated by a short course of a specific antibiotic. After 6 months, the meds cleared it up in less than a fortnight. I stopped jogging to the loo five times a day. Yay!

I mention it now, because it is an illustration of something that has become an ongoing issue for me, being hard to diagnose. 

I don’t know why, but it seems like everything I’ve ever had, has been hard to diagnose. It started with my teenage stomach problems, and has continued ever since. 

Flash forward again. I was regularly getting prescriptions for the stomach pills via my GP, and in 2003, he suggested I get a second opinion on my stomach issue., He said my diagnosis was so long ago, that keyhole surgical options had advanced since my then. 

He referred me to a gastroenterologist, who arranged to have a camera shoved down my gullet. It indeed confirmed beyond a shadow of a doubt, that I had a bad hiatus hernia. 

The new doctor said surgery was possible, and it could end up helping, but there was an equal risk it could make thing worse, like swallowing could become painful. He said if all it took was one pill a day to manage the pain, why risk the surgery? I agreed. Again, all of this is because I survived my premature birth. 

Who is Dr. Hashimoto?

In 2008, I was diagnosed with Hashimoto’s Disease, a serious condition that gives you a slow thyroid. It was named after the doctor that discovered it. 

It’s an autoimmune disease, your own body attacks your thyroid. Cool, huh? But before that diagnosis, I had around 6 years of various, seemingly unrelated, and undiagnosed health issues. 

As I mentioned, I have a history of depression, and anxiety too, dating back to my teen years. So in other words, chronic, but manageable. That’s how I’d come to see it. 

At 17, I saw a great psychologist for around a year, and he helped me a lot. He was super progressive, and on my side. 

He told me a lot of my issues stemmed from my parents. He was right. I was doing better under his care, but my Mom and Dad didn’t like his criticism so my sessions came to an abrupt end. 

I started anew with a clinical psychiatrist. I didn’t like the second guy. He was Freudian for starters, so his reply to every goddamn question I asked him was this: “Well, what do you think?” Every goddamn time! It was frustrating AF. 

Also, as a medical doctor, he could prescribe. I tried Xanax, and Valium thanks to him, I didn’t like either of them. Well, technically I probably liked the Valium a bit too much, but neither one suited me, nor my needs. 

He also tried to force me onto Prozac, one of the earliest modern antidepressants, but my experiences with the tranquillisers put me off exploring any more pharmaceuticals. I still avoid anti-depressants to this day. 

For me, I often confuse my depression with being clear sighted. Sometimes it is difficult to tell the difference. I see life as pointless, and meaningless, and I have spent an inordinate amount of time wishing I didn’t exist. Sorry, dark I know. 

It’s a struggle sometimes, getting on with the tedious drudgery of real life, when in your bones you know it is all completely pointless. I’m fun at parties. 

I’ve struggled for meaning, and purpose in our cold, indifferent universe, since I was a teen. So many of the great questions of existence remain forever unanswered. 

What I worked out is that whatever meaning anyone’s life has, is found through self-definition. We give ourselves meaning, and purpose. Whether that’s through joining a cult, or religion, or creating art, or starting a family, whatever makes you matter, came from inside you. 

I discovered a medication that eased my anxiety, and depression, and helped me deal with my existential angst. It wasn’t something a doctor could prescribe way back then. 

At age 18, I found cannabis, and cannabis found me. I have used it daily ever since. It is nature’s anti-depressant. I wouldn’t have been able to live my life, without it. It’s a miracle drug, that’s saved my life countless times. It’s a massive shame, and a stain on our society, that it has been demonised for so long. 

Just to make it crystal clear, I have had chronic, manageable anxiety, and depression since age 13, that since age 18, I have treated by self medicating with cannabis. 

I mention my early mental health history now, because in late 2002, and out of blue, I started having wild, crazy mood swings. I was always a quiet depressive, I never, ever acted out, but suddenly I was having freak outs, with very little, to no provocation. I had a couple of them at work. 

At the time, I was the Night Editor for a large, well known international TV news agency, here in London. It was a job I had done, and done well, for a long time. 

The mood swings lasted for a couple of months, and then they disappeared as mysteriously as they arrived. But by then, the damage was done. I was signed off work for depression, as I already had that diagnosis, but this was like nothing I had ever experienced before. 

I ended up leaving my job, because I was embarrassed by my behaviour. I later learned that one of the main, early symptoms of thyroid disorders is mood swings, but I had no idea at the time. I was again offered anti-depressants, but declined, as I have always done. I’ve just never trusted them, like I do weed.

After leaving my Night Editor job, I was unemployed for around a year or so before getting my next job. In that time, I developed other symptoms related to Hashimoto’s Disease, but I ignored them. 

I had just turned 40, and I assumed, incorrectly, that these new symptoms were simply signs of ageing. Specifically, I had two issues, that continued for years, and didn’t clear up until I began taking thyroid meds. 

The first was heart palpitations, I would regularly have odd flutters in my chest. I would notice it whenever I was keeping really still. It felt like a bird flapping its wings inside my ribcage. It didn’t feel right, but I attributed it incorrectly to getting old. 

The other symptom was a brief wave of nausea that would wash over me, and then go away. It wasn’t strong, but it was very frequent, and impossible to ignore, but ignore it I did. I noticed both of these things happening daily, sometimes more than once, for around five or six years.

Hands up, I take full responsibility for this. I never mentioned it to my GP on the rare occasions I saw them during this period. I’d have probably been diagnosed a lot sooner, had I flagged these symptoms up earlier.

This is where it gets weird, again. In August 2008, I woke up one day with terrible lower back pain. It was unlike anything I experienced before. Both of my parents had bad backs, so again, I attributed the pain simply to ageing. 

I managed to make it downstairs to my sofa, where I pretty much remained for around 2 months. The pain was so bad it made my legs buckle, and I could barely walk. It took ten minutes to make the ten steps to my toilet. 

I had to see my doctor to get a sick note for work, I told him back pain ran in my family. He prescribed some pain pills, that didn’t touch my pain, and signed me off for a month. He said the pain should clear up on its own in a couple of weeks. It didn’t, the pain, and my inability to walk continued. 

When I went back to the GP to get my sick note extended, he was surprised to see me again so soon. He said I must have something more serious wrong with me. He sent me for just about every blood test under the sun, and asked me to book a follow up appointment a week later for the results.

When I returned a week later, my GP told me he had some good news, and some bad news. The good news was I would be getting free prescriptions courtesy of the NHS for life. The bad news is I had Hashimoto’s Disease, and that was the cause of my back pain. 

I’d never heard of Hashimoto’s Disease before, so I asked him to elaborate, and he did. He explained it was a serious thyroid issue.

One of the many symptoms of thyroid issues is inflammation between joints in the soft tissue that cushions them. Most common is knee trouble, but for me, it was in the tissue between my lower vertebrae that was badly inflamed, and causing me immense pain. 

My doctor asked about heart palpitations, and nausea. I confirmed I had been experiencing both, but didn’t realise they were symptoms too. He said they were.

And finally, he mentioned mood swings, he said they were often an early symptom. I recalled my issues in 2002-2003. He looked in my notes, they were still on paper back then, and sure enough, it confirmed what I recalled. 

He said all of it, the back trouble, the heart palpitations, the nausea, and the mood swings, all over a period of the last 6 years, could be attributed to the slow, gradual onset of Hashimoto’s Disease. 

If left untreated, it can lead to heart failure. I have no idea how close I came to that, My GP made it sound like the disease had been with me for a while, and had progressed a fair bit. He based this on me experiencing so many symptoms for so long.

I was put on thyroid medication that very day. It took some time, and many blood tests to get the dosage right. I was finally treated, and my thyroid hormone levels read as normal in blood tests from this point on.  

My back pain went away, and hasn’t returned. I haven’t had a heart flutter, nor the thyroid related nausea either. And no more mood swings, which was the very first symptom something was wrong. 

You’d think I would have learned another valuable lesson, yet again, about being difficult to diagnose, but you would be wrong. 

The start of years lost

It’s now around 11 years later. My health had remained fairly stable, and good for the entire time. And then in early 2019, I had a breakdown that I thought was related to my chronic depression. 

The suicidal thoughts that I’ve lived with since age 13 got louder, more dominant, and more persuasive. Over the period of a few months, I began paying more attention, until I finally surrendered myself to them. 

I told no one, but what I did do, was start planning for my departure. I had a viable plan, a date in mind, and the determination to see it through. 

My suicidal breakdown is a story, in and of itself, best told separately. I won’t be going into the details here. The headline is, I didn’t go through with it, which again, dear reader, I am sure you worked out for yourselves already. 

There is some external backstory that I will share. I had two things going on in my life that were piling on the pressure. I thought at the time that these were the things made me break, but they weren’t. Both had gone on for quite a while, and nothing had changed with either of them. What had changed was my physical health, but I didn’t grasp that at the time.

I’d been in the same job for many years, and a series of dramatic changes were being implemented, that affected me more than most of my colleagues. It was the luck of the draw, 

I had a unique role because I worked nights exclusively. It meant the brunt of the changes fell squarely in my lap. It also meant doing different roles, and longer nightshift hours. I was very unhappy about it all. Why mess with a good thing?

By far the worst change was they were lengthening my shifts by an hour, and a half. That meant sleeping 90 fewer minutes whenever I worked. It is only very recently that I worked out how detrimental this particular change was to my health. I don’t know how I missed this key fact for so very long.

On top of all that my long term partner, and the love of my life, had been very ill for a few years. She required a lot of care, which I was more than happy to provide. It wasn’t easy working a full time, nightshift job, while caring for someone so ill, but I did it. 

Around the same time my depression was ramping up, I started having something I called “brain blips” or “blanking out”. My vision would defocus, and I would lose a few seconds of time. It was happening two or three times a week. I had no idea way back then, that brain blips were related to my depression. I thought they were separate things, happening in parallel, and not connected.

I kept all this to myself. I don’t think anyone I knew, or worked with, had any idea my depression was reaching critical levels. I think I hid it well, until I couldn’t.

And I never mentioned the brain blips to anyone, except my GP eventually, because I had trouble describing them, and didn’t know what they were. I struggled to articulate what was happening, because I wasn’t actually there for part of it, for a few seconds anyway. 

I was aware my depression had changed, and I knew it meant something, I just wrongly assumed I had reached my limit with my problems, and I crumbled. I ascribed myself with weakness, as it seemed like a reasonable explanation for the change in my mental health. 

But then I remembered the brain blips, and started wondering if they were related. They started around the time my depression increased in late 2018. I don’t have an exact date. I’m afraid it is all a bit vague, because I wasn’t paying attention that early, or looking for anything specific. 

