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The Final Piece of the Puzzle

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

By Doug – the northlondonhippy

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

Intro

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

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

The Backstory

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

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

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

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

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

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

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

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

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

Learning to live with it

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

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

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

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

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

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

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

The Revelation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real. 

Doug is also the author of “Personal Use by the northlondonhippy.”   “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!

You can also find Doug –  the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.

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

A hippy health update

the hippy
My old logo

I’m still alive. Yep, I’m still leading with that.

It’s been three weeks since I blacked out, and collapsed at home with a suspected seizure. My injuries are healed, and I am feeling better. I am still worried it will happen again. Terrified actually.

My referral to the first seizure clinic at UCH was rejected. This is a big setback. The reason is silly, they said I didn’t live in their catchment area. My GP and I chose UCH because I had been seen by their neurology department before, on what may or may not be a related issue, about a year and a half ago. So I was in their catchment area then, and I believe that continues to be true today. My referral should not have been rejected. Hey ho. I’m waiting for another referral to a different clinic. In the meantime, I had a scary-assed, probably neurologically related episode 21 days ago, and have yet to be assessed by a specialist. That seems less than ideal to me. Suboptimal even. 

I have no memory of what happened, just the events leading up to it. I woke up around 10am, and I felt a bit off. I skipped my customary morning coffee, which is unusual. I had a supermarket delivery around 11:15am, and I remember struggling to put everything away. I threw up, twice, quite violently, my stomach expelled what little was in there. I recall feeling extremely unwell, and agitated. The last thing I remember, is thinking something was seriously wrong with me, and it wasn’t a heart attack, because I had no chest pain. I sat down on my sofa, and told myself to calm down. From there, I’m blank.

The next thing I remember is being really groggy, sitting on my sofa, with a paramedic putting ECG pads on my chest. I was very confused, it seemed like a weird, vivid dream. The two paramedics, and Mrs. Hippy explained to me that I was face down on the floor when I was found, and awake, but unable to speak or get up. My partner phoned for an ambulance, and they helped me on to the sofa. The paramedics wanted to take me to hospital, but I refused. They mostly ruled out a heart attack, or a stroke, but they said I should be checked over by a doctor. I didn’t go out of fear of Covid, but from what I have learned since, it is unlikely they would have been able to diagnose the cause anyway. Even after all of that, my virus dodging ways didn’t let me down. 

I stayed on the sofa and dozed on and off for a day, questioning my partner when I could. I was lethargic, and sleepy. I had knocked quite a bit over, and broke a couple things in the living room. As I became more awake, I noticed that I was covered in injuries, literally from head to toe. Here’s a complete list:

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

Tongue – back left 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, and a deep scrape

Left 2nd toe scraped, bruised, and broken.

I was a mess, but thankfully nearly all of that is healed. My right knee may have some permanent damage, but it is mostly pain free if I am careful. 

I have been a chronic depressive for many decades, but this episode has sent my depression into the stratosphere, shifted it into overdrive, and put it on steroids. All I think about is death. While I don’t think I nearly died or anything, it still feels like a near death experience. I have a massive gap in my memory. Its like I was dead, and I came back to life.

I have a security camera in my living room, a holdover from my old nightshift days. It recorded the entire incident. That makes the absence of memory even more disturbing, because there is a visual record of what happened. I get up and walk over to my desk, and I sit down at my laptop. After a short time, I fall out of the chair, and the chair goes flying across the room. I’m on the floor, on my back, floundering around. I have not timed it, but I am down there for many minutes. I don’t know if I am convulsing, but I might be. 

After a while, and still on my back, I manage to get into the middle of the room, where I roll around some more. Eventually, I manage to stand, but I am clearly very wobbly and unstable. My face looks blank, and droopy, like I am semi conscious. I stand for a moment, supporting myself against a wall, then I take a couple of steps and fall toward, flat on my face, in the opposite corner, where I manage to tug the security camera power cable, rendering the rest of the footage a bit useless. And that’s the spot where Mrs. Hippy found me.

The whole thing is surreal. I have no history of anything like this, though there is epilepsy in my family. My mother’s sister had it, and I think some of my cousins may have as well. It could also be a tumour, I guess. Whatever possibility I come up with, is depressing and scary. 

