Nearly a holiday spoiler

I'm in the office in Mayfair on the 21st July and it's mid-afternoon. The office is always quite stuffy and airless. I start detecting the start of an aura and that's not good. I try to ride it but this time it won't go away and I realise that I have to warn the others in the office. I tell them that I think I'm going to have a seizure and then I sit down on the ground and try and breath rythmically and slowly but it's beating me. Some of the others in the office come over to try and comfort me and one holds my upper arms gently, trying to get me to relax. I can't, and I feel like I'm overheating with people surrounding me. I don't remember a lot of the rest of this but I apparently started giving out instructions (not quite orders), which included soaking me in cold water to cool me down. Someone says that they should call for an ambulance and I say that there's no need, but they call one anyway.

There is more to this story, but most of it is not in my memory. More as it comes...

Insurance and the Lottery

I'm going on holiday next month to Turkey and being the responsible person that I am, I've taken out travel insurance. Only when you have a brain tumour/epilepsy it's not as easy as it should be. A number of insurance companies just laugh and turn you down. Okay - they don't actually laugh but you know what I mean. So I look on the National Epilepsy Society website http://www.epilepsynse.org.uk/PAGES/info/leaflets/travelinsurance.cfm and try some of the insurance companies they suggest. One or two (no names) say that unfortunately, on their points system, they're unable to cover me. I end up getting insurance that covers the family but excludes cover for me for anything to do with my condition. Apart from that, the cover comes to £30. Bargain.

So I think - well, that's that. The chances of me having anything worse than a seizure are extremely low and our UK health insurance covers any costs if I have to be hospitalised, so that's that.

Only my wife won't have it. She wants me to be fully covered. "What if I have to be repatriated?" She asks. "What if you die?" Well, I won't go into the discussion that went on except to say that the odds of that happening were extremely low. I checked and found that the insurance premium just for me is £240. Yes, £240. I said that given the comparative odds, I'd rather buy 240 lottery tickets.

I lost the argument.

240 quid! How much beer is that?

Don't panic!

On Monday lunchtime this week (12th May) I get a call from my Neurosurgeon saying that he'd seen some anomaly on my MRI scan and that he'd like to see me sooner rather than later. In fact, could he see me on Tuesday (the following day)? I didn't feel like I could actually say no. So I had an appointment on Tue in the afternoon. With my seizures becoming more frequent, I wasn't sure what he was going to say. He emailed me to confirm the appointment and signed off as "Andy". I had to reply and started off "Hi Andy" and then said that it felt a bit wrong calling him "Andy" when he was a neurosurgeon. In other words, I felt that I should address him as "Mr." but he said "Well, I call you Alan so why shouldn't you call me Andy?"

Since then I've found that my neurologist is called "Charlie".

So my brain surgeon and my nerve specialist are called Andy and Charlie. I think that's brilliant!

Anyway, there was nothing too awful to report from Andy. Just a slight change in the tumour. However, I'm back to scans every 3 months rather than every six.

I'll just have to see how my migration to Keppra goes...

Another seizure? No thanks, I've already had one...

For the first time I had a seizure on London Transport. It was on the Central Line, just as it was arriving at Mile End station. I could feel it coming on and just before we arrived there I took one of my Clobozam but it was too late. I spoke to the guy next to me and said "I'm going to have a seizure and he replied "I don't speak English". Then I spoke to the woman on the other side and told her the same thing. Then, being a nice commuter, and knowing how much it annoys me which someone is taken ill on a train and the rest of us are stuck in tunnels for ages, I dutifully forced my way through the crush and onto the platform. I heard someone say "Shall I pull the emergency lever" and I managed to say "No". then I got onto the platform and so did some nice woman who helped me over to the steps where I sat down. She kept telling me to breathe deeply and kept asking me my name. After that, my mind is blank until I find myself in hospital (Royal Hospital, Whitechapel), being helped onto a hospital bed. I'm aching all over.

After that, they go through the normal motions, checking my details, checking that I know them, then doing the usual neurological tests (eyes following a pencil, testing reflexes, and so on. Then I'm moved to a main ward where I have to have a cannula inserted (one of those things they stick in the back of your or in your forearm, which has a plastic exterior). It's to allow them to inject fluids without constantly sticking needles into you. It's bloody painful, I can tell you.

Anyway, to cut a long story short, I'm kept in there until about 11:30pm, and then released.

I'm worried that my seizures are getting closer together, as is my neurologist. Funnily enough, he practices at this hospital as well as the hospital I see him at! What's more, the hospital registrar I spoke had trained under my neurosurgeon! Small world, eh?