I eventually googled my symptoms. I searched for something that could cause increased depression, while I tried to describe my brain blips in a Google-friendly way. 

The results strongly suggested MS, Multiple Sclerosis. Dr. Google had spoken, and this is why you shouldn’t ever search for medical symptoms.

In March 2019, I worked my last ever shift in my last job. I went in as normal, but I was monumentally depressed, and on the verge of tears. It seemed chemical, more than being due to anything external. I just knew I was in a bad way, but I tried to get on with my work. It was never, ever this bad.

I was short tempered, and gruff with everyone. I could feel myself losing it. It wasn’t anything like the mood swings in 2002. They were high octane rages, this was something different. 

I just wanted the earth to open up, and swallow me, and when it didn’t, I just wanted everyone to leave me alone. I had quite a quiet, yet very public meltdown that night.

The real shame is that many people I worked with for 15 years, witnessed it, and did nothing. People I considered close friends, just left me on my own to twist in the wind. And many of them never contacted me afterward to see how I was. It still makes me sad, even today. The stigmatisation of mental health issues is real. I’ve experienced it for myself now. 

I somehow managed to finish the shift. I don’t know how. I just wanted to run out the door, and keep running until I reached Beachy Head, but I made it to 7am. 

I went home, and I did two things. I booked a same-day appointment with my GP, and I sent my line managers the saddest, longest, most pathetic email I’d ever written. It’s was even sadder than the piece you are currently reading, by a factor of one-thousand. That’s how sad it was.

I told my bosses of my struggles, with the changes to my job, with my partner’s illness, and with my mental health. 

I don’t think I ever really told anyone just how at risk I was of suicide, I didn’t want to end up sectioned someplace where I couldn’t finish what I had planned. So even in the depths of my distress, I still held some of it back. Cat’s out of the bag now. 

My plans were fairly advanced, and pegged to a date in early May. I just needed to keep myself going until then, when I could shake off my mortal coil on my own terms. I didn’t specifically tell my GP that either, I just needed to be signed off until then.

When I saw my GP later that day, after my last nightshift, I described all my issues, physical, neurological, and psychological. Then I asked her for two things: a sick note, which she was willing to provide, and a referral to a neurologist. This was the first time I mentioned the brain blips to anyone. 

Because my description of the brain blips was vague at best, the neurology referral was considered non-urgent. I didn’t mention my suspicion it was MS. I didn’t want my GP to think I was a hypochondriac, but most of all I didn’t want it to be true. 

This was the 19th of March, 2019, the morning after my very last shift on the 18th, a date I will never forget. 

I tried to adjust to my new, non-working life. I expected it to only last a couple of months, before I checked out permanently. 

I’d hoped the neurology appointment might come quickly, but the words “non-urgent” let me know that wouldn’t be the case. I expected the MS diagnosis to be confirmed, thus strengthening my case for departing this realm. 

Cheer up

I’m not going to go into a lot of detail about this period, which went on for a couple of months. I was suffering from bad suicidal ideation. All I thought about all day, every day, was planning for my departure. It was no way to live. 

Cannabis lessened the the pain a little, but not enough to change my mind. I should have increased my dose, and eventually I would.

When a crucial element of my plan disappeared, and literally vanished overnight, I was at a crossroads. This involved my method, and again I will spare you the details, but I no longer had access to it.

I managed to keep myself going, to do the one last thing that I wanted to do, pegged to a date at the end of April. Once I did that, I would be ready to go in early May. 

Only right after enjoying the event that sustained me, that I stayed alive for, I couldn’t go, because one key ingredient was taken off the board at the very last second. 

Maybe this was a sign? I don’t usually put much stock in such nonsense, but I suddenly had a new choice to make. Choose a new method, or figure out a way to come back from the brink. 

I chose life. 

To this day, I don’t know why, but I decided to give myself another chance. I knew even then that picking up the pieces wouldn’t be easy. Nothing worthwhile ever is. I also knew I had to break out of my depressive cycle. 

I knew I couldn’t magically wish myself happy. Wouldn’t it be cool if we could? I knew I needed something extra heavy duty. 

The very first thing I did on my road to recovery was acquire some really strong cannabis concentrates. Shatter, wax, and rosin, if you’re not familiar with them, are nearly pure cannabis extracts, all made via different processes, some chemical, some physical. 

My maintenance doses of herbal cannabis clearly weren’t cutting it. A short, daily course of extracts was key to boosting my mood, and breaking my desperately dark thought patterns. 

Every day I had one session with a banger, and blowtorch. I kept doing phat dabs, really strong doses of cannabis extracts. I’d keep doing them until I could finally giggle, and laugh. 

They do say laugher is the best medicine, but there is a pretty strong argument to be made for cannabis too. 

I got higher than I’d been in many years. One dab is around the same dose as an entire joint, and you’re getting that in one puff. I needed something that packed a wallop to lift me out of my despair. It took me a few weeks, but I managed to shift myself out of six months of dire, suicidal depression. 

Well, I say shift it, but when you have chronic depression, the best you can hope for is a return to your manageable baseline. That’s where I got myself, that’s the point I reached. It was time to start cleaning up the mess I made.

The next thing I had to deal with was my job. I knew I couldn’t go back, Once again, I was too embarrassed by my meltdown. I felt like I couldn’t show my face there, ever again. It didn’t help that I felt badly shunned by some of my closest nighttime colleagues. How could I see them again? 

I used up all my sick leave, all my annual leave, and all my long service leave to keep my paycheques coming in until they could offer me redundancy. My line manage did offer to allow me to return. I was missed, or rather my guess was that the role I played in filling the nightshift rota was missed. 

If I have one regret from this period, it’s that I didn’t find a way to return. I miss my job, and I miss many of my former colleagues, probably a lot more than this sentence can convey. In many ways, I was my job, and my job was me. I’ve been kind of lost without it. Still am a bit. 

Even though I managed to shift my depression somewhat in June 2019, I still kept having these waves of sadness, and impending doom. 

These brief doom-laden waves would come out of nowhere, and absolutely floor me, and then they would pass. It felt almost physical. I forgot about them, until I was looking through some old emails while researching this piece. I discovered several explicit mentions of experiencing this sense of impending doom. Would you believe it was another missed symptom? 

Neurologist Number One

Around a year before my breakdown, I was diagnosed with yet another chronic condition: hypertension. It runs roughshod through my family. My mother had it, all her brothers, and sisters had it. Now, I have it too. 

Since my diagnosis for Hashimoto’s Disease, I’ve had to see my GP every six months for a blood test to check my thyroid levels. Because of my family history, and age, they would routinely check my blood pressure too. It always read as normal until one day it didn’t. 

When they checked it in January 2018, it was a little high. My GP suggested I come back in a month, and have the nurse check it again. So that’s what I did.

I returned to the surgery a month later, so the nurse could take my blood pressure reading. When she did, her facial expression suddenly grew very grim. She said she would be right back, and she left me briefly alone in the treatment room. 

When she returned, she had two GPs with her. Not just one, but two! They said my blood pressure was dangerously high, and that I should go straight to A&E. I told them I felt fine. 

They pointed at an NHS chart on the wall, showing BP danger zones, and I was well up into the red. If you know anything about blood pressure this may mean something to you. My reading that day was 180/120. Normal is 120/80. 

I should have been more frightened, but I wasn’t. I felt fine. They didn’t convince me. I didn’t go to A&E even though I was at risk of a stroke, or heart attack. Stupid hippy! 

After a bit of a debate, the more dominant of the two doctors, who would go on to become my regular GP,  decided to prescribe me some BP meds to begin that day. And she made me agree to return to the surgery the next day, to check my blood pressure again. I said yes to that.

I went back to the surgery countless times over the period of several weeks while they adjusted my meds, and my BP came back down. 

Again, I didn’t die, but I’m sure you were way ahead of me with that tiny bit of detail. After a month, or so, my blood pressure was under control, and reading close to normal.

I finally got an appointment with my first neurologist in September 2019, around six months after the initial referral, and about ten months since I had first noticed the brain blips. 

I spent nearly an hour with him going through my medical history, and my symptoms. He thought my “brain blips” were side effects from the blood pressure medication that I only started taking the year before. 

His theory was that the BP meds were making my blood pressure occasionally, and spontaneously drop. He thought that was why my vision defocused, and I “blanked out” for a few moments. 

It certainly sounded reasonable at the time. He suggested I take my blood pressure meds at bedtime, and discharged me. He did say if the symptoms continued, that I should request another referral. 

I followed his suggestion, and took the meds at night, but the brain blips continued. 

So. the brain blips still happened after switching up the meds routine? Yep. 

Did I request another referral? Nope.

I did what I did with the heart palpitations, and the nausea from my thyroid condition. I normalised them, and lived with them, rather than go back to the doctor.  

My rationale was simple, I already saw a neurologist. I didn’t see the point in visiting him again, and wasting more of his time. To be fair, even if I did, they probably wouldn’t have picked up on what was really wrong with me at the time. 

Sometimes, I’m not particularly clever when it comes to my health. I ignore, or normalise things, that I should be discussing with a doctor. It’s another running theme, along with being difficult to diagnose. 

I finally got redundancy in the Spring of 2020, only weeks before the first lockdown. Just as I thought I might be able to rejoin the world, the world said: “closed due to Covid”. 

My depression remained thankfully at baseline, though the pandemic didn’t do much to improve it. My partner, and I put our plans on hold. We were going to move out of London. Instead, we spent a year hiding from a killer virus, much like everyone else. 

Seizure City

Another time jump, it’s now one year later, April 2021. The first year or so of Covid, and lockdowns was now just a blur. 

I woke up one day, and felt really ill. I threw up several times. And sorry, but I’m not leaving the nausea, and vomiting out of this retelling. They ended up being significant to my eventual diagnosis. 

I knew something was wrong when my meds came back up. The last thing I recalled as I sat back down on the sofa is thinking to myself that something was seriously wrong with me. I didn’t think it was a stroke, or heart attack, but I didn’t know what it was. And the very last thing I remember was feeling an overwhelming sense of impending doom. 

Remember in June 2019, I mentioned repeatedly feeling an overwhelming sense of doom? It was like this, only I never ended up unconscious before. See, it really was a symptom. It’s called an aura. 

The next thing I knew it was an hour or so later. I was being tended to on my sofa by a couple of paramedics. I was really drowsy, confused, and disoriented. I had no idea what had happened. All I wanted to do was sleep. 

My partner had found me unconscious, and face down on the floor, and she phoned for an ambulance. By the time it arrived I was conscious, and my eyes were open, but I was unresponsive, and not speaking. They managed to help me to the sofa, and I gradually regained more consciousness.

