Sogger’s Blog

It’s been a while since I wrote about epilepsy which seems remiss given that this is the reason I created this blog in the first place. I want to give you an update before a visit to the neurologist later this week so you can see what a lengthy process it is just trying to get the dose right, and the implications of not doing getting it right.

I last went to see him 2 months ago armed with the results of a brain scan, a bad reaction to the generic version of Lamictal and a disappointing reaction to the last random mix of medication (do you sense a hint of resignation?). He added a new tablet into the mix this time: Tegretol. He started me off on 200mg a day, with a prescription for 400mg if it didn’t work out.

It seemed a god time to start a new medication because the following week we were off on holiday for a week and I would not have to worry about serious side-effects happening in front of my colleagues (collapsing, that sort of thing) and the awkwardness that would ensue. My pharmacist was worried about me though (that’s a positive side-effect of constant pill-taking - you get to build relationships in unlikely places), suggesting that the thin air in the mountains might be a problem for someone like me (I’ve never seen anything on the web about people suffering from increased seizures when at altitude. That said, I haven’t read many success stories of the type, “Epilepsy Sufferer Conquers Everest”).

So off we went skiing, armed with sunscreen and a shiny new collection of pills. All was fine (apart from me falling over and ending up in hospital for X-rays). The week after, and back at work, it was back to the old routine: stressful meetings followed by seizures, lasting from a few seconds to a few minutes (the seizures, not the meetings unfortunately), endured in private or endured by my wife who generally has to talk me through it. After a seizure a day (”keeps the doctor away”…err, no, that’s not right), I decided to up it to 400mg a day. “Ah, I told you so - mountains and epilepsy don’t mix”, nodded the pharmacist, sagely but incorrectly.

That did the trick for the weekend - no seizures, but an inconclusive result, given that I wasn’t at work, and playing football with the kids has never been a seizure trigger (for me). But wait a minute what’s this (apart from beginning a sentence with a preposition?)…those blotches on your fingers are getting quite widespread and are very, very itchy, as are your back and legs. Now, my fingers are extremely painful and the effect seem to correspond closely to the side-effect described as “cutaneous eruptions”, even if the list of possible side-effects, as for most epilepsy medication, is 2 pages long. And my legs are no longer itching: they are extremely painful given that I have scratched them so much that they are bleeding.

These are mere side-effects, the main point is that they stop the seizures, right? Well yes, that’s the idea. Except, well, no, they haven’t. They seem in the short term to have stopped the seizures I was having at work that I put down to stress, but, in the meantime I have taken to cycling to and from work, and, every night last week, at the same point on the route home, I have had my often interesting and not always unpleasant jamais vu seizures. For those that don’t know, jamais vu is the sensation of feeling that you are somewhere new even when you are somewhere you know intimately. For example, in the past, I have had this sensation while trying to find my way back to the bedroom from the bathroom (luckily not in the other order) and I also wrote a similar episode here. In this case, for example, I got to a roundabout I pass every day, but I didn’t recognise it and had the feeling that I had taken a different route home - I knew it was the right way because I was on my bike, cycling home, and knew I was having a seizure. Stopping for a minute, it passes, and I can get on my way again. The downside of this is that it leads me to feel tired and irritable afterwards (although these are two characteristics that are often attributed to me anyway).

The positive side of this latest batch of seizures is that it confirms that I have two common triggers: stress and hyper-ventilation. So all I need to do to be cured is to do is avoid working and stop exercising! Unfortunately, it’s not as clear-cut as this, so I guess the neurologist will be prescribing another cocktail - don’t get me wrong, this is completely normal as no two person’s symptoms are identical - and even mine are difficult to pinpoint.

Watch this space as I write again to regale you with another set of bizarre reactions. If I can remember where I left my laptop, that is.