New drug

Well, I'm being moved onto a new drug. It's called Keppra. I'm going to be weaned off Lamotrigine at the same time as being switching to the new one. Basically I'm going to start at 250mg twice a day, moving up to 1500mg twice a day! God knows how many pills that will involve...

Reading the side effects is never a good thing to do. But I did. I'm sure that there's nothing there that one couldn't suffer from by having hay-fever medicine or something. The biggest problem however is that my seizures are seemingly random and so I can't really tell what is the cause or what is effective at stopping the seizures. It's like the old joke about the guy selling an anti-elephant machine in England. Someone asks him how he can tell if it works. The guy replies "Well, have you seen any elephants recently?

Anyway, the neurologist seems to be worried enough to write to my doctor. I also had my MRI scan today and I have my copy of the results on CD, but I won't have any feedback until next week some time. Unless it's urgent. So I hope I won't be hearing anything until next week...

Welcome back MRI

The neurologist is a little worried that I've had as many seizures as I've had over a relatively short period. So he's looking to migrate me to a different drug and also to get me to have another MRI scan. This time, however, it'll be at the hospital where I have headphones so I won't have the embarrassment of the radiographers hearing my sweary choice of music.

He seems quite cool about the whole thing as if it's just an irritation to me rather than some life-threatening problem, but I think he's just intrigued as to why I'm still having the seizures.

Hopefully he'll find some reason.

A fishy time?

I only make entries here if I'd had a seizure or a mini-seizure or some interesting medical discovery to add and this time is no difference.

Yesterday (11/4) I had another seizure, this time in The London Aquarium. Luckily, it was quite near the exit so it was easy(ish) for the ambulance to get to me. I realised one was coming and so I had some Clobozam (a drug that tries to calm down seizures) but it wasn't sufficient. To begin with, I sat on the floor, feeling the seizure build up and looking at people walking by and giving me funny looks. After that, I have no memory of what happened until I got to hospital (St. Thomas') but apparently I was stretchered and wheeled out as it was not possible to get me to stand up. In the ambulance I was given diezepam and the next thing I know, I'm being helped into a hospital bed. The night before, I sat on an office chair which broke beneath me (it was not to my weight) and landed on my coccyx and that was painful, and so getting myself into bed was also not very comfortable. Then my memory was blank again and when I came to the next time I had a raging headache and a cannula in my left arm. Then I had all the various checks - an ECG, arm and leg strength, reflex tests, tests to make sure my eyes were able to follow finger movements, etc. And that was it and we were free to go. The tube journey was fine and even though it was a Friday evening around rush hour, we all managed to get a seat. I went to bed early and then an hour later I could feel another seizure starting up. I had another Clobozam, laid down again and rode it through. Luckily, this one didn't carry on to a full seizure.

Anyway - my "allowed to drive" clock has been reset once again...

And the next one, perlease

This was a very minor precursor, but you never know whether it's going to remain like that or whether it's going to turn into something more severe. It's extremely difficult to nail down what causes all this; there does not seem to be any specific events or whatever that one could attribute to this happening. I just get certain signals, and then I panic. This is when I ask for the Clobazam and hope for the best. Most of the time it seems to work.

So - this time it seemed to work and, apart from feeling a bit drowsy, I was able to carry on my day normally. But it all is a problem. At least this one doesn't count as a seizure.

Another day, another seizure

I woke up this morning (14/3) at 6:15 when the alarm went off for the first time (we have it go off at 6:15 and then at 6:45 (don't ask). Any way, I wake up with a start at about 6:30 and begin to get the early precursor signs of a seizure. However it feels like it's only going to be a minor. Anyway I take a Clobazam (something that's supposed to dampen down the intensity of the seizure) but the symptoms get worse and I start to spasm and make weird noises and then pass out. Luckily I didn't wet myself or bite my tongue and at least I was in bed and my wife was there to look after me. I came to at around 8:30 but then slept on and off until about 10:00 (Clobazam makes you drowzy).

My neurologist was very surprised when I spoke to him about the previous seizure and upped my Lamotrigine dosage to 400mg per day, which is high. I hope it doesn't have to go up any higher.

So - my driving licence is put back once more. I'm beginning to wonder whether I'll ever get to drive again.

Once more unto the bed...