The paramedics best guess was that I had a seizure, and they wanted me to go to the hospital, but in my drowsy, and confused state, I declined. The only thing I was interested in was sleep.

The paramedics were disappointed I refused, but accepted my wishes, and they left. I dozed on the sofa for the rest of that day, and most of the next. Pretty sure I went to bed that night. I was rung out.

I have an Apple Watch, it records your heart rate. Mine went sky high from the incident, and remained elevated for a long time afterward. It peaked while I was in the midst of the incident to the highest rate I’d ever recorded. 

I don’t recall anything from the moment I blacked out, to when I regained consciousness on the sofa. When I was finally awake enough a day to two later, I realised I was covered in physical injuries. Here’s a list of them, that I wrote at the time:

Head – 2 scrapes, front and back. Scrape on back is bad

Tongue – back right side bitten

Shoulders – both sprained

Arms – both sprained

Elbows – both scrapped and scabbed

Knees – both scrapped and scabbed

Right knee – sprained badly

Right big toe – bruised, plus a deep scrape

Left 2nd toe – scraped, bruised, and broken

I was a mess. And on top of that, I somehow broke my printer, I bashed it up when I fell. How do I know that when I don’t recall anything? I have video of some of the first incident. 

I have a security camera in my living room, a holdover from when I used to work nights, and the house was often empty, because Mrs. H was working late too. 

The video of the incident is incomplete. I didn’t realise it at the time, but subsequent incidents, which I will get to shortly, made me realise that what I think was actually filmed, was the period between two separate seizures, where I didn’t fully recover. I was in something known as “status epilepticus”.

The video shows me getting up from the sofa. This was after I lost my memory as I don’t recall doing this. I walk over to my desk, where my laptop, and printer live. I don’t know why I went over there.  

When I sit down I am partially out of frame, but you do see me fall backwards off the chair. This is when I grabbed the printer, and knocked it over. 

The chair topples over, as do I. I flop around on the floor on my back for quite a while. I think this is seizure number one, but I am partially out of frame. 

Eventually I sort of push myself to the middle of the room while still on my back. You can see me struggling on the floor trying to move,  turn over, and get up, and not managing it for ages.  I looked a bit like a confused crab. 

It’s clear I’m not in my right mind, but I somehow turn myself over, stand, and steady myself against a wall. I take around two steps before falling forward flat on my face. When I fell, I managed to disconnect the power cable of the security camera, and the footage ends there. 

There’s around 10-15 minutes of video from the time I got up from the sofa, to the the point where I stand up, and fall down again. I think I had a second seizure at that point. This is where, and how Mrs. Hippy found me, maybe an hour later.

A few days later, I phoned my regular GP, and told her what had transpired. She, like the paramedics, thought it sounded like a seizure, but without an eye witness, it was just speculation. She suggested a referral to a “first seizure clinic”, which seemed sensible to me, so I agreed. 

My GP gave me a choice of neurology departments, and hospitals, including the one I visited in September 2019. I picked that one, since I had been seen there before. My GP sent the referral request, only this one was marked “urgent”.

As I regained a little bit of strength I started thinking about what had happened to me, and it sent my depression into super, hyper, overdrive. 

Practically overnight, I was back to the levels of suicidal despair I had not experienced in nearly two years. It really made my mental health crater. I felt like I died, and had been resurrected. I wished I hadn’t been. I was passively suicidal. I was hopeless. I thought whatever was wrong with me would take me. And I welcomed it.

The incident also gave me a brand new fear rooted in actual reality. I’m still dealing with this particular fear today. 

I could have another seizure at any time. I became obsessed with the possibility, and it made me even more afraid to leave the house, more than the possibility of Covid ever did. And I was already shit scared of Covid.

What would happen if I just blacked out, and collapsed on the street? Would anyone help, or would they just step over me? Would my pockets be picked clean on the mean streets of the city? Would my phone, and wallet be taken before I was given any assistance? All of this was terrifying to me. It was the last thing I needed.

The other thing to mention is that after that first incident, the nausea, and vomiting continued. More than continued, it became a daily ritual. I would wake up, feel a bit sick, go through the motions of vomiting, and then get on with my day. 

I started waiting for it to happen before taking my daily medications, so I wouldn’t lose them. I normalised it. I called it, “one, and done”, as I would feel nauseous, barf up a small amount of nothing, and then it would pass. 

My GP didn’t know what to make of this, neither did I. My guess was that it was somehow connected to my suspected seizure, since vomiting immediately preceded my very first one. My GP couldn’t say one way, or another for sure, but she didn’t rule it out either. 

The one thing I did realise is that cannabis didn’t ease the nausea at all. And it wasn’t from lack of trying. Weed is good with stomach issues usually. This was a real clue that the problem wasn’t actually in my stomach.

Neurologist Number Two

Even though I had already been seen by neurologist number one at this particular hospital, my initial referral to their first seizure clinic was declined. 

The reason given was that I didn’t live in their catchment area, which made no sense whatsoever since I had an appointment there only 18 months before.

I lost over a month because of this, as the hospital didn’t write to me directly. The clinic only wrote to my GP surgery, and no one there noticed the letter. It was just added to my electronic notes. It was only when I chased it up with my GP, that their letter declining the first referral was spotted. 

I was given another referral to a different hospital, and first seizure clinic. It was even less geographically convenient for me than the previous one, but I agreed to it. It took another month, so I wasn’t seen again by a neurologist until two months after the first incident.

I should mention, that there is epilepsy in my family. My mother told me about it when I was a teenager. 

In hushed tones she told me one of her sisters had epilepsy, and growing up she used to have full-on seizures. I think she said one or two of my cousins might have had it as well, but my memory of that is less certain. 

What I do recall is the shame my mother had over this with her hushed, almost whispering tone. She literally told me not to ever tell anyone about this, like it was a big family secret. 

She also said since I had never had a seizure, it was most unlikely I ever would because it started with my aunt in childhood. She thought the risk of me having it had passed, but she wanted me to be aware of the risk to my potential children, one day. There’s way too much to unpack here with my smother, I mean mother, so we’ll just move on. 

That was something I believed for the longest time, that epilepsy had to begin in childhood. I always thought it was a kid’s thing, that if you had it, it started when you were young. I couldn’t have been more wrong, as I found out for myself. A neurologist told me, it is actually far more common to have it appear when you are in your 70s, than childhood. Colour me surprised.

What I didn’t understand at the time, and still don’t understand now is the stigma. Clearly my mother still believed it even in the late 1970s, that there was something shameful about epilepsy, and having “fits”. As if anyone had any choice in the matter for something that happens totally involuntarily. 

There’s still a lot they don’t know about epilepsy, and the brain, but the one thing I am pretty sure they have established is that it is not some sort of personal weakness, or failing on anyone’s part. It just happens. It’s like an electrical short circuit in your brain. If you are unlucky enough for it to happen to you, it’s in no way your fault!

It didn’t go well with the second neurologist. I’m going try to choose my words very carefully. I don’t mean to slag the guy off, but the fact is he didn’t really listen to me. He immediately dismissed the vomiting as unrelated, and as we will discover shortly, the vomiting was actually a major component of  my eventual diagnosis. 

He was also skeptical that I actually had a seizure, even after I told him of my family’s history. He didn’t seem interested in my appointment with the first neurologist regarding the brain blips either. 

He asked me what I did for a living, which kind of stumped me, I hadn’t been asked this in a long time, so I said I was a semi-retired journalist, which I guess is kind of true.  From this point, it was as if he needed me to know that he was a genius doctor. 

He spent a lot of time criticising the clinic that declined my initial referral, saying it didn’t matter to him where someone lived, as if this somehow made him a better doctor. Maybe he was insecure for some reason, I don’t know. It seemed to matter to him that I be impressed with his background, and abilities as a world class neurologist. He spoke a lot more than he listened.

He was very disappointed that there were no witnesses to my suspected seizure. I told him I had the video, and let him watch it on my phone. He was interested (and impressed) with the video quality, and resolution, more than he was with the actual content.

He said my behaviour appeared bizarre, but it didn’t look like I was having a seizure. I now know the actual seizures happened off camera, and what was on the recording was the period in-between two seizures when I hadn’t fully recovered. He should have been able to work that out for himself, being a world class neurologist, and all.

He did do several things, he ordered a bunch of tests, which he told me were unlikely to find anything. And he gave me the phone number of his clinic nurse, to contact if I did have another incident. Plus he said he would arrange for a follow up appointment in six months. 

Along with telling me he didn’t think I had a seizure is that he didn’t think it was epilepsy. He said if I didn’t have another incident within three months of the first one, I would be in the clear. 

This is very much what I wanted to hear, that it probably wasn’t epilepsy, as was the fact that he didn’t think I had a seizure. It was music to my ears, and I was dancing a joyous metaphorical jig. 

I left the appointment feeling good about it. Within three months I would know if I was OK.

Spoiler alert: I was far from OK.

Incident Number Two

I dutifully counted down 90 days from the original incident in April. The daily vomiting continued, and my depression remained really bad, but I tried to find hope in my countdown to being clear.

As soon as I reached that date, and 90 days had passed, I let out a giant sigh of relief. I wasn’t going to have another seizure. I didn’t have epilepsy. Yay!

I wrote to the second neurologist, and told him the good news. I also cancelled the tests he arranged, since he thought it was unlikely they would find anything, anyway. And why did I need them? I was in the clear, and whatever happened in April, was just some weird aberration. It was a one-off not to be repeated. Double yay!

The morning nausea, and vomiting still continued, but I just went on with ignoring it, and normalising it. The second neurologist said it was unrelated, so I just assumed it was something else that I would deal with in due course.

I was still afraid to go out. I worried about it happening again, but when the three months were up, I thought it would be safe to leave the house. 

A few weeks after the three month mark, and after I wrote to the second neurologist, and cancelled all the tests, I had my second incident. It was a lot worse than the first one. 

It was the 6th of August. I don’t remember any of it, almost the entire day is lost to me, until I woke up in A&E late in the day. 

Mrs. Hippy witnessed it all, I had two separate, full-on tonic clonic seizures, complete with convulsions. In the olden days, they used to call them grand mal seizures, but whatever you want to call them, they are nasty, and they wiped me out. 

Mrs. Hippy said between the two seizures, I was in some sort of rage. I was unpleasant, and nasty to her, and the ambulance crew. I don’t recall any of this. Status epilepticus again?

After the second seizure, I didn’t regain consciousness so they took me to A&E with the blue lights on. I didn’t have any say in the matter, but I probably would have refused treatment again, if I was awake. 

As I said, I have no memory of any of this. It’s a blessing for me, whereas Mrs. Hippy witnessed it all. At least now we knew for sure they were seizures. 

