Lamictal addict

Lamictal (AKA Lamotrigine) is the anti-seizure drug that I've been prescribed. I've been taking it for some time now and it would appear to be effective most of the time. As I said in my previous post, I still have the occasional seizure but they seem to be less intense and I tend to recover quicker. But - and this is the important point - I worry (and, more importantly, so does my wife) that if I miss a dose, then another seizure will kick in. This is not entirely imaginary; when I missed one dose I had a fit the following morning.

So now I take them religiously twice a day. I carry spares in my wallet just in case. If I'm out for the evening I have to phone my wife at around 7pm (the time when I'm supposed to take the evening dose) just to let her know that I've taken them.

But I've now got a problem. For whatever reason, my doctor seems to prescribe them piecemeal. In other words I get, say, 4 weeks worth of the drug. Why can't they give me a shitload? As far as I can tell, I'm going to have to take it for the rest of my life.

I could rant a lot more, but I can't be bothered. Suffice to say that I've written to my medical practice to complain about their attitude, which no doubt makes me sound sad, but I think it's necessary.

Minis and songs

I have had one or two what I would call 'mini-seizures'. These are ones that are presaged by one or two clues, or auras as they're known in the trade, and then - well, I don't know what actually happens during the fit itself, but whatever it is I don't seem to suffer so much afterwards so I can only assume that I don't go into heavy spasm, nor do I wet myself or bite my tongue - which is nice. All that happens is that I feel very drained afterwards. Oh and I puke or just retch - a lot. Luckily this has not happened outside home although I did get the early signs at work the other day but managed to get home in time.

I also had another MRI scan 2 weeks ago and I was pleased to hear that the tumour/glioma hadn't grown. The neurosurgeon's PC seemed to be playing up which meant that he wasn't able to see the images properly and I ended up doing a bit of PC support but because he didn't have the proper viewer on his machine he had to look at thumbnails which looked too small to me to be of any use, but he seemed to think they were. The appointment also seemed to be very short. I told this to my neurologist when I had my next meeting with him and he said that this was good. If there was any bad news I would have been there a lot longer.

My neurologist is a little worried that I'm having these mini-seizures as the drug I'm taking (Lamotrigine or Lamictal) should have stopped them entirely. So he's sent me for a blood test to find out what level of the drug is in my bloodstream. He thinks I may have to double the current dose of 250mg twice a day. Unfortunately I've lost the form for the blood test so I'm going to have to ask for another one.

Now - the bit about the songs. When you go for an MRI scan you are told that it's a good idea to bring a music CD with you - preferably something loud because the MRI machine is so noisy. My previous scans were in a local private hospital, but this one was in the Cromwell, in London. In the previous machine, as you lay down they put a pair of headphones on you. In the Cromwell they don't. And that was the problem. Because I had decided to bring an album called "Fitness to Practice" by a group called "Amateur Transplants". The songs, which mainly have a medical orientation to them, are not in the best of taste and are quite sweary. They were made (in)famous by "The London Underground Song" - well, famous to anyone who uses the London Tube. Go here (http://www.backingblair.co.uk/london_underground/) to hear it.

Anyway, other songs cover things like menstruation, Downs Syndrome, drugs and other such things. So, as the speakers blare out all this stuff - and the radiologists are all female - I can't do a thing because my head's strapped to the bed that slides in and out of the MRI scanner, cringing inwardly.

Towards the end of the sequence of scans they bring you out of the machine so that they can inject dye into your arm for some more shots to get a contrast. So - out I come and I quickly catch a glimpse of the radiologist who's going to give me the jab and then quickly shut my eyes again (I always keep my eyes shut - it's the claustrophobia thing again). And then I apologise profusely and explain that I didn't know it would be on speakers otherwise I would have chosen something different. She says not to worry.

Anyway, the scans eventually finish and I'm released from the machine. Once again I apologise to all and sundry. Especially about the periods song. They laugh and say that they thought the album was really funny - that they haven't had so much fun doing a scan before and that at least one of them was going to order a copy. "I loved the one about periods," said one of them, "I'm going to play it to my husband!" So all was okay in the end. I have my next scan in 3 months so I'll see if I get the same people. I don't know what I'll bring then...

I told the neurologist about this when I saw him. He told me that that was what radiologists were like...

Whither imagination?