There’s a big part of me that’s ready to give up, and let go. I don’t want to deal with a new health issue, on top of my pre-existing health issues. I’m tired of it all, and bored with it too. I don’t enjoy life enjoy enough to put up with any of this shit. Why continue if every day is miserable, and bound to get worse? That’s a damn good question. 

Depression in overdrive, remember? How much of this is clear thinking, and how much of it is my depression? Depression is a vicious circle of self amplification of the desire to not exist. The more depressed I am, the more I wish to not be. How much more am I expected to endure? At what point can I quit?

Writing is therapy for me. Please keep that in mind.

I’ve been toying with the idea of a one way trip to Switzerland. If I’m going to do this, I should do it with my head held high. I have always advocated euthanasia as an option for the terminally ill. Is depression a terminal illness? What if it is combined with a handful of physical, and now potentially neurological afflictions as well? Can I still get the good euthanasia drugs? I don’t know the answer, but I am becoming increasingly tempted to find out. 

I came really close to self-euthanasia 2 years ago, but I managed to turn things around. And for what? To give up my job, and come up with a viable plan for the future, only to have a stupid pandemic come along and completely disrupt those plans. 

Then I spent a year hiding from a virus, and again, for what? To black out and collapse just as things were starting to open up again. Now, I live in constant fear I will black out again, and I still don’t know what caused it. The last couple of years have sucked for me, and spoiler alert, it seems really likely it’s going to just keep getting worse. Shouldn’t I just throw in the towel?

Life isn’t a gift, it is a curse. Whatever happiness and joy anyone experiences, it is exponentially outweighed by the overwhelming amount of suffering, pain, and loss that every living creature is forced to endure. The only way to avoid all this pain, and ultimately death, is to not be born in the first place. I wish my parents didn’t have me. I would have been happy to never exist. But a couple of people had unprotected sex back in 1962, and now I have to clean up their mess. Me, I’m their mess.

I was born 6 weeks prematurely in the early 1960s. It might not sound like much now, but back in the olden days, I was a fucking miracle baby. I spent the first month of my life in an incubator. I bet there’s a psychological impact to that, as I was probably barely touched, or held for the first 4 weeks of my tiny little life. 

I’ve had health problems since then, that are all connected to my premature birth. As a child, as a teenager, and as an adult, I have had health issues that are a direct result of not developing enough in the womb. Chances are I wasn’t viable, and I should have been allowed to die, instead of being a miracle of modern medicine. 

When I was 13, I nearly died. I had various incorrect diagnoses, before they settled on one. And then that one was proved incorrect a few years later, but it was close. I spent another month in the hospital that time. I still take medication for that issue, some 45 years later. I was born with it. No mystery, it’s called a hiatus hernia, it’s a stomach thing. It’s chronic heartburn with a physiological cause. They offered me surgery once, but they said 50/50 it would make it better or worse. I didn’t like those odds, so we settled on a daily pill. 

Whatever happened to me three weeks ago, had a profound impact on my mental state. I wasn’t in a great place before this, but I was managing to muddle ahead, and isn’t that the best many of us can do anyway? I was mostly OK. I was getting by, and getting on.  

Since the incident, and all of my existential angst has erupted like a volcano of death, and every day since my collapse just seems unnecessary. I don’t see how I can be helped, except to get to Switzerland. If I go, I will live-tweet the entire trip, from the airport to the bitter end. It will be a good story, with no possibility of a sequel. 

I’m just being honest. I literally have nothing to gain, or lose from being honest. My life feels over, only my corpse is still walking around because no one has told it to lie down. Dead man walking, isn’t that the phrase? That’s how I feel. It’s not a mid life crisis, it’s an end of life crisis.

Is this really the end of my life? Sure as shit feels like it.  Is it my depression or am I clear sighted? Why not both?

After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press, and Reuters, and 15 years as an overnight duty news editor for BBC News, Doug – the northlondonhippy is now a full time writer, hippy, and drug law reform campaigner. 

Doug is also the author of “Personal Use by the northlondonhippy.”  “Personal Use” chronicles Doug’s first 35 years of drug use, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!

Doug’s next book, “High Hopes” should have been published by now, but it is hard to write a book about remaining optimistic in the face of adversity, during a global pandemic. Try it yourself!

For the last year, Doug has spent most of his time hiding away from a killer virus. Bet many of you have too. 

You can find Doug –  the northlondonhippy on Twitter: @nthlondonhippy, but possibly for a limited time only.