I was discharged from A&E, and sent home with a referral letter to a third neurologist at my local hospital. It’s the same one I was taken to in the ambulance. They have a large neurology department, but they don’t have a dedicated first seizure clinic. 

They missed the fact that I had already been seen by neurologist number two, and was allegedly under his care, or they wouldn’t have made the new referral. 

I could have been referred to my local hospital at the beginning, and probably should have done, but I prioritised the “first seizure clinic” thing. What I later learned, is there was really no difference. Either way, first seizure clinic or not, you just end up seeing a neurologist. 

For me, the worst part of the second incident, was waking up in A&E without my eye glasses. I am legally blind without them. If you know anything about eye glasses prescriptions, I am around minus 12.0 in each eye. It’s pretty bad. 

I managed to get a mini-cab back home, somehow. You’d think the rest of what happened to me was worse. You’d be right, but the lack of eye glasses on the journey home distracted me from what had actually transpired, the tiny bit that I could recall anyway. Everything distracted me. 

I had been reassured by the second neurologist, I had been even more reassured when I reached three months of not having a repeat. This second incident threw me for a loop, especially because it was worse, but I did my very best to do nothing about it.

I was angry I was taken to the hospital. I was angry I didn’t have my eye glasses. I was just angry. 

I was also exhausted after all this, and rested for many days. I was wiped out. My heart rate went crazy again, and remained elevated. It went even higher than the first time, during the actual seizures. And my resting heart rate didn’t come down as quickly, like it did after the first incident. 

I didn’t phone the nurse at the second neurologist’s clinic. I didn’t even phone my GP. I did sweet FA about the second incident. I just decided to wait for the new, third referral in October. I tried not to think about it at all. I felt totally hopeless.

Even then I grasped how incorrect the second neurologist was with his interim diagnosis. I didn’t want to see him again. I felt like he got it all totally wrong. He didn’t even reply to my “good news” letter.

The one noticeable change after the second incident is that my nausea, and vomiting worsened. Instead of being once a day in the morning, the one, and done part ended, and the nausea, and vomiting continued throughout the day. I still thought it was connected to the seizures, even though neurologist number two disagreed. 

I should have called my GP, or the clinic nurse. I should have done something. Anything. But I didn’t, and all the shit that follows is all on me. 

The fear, and depression ramped up, and overwhelmed me. A part of me wanted to stick my head in the sand, just ignore it all, and hope it went away on its own. And an even bigger part of me, wanted to just go to sleep one night, and not wake up.

Super September Seizure Saturday

I would go on to pay the price for my inaction in August. I had a third incident. It happened on Saturday, the 18th of September. This one would be the worst of the bunch. 

I had six tonic clonic seizures all in one day. Five happened at home, the last of which was in front of paramedics, and the sixth while in A&E. And I didn’t recover in between, I remained in status epilepticus throughout. 

I wouldn’t accept it in the immediate aftermath, and it took me months after my diagnosis, to finally believe that I could have died that day. I was at an extreme risk of SUDEP. 

I didn’t want to believe it, but after being told by several doctors how close I came, including by my current neurologist, I finally accepted that it is true. I very nearly died. 

I call this day, “Super September Seizure Saturday”, mainly because it just trips off the tongue, like the name of a Saturday morning kids TV show, or a big sale at an electronics shop. Go on, say it out loud in the voice of an annoying TV announcer: Super September Seizure Saturday!

I also call it “Super September Seizure Saturday”, because it is easily one of the worst days of my life, so it deserves a suitably horrible name. I wish I could remember something about it, but I don’t recall a single second of that entire day.

Matter of fact, I subsequently discovered, that my memory of the preceding couple of days leading up to SSSS vanished as well. I had email exchanges with people, leading up to that day, that I didn’t recall, even after they forwarded me the actual messages. I don’t remember any of it. I also had a special meal with Mrs. Hippy the night before, I can’t recall that either. I remember planning it, much earlier in the week, but the actual meal on that Friday night, is lost to me. 

Everything from here was gathered via Mrs. Hippy’s recollections, and from reading the parademics’ reports. Yes, plural. We were visited my more than one ambulance crew that day. 

I had my first seizure while sitting on the toilet. Talk about unnecessary, and gross detail! But it is what it is, and it happened where it happened. 

Mrs. Hippy said she heard me cry out strangely. She said it sounded like the howl of wounded wild animal, and she heard my body slump. She ran from the living room to the hallway, and opened the door to the loo, where she found me unconscious, and convulsing. She phoned for an ambulance, and it arrived quickly. 

Though I don’t remember any of this, Mrs. Hippy sure does, in vivid, lurid, memory scarring detail. The entire day traumatised her, and my toilet-based first seizure was only the beginning of the trauma, and drama that I would go on to cause that day. 

The paramedics helped me off the bowl, and brought me into my living room, and they parked me on my sofa. I’m told I was semi-conscious, but awake enough to know my own name, the date, and day of the week, and who was currently Prime Minister. That’s what they ask you to see if you’re competent enough to make decisions about your health. 

Apparently, I could answer these three questions, over and over, though Mrs. Hippy said I was glancing at my watch for the date.  

We now know I was not even close to being competent. I was far from it, but it didn’t matter. My responses reached the required threshold of competence, which meant I was well within my rights to decline treatment, and a trip to A&E. And that is exactly what I did, and would do again, three more times. Each time, the paramedics would reluctantly accepted my decision, and depart. 

The details from here are a bit thinner, as I said Mrs. Hippy was traumatised by these events. She’s told me as much as she could, and I haven’t pushed her beyond that. 

Three more ambulance crews would be summoned, and I would decline treatment each time after correctly answering the magic questions.

Imagine having to remember that Boris Johnson is the Prime Minister to be considered sane, and competent. It’s a contradiction in terms. I know it’s not him any more. Life moves fast.

All of the paramedics asked if I drank alcohol, and were surprised when they were told I did not. I gave up drinking in 2002, so I hadn’t touched a drop in a very long time. 

Alcohol, and epilepsy are a bad combo apparently, and prolonged alcohol use can lead to seizures. In my case at least, it wasn’t at all a factor, but it’s understandable in our drinking culture that the question is asked in this sort of situation. 

I had a second seizure. Another ambulance crew turned up, and we repeated my little psycho-drama of denial, and refusal. I denied anything was wrong, and I denied having seizures, because I couldn’t recall them. And I refused treatment. I was confused, and exhausted. All I wanted to do was sleep. 

At this point, I am told the paramedics said to me if I didn’t go to hospital, I would die. Did I really want to die at home in front of my partner? I said yes, I did.  More than once. That sure sounds like me. God, I’m a jerk sometimes. Even more so when my brain is misfiring.

I had decided I wanted to die at home, rather than go to the hospital after the very first seizure in April. I knew it was irrational, but that’s how I felt. I felt hopeless, I thought everything was going to keep getting worse. Maybe I was a little right.

After the fifth seizure, I didn’t regain consciousness. The last paramedic team quickly got me aboard their ambulance, and they switched on those bright blue lights. They brought me to the Whittington A&E, in Archway. I credit them with saving my life. They deserve a namecheck, and my gratitude.

Mrs. Hippy wasn’t allowed to join me in the ambulance, nor accompany me during my time in A&E, because of Covid restrictions back then. 

I’m told I had a sixth seizure in A&E, and I was down for the long count. They started me on a strong intravenous tranquilliser, called Lorazepam to bring the seizures under control, and calm my brain. And they mixed the I/V tranqs with a strong anti-convulsant, called Levetiracetam. The brand name for Levetiracetam is Keppra, which is a lot easier to spell, and pronounce.

I was moved to a ward, it wasn’t Intensive Care, but it was one step below it. I had one-to-one nursing for over 24 hours. 

They thought my heart might stop, and had the electro-shock paddles on hand just in case. I know this because a nurse on the ward casually told my partner not to worry, that they would restart my heart if it stopped. That only made my poor, sweet Mrs. Hippy worry even more. 

Shocking my heart would have totally been against my wishes, had I been able to express them at the time. Had I been smarter, I would have put some sort of DNR order in place, as in do not resuscitate. They call it an Advance Directive here, or a living will. I really need one of these bad boys, and if I had one back then, you might not be reading this. Hey ho. I only learned about them after the fact. 

I finally regained consciousness very late on the Sunday night. It was more than 24 hours after my arrival at A&E, and around a day and a half after the first seizure in the cluster. 

That’s what SSSS actually was, and the proper name for it is Acute Repetitive Seizures (ARS) or Cluster Seizures, something else I learned about after the fact. Super, duper dangerous, and sometimes deadly.

I was really disoriented when I woke up. A nurse tried to fill me in, but I was very drowsy, and confused.  My memories of the early part of my hospital stay are thin. 

What I did know then, and still know now, is the care I received was world class, I don’t have a single negative thing to say about my stay, nor the staff. 

Even though I didn’t believe my life was worth saving, they saved it anyway. They’re goddamn angels, each and every single one of them, from the porters and cleaners, to the nurses, and doctors. And I am literally tearing up as I type this, so let’s move on, because I can’t see the stupid laptop screen.

The first thing they did when I woke up was even kinder. They informed me my partner had been in constant touch for updates on my condition. And they brought me a cordless telephone so I could ring her. 

It was sometime between midnight and 1am, so technically Monday morning. We both cried. Yes, even more tears in this sad tale, as I surprised her with my phone call. They weren’t sure when, or if I would regain consciousness. My seizures were that bad. That’s why this phone call was such a huge, and welcome surprise. 

They removed the drip after I woke up, and started me on a low dose of the Keppra in tablet form, twice daily. I’m still on it today, though my dosage has trebled since then.

I mostly slept after that, and I was soon transferred to a standard ward. Covid was still bad around this time, and I was tested for it while I was unconscious, and put on a Covid-free ward. Miraculously, I didn’t catch it while I was admitted.

Visiting wasn’t allowed on the more intensive ward, but it had recently been re-permitted on standard wards with limitations like masks.  On the Monday, my third day in hospital, Mrs. Hippy turned up for a visit. I had my eye glasses with me this time, so I was able to spot her arrival at a distance. 

I was shocked to see her, and my first thought was maybe I was still at risk of death, otherwise she wouldn’t have come. I need to put this into context. I mentioned Mrs. Hippy had been unwell for a long time, and as a result she had barely been leaving the house. Covid was a contributing factor to this, but the main reason was her overall health. 

As shocked as I was to see her, I was also thrilled. She didn’t stay long, I think that was one of the many restrictions at the time. I assured her I would be as discharged as soon as possible, and back home to continue my recovery.

As I rested, I got enough strength back that I started pestering the doctors, and nurses for my discharge. I wasn’t fully recovered, not anywhere near close, but I knew I would do better in my own environment, than in the hospital.

