Auras

I'm one of the fortunate people who is able to recognise the signs that I'm going to have a seizure. I used to call it a "precursor" but for some reason, the standard term is "aura". I don't know why that is but I think it may be because some people see a sort-of aura around objects just before the onset of the seizure.

I say "fortunate" because it generally means I can prepare myself for it and move myself away from anything dangerous.

I've been asked to describe what I detect or feel that indicates to me that I'm going to have a seizure and it is quite difficult. But I consider it a decent challenge to be given, so here goes.

When I had my very first seizure (see first blog post) my symptoms were amazingly text-book tonic-clonic apparently. I won't bother describing them again.

These days, the first symptom I detect is a vague feeling of anxiety which I can't pin down to anything. I also get pins and needles in my hands. If it feels strong enough then I get determined not to let it "win" and start breathing deeply but in a controlled way. At the same time, sounds get slightly distorted - particularly speech, although not when someone is talking directly at/to me. I blink more frequently, although I can still see properly. I also tend to feel nauseous and hot.

I don't get aggressive but just want to help and I think I believe that I'm in more control of my faculties than I actually am. For example, in one case, when the ambulance men turned up, and I was sitting on the floor, I said I'd walk to the ambulance. They said "no way" and I said "but I'm fine" and they had to threaten to strap me to the wheelchair in order to get me to behave. Even then I said "I usually have to pay for those sort of services"

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...

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...

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.

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.

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.

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.

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.