I ate a pizza last night and it had olives on it. I don’t particularly like olives. These were de-stoned, and I squashed one, only to feel a wave of revulsion when, as it split in two, I had a particularly nasty flashback. The squashed black olive, with the light catching it perfectly, looked like a tiny cockroach. If it had started scuttling round the plate, I would not have been surprised, and I would have been found running, screaming like a child, to the farthest place possible just so I wouldn’t have to look at it. My fear of cockroaches is not just psychological - I feel a physical revulsion which may seem childish, but let me explain its roots and see if you can forgive me.

I don’t think I ever saw a cockroach as a child. That was until I left home to go to the paragon of cleanliness that is Manchester where I lived in a student hall of residence. I had the corner room; the room which had the hot water pipes passing through it on their way round the building. This had the unfortunate consequence of being a particularly comfortable breeding ground for cockroaches. In the evening I would return, with a student-ess if lucky. Any amorous possibilities would soon be ruined, when, after turning the light on, a hundred cockroaches would scatter in every direction, ultimately making their way back to the water pipe, where they would, like firemen called on an emergency, slide down out of sight.

It was a revolting sight, and God knows what they got up to in the evening as I slept. Of course, I didn’t like to make a fuss and merely signalled the fact that the university, might, if they had the time, want to get rid of them. What I should have done is screamed, parked myself outside the headmaster’s (or whatever they call them) office, refused to move, demanded another room and refused to pay. Of course, I didn’t do any of that and spent a full academic year with the constant thought of what was happening under my bed, or, worse still, on it; reluctant to turn on the light and generally spending as much time as possible elsewhere (luckily, it being university, this was possible). A shameful existence, and something I find hard to believe I tolerated for such a long time. So now maybe you understand where the fear comes from, and I hope you can forgive me.

The winter after leaving university, I was invited to a friend’s house for the weekend. Irish, and with a fairly bohemian family (read, not particularly attentive to hygiene details), it was a great weekend - his extended family was over from Ireland and there was whiskey galore. All was going well and, for some reason, I was seated in the comfy chair. The lights were down and I think some kind of card-game was underway when, slowly, very very slowly, a cockroach crawled up the side of the arm, and onto my leg. This is not a particularly comfortable position to be in. What do you do? Scream and run away, putting a slur on the cleanliness of your host’s house? Or say nothing, sweat, grip the sides of the chair and hope it’s all over soon? Guess which option I went for? Remember that it’s a physical thing - I wanted to be sick. I couldn’t swat it off and risk it landing on the floor in the middle of the card game so I let it crawl right over my lap, down the other side and disappear into the depths of the chair. I quickly made my excuses, went to the bathroom and had a sit down for quite a long time. When I came back down, I sat down cross-legged on the floor where I sipped my Bushmills slightly too quickly with obvious consequences.

Need I say more? Yes? Well, how about the time I stayed in a dodgy hotel in Toulouse, only to find the biggest cockroach in the world slowly making its way across the bathroom floor in the morning. The only option was a smart smack with a shoe - a lovely crunching sound and a large stain on the floor are memories I still hold dear. I was booked into that hotel for 2 nights, but made my excuses and left. I decided to book into the Ibis: soul-less but clean. The fact that on arrival I had to report to the reception that they might want to move the guy from in front of their garage door because he was injecting something into his lower arm with a syringe (can’t think what) and might be blocking cars is neither here nor there.

But that’s a whole other story and here I rest my case (after checking inside for the presence of small black objects that resemble cockroaches).

Note from author: “If you are family member and come across this post, please remember that it is a nostalgic piece, not written to offend - we are a product of our times and I wouldn’t have had it any other way.”

Why am I pre-emptively placating a family member who may, or more likely, may not, read a description of our eating habits from 30 years ago? Mainly, I guess, because every time I have touched on the subject of eating habits, it seems to provoke a hostile, defensive reaction. Why? I suspect it’s because we know that the working-class stereotype of the family with dinner on the knees, watching television has some basis in fact and we feel a tad guilty about it. The Royle Family didn’t help matters either.