While I was in hospital, I had two tests, beyond normal blood work. The first was a CT scan of my head while in A&E. They did that to rule out a brain bleed, and thankfully it was all clear.

I also had an EEG, after I woke up. I do remember being transported down for it in a wheelchair, by a friendly porter on my last day in hospital. The EEG was also clear, but they weren’t looking for anything specific, or at any particular region. A closer look in a couple months would end up revealing a lot more. 

The doctors on the ward caught up to the fact that I had already been seen at another hospital, by neurologist number two, They said they were going to cancel my referral to neurologist number three. They also said they would write to neurologist number two, but if they did, I have seen no evidence of it. And thankfully, they didn’t actually cancel the appointment with neurologist number three either. 

I did convince the doctors to release me on the Tuesday, my fourth day in hospital. Other than observing me, and giving me tablets that I could just as easily take at home, I didn’t need any more care, so it wasn’t a hard sell. They needed the bed for someone else, more than I needed it by then. 

I had to stop at the hospital pharmacy to collect a prescription for more Keppra, and they wrote to my GP asking that they continue it. 

Once I had the drugs, I got a minicab via the freephone at reception, and I was on my way. I don’t think I was ever happier to be home, but the enormity of what had happened had still not sunken in.

The long road to recovery

I was wiped out when I got home, I was both physically, and mentally drained. I needed rest, and lots of it. What I went through was genuinely traumatic to my body, and brain.

I recorded my highest heart rate ever during SSSS, even higher than the previous two incidents. Other than a gap of a couple of days, when the watch battery died while I was in hospital, I have a decent record of my elevated heart rate. 

My resting heart rate stayed very high for weeks, and remained noticeably higher long after that. In a way it became a method to track my recovery as it gradually, and eventually slowed back down.

I felt weak, and I was a little unsteady from it. My entire body ached, and all I craved was as much sleep as possible. I barely had an appetite as well.

For the first couple of weeks. I didn’t do much of anything, except feel sorry for myself. 

If they offered awards for unbridled self pity, I would needed to have several acceptance speeches prepared, because I would have been victorious in multiple categories.  

I didn’t have any nausea, or vomiting initially after being discharged, but when it returned, it came back with a vengeance. It wasn’t every single day, but pretty close. And it wasn’t just limited to the morning. I still believed it was somehow related to the seizures. I just didn’t know how.

I had a third A&E visit, a couple of weeks after my hospital discharge, when the nausea, and vomiting returned worse than ever. I didn’t want to go, but NHS 111 convinced me I needed to be seen by a doctor. They sent me home with nausea tablets, and a gastroenteritis diagnosis. That’s not what I had, and not what I needed, but the nausea eventually passed on it’s own.

My biggest issue mentally was just how much I wished they hadn’t saved me. I didn’t even know I was gone, so it would have been a perfect, pain-free, frictionless death. 

With all three incidents, I experienced a sense of peaceful nothingness that is hard to describe. When you’re asleep there is some physical awareness of existing, even if your sleep is dreamless. 

I felt nothing during my seizure related black outs. It was like I didn’t exist at all. It was more peaceful than anything I had ever experienced. 

And as each incident was worse than the one before it, that sense of not existing was heightened by the extended duration of incident number three. I have a long gap in my memory, and consciousness from it. It is what I imagine being dead is like. You’re just not there any more, and you’re not anywhere else either. You’re just… Not.

I don’t know how else to describe it, but coming back each time, was like a resurrection after being knocked out of reality. I wasn’t there, and then suddenly, I was back again. Reborn. 

I don’t know if I am really doing any of this justice. It compares to the couple of times I’ve had general anaesthetics, only with even more nothingness. Does that help?

I dwelled on this a lot, why did they save me? Especially since I repeatedly made it abundantly clear, I did not wish to be saved. I couldn’t understand the lack of logic of going against my wishes. I was being one big giant asshole about it. I was being extremely selfish too. I was angry. Why was I still here? 

My first month out of hospital, is still a bit of blur. Regaining my strength was a slow process, and it surprised me how long it took. And the gaps in my memory extended beyond the actual incidents, I was having trouble recalling all sorts of things. My brain wasn’t working like it used to, it was frustrating. 

I still didn’t truly grasp how bad Super September Seizure Saturday was, and how close to death I actually came. I just sat around the house, weak, depressed, and hopeless. It was as much fun as it sounds.

Tribute to Mrs. Hippy

I’m just going pause things for a second to take a moment for you to think about my partner, who I have been calling Mrs. Hippy. 

We’ve been together for 25 years. What I put her through in 2021 is worth thinking about from her perspective.

Mrs. H found me unconscious after my first seizure. She called out to me, and I didn’t even twitch. She had to check if I was still breathing. She thought I might have been dead. 

Now imagine having to phone for an ambulance. Even if it took ten minutes, or five minutes, waiting would have seemed like an eternity. She had no idea what was wrong with me. Now imagine watching me decline treatment after that first episode. 

I declined treatment after the second incident too. She watched me do that right after witnessing me have a full-on seizure in front of her. And then she saw them whisk me away unconscious, after my second seizure that day.

And then when I returned from A&E, I was angry with her for letting them take me to hospital, and being without my glasses. She watched me do nothing for weeks after that second incident too.

And let’s not forget the nightmare that was SSSS. She watched me decline treatment repeatedly. She heard me say I wanted to die at home. And she still came to visit me in hospital, after all I’d put her through. And she took care of me when I got home. It’s understandable she doesn’t like to talk about any of this, and why she probably won’t read this piece. 

This is my tribute, to my sweet, bright, brilliant, beautiful Mrs. Hippy. She is a saint, and I don’t deserve her, while she deserves so much better. 

She saved my life, as much as the paramedics, and doctors did, even though I said didn’t wish to be saved. I owe her my life. Literally. 

Neurologist Number Three for the Win!

I saw the third neurologist at my local hospital only a few weeks after I was discharged from my brief stay there. This referral was made in August, and though they said it would be cancelled, it wasn’t.

I finally got lucky, and I was seen by a neurologist that actually listened me. I also benefitted from the fact that I’d had two more incidents since seeing neurologist number two. There was more information available as a foundation for a diagnosis, including having an eye witness to the second, and third incidents, Mrs. Hippy. 

I gave the third neurologist my full medical history. I described all three incidents with as much detail as I could manage, and I told her about the first, and second neurologist appointments.

She had already read all of my notes, the paramedic reports too. She was well across everything that transpired. I also told her about the vomiting, and nausea, and how I was convinced it was somehow connected to the seizures. 

She really listened, and paid actual attention to what I told her. It is one of the most important skills for a doctor, to listen to what the patient is telling them.

We phoned Mrs. Hippy, so she could describe what she saw. Her eye witness account included a lot of high value details, one of which, along with my on-going nausea, and vomiting, would be absolutely key to diagnosing my condition.

Specifically, one of the many details Mrs. Hippy recalled was that in between seizures at one point, I showed her my right hand, and arm, and asked her if they were doing something funny. 

Mrs. Hippy said, I said it felt like my fingers, and arm were tingling, and twitching involuntarily. This indicated to the neurologist  that whatever was happening, was happening on the right side of my brain. 

Also on the right side of the brain, inside the temporal lobe, is a region that controls nausea. The neurologist saw a pattern.

Based on all of this, the third neurologist issued a diagnosis that fit all of my symptoms, the seizures, and the nausea. She said I had Right Temporal Lobe Epilepsy, with Ictal Vomiting, and explained it was extremely rare. She said it affected 1 out 100,000 people, while epilepsy in general, was out of 100.

To put this in perspective, the United Kingdom has a population of around 67 million. That means fewer than 700 people in the entire country have what I have, give or take. It’s kind of astounding that this neurologist was able to put it all together.

“Ictal” just means related to seizures, but my neurologist explained that the nausea was actually a type of sub-clinical seizure. It was caused by the same abnormal brain activity that caused the seizures, but at a lower level, and originating in the same region of the brain.

As I said, the nausea, and vomiting were key to my diagnosis. And it is easy to see how the nausea’s relationship to the seizures might have been missed, because it is so rare.

Certainly, it wouldn’t be something that a GP would necessarily connect together. Neurology is not their specialty. They don’t have a specialty, the “G” in GP is for general.

That excuse doesn’t apply to the second neurologist I saw. He was extremely, and immediately dismissive of the vomiting. He didn’t consider it as anything more than an unrelated distraction. Even if he’d never personally seen a case of epilepsy with ictal vomiting before, there are a lot of scholarly articles written about it.

Because it is rare, temporal lobe epilepsy is considering interesting to a lot experts, so there is no lack of info about it, even online. I know this, because post diagnosis, I subsequently looked into it myself. 

Doctors aren’t perfect, they’re not gods, though some of them may wish you to believe they are. The second neurologist should have picked up on more of what was going on, but he didn’t listen to me enough. And I paid the price.

The third neurologist spent some considerable time hammering home just how serious my condition is, and she used the events of 18 September to illustrate it. 

She told me about SUDEP, which is Sudden Unexplained Death (from) Epilepsy. She also explained the concept of status epilepticus, and not fully recovering between seizures too. 

Even then, I remained in denial. Could it have really been that bad? My lack of any memory certainly contributed to this denial, but it was mainly me playing mind games with myself. I still didn’t want it to be true. 

But it was true, I really did have a brush with death that day. Eventually, I would look online for more information, but I didn’t do that for many months. The denial was strong. 

Sitting here, as I write all this, knowing all I now know, I can see that each incident was exponentially worse than the one that preceded it. It isn’t too difficult to extrapolate, that had a fourth incident occurred soon after the third, there was a really good chance it would have done me in.  

I asked the neurologist about the drug I was on, Keppra. She said if she was ever diagnosed with epilepsy, it would be her first choice, as it is the best drug available to manage my condition. I asked about cannabis based drugs, and was told they are only prescribed on the NHS for specific epilepsy conditions, that include spasticity. 

You can get cannabis oils, and flower on private prescription in the UK now, and epilepsy is one of the approved conditions. The process is complicated, and expensive. And the quality, and consistency of the products has yet to reach the same standards as the better parts of the black market, plus the customer service is said to pretty bad as well. There have recently been some media reports, that the NHS is prepping to expand their use of cannabis based medications. I would certainly consider one in future. 

At that first appointment, my neurologist told me the dose of Keppra I was on was a starter dose, meant to gradually get my body used to the drug, and wasn’t considered therapeutically useful. In other words, it wasn’t doing anything to prevent seizures.

I probably didn’t have another seizure, for the same reason the nausea didn’t return for a couple of weeks after my discharge from hospital. The massive dose of Keppra I was given intravenously, must have had some sort of hangover effect. 

