Sogger’s Blog

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!

I wrote recently about strange seizures that I have been having recently, the most amusing of which is a complete loss of orientation (not knowing how to get from the bathroom to the living room, or not remembering the route home when you are on a bike ride for example). My doctor sent me to the neurologist who, in turn, referred me to the hospital to undergo the full gamut of available tests, notably an EEG.

Just after visiting the neurologist, I realised that a couple of months earlier I had switched from my medication, Lamictal, to its generic version, Lamotrigine. I was all pleased about this as it was costing the social security much less money to keep me from collapsing at random intervals. However, this change coincided with the new frequency of seizures and the new types of seizures. I immediately went back to the GP who gave me a prescription for the non-generic version. It was 10 days between switching back and the visit to the hospital. How about that - no seizures during that time. Pretty strong evidence that the generic medicine was to blame. However, with my scientific training, I realised that there may be other factors, one of which was the fact that, like an idiot, I fell off my bike during this time and had therefore done no exercise during the 10 days - maybe this had an influence.

I explained this to the neurologist (at the hospital - the French have such a convoluted healthcare system). Her immediate reaction (no translation needed) was “Ooh là là, catastrophe!”. I’m now going into the realms that distinguish blogging from journalism, i.e. I have done no research to back this up, but according to her, there is a “20% difference” between the active ingredients in the proprietary and the generic version, and that some studies in the US are calling for the withdrawal of the generic version.

I thought generics were supposed to be the same as the patented versions, only cheaper? I don’t think anybody reads this blog, but if you do, I would be interested in finding out more, I may be completely wrong on this one - for once, Google didn’t help me.

Moral of this tale: don’t just accept generics at face-value. You may be a good citizen, but you may be putting your health at risk…

How about this for a Monday morning trip to work? I had to take the tram and know the journey by heart. However, this morning, I cycled to the tram stop (Lyon has a network of free bikes). After a couple of stops on the tram, I realised that a seizure was arriving (I found it hard to concentrate on the words in my book). I then did not know where I was. All I knew was that I was on the way to work and that when I got on the tram I knew where I was going so I must be going in the right direction. A couple of stops before mine, I realised where I was and all was well with the world. The good thing about all this is that you see things as if it is the first time so a tram ride becomes a voyage of discovery - who said I was a glass-half-empty kind of guy.

Still, I have a long-awaited trip to the neurologist this evening, so he can make another guess as to what treatment might work. I feel like a lab-rat.

When I was first diagnosed, I went to different sites to see how people were treated (medically and otherwise) and how they dealt with it. What I soon realised is that no two cases are alike. There are only a handful of treatments, but there are a million different symptoms. I could never seem to find anybody who described the same symptoms as me. For what it’s worth, here are mine in “pain-in-the-ass”-order, but bear in mind that I find it extremely difficult to describe exactly what is happening both during and after the seizure

• A slight “blip”. In the middle of doing something (even as banal as watching TV), for a brief moment, I get a spell of dizziness which passes with no lasting effects.
• Losing the plot in the middle of doing something, talking, listening or reading. This is the most common form. It’s “OK” when I’m at home, but in company it can be a nightmare. This has happened to me a few times in front of customers and I have had to come clean. Once I tried to keep going, but couldn’t clear my head. I won’t do that again. Often, I can feel it coming, and afterwards I often feel tired and often irritable.
• Jamais vu. This one is quite off-putting. Imagine being in a place where you’ve been thousands of times, but not being able to find your way around it. Last week, I came out of the bathroom and could not work out which direction I needed to go in order to get back to the bedroom. Often, I feel like I’m in a place that I’ve never been before.
• Plain old loss of consciousness. This has only happened to me 3 times in 10 years. The “best” was when I was in Vancouver at a conference. In the morning, I set off for the conference centre. Walking down the main street, I suddenly felt sick in my stomach and then remember waking up with a crowd of people standing around me. Pretty scary. Someone asked me if I wanted them to call an ambulance, so I thought what the hell, I’ve got travel insurance. In the ambulance, I was completely lucid and got talking to the ambulance driver who it turned out had worked in the same suburb of Brisbane as my uncle. At the hospital I went through the usual hold-your-hands-out, walk-in-a-straight-line tests. They tried to put a drip in me (god knows why), but couldn’t get it in: “are you an intra-venous drug user”. Err, no but I’m quite tempted if you’ve got anything on offer…

I can’t put my finger on any one trigger, alcohol (god forbid), chocolate (surely not), stress (possible), exercise (possible), tiredness (could be), random collection of these and others (undoubtedly).
I’ve tried several combinations of treatment over the years, none of which have worked. More on these later.

Having epilepsy is no fun wherever you are. I have been (un)fortunate enough to experience treatment approaches in both England and France, so can give an idea of the differences. I’ll get to those in a minute, but first some background.

I first realised that something was not quite right in 1995. I mentioned my strange episodes with difficulty of articulation and general “wooziness” to my GP but it was never considered as a problem. In fact, the GP suggested that it was because I was tired and/or stressed - “relax and get some sleep”. Excellent advice, but the sort of advice I would expect from my mother, not a doctor.

I was lucky in the sense that I worked with doctors. In fact I was part of a university department that was linked to the radiology lab. In 1995 I went to NY for a conference. Probably because of jetlag, I had lots of small seizures (nothing like what happened a year later in Vancouver when I ended up in A&E, but that’s another story). Luckily I was able to tell a colleague when it was happening as it happened. His informal diagnosis: you have migraines, go and see your doctor. This was intriguing because I have suffered from migraines all my life.
Anyway, I preferred to ask another radiologist who referred me to a consultant neurologist for an MRI scan. The scan showed no brain tumour, but armed with a letter from the consultant, my GP referred me to another specialist who gave me the full range of tests.

I got the results immediately “I have some bad news - not for your longevity - but I can confirm that you do have temporal lobe epilepsy”. Great, I liked the bit, quickly added, “not for your longevity”. “Here’s a prescription, take it to the pharmacy department, get a first dose and then go back to see your GP”. Lamictal was prescribed - a small dosage according to the consultant. The pharmacists obviously didn’t have much experience with this drug because they went back to the consultant because they thought he had prescribed an unusually large dose. He hadn’t, but you can only be happy that the pharmacists worry about this type of thing.

I’ll get to the symptons in a moment…