A strange observation perhaps, but it appears that I have lost my imagination. Not completely, of course; I can't imagine, if you'll excuse the pun, what that would be like. But what's gone is my creativity. I used to write a lot. I'm not saying any of it was necessarily any good, but people seemed to enjoy it. I've actually written two novel-length stories. Most of it was humour, some of it was black humour, and I really enjoyed writing it. I would write when commuting, I would write on holiday - whenever. But now I just can't get started. I don't think it's writers block, because it's not like I'm stuck on any one thing, it's just if I try to start writing something, I just think it's rubbish or disinteresting or I can't get into the flow. It truly is most infuriating. I also think it's probably the one thing (apart from not being able to drive) that gets me down about my condition. All the other stuff that people think I should get upset or depressed about with regards to having a brain tumour don't seem to bother me in the slightest. But not being able to write is a real bummer. I'm just glad that my income doesn't depend on it.

Oops - I done it again!

I've had two more seizure attacks and you could say that I was lucky because both occurred while I was in bed and both at weekends. I suppose I should also be glad that I am now able to recognise the precursor to the actual seizure. In all three last cases (the two reported here plus the one in the blog on the 1st of October) I have woken from a disturbing dream, although I can't describe what the content of the dream was, smelling this sharp and unnerving smell that I've described in previous blog loggings. I wake up and smell this and immediately know that things are not going to go comfortably. I can feel my body move into spasm and I try very hard to control my breathing and movement but it is beyond my control. One thing that is taught to people observing a seizure is that when this occurs, see if the person still recognises their name. It's a bizarre idea, but it works. As long as the person thrashing, dribbling, keening and so on recognises their name then there's no need to call an ambulance. They're still all right.

Bollocks.

If I'm in that state, I want Captain Scarlett, Doctor Who and Bones at my side within seconds.

The fucker is that I had gone 2 1/2 months without a seizure. (You have to go 12 months without a seizure before you can drive again). Now it's all reset and I've got to wait for another year before I get my licence back.

More about smells

I've noticed that I've become more sensitive to smells generally. Scents that I might have ignored in the past are now noticeable by their acridity. Some even seem to be "in my nose" - as if they don't really exist. I'm aware that I have become a little obsessed about these smells, although it's more a case of assuring myself that they are not precursors to a seizure as opposed to panicking about them. But they are certainly more noticeable than they were before.

The best way to describe them is if you imagine that the back of your nose is dry and then some acidic or alkalinic vapour runs past. Because your nose is dry, it can't detect the scent as it normally would, but instead just detects the caustic effect it has on the visceral tissue. An exaggerated equivalent of that is what I experience shortly before seizure, so I am sure you can imagine why the mere detection of something similar to this is disturbing.

It's that smell again...

I had another seizure this morning. Not enough to call the ambulance but still a full-blown epileptic fit. I think it may have been a combination of alcohol and forgetting to take my medication at the right time. I think there must be more than this involved because I've done both of those without fitting but maybe I was just unlucky this time. I hope it's a one-off rather than them coming back again.

But with reference to the title, this seizure was signposted by the strange, strong smell that I experienced just before I had my first fit. An intense smell, like smelling salts in effect, although it didn't smell like that. This time I recognised it before the fit itself kicked in properly. I wasn't panicking but I knew that something was happening. I also felt very strong pins and needles in my hands and tried to say this but was not able to string the words together. It was very annoying. I just said that I wasn't getting frightened or anything, but I couldn't. And that's the last I remember until I came to after the seizure. I spent the rest of the day feeling very tired and slept for a lot of it.

Short straw (who got the...)

My neurologist and my neurosurgeon have decided to split responsibilities with regards to me. The neurologist has decided that he will now only be responsible for any seizures I may have from now on.

I forgot to say that I have always been interested in the brain and rate among my favourite writers about the brain: Vilayanur Ramachandran and Oliver Sacks. I told my neurologist this and he told me he hated them. I then told him that I'd just read "The Private Life of the Brain" by Susan Greenfield and he told me he hated her too. My neurosurgeon didn't seem too complimentary about them either. I call it lobe envy.

So - the ologist is looking after fits while the surgeon is looking after MRI scans and beyond.

I am very lucky in that I have private health insurance through the company I work for. But I am also very lucky because the ologist and the surgeon have said that they would be willing to continue looking after me, if the private health scheme decided not to, via the NHS, which is not only comforting but also something I am grateful to the two guys about.

