Sogger’s Blog

I’ve not had a good weekend; in fact, I’ve not had a good week - I’m thoroughly ticked-off (in the American sense). We have to deliver a big project next week and there are still some serious bugs remaining. In fact, if you look at the simplest measure in the bug database, there are 35 open “must-fix” bugs. The big-boss uses only this number as the measure of quality, and therefore asked me “formally” to inform my team that they were to come to the office to work this weekend in order to make sure that the number falls to zero for the shipping date (”otherwise, you and I will have some serious issues to discuss”, he said with what he obviously thought was a disarming smile). The problem with his request was that this involved asking two new guys to work this weekend, one of whom has been with us for only 3 weeks and has his child for the weekend only, and therefore would have to ask him to spend a sunny Saturday kicking his heels in an air-conditioned soulless office - a good preparation for later life maybe? The other unfortunate aspect of this is that I had to “formally” decline to come to the office, which made me feel even worse, and my boss even angrier, giving me a good ticking-off (in the British sense)

We planned to go to Beaune this weekend to leave the kids with Papi for the last week of the school holidays. I always enjoy these trips (see some of my first posts), as they are often accompanied by a purple haze of burgundy-red. To be honest, I could just have easily have sent my wife and sat in the office, presumably looking perplexedly at the list of bugs and writing a variation on this post, but what the hell, sorry guys, I’ve done the grind in the past, family and alcohol come first (not necessarily in that order).

Another reason not to work this weekend is that the hunting season starts next week, so the forests become off-limits to sane people for six months. This means that it is the last chance I will get to go mushrooming, it being a particularly good period, as the Girolles are in abundance (or so I thought). Saturday afternoon, after a long lunch, a siesta and a suitably concerned-sounding call to the office, we set off to the forest, armed with knives and bags for the kilos and kilos that we would undoubtedly be bringing back for dinner that evening.

French forests (the ones around Beaune anyway), are dense, dark, sprawling, and, at this time of year, damp underfoot. As you step on the fallen branches, they crumple like paper into a deep, shag-pile carpet of dead leaves. Girolles are orange mushrooms. Unfortunately, French slugs are orange too, as are dead leaves. In the past, when I have been looking for Girolles, you can put up with bending to pick up a slug, as you will always find clumps of mushrooms to make up for the disappointment. This time was different though. I saw nothing; clambering over the fallen branches, picking the spider’s webs from my hair and mouth,  slipping down embankments for an hour or so with not a single sniff of fungus soon ticked me off. The only bright moments were seeing an adder glide off the path into the undergrowth - the first time I have seen a wild snake in Europe - and son 2 picking a toad out of a puddle and putting it inside son 1’s Wellington boot, much to everyone except son 1s’ amusement. As time wore on however, I began to feel more and more guilty about not staying in the office to give moral support, and thinking that I would never get back in time to call the big-boss with a status update (as if that would change anything).

Believe it or not, as we got back through the door, my phone was ringing and it was the big boss. This left me on the horns of a dilemma - answer and tell him that I didn’t know what the status was, or don’t answer, call a team member, and then call him back pretending that I didn’t know he had already called. I’ll let you guess which option I chose…

In fact, things had moved on surprisingly well in terms of the product quality. In terms of the bug count, however, things weren’t so good, falling only by about 5 or 6. My attempts to explain that a pure bug-count is not necessarily the best way to measure things fell on stony ground. Big-boss, once again, ticked off. Software team; tired and ticked-off. Me; ticked-off by the big-boss. Bugger it, let’s get a bottle, off with its cork and back into a purple haze.

So now it’s Sunday afternoon; the guilt of not being in work has worn off with the wine from Sunday lunch, and the apprehension of going back to work tomorrow has not yet settled in. Good news though - they are showing Wigan Athle-tick versus Chelski on TV. Small comfort, but you take it where you can. I settle back on the sofa, arms behind my head, and my wife says, “what’s that black spot in your armpit?”. I twist to look, thinking that maybe it’s a previously undiscovered mole, but this black spot is surrounded by a red ring.

A closer look, and it turns out that the only thing I brought back from the forest yesterday was a tick, a small burrowing insect that gets under your skin, gorges itself on your blood over several days, leaving you with Lyme disease, a particularly nasty infection that needs treating with antibiotics, otherwise you end up with arthritis and heart failure. Tweezers out, tick - OFF!

So, as the weekend ticks to a close, I’ll take a break, and wait until later to post about a hospital visit during the week that was possibly the worst since I was diagnosed as an epilep-tick…

I recently mentioned my problems with Tegretol and that the neurologist wanted to change to something with the same molecular structure. With hindsight, I’m not sure why he wanted to do this, given that Tegretol didn’t work, but his overriding concern seems to be getting me off the Lamictal. He therefore prescribed Trileptal and I switched over to it on the Friday.