I was very lucky not to seize again, but the vomiting, was back. She doubled my dosage that day, and said she would have a follow up telephone appointment with her in six months.

The third neurologist also ordered the same tests the second neurologist had requested, a CT scan, an MRI, and an EEG. I told her I had a CT scan while in A&E, several weeks before, and she was able to check those results, so I didn’t need a second one.

I waited a long time for the MRI, but I was unable to go through with it. I’m claustrophobic, yes another neurosis. I can just about manage travelling between floors on a lift, or a ride on a crowded tube.  And I have been known to get off a packed underground train, if it becomes too cramped along my route. 

It’s usually not a big deal, but I couldn’t handle the MRI. Especially not when they put a big plastic frame around my head, neck, and shoulders to keep me still. I had a mini-panic attack, and couldn’t complete the test. I spoke to my neurologist about it, and explained the only way I could go through with it would be with full sedation. She said it wasn’t worth it, and I didn’t disagree.

Turns out, the test that confirmed my diagnosis was the EEG. When I had the second one, they knew to pay particularly close attention to my right temporal lobe. And when they looked closely, they found an obvious abnormality of some sort. They couldn’t say what the cause was, perhaps it was inherited, or I was born (prematurely) with it. They did ask if I ever had any injuries to my head, but I couldn’t recall any. 

The technician that performed the test was very friendly, and chatty. She asked me a lot about my hospital stay, as she was accustom to dealing with epilepsy patients. She asked me something that I hadn’t thought about. She asked if I had been intubated. 

I learned that day, that my condition could have been even worse while I was in hospital. In addition to the possibility that my heart could have stop beating, there was a chance I could have stopped breathing on my own. 

Having learned far too much about the process of intubation, via all the Covid coverage, this freaked me out a little. The idea of being shocked with paddles was bad enough, but a breathing tube shoved into my lungs, would have been several steps way too far, and I am extremely grateful to the universe for sparing me all that. 

Finally, I had a genuine, diagnosis, confirmed by actual tests. I knew what I had, and I knew it had to be managed with medication for life.

Learning to live with it

It was a lot to take in, my worst fear was confirmed. I had the bad epilepsy. 

I was still fairly rundown, and nowhere near recovered from the incident in September. I just sat around the house, and rested for months. I didn’t have another seizure, and the vomiting was fairly rare, until around Xmas time. 

At the end of October, a few weeks after I saw my current neurologist, I had what I would call a brush with a seizure. 

My right arm, and leg felt funny, like a cross between twitching, and numbness. And I was overcome with that weird impending sense of doom. 

I thought to myself, here we go, it’s seizure time. And then, nothing. I’m not sure if it was the beginning of one, but it felt like it, and maybe the Keppra stopped it dead in its tracks.

You might be wondering why I have so many specific dates for things. The seizures were easy, there are paramedic reports that are attached to my medical notes on the NHS app. And the third neurologist asked me to keep a seizure log, so anything epilepsy related gets recorded, including nausea episodes. 

I had another one-off incident, just vomiting, and nausea, on the 19th of December. It came back again on Boxing Day, and continued until New Year’s Eve, to varying degrees. It worsened on New Year’s day, and was continuous for a couple more days. It was the worst it had ever been, but still no seizures.

I phoned my surgery when the world re-opened after the holidays, and booked a telephone appointment my usual GP. I told her about the return of the vomiting. 

My GP was acquainted with my neurologist, and offered to email her for guidance on what to do next. She suspected my medication dosage needed to be raised. She said she would phone me back, once the neurologist responded. 

I had a call back from the GP later that same day, after she heard back from my neurologist. My GP was instructed to increase my dose of Keppra, they trebled the original dose I started with, and she issued the prescription. I went and collected it from my local chemist a short time later, and started on the higher dose that night.

I know people disparage the NHS, but when it works well, it is a godsend. I felt reassured by the swift response, and I hoped the increased dose would keep the nausea at bay. It did, until March. 

In March 2022, the nausea, and vomiting returned, and it was pretty bad. Again, I phoned my GP surgery, and my usual GP wasn’t around that day, so I booked a telephone appointment with one that was available. She was excellent, and when she phoned me back, she was well across my condition. 

In my notes, my regular GP included my neurologist’s direct email address, and this GP contacted her to seek more advice. Same outcome, a quick response on the same day. I was given another drug, called Clobazam, to take on top of the Keppra, when the vomiting flared up. 

It calmed the nausea right down, after one dose. Once again, I was impressed by the fast response time, and the outcome. Since then, and I am writing this in early September 2022, I have remained nausea-free, and haven’t had to take the Clobazam again, but it’s good to know I’ve got some just in case. 

My memory was still not great, I struggled to remember things that I should know off the top of my head. Here’s an example: I don’t claim to have encyclopaedic knowledge of music, but I am pretty good with Classic Rock. Did I mention I’m a make-believe, middle-aged hippy? 

When I’d hear a classic rock song on the radio, I’d find myself singing along in my head to the lyrics, but I would struggle to name the band, or the I wouldn’t be able to recall the song’s title, or both. I found it frustrating. I still wasn’t firing on all cylinders. 

My resting heart rate was still somewhat elevated after the incident in September, and remained that way for many months. I still felt fairly hopeless, my recovery was slow. I took it all one day at a time. Isn’t that what we’re all supposed to do, anyway?

Piecing it all together

My follow-up appointment with neurologist number three was in early April 2022, and it was on the phone. It was longer than my initial appointment in October, mainly because I had so many more questions for her. 

We talked about the vomiting first, and this is where she explained that the vomiting was a form of sub-clinical seizure. The electrical activity wasn’t bad enough to cause a full on seizure, but there was enough going on to send a false nausea signal to my stomach. It was a related, electrical misfire from the same region of the brain. 

The Clobazam was a top-up medication, that in theory, should shut that aberrant electrical signal down. She said to think of it as a breakthrough symptom, because the Keppra was, for the most part, completely managing my condition.

I had remembered the brain blips I was having since 2019, which I had mentioned in October, but not in any great detail. As I recalled them, I tried to put them within the context of my epilepsy. Most telling is that they ceased after I began taking the epilepsy drug. I wondered if they could be related, and perhaps mini-seizures.

I asked her about it. Could they have been an early warning sign. She didn’t think they were mini-seizures, but didn’t rule it out completely. Her best guess was that they were micro-sleeps, that my brain was spontaneously falling briefly asleep for just a few moments. Whatever they were, she agreed they were an early sign that something was wrong. 

She asked if I’d ever worked nights.

I was the Prince of Darkness, and the King of Nights, and I’d worked overnights on and off since 1985, I then mostly only worked overnight from around 1994, with the occasional period of dayshifts. And from 2004 to 2019, for fifteen full years, I worked them exclusively, and didn’t do a single day. So yes, I certainly did work nights.

My neurologist told me I damaged my brain patterns by disrupting my sleep for such a prolonged period of time. I was dangerously unrested, and this likely contributed to the onset of seizures. She also said it was why my memory hadn’t improved after the trauma of SSSS. 

How did my neurologist know so much about night work, and sleep deprivation? She told me she was the author of a study that examined the neurological effects of working nights on junior doctors. What she found, was that night working was incredibly detrimental, and shouldn’t be undertaken for extended periods of time. 

Hands up, again. Yet another thing that is totally on me. I did have bosses at various points in my career offer, or suggest I stop working nights. Some were concerned about my health, others were more concerned about their own liability, but I was mostly too useful at night, so no one pushed it. Least of all me. I did the shifts that no one else wanted to do, so I expect there was a certain amount of relief, whenever I declined the offer of days. 

Why did I prefer nights? Two words: Chronic depression. 

Nights were easier, there were no bosses around. There wasn’t anyone around.  Overnight staff levels, wherever I worked, were always a fraction of the dayshift. 

But most of all, I was the most senior person awake, no one else could overrule me. I enjoyed being self-reliant, and walking that high-wire every night without a net. I got a buzz out of what I used to do. It was demanding, the hours were long, but I loved doing it.

I know I will never work nights again. The neurologist told me it would be a huge mistake for me to ever do another nightshift. As advice goes, it’s better late than never I guess, but the damage was done.

Back when I worked nights, I thought I was a sleep champion. I never struggled to sleep during the day. I had a routine when I worked, that I was pretty good about keeping to, and I managed probably 6 hours most days that I worked. 

It wasn’t so much the actual nights, as the back and forth, between days that hits you. It was the repeated disruption that did the damage to my sleep patterns, and caused me to be chronically under-rested. 

When those changes at work that I mentioned earlier were brought in, the ones I thought contributed to my breakdown, my work hours increased by 1.5 hours. And where did those hours come from? My sleep.

It was the first substantive change to my work/life balance in over a decade. That was about a year before the brain blips began. 

I can’t say for sure losing 90 minutes of sleep on the days when I worked gave me the brain blips, but I don’t think it is a stretch at this point, to say that it is likely a significant contributing factor. 

I finally asked the biggest question, I asked if the epilepsy had been behind my breakdown. I hadn’t really totally connected the brain blips together with the depression, even though they both began around the exact same time. Until this moment. I saw my breakdown as a personal failing, a weakness of character, but maybe my neurological issues had something to do with it?

She said it was very, very possible. There is a strong bi-lateral link between epilepsy, and depression. They both make each other worse. Depression can increase epileptic activity in the brain, and that unusual activity in the brain can exacerbate depression. I let that info sink in, and I knew I had some serious googling to do. 

In truth, I didn’t do much research online right after the incident in September. It was many months before I did. 

I was too afraid to look, I didn’t want to know how bad it was, or how close to death I was. I didn’t actually look deeper into the details about SUDEP, and status epilepticus until long after my diagnosis. Ignorance is indeed truly bliss, but I was more motivated now. 

The pieces started falling into place. The brain blips that started sometime in late 2018, along with my massive increase in depression, were early symptoms of the of the beginning of the epilepsy. The aberrant brain activity had been going on for years, and slowly, gradually worsening. Suddenly it all began to make sense. 

Recovery at last

In addition to tracking my heart rate, from September 2020, my Apple Watch began to track my sleep. It is rudimentary, and not perfect, but it works well enough to spot patterns. You could see after each seizure incident, my sleep decreased, and hadn’t returned to where it was before the seizures started. 

The third neurologist said my memory issues, and general overall poor state of health, was down to my lack of decent rest. She had an idea to reset my brain from the decades of poor sleep, and sleep disruption. She suggested a three month course of Melatonin.

I began the Melatonin in May 2022, and I took it for three months, as prescribed just before bedtime. The effects were subtle, it didn’t pack the punch of a proper sleeping pill, like Ambien, or Zopiclone. 