This Saturday just gone (the 23rd Feb), I had been out for a walk in the morning and then we went in separate directions to get different things.I arrived home first, unloaded what I'd bought (which included a certain amount of beer), and went to do a few things on the computer. I sat there for a few minutes and then felt the feeling that I've felt before pre-seizure, which included pins and needles and a difficult to describe buzzing (although without the sound) in my head. I swore to myself and got up and headed straight to bed, although I sat up while I tried to establish whether this was going to be a seizure or not. I could feel it getting stronger so I took one of the new tablets that had been prescribed by the neurologist (Clobozam 10mg) then tried to operate my mobile to tell my wife what was happening. The phoone was on lock and required a security number to release it. I think I managed to do that. Then I tried calling her and I failed at the first attempt and at the second attempt apparently all I managed to do was make some weird noises and that was that.

As always, the rest is blank for me until I started to come to, luckily this time in my own bed, instead of in some hospital somewhere. I was extremely groggy and achy but at least I hadn't bitten my tongue, or overheated. I spend most of the day sleeping and also went to bed quite early too that evening. I think the Clobozam may have had something to do with that too. By Sunday I had pretty much recovered, although I still felt drowsy. But I think that's it for this time.

More good news

I saw my neurologist on Wednesday to discuss my condition. Although he was a little concerned about the "mini" seizures that I occasionally had, he was generally pleased with my condition and, like the neurosurgeon, has said that I need only see him every six months, unless something untoward happens. I have to up my dose of Lamotrigine to 400mg a day and he has also recommended that my doctor prescribe me some sort-of pill (I forgot to note the name down) which is a sort-of instant post-seizure relaxant or something. Basically he said that if I took one of these after a mini-seizure it would be highly unlikely that I would have a major seizure after that. Hopefully I will have neither, but it's nice to know that there's something that might prevent the latter.

No news on the suspected melanoma, although one or two people think that the doctor may be over-reacting. I have an appointment on the 25th to see a dermatologist. I'll see what happens then.

The good news and the bad news...

First, as they say, the good news. I had another MRI scan last week (7th Feb) and the neurosurgeon told me that the tumour hadn't grown any more. Even better, he said that he felt that I would only need to see him every six months, rather than every three like I have been doing at the moment. I'll be seeing the neurologist on Wed (13th - nice) just to check things with him, but all sounds positive along those lines.

Now the bad news. It appears that I may have a melanoma on my chest. To begin with I thought it was just a rash of some sort because I kept scratching an itch, but it turns out to be something else. I saw the doctor today who has requested a fairly urgent appointment with the hospital for a biopsy or whatever. Apparently it's a bit large, looks a bit like a mole and shouldn't appear on somebody my age. Deep joy. Apparently I'll be getting examined some time in the next month...

Driving licence reset once more

And so - 9th Jan 2008 I wake up to a seizure. One that is strong enough to knock me out a little, but not enough to require medical attention. My wife phones work to tell them that I've had a seizure and won't be in that day. Throughout the day I spend most of the time sleeping and then try to get up and wander around in the early afternoon. Bad move. I get very nauseous and end up puking up in a bucket. Several times. Then I don't recall what happened next. Apparently I went into a more serious seizure. My wife called NHS Direct (a UK government-run phone in medical advisory service), who asked her to do some tests - like saying my name and seeing if I responded to it. I didn't. They sent an ambulance.


I have vague recollections for a short period after that. They turned up and I had a couple more retching fits. Then they said that they were going to take me to hospital. I think I told them that this wasn't necessary. They told me that they were taking me one way or another and that I should sit in the wheelchair they had. Eventually I did and then I was strapped in (I think) and... well, I assume I was wheeled into the ambulance and taken to the hospital. I have no recollection of the following: my wife followed the ambulance in our car and came into the hospital with me. I first went to A&E and then was taken to Intensive Care (I think). I was overheating and they had to cut my clothes off me to reduce my temperature. They then inserted cannula connected to saline drips to restore my fluid levels, and also electrodes to monitor my cardio side of things. My wife left and I slept. I think they must have injected some sort of sleeping drug too. I woke up at something like 2am without a clue where I was and probably not completely compos mentis either. I flickered in and out of sleep for the rest of the morning. I was given breakfast and cups of tea. I had bitten my tongue during my seizures which made eating anything a little uncomfortable.


I had nothing to read and also had no money as my wife had been told to take all my valuables with her. So I spent most of the morning and early afternoon staring out into space, something I'm not very good at. Eventually I was picked up by my wife and driven home.


Because of these seizures, my driving licence is once again a whole year away. That is so infuriating, even if it's understandable.

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.