It was on the Saturday that it started; it began with pain behind my eyes, something akin to a migraine (which as I said earlier, is something I suffered from before the epilepsy started, although I cannot say whether there is a link between these two observations). This was a bit of a pain (no pun intended), because we were away for the weekend and I couldn’t just slope off to bed. As the weekend went on, it got worse, and I found myself unable to get warm, shivering constantly and generally feeling rougher than I have for a long time. To compound this, the rashes that I also spoke about recently got worse and even itchier (hhhmmm, are you enjoying the imagery?). This led me to read the lengthy tome entitled, “Trileptal Side Effects”.

Among this long list were common ones such as “flu-symptons” and “cutaneous eruptions”, and, “if you experience any of these, stop treatment immediately and seek the advice of your doctor”. Great. I therefore stopped and the seizures started. It’s now Sunday and we are on the long drive home with me shivering even more. As we arrive, I have to get out of the car and open the gate. It is then that the shivering gets worse and I just want to get into bed and under a pile of 10,000 blankets. I fumble for the front door key as the shivers continue to get worse. Oh dear, a quick trip to the bathroom is necessary, and you can imagine (if you are a bloke) what that is like to pee with a shaky hand (and I speak in terms of directional control rather than teenage kicks).

Finally to bed, and I am virtually flinging the sheets off the bed, so much am I shivering. After a few minutes of trying to stop it, things are down to an acceptable level and I can lay in the dark, fully clothed, wearing my beloved Parka and covered in several blankets (fewer than the requested 10,000, but enough to be going on with). I surmised, after calming down, that what I experienced was a panic attack, brought on by not being able to get to bed as quickly as I wanted, and worrying that I am experiencing some horrible side effects and being unable to contact the neurologist to do something about it. If this was indeed the case, then it is the first time it has happened to me - apart from the time when I was abused for a full 90 minutes by a bunch of footballers during a match in the south of England for simply being “a northern c**t”. In either case, it is not something that I wish to experience again.

I called the neurologist on Monday morning and described the symptoms to him. The fact that I was also running a temperature (38.9°) suggested to the neurologist that it was “only” flu and that I should see the GP. The GP wasn’t so sure and prescribed blood and urine tests. The following day, the test results came back and, sure enough, it was “only” flu. I now know that people who say that they have a sore head and a runny nose do not have flu, and know that this is the first time that I have ever had it. 10 days later, I am still weak, and a recent walk in the Lake District left me unable to move for two days afterwards!

So I have restarted the Trileptal and of course this means that the rashes are still there, and, given that  it doesn’t work, I am still having the seizures. Now I just have to wait until June 2nd to see the neurologist and try yet another cocktail. And so it goes on.

Anyway, enough of my detailed epilepsy problems for the moment - If you find them extremely tedious, bear with me because I write them in order to help anyone else going through the same thing - it is difficult to find a description of symptoms that match my own when I am browsing the forums.

As Corporal Jones said: “Don’t Panic!”.

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 thought it might be interesting to write down a bunch of random facts about epilepsy as I realised that people don’t know much about it and feel uncomfortable even talking about it. Don’t worry, I’m here to help.

At this end of this (if you get that far), you won’t be much the wiser, but you’ll know a bit (if you’re not even the slightest bit interested in reading this, just have a look at the anecdote at the end, it made me laugh…). Maybe you’ll want to go further and learn more, but even if you don’t, you’ll be able to fire off a few facts and sound knowledgeable…I find that, in life, a few facts, well-placed, can get you a long way. Anyway, here is a highly non-scientific list of unordered titbits:

• Normally, electrical signals pass between the neurons in your brain; they control your thoughts and movements - everything you know or do, that’s all. In normal situations, this is a fairly ordered process. Stop signals are respected (unlike in France) etc. Epilepsy is a temporary malfunction of this process and is often described as a “storm” of electrical signals firing off abnormally.
• The part of the brain where this occurs determines the type of epilepsy you have: some are generalised (the whole brain is effected), some are localised (just a bit of the brain -always the same - is involved). Mine are localised in the temporal lobe (not very important, just heavily involved in memory, speech and vision, gulp!) and are called “complex partial seizures“. Not surprisingly therefore, my seizures often result in changes to my speech and rekindle strange, long-forgotten memories…
• A seizure can last between a couple of seconds or several hours. Even a 1 second seizure is a pain. I’ve been in the middle of a presentation to customers, had a seizure, which basically had the effect of making me lose my train of thought and my audience feel uncomfortable…anyway, where was I?
• Between 0.5% and 1% of the population suffer from epilepsy; it’s difficult to know exactly how many - some simply don’t realise and others don’t admit to it because of the stigma attached to it or the associated annoyances (loss of driving licence, difficulty in finding jobs in some sectors…). You probably know somebody who has epilepsy (especially if you know me).
• There are innumerable triggers for epilepsy: some common ones are:
• Stress (definitely one of my triggers). On an otherwise excellent site about epilepsy, I read the following useful advice about how to reduce stress-related seizures: “try to avoid stressful situations”. Amusing, but actually, using it as a kind of mantra might actually make sense.
• Alcohol abuse (although I recently read that it is stopping drinking that can trigger the seizures, at least that’s the way I understood it - don’t contradict me, you don’t want me getting stressed),
• Sleep deprivation (”stop writing this blog entry and go to bed”)
• Not taking your medication. Duh.
• Some other stuff.
• All sorts of things have been been attributed to epilepsy and have been the focus of serious scientific study:
• Enhanced creativity (although there are some exceptions - take this blog…)
• Extreme religious belief. I guess that part of my brain didn’t get affected - hallelujah! D’oh! Could it be that religious belief is just a bunch of electrical signals fired off in the wrong order in a particular bit of your brain? Richard Dawkins would have something to say about that…

OK, so that’s enough random snippets. Epilepsy is not really a laughing matter, but this made me chortle:

A friend of mine told me that his company had sent a memo to all staff looking for a replacement phrase for “brainstorming” because they thought that this word might be offensive to people with epilepsy. They came up with “thought-shower”. Brilliant - a thought-shower to replace the word brainstorm!

Have you ever had an MRI? I had one today; it was part my why-am-I-having-epileptic-seizures-all-the-time saga? See my older posts for more details.

I should explain that I have had lots of MRI scans in the past (in a previous professional incarnation I studied MRI images of people’s knees in order to try to calculate whether their arthritis treatment was working or not).

As I already said, my epilepsy first showed itself in around 1994 when I working with the radiologists looking at the said pictures of knees. It seems crazy now, but it wasn’t taken too seriously at the time and I had a colleague take an image of my brain with the result “yeah, no tumour there”. Fast, professional and re-assuring.

Times and locations have moved on; today, I felt small, weak and frankly, a bit scared. The French medical system is notoriously protracted, and it was only after a visit to a GP, who referred me to a neurologist (for medication), who referred me to a neurologist (for an EEG) who referred me to another neurologist (for the MRI), that I finally arrived at the clinic.

An MRI is not dangerous in itself. It’s very ingenious in fact, but that’s for you to find out- if you are ever given the choice between an X-ray and an MRI - take the MRI. If you are claustrophobic, are sensitive to loud noise or have a nervous tic, keep away unless absolutely necessary.

After having a drip inserted in your arm, your head is clamped, headphones placed (obviously) on your head, a panic button placed in one hand and you are slid into the machine. With suitably funereal music, you could almost imagine being sent into the fires for your own cremation. Unfortunately, I was not treated to funereal music - I had “An Englishman in New York” by Sting. Why, I don’t know, but there you go.

I once watched a friend playing Counterstrike, a ridiculously violent shoot-em-up game. The sounds from that game reminded me of what I heard for 15 minutes. Repetitive banging with tonal changes for interest (all of course with Sting crooning in the background - although I don’t remember songs about Quentin Crisp featuring in Counterstrike).

Anyway, the good news is that I don’t have a tumour (God, I hadn’t even considered that before the neurologist informed me) and I don’t have any dead bits of brain (apart from the bits that I killed this evening with a very nice 2006 Chardonnay.

So now it’s back to the old routine of trying different combinations of medicines that might reduce the seizure rate to around 1 per 3 months (according to neurologist 2). I guess I should be relieved by all that, but I feel a little shaken up by it all really.

A little aside:

The funniest thing about all this epilepsy stuff is that I am pretty sure I remember when it was triggered. I was playing for Writtle FC (oh yes, those heady days of amateur football in the Chelmsford area). We had a corner, I was positioned just outside the box and said to myself (wait for it), if this gets flicked on at the near post, I’m gonna make a late run “just like Bryan Robson” and head it in. Sure enough, near post. Sure enough, not quite as good a player as Bryan, a head butt to the side of the head and a somersault that left most people thinking I had broken my neck rather than induced epilepsy. So you see, every cloud has a silver lining - I am not Bryan Robson!