What I'm interested to know is - which one drew the short straw? I have two ways of looking at this; in theory (and, I hope, in practice) the likelihood of me having another seizure is quite low, given the drugs I'm taking. So that would mean less income for the ologist. So he might have wanted a bigger slice of the action. On the other hand, touching all sorts of wood, my tumour might do fuck all for years, in which case the surgeon will only get a relatively low income from looking after me. But I'm sure neither of them are money-grabbing or they would never have offered to look after me on the NHS. So, my only conclusion is that the surgeon is most interested because my particular problem is extremely rare and so he wants to study. But I honestly don't care. They're both decent chaps and as long as they look after my brain that's all that matters.

Next scan - November some time.

I've started thinking - 11/08/07

As I put in a previous post, the Internet - or indeed books - may not be your best friends. I did a bit more research and found that there are roughly 4 types of glioma. I won't bother listing them here, but none of them makes pleasant reading. So much so that I've now written to my neurologist asking a question that for some reason didn't occur to me before:

Is my life expectancy affected significantly by the presence of this glioma? Read the research and I'll be lucky to last more than 10 years. However, as I've said before, my glioma is low-grade and so these figures may not be relevant. On the other hand, some of the articles I've read do refer to low-grade gliomas too, although it's not clear whether the life expectancy figures refer to those too.

Typically for me, the type of glioma I have is very rare and so there are few statistics to work from. So nobody really knows for sure. I guess we'll just have to keep an eye on the MRI scans...

Once again, however, I feel perfectly fine and positive about things.

Neurosurgeon appointment - 08/08/07

This was to get a second opinion with regards to my glioma and also to discuss the options of removing it. The Neurosurgeon was a very pleasant chap and easy to get on with. I brought a copy of the MRI scans on CD as he was not provided with a copy. He had a quick look and spotted the glioma (tumour) very quickly (although my neurologist no doubt had supplied him with some clues). It turns out that it is about 2cms long and is, in the field of neurosurgery, considered to be relatively small. It is also in the right temporal lobe, just touching the right hippocampus. This surgeon does use the "Gamma Knife" which is a highly accurate and non-invasive way of zapping cancerous cells. Unfortunately, it is not appropriate for gliomas.

So he explains that I have three options: (a) do nothing and keep monitoring it. This is probably most appropriate seeing as it's low-grade and therefore relatively benign at the moment, (b) go for radiation treatment, which apparently you can only have once in your life (that's the series of treatment, not one radiation zap), or, (c) have it excised by surgery.

I've gone for (a). Why? Well, at the moment, it's not doing anything and the Lamotrigine seems to be doing its trick as far as stopping me from having seizures go. Option (b) is not attractive, especially as it can lead to hair loss, vomiting and all sorts of other unpleasant side effects. Also, as I said, you can only have it done once, so I'd rather wait until it's really necessary. Option (c) is almost out of the question. Because my tumour is quite deep within my brain, and because it's so close to the hippocampus, my neurosurgeon is worried that surgery could affect surrounding regions which could lead to severe short-term memory loss or, even, loss of use of one or more limbs. So that's a big no-no. It's also rather close to my amygdala - and damage to that is something I don't want to think about.

Next neurologist appointment - 11/07/07

This is after my three seizures in a row, and my second MRI scan. I'm a little worried because I don't know what he might find - i.e. what might have changed in my brain since the first one. In other words, had the multiple seizures affected the glioma at all?

Well, the good news was, no it hadn't. The glioma was still the same size. The other news, however, was that he felt now that I should consider having it removed (he had previously felt that it should not be touched). He had decided this after reading a recent article in "Neurology" - apparently the trade magazine, as it were, for brain people. So I've been referred to a neurosurgeon for his opinion and for me to discuss everything with him.

Back at work - 02/07/07

First day back at work since I had my 3 seizures. I've felt fine for ages, but I wasn't allowed to return to work until now. Everybody's been very nice and the company itself couldn't be more supportive. I feel a bit of a fraud because I feel so healthy. People seem to think I'm being very brave considering the news I've been given (having a brain tumour) but I don't really think about it. Apart from anything else, there's not much I can do about it so I don't see any point in moping or looking for a pity party.

MRI Scan #2 - 30/06/07

My second MRI scan and I'm a bit better prepared. Having had 1 already, I know what's involved. Secondly, I've had 40mg of Propanolol just to calm me a bit.

This time I take "Kiss This" by the Sex Pistols to listen to. The MRI operator says that it's cool!