It took a few weeks before I started to see the effects reflected back in my sleep data. Gradually, the duration of my sleep increased, and it was less broken. I was sleeping for longer periods, and not waking up repeatedly for old man peeing in the middle of the night nearly as often. 

When I finished the Melatonin, I was getting some of the best sleep I’d had in years. The only downside is the end of the prescription coincided with the hottest day of year, and technically the hottest day on record in London, ever. Even with that, my sleep has improved, and for the most part, that continues to be the case.

The first improvement I noticed, is I felt stronger. Not just physically, but mentally as well. My edge was returning, as was my memory. I felt sharp again. When a classic rock song comes on the radio now, 99 out of 100 times, I can name the artist, and the song title. It was tangible. 

After feeling like shit every day for years, and normalising it, it has been weird to feel legitimately good again for a change. There was a certain period where feeling good, and having my mental faculties return, had to bed in a bit. It was an adjustment, but a positive one. I wasn’t used to it at all. 

Most noticeably after the Melatonin, my heart rate returned to levels lower than before the first seizure. It was the clearest, most visible evidence of my recovery. I was finally feeling physically good.

My journey of self-discovery was given a massive boost as my recall abilities returned. In addition to putting my brain blips, and depression into the context of my epilepsy, I recalled the incident with my car, way back in late 2018. It was actually in October 2018, I just searched through some old emails to confirm the date.

Do you even remember me mentioning a weird incident with my car back in 2018? It was like a million words ago, so you are forgiven for forgetting it is where this story started. Scroll back up to the top, if you don’t believe me.

I had two flat tyres after deviating from my normal route into central London while driving to work. I had no idea how it happened, and I still don’t. 

I recently asked a couple good friends, who are also former colleagues that I worked with at the time, if they recalled they incident. They did. Both confirmed what I remembered, that I had no explanation how it happened. They thought it was strange too. 

At the time, the car incident freaked me out enough, that I stopped driving to work. I practically never drove again after this. It wasn’t a conscious decision, I don’t remember saying to myself, “that’s it, no more driving”. It was more organic than that, I just started taking an Uber into the office, and the tube home in the morning. I expect it was lucky I did, because I noticed the brain blips not long after this.

My working theory, which I’ve yet to discuss with my GP, nor my neurologist, is that this car incident was the first evidence something was wrong with my brain. It may very well have been the very first brain blip I ever had. 

Blanking out would explain why I didn’t understand, or recall how I deviated from my route, and how my two front tyres ended up flat. It seems like a very reasonable explanation to me. And I didn’t put all this together until very recently.

If the documented starting point of these neurological issues really is the car incident in October 2018, then I have been dealing with this for nearly four years. 

And it’s cost me so much. Even though I stopped driving off my own back, I legally lost my driving privileges after the first suspected seizure. I gave up my job, I lost lots of my work friends. I’ve lost a lot of time, and I’ve lost memories too. And for the longest time, I lost myself. 

As bad as the seizures were, I didn’t actually experience the two worst ones. I have no memory of them. But I did experience my breakdown, every second of it. Of the entire period of the last few years, those six months, when I was actively planning my suicide, were the worst. 

I should have learned my lesson when the doctor connected my thyroid issues, to my mood swings, but it has taken me a while. A dramatic change to my baseline of depression, is an indication of something physiological. But I didn’t, and when my depression spiralled in 2019, it should have been a clue something more serious was wrong with me. The increased depression was a symptom of something much larger, and more significant, but how was I to know that at the time?

Same with the brain blips, and again it is my fault. When that first neurologist in September 2019 told me he thought the brain blips were related to my blood pressure meds, he suggested I ask for a re-referral if they didn’t clear up. I didn’t, and that’s on me, too. I honestly don’t think it would have made a difference, whatever tests he might have done probably wouldn’t have picked up on the epilepsy. I can’t say that for sure, and because of my inaction at the time, we will never know.

I normalise things, if they aren’t easy to solve. And I think I’ve established, beyond a shadow of a doubt, that I am hard to diagnose. 

My health issues always end up being complex, and not obvious. Back pain from a thyroid issue that I had for years? Check.  A stomach problem that was misdiagnosed for years? Double check. And now, a complex case of a rare form of epilepsy that caused a massive breakdown. They do say variety is the spice of life. along with a lot of other cliché bullshit. 

For the first time in nearly four years, I feel like I am myself again. I feel like I am back, and better than ever. A friend of mine, when I was recently in touch with him, told me I sounded like I have my mojo back. I think he’s right. I have some optimism, a word I haven’t used in a sentence, in many years.

I want to work again. I’ve wanted to for a while, but I finally feel like it is possible, and that I’m up to it, physically, and mentally. 

Before I got sick, my plan was to work until I was 70. I used to enjoy my job, and the company of my colleagues. Working nights was as probably as close as I ever got to having a social life in middle age. 

I have so many ideas, for so many projects, and I wouldn’t mind seeing the inside of a newsroom again. More than wouldn’t mind, I’ve been craving the dopamine hit. And I’ve been working on a proposal for something that I am going to spend the next couple of months, trying to get commissioned. 

It’s nearly been a year since Super September Seizure Saturday, that is why I’ve written, and published this now. I have remained seizure free, since I began the medication. On the 18th of September 2022, it will be an entire year. 

I have mixed feelings about the anniversary, because inherently, it marks one of the very worst days of my life, and Mrs. Hippy’s too. But I temper that sadness with hope. I hope that my doctor will agree to me having my driving privileges restored. I don’t know if I ever wish to drive again. I don’t even have a car any more, I got rid of it, but it would be nice to have the option. 

That’s the DVLA’s benchmark, a year seizure-free. But more than that, I am hoping that hitting the one year mark, will mean I finally accept that the seizures are well and truly under control. 

Even today, I still worry about my next seizure. I should be reassured, even the ictal vomiting seems under control now, but there’s a tiny bit of doubt, that remains.

I’m not going to allow my doubts to rule my life any more. I’ve decided I want to be part of the world again, and I just have to trust that the Keppra has me covered. Want to meet in central London for a coffee? I am so there.

I know I was burned once, when I counted down the 90 days after my first seizure, and proclaimed myself clear, so I appreciate the risk of pegging my health to another date on the calendar. But this time, it feels different. I feel different. Like James Brown used to sing, “I feel good!” The difference is, I never really knew if I ever would, again. But here I am. 

I’m going to be 60 years old in January. I didn’t think I’d make 40, and when I made 40, I didn’t think I’d make 50. Now that I am staring 60 squarely in the face, I think I am doing OK. 

I know it’s still all downhill from here, that’s how ageing works, but now that I’m back, I want to be a productive member of society again. 

When I left my job, in 2020, I said my goal in life now, was to have fun, and do good. I’ve had more than a few distractions since then, but the sentiment, and desire have never been stronger. 

This is the conclusion of a journey of self discovery that began after my first seizure. It also began as a joke, but somehow it became real. I’ve never known myself as well as I do now. Socrates would be so proud of me. 

By writing all this up, I feel like I can finally put my health issues to bed, and I can now really concentrate on living the rest of my life, as best I can.

If you’ve made it this far, well done you!. It wasn’t easy telling this story, thank you for reading it.

An Unexpected Twist At the End

While I was putting the finishing touches on this piece, on Wednesday 14th September, I had a fourth incident. If you follow me on Twitter, you may even already know this. This is a brand new, unplanned section. The previous section was the end I had planned. My brain had other ideas. Clearly.

Every word above this section was written before I had a new seizure. Everything from here, I am writing on Friday, 16th September, and Saturday the 17th too. I needed Thursday to deal with the fallout from this unexpected twist at the end of this story.

For starters, this new ending is bullshit, and just doesn’t fit with everything that has preceded it. This was meant to be an uplifting tale of triumph in the face of adversity. I had been doing so much better!

I could go back, and re-contextualise this entire piece, but I want it to stand as it is with this brief addendum. It’s not fiction, it’s real life. Real life is messy, maybe mine a little more than most at the moment. 

I have two versions of what happened on Wednesday to share with you. The first one, is how I thought it played out for two entire days, before learning the truth. This is what I initially thought happened, when I woke up. 

I believed I had gotten up from my desk, having stopped working on this piece, on my laptop, and I sat down on my sofa to take a break. I woke up around an hour later, thinking I had somehow drifted off to sleep. I didn’t recall feeling drowsy, but I assumed that’s what happened. 

I got up to grab my TV remote from the charging cradle, and when I did, I noticed all of my muscles were sore. That confused me. I then realised my tongue was swollen, and bitten. These were clues, and I was putting it together. 

I checked my Apple Watch, and my heart rate briefly went way up to similar levels of incident number one, back in April 2021. It also recorded one minute of exercise, while I thought I was sleeping on the sofa.

I’d had another seizure. Sore muscles, chewed up tongue, plus the watch data, all confirmed it. I was still a bit confused, and disoriented, but I was fairly certain of my deductions. I felt wrung out.

I found out two days later, that’s not what really happened. Not even close. I did have a seizure, that part I got right, but it didn’t happen on the sofa.

When I went into the kitchen to make some lunch on Friday, I discovered Wednesday’s lunch still in the air fryer, two days later. I had to bin it, but it triggered a couple of memories.

I remembered, when I stopped writing on Wednesday, I didn’t actually sit down on the sofa. I went into the kitchen to heat up a sandwich. While I was doing it, I had that weird wave of sadness, and doom. I’d had it a handful of times over the last year, but not in a long while, and it went nowhere. I just ignored it, and chuckled to myself about the coincidence of it returning so soon after writing about it.  

Even though I was writing about auras only a couple of days ago, I ignored the one I had in the kitchen on Wednesday. The last few times I did experience it, I didn’t go on to have a seizure. I now know better. 

Finding the two day old sandwich led me to doubt my reconstruction of the incident. I got curious, so I looked at the recordings on my cameras. Yes, plural. I have a second camera in my kitchen, aimed at my back door, but it also covers the area around my sink. I live in a high crime area, cameras are cheap, and they come in handy, especially when your body is on auto-pilot.

I thought I had the seizure while on the sofa, as that is the last place I recalled being, and where I regained consciousness. I was really, really wrong. 

I think it was fairly soon after I experienced the waves of doom, that this happened. I am standing very still, facing the sink, not moving. The air fryer alert beeps, and I don’t flinch, or react. It goes on for a bit, and stops. I think the timer was ending, and it shut off not soon after this. Lucky for the timer, or I could have started a fire. 

I suddenly spin around while looking up, and pointing at the ceiling, and I let out the most preternatural crying noise. The expression on my face looks terrified. This is the start of the seizure. I am very stiff, but I don’t fall hard. I sort of slowly, drop myself down as my muscles do something like a hydraulic piston. It explains why I had no contact injuries. I didn’t fall hard. 