So, come with me on a journey through space and time: I am going to describe mealtimes in my family (as usual, in stereotypical terms), but it applies equally to most people I knew at the time. Remember the context: it’s the late 70s and early 80s in a northern, working class family. Let’s get the vocabulary right as well. Three meals a day: breakfast, dinner and tea (and porridge or Ovaltine for supper if you behaved yourself). None of this breakfast, lunch and dinner nonsense. There’s no such thing as a starter and a dessert is called a pudding. And brunch - what the hell is that!

It’s 1979, Monday, 5:35PM and the TV is on (“that’s what it’s for”), Blue Peter and John Craven’s Newsround have just finished and Rhubarb and Custard will be starting soon. Dad’s just got home from work; upstairs for a wash and back down he comes, flops into his chair and dinner is served immediately. All the family gathers round, plates on knees and cup of tea on the floor, between the feet. It’s by no means comfortable - the food is difficult to control as you push it around the plate with upper legs clamped together, lower legs akimbo, feet pointing inwards, heels off the ground and elbows clasped tightly to your sides. The result of this is that the stomach is naturally constricted - maybe that’s why we didn’t get overweight - you can’t get as much food in when you are eating bent over double…the ensemble looks like a group of cowering, plate-holding, mesmerised TV-worshippers. 6 o’clock, the pots are already washed and it’s all over for another day.

If you can’t picture it, perform the following experiment: take your laptop off the desk, move to the sofa, sit down on the edge of the sofa, put the laptop on your knees, take a look at your posture and re-read the previous paragraph and you will get it - what goes around comes around. I’m sure there’s some kind of irony in there.

It’s the same routine, Monday to Thursday, but Friday nights were best - my special treat is to be sent down to the chippie at 5:30PM to join the queue that snakes round the shop, out of the door and around the corner, “Fish and Chips, 4 times please, with a bag of scraps” (scraps are the bits of batter that are left over from the fish - they come for free for some reason). Heaven! But we weren’t one of those common families - we use plates, no eating directly from the newspaper for us. But who’d have thought that fish and chip shops would lead the way with paper recycling?

Years later, the town went all upmarket when the “Potato Parlour” opened- a baked potato shop. It didn’t last long - bad timing and market research I think - they opened at around the time when microwave ovens arrived; everybody felt they had to have one, but nobody knew what to do with them apart from making baked potatoes and reheating cups of tea that you had left lying on the floor while you ate your tea (at least, the cups of tea that you hadn’t kicked over as you stood up to take your plate back to the kitchen).

So mealtimes were purely functional with only one exception - Christmas Day. You could tell this was a special occasion: it was the only meal of the year that we ate at the table, and, instead of tea, we had a glass of Marsh’s Sass to drink with our meal. But sitting at the table just didn’t feel right. OK, you were comfortable and didn’t get cramp after 5 minutes, but it was unnatural to be looking at somebody rather than at the TV, so heads would crane round to watch the Wizard of Oz while waiting to get through the Christmas pudding and back in front of the TV in time for the Queen’s speech. Phew, Boxing Day, and normality is restored.

Well, there’s a little trip back in time to peek through our living room window. You want to go and have a little peek through the window today? Well, the plates are on the table now, you’ll have to look a little bit later in the evening or you won’t see anything, the kids are no longer there, dad isn’t tired out from painting walls all day and is more likely to be seen with a glass of wine in his hand rather than super-heated tea. The chippie has closed down, but the TV is still there, albeit with a flatter screen and is more likely to be showing Jamie Oliver cooking Rhubarb and Custard.

As a family, eating dinner in front of the TV is wrong in many ways, but hey, I wouldn’t have had it any other way. My wife is out tonight - she’s French and doesn’t understand. I can’t let life in France erode my children’s cultural heritage: “Put the TV on kids, sit down and I’ll bring you a plate of frites…”.