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?