I am not going to post the video, it is way too upsetting, and distressing. I’m sorry I watched it, but I needed to know what really happened.  

From here the video is useless for a while as I am floor, and out of frame. I am guessing this is when I had the convulsions, or tensed up, or both. After a couple of minutes, you see my hand start to reach up, to grab hold of the worktop surface, and the door of a cupboard, to try to get up. It takes me ages, but I eventually stand. I don’t remember doing any of this. While trying to get up, I knock many things off the counter top surface. 

I pace around between my kitchen, and my living room, and I sit on the sofa, and get back up, four or five times. I’m visibly restless, and not fully aware. Eventually, I pick up the TV remote. I remember doing this, so I am able to judge from the recordings that I lost around 30-40 minutes of memory, give or take. 

I don’t know if I can describe what it’s like to see your body doing things that you didn’t consciously do. I don’t remember the seizure, I don’t recall falling, even slowly. I don’t remember getting up either, nor walking around, and sitting down on the sofa. I thought the entire event transpired on the sofa. What really confused me is I had no scrapes, bruising or sprains this time. 

When I am walking around, my face is slack, and expressionless. The lights were on, but I was very much not home for most of it. 

Finding my two day old lunch is what inspired me to look at the video, but I was really checking, was to see if I had more than one seizure. I think I only had the one. 

I did not expect to discover that one seizure happened in my kitchen. Before I got my memory back, you see me on the recording in the kitchen, picking up all the stuff I knocked over, and putting it away.

I find this so bizarre. I have no memory of picking the stuff up. When my brain starting working again, there was no kitchen mess. So there was nothing to alert me to where the seizure actually happened, until I found that sandwich in the air fryer two days later.  I had already tidied up all the clues on autopilot before regaining all of my faculties.

Mrs. Hippy said this to me last year. After seeing me between seizures, talking, and functioning, but behaving bizarrely, she could understand why in the olden days, people with epilepsy ended up sectioned. Having watched this video, I now know what she means.

I can’t believe I had my first seizure in 361 days. I can’t believe I had another seizure four days before my one year anniversary, and three days before I planned on publishing this piece that you are reading right now meant to celebrate it. If the universe has a sense of humour, then this my friends, is one of its better punchlines. 

It was only a few pages ago I told you about how I was burned by another countdown, the 90 days after my very first seizure. Low, and behold, I’ve just been burned again by this one. I got the silly one year thing into my thick skull, and look where it got it me. That said, I very nearly made it. It’s what the doctors told me last year, make a year, drive again. I let it take on significance, so my fault yet again.

I knew I was tempting fate by writing this piece in advance of the one-year anniversary. I laughed at my worry that I could be jinxing myself. I don’t believe in jinxes, but I do believe in coincidences. They happen all the time. This is a coincidence, and I am not reading anything more into it than that.

Weirdly, this has been the easiest seizure I’ve had so far, and thankfully Mrs. Hippy was resting when it happened, and didn’t witness it. I had to tell her about it. She’s worried about me again. Or still. Or both. 

Why do I say it was easy, compared to the previous? Other than sore, aching muscles, and some injuries to my tongue, I am otherwise OK. I didn’t fall down, I didn’t break anything, and I think I only had one seizure. Also, I am not feeling deeply depressed about it. Once I got over the initial surprise, I have  been uncharacteristically level headed. I’ve even been able to finish this off and post it as planned.

Mainly, I didn’t feel like I died, or that I was resurrected. I thought I was just waking up from an unexpected nap, when I first opened my eyes. 

I suppose I shouldn’t be surprised I had another seizure. What should surprise me is that it took as long as it did. I went four days shy of an entire year. That should still be celebrated, shouldn’t it?

I can’t say I feel as keen to work, or to meet anyone for coffee in central London, anytime soon, but I am going to try not to let this slow me down too much. 

And I didn’t ignore it this time, either. I leapt into action, and spoke to one of my GPs on Thursday. Not my usual one, but one I have spoken to before, and she was wonderful. She consulted with a different neurologist from my usual clinic at the hospital, and they decided to raise my Keppra dose immediately. And it will go up even higher in a fortnight. I knew I wasn’t on the max dose of my epilepsy medication, but I didn’t realise it was still considered on the low side. 

Once again, the NHS came through for me quickly. I guess it helps having a condition that is potentially fatal, and at the same time treatable.

I collected the new strength tablets on Friday morning, by myself. Don’t get too excited, my chemist is a five minute walk away, but I felt it was important that I do it for myself. I don’t want to allow this to mess with the good place I’m in mentally. Ultimately, I may not have a choice, but so far, I am not a depressive wreck again. 

My muscles are still stiff, and achy. When I convulse, they contract repeatedly, tensing up, over and over again. My Apple Watch recorded around 1 minute of exercise during the hour I lost, so my assumption is that is about the duration of my seizure. My watch also recorded a very high heart rate, but it has almost come back down to where it was before the new seizure. 

I’ve bounced back fairly quickly. Mrs. Hippy thinks so too. I still seem sharp, I’m not overwhelmed with sadness either. Like I said, my complaints are physical, and should heal quickly.

My one-year seizure anniversary is now meaningless, and a new countdown has begun. Only 361 more days to make a year being seizure-free on September 14th, 2023. Or I could just accept I am never going to drive again, and end these stupid countdowns. They haven’t done me much good so far, have they?

Instead, I just need to admit to myself that I could have another seizure at any time, and that was true for the last year too. Who knows why I had one this week? I don’t have a known trigger. Even with all the medication in the world, the fact is my brain may have other ideas. 

This isn’t the ending I had planned, but it must be the ending I deserve, only because it is true. I fool myself a lot. We all do. I wanted to believe it was under control, but just believing isn’t enough.

So here I am am, still learning about my condition. I thought writing all this would draw a line under it. It didn’t. Epilepsy will be with me for life, and I’m still learning to live with it even today. 

Sorry I couldn’t give you the happy ending to this story that I hoped for, but my story isn’t over just yet. I haven’t given up. If anything, I feel more determined to do something with whatever time I have left. I’m not going to let one more seizure stop me. I still want to do good, and have fun. So that’s what I’m going to do. 

Random Extra Thoughts

The second neurologist – Remember him? He’s the one that told me he didn’t think I had a seizure after the first incident. I wrote to him after I counted down his 90 days of being seizure free with my “good news” letter. 

After that, I had an automated text reminder for my follow up appointment. That text allowed me to cancel the appointment with a texted reply. I received an automated discharge letter in response to the text, but nothing from the doctor directly. 

Neurologist number two did eventually leave me a long rambling voicemail in June of this year, about 10 months after I wrote to him. He said he found my letter in a pile of papers on his desk, and felt bad for not replying. He said he hoped I was OK, and if I needed to speak to him, to call his office.

Was he being genuinely contrite, or was this an ass-covering exercise? He sounded a bit sheepish, and embarrassed. 

NHS records are digital, and comprehensive. There’s a better than average chance he pulled mine up, when he found my letter. He would have seen the ambulance reports, hospital letters, and my current neurologist’s letters, as well as a list of my current prescribed drugs that includes two for epilepsy. That makes sense, doesn’t it, that he would have looked me up? It’s common sense, and I think that explains the weird voicemail message. 

I didn’t phone him back. Not because I am angry with him, not at all. I just didn’t see the point. I’m getting good care now, from my current neurologist, and that’s all that really matters. 

My medical history – I didn’t list every single thing that’s ever been wrong with me, it only seems that way. I only told you about stuff that was relevant. 

For instance, I caught Chicken Pox for the very first time at at age 32. What’s that got to do with anything? Exactly! 

I finally had my tonsils removed at age 25, and I had a really bad time with it. I had repeat bouts of chronic tonsillitis over many years, and which meant my tonsils were scarred up like an old man’s. It hurt a lot, but how does that relate to my epilepsy? It doesn’t, that’s why it’s down here. 

I didn’t list every cold, or flu I ever caught either. I tried to stick strictly to info that was connected, and I tried not to digress, or deviate too much from the story I wanted to share with you.

Autism – I didn’t know where to slot this in, so it’s down here. I was reading an article about autism online one day last year, and the description of it, sounded like me. So I took some online autism assessment tests, and discovered I am on the spectrum. I’d never considered it before. 

On a scale of one to ten, with eight through ten being full-on autism, I scored a seven on several tests, which makes me borderline. I wasn’t surprised to discover I was neurodivergent. What surprised me was how long it took me to work it out. 

Turns out autism is associated with epilepsy. Around a third of people with autism have epilepsy. Depression is common too. All of it is related somehow. My own brain hates me.

I asked my GP about autism, she said she hadn’t picked up on any clues. I expect that I probably learned how to hide it, like I learned how to the hide the signs of depression. 

You, my dear reader – Yes, you. If you really made it this far, and finished my totally self-indulgent, oversharing, health related opus, well done you! You are truly an empathetic, compassionate individual, with excellent taste in prose.

UPDATE: EVERYTHING HAS NOW BEEN CLAIMED As I don’t think many will make it all the way to the end, I have a special reward for you.

The first three people to tweet me at @nthlondonhippy with the hashtag #hippyhealthhooray will receive an autographed copy of my book, “Personal Use”, along with a limited edition, Personal Use mug. Tweeting me is OK, isn’t it? It’s not like I am asking for you to take selfies in a chicken suit, or something. 

Why only three winners? Two reasons: One, I only have 3 mugs left. And secondly, I doubt three people will read all this. I’d like to be wrong, but come on, it’s long, it’s niche, and it is self indulgent AF. 

If I really do give away three mugs, and books, I will update this note to reflect that the offer no longer applies. So if you’re reading this, what are you waiting for? Tweet me! UPDATE: EVERYTHING HAS NOW BEEN CLAIMED

Terms – They’re simple, you will need to provide me with your name, and a postal address via DM, so I can send you the book, and mug. 

And, finally – In case you have any doubts, I wrote this because my writing is therapy for me. It was a story I felt I needed to tell, to get out of my system, and move on. Only I can’t move on, because I had another seizure before I finished writing it. So expect me to keep boring you about my epilepsy for a while yet. 

If you’ve enjoyed reading this, or learned something from it, that is a worthy bonus. I learned loads, and I’m still learning about myself, and my weird brain condition. 

Doug – the northlondonhippy is a writer, and journalist (lapsed), with over 35 years of experience in the media. Doug began his career at MTV in NYC in the mid 1980s. Since then, he’s worked for Reuters TV, Associated Press Television News, and BBC News. He is also the author of “Personal Use by the northlondonhippy”. Doug tweets as @nthlondonhippy.