Hospital - 18/06/07-25/06/07

I come to in hospital - I can't remember the time. I'm in bed with tubes in both arms (currently not connected to anything). I'm somewhat confused and don't really know where I am. For some reason I think I'm in some weird sort of nightclub and I'm watching someone (who is a nurse, although I don't recognise her as such) administering drugs to various people. I think that this is very dodgy and wonder how she's getting away with it in this club. I notice my wife has left her handbag on top of the drawers next to my bed (she's popped out for a few moments) and so I get up to take it to her (I don't want it left in the club). However, as I go to leave the ward, the nurse tells me I can't leave and to get back into bed. I get a little bolshy and tell her she can't keep me anywhere. She tells me that she can because I'm an in-patient. I ask her if she's sectioning me or something and she again tells me to get back into bed. My wife then returns and convinces me to return to bed. She then asks me where I think I am. I tell her that I'm in some sort of club. She then points at the various other patients in the ward and asks me who I think they are. I'm a little confused, but I tell her that they work for me. I don't remember much after that.

I'm kept in hospital for a week. Once again, I don't remember much of that timeeither. But I'm finally released, slightly drugged, and return home.

Seizure threesome - 17/06/07-18/06/07

21:45 - At home. I have a seizure. I have no memory of it myself, but apparently I went into a fit and an ambulance was called. I was taken to hospital and given oxygen and an injection of some sort and then taken home again at about 02:00.

08:10 - My second seizure. Once again, I'm at home. I am taken by ambulance to hospital again.

10:00 - While still in hospital, I have a third seizure. This time I really overheat and I'm taken to intensive care with damp blankets on me to keep my temperature down.

I don't remember any of this happening.

The Internet isn't always your friend - 24/05/07

Sometimes you shouldn't investigate stuff. I've spent some time today Googling about gliomas. It doesn't make pleasant reading. However, all the nasty stuff seems to do with high-grade gliomas as opposed to my low-grade one. Even so, it's raised more questions than answers. I've certainly got some things to ask my neurologist when I see him next.

Appoint with Neurologist - 23/05/07

I had an appointment with my (note it's "my" now, rather than "the") neurologist today to get his interpretation of the MRI scans. Anyway, it turns out that I have what's called a "low-grade glioma." It's a form of brain tumour although it's not apparently malignant. The neurologist suggested that there was nothing really to worry about but it should be monitored. So he recommended that I had more MRI scans at 3, 6 and 12 months from now, except he hinted that he expected to see me before then...

My first MRI scan - 03/05/07

After my seizure I saw my doctor who referred me to a neurologist. He then recommended that I had an MRI scan. I'm ever-so-slightly claustrophobic so I wasn't looking forward to it. I was told to bring some music with me, something loud, so I brought Fatboy Slim. Anyway, everybody was very pleasant and the only bit that spooked me was when I lay down and they put a sort-of grille over my face and clipped it into place. It wasn't touching my face, nor was it a full face-mask but I just felt uncomfortable because I felt that I was clamped in. I closed my eyes the whole way through. During the experience I could hardly hear the music over the noise of the scanner. Every so often, the MRI operator would say "10 minutes" or "5 minutes" which is when the scanner would start up again. She would also occasionally ask if I was okay. Anyway, eventually the scanner slid back and light came back (although I still had my eyes shut) and I assumed that the session was over. I was wrong. It was just so that I could have a dye injected in my arm which would highlight the blood vessels in my brain. The injection didn't hurt but I had to go back into the scanner. Another 20 minutes or so and it was all over, however. Now I had to wait for the neuro to look at, and interpret, the results. In the meantime, I was given a copy of the images on CD. I had a look at them on my PC, and they were interesting, but I couldn't see anything wrong.

My first seizure - 11/04/07 - 9:30am

I'd never had a seizure before - not even a hint of one. But there we were (my family and me) in the Gare du Nord in Paris, looking for left luggage so that we could leave our luggage and go for a wander until our train which was at something like 4:30pm. As we came out of the Metro I smelled a very strange smell. It had the effect of smelling salts although it didn't smell the same. For some reason this made me panic and I'm worried that it's a terrorist attack (this isn't like me). Anyway, I then get a feeling of deja vu and I mention this to my wife. This is the last thing I remember until I come to in this hospital in Paris.

Apparently, what I'd actually done in the meantime was look extremly pannicky, stuck my arms straight out in front of me and then collapsed, making strange sounds, frothing at the mouth, bleeding from the mouth because I'd bitten my tongue, and basically thrashing around on the floor. Some kind Frenchman called for an ambulance and I was taken away.

I was discharged that evening and we stayed in a hotel and took the Eurostar back to London the following morning. Eurostar were kind enough not to charge extra for us taking an alternative train.