And its actually, thinking back on it, its not that bad a system because what the registrar did was take a really, really comprehensive medical history and they did all that leg work that the, you know that the overseeing doctor would have ordinarily had to spend his time doing. And you know she was, she was really good, she was really thorough. I just didn’t realise how much I didn’t know about.

What kind of questions did she ask?

She went through the history you know, ‘When did it start?’ ‘How did you feel?’ ‘Did you have this kind of symptom, did you have that kind of symptom?’ I’ve kept all my doctors’ letters and things like that so I gave her all of those so she could read through the history and see what drugs I’d been taking and that sort of thing. But basically we took it step by step as we went through. I tried to remember dates and things like that as best I could but a lot of it you just, you don’t remember. And it is significant when you change your medication and you probably should pay attention to when you did things and what you did, when you did them. So she actually just took a really thorough history and then she did the standard neurological tests’ look at my finger here, look at my finger there, and scratch the bottom of your feet with a little sharp pointy thing (laughs). She did all of that and then left me to, she said ‘Hang out here,’ and she went and had ten minutes with the overseeing doctor, the overseeing specialist, and gave him the history that shed just taken, which took her forty-five or so minutes with me. She gave that to him in ten minutes.

And they done several tests, long tests, that’s one thing I don’t really like, I don’t really get on well with hospitals anyway. But the point was I had to have these tests to find out what was going on, what the problem was. I had, then after, from vigorous tests, brain scans and things like that, I was found to have a glioma tumour, not a fatal thing, it was just basically like I had a tumour that needed to, treatment, in this case was radiotherapy.

Well anyway I’ll go through these, this treatment, but I also found out that the tumours were, where they were laying on my brain, it was causing me to have my fits, my seizures. And basically they wanted to get rid of the tumour to eventually cure me.

It’s been some years now since I’ve been on the treatment and I still have my fits but I don’t have as many as I used to.

One of them was very strange, I had this, I was, I had I think a head pan thing on, I can’t remember, with probes and whatever and I had to look at this light and I was exposed to this light for different lengths of time. And during the whole experiment, or test rather it, felt like an experiment, I felt like something in a Frankenstein movie. I was having this normal conversation with this tester, who was a nice young man, chat, chat, chat while he pressed all the buttons, flashed all the lights. I think that was the idea to keep one calm and you know relaxed and you know and as a result of this test the consultant wasn’t quite sure what they meant. She took them to some epilepsy expert and he just turned round and said epileptic brain waves or something. I can’t remember what the official word for it is, epileptic brain, I can’t remember I’m sorry what the proper word is. And she said “Oh right.” So that was really the diagnostic point I suppose, was that particular test with its flashing lights. Now I didn’t feel anything peculiar or odd because I’m used to having lights flashed at me because I’ve had you know eye operations and all this sort of stuff, you know.

Yeah it was, I had to take all my clothes off apart from underwear but I had to take off my bra because it had metal bits in it and that would have interfered with the scanner, I remember that, and having to wear one of those hospital gowns (laughs). And then just lying down and being taken into a white tunnel and having my head sort of fixed between these cushion things so that I couldn’t move very much because you need to be still for the scan. And I remember it being very noisy like a pneumatic drill in my ears. But you could talk to the person that was doing the scan and they reassured you. It wouldn’t be that nice if you were claustrophobic but it was OK. It was just part of the process for me, I wasn’t upset by it at all.

Yes, I’ve undergone a CAT scan, an MRI scan, the EEG, the electroencephalograph, I think that’s the way they say it, where they stick this thing like a crown on your head and you’re wired into a machine.

Can you tell me what the CT scan involves?

Yes you lie on a, like a stretcher on this machine, its got a hoop and they just put your head inside the hoop, the rest of you is outside and its not at all unpleasant. You just see this little red light whizzing round and round in a circle and back again as they’re taking the scan. And I have been on the other end of the scan, I’ve been, in the Red Cross we took a patient in to have a CT scan and I’ve seen how it forms in the control room there. Masses and masses of photographs that slice, effectively slice your head and its x-rays really, or a kind of x-ray.

And the MRI?

That’s a different kettle of fish. I am not claustrophobic at all but I’m afraid I was in that machine, its very, very noisy, it rumbles and you’re in a very, very confined space, I couldn’t get out of it quick enough. But again I think it produces much the same sort of result as a CT scan, in other words it slices the body.

Yes, that was, it was one of those things where with epilepsy the most important aspect or the first things that neurologists have to do is um, diagnose you, diagnose the exact type of epilepsy you have. When theres about forty different types of seizure, its obviously a very difficult condition to diagnose because unless you have a witness then the problem is that most patients who go to their doctors expect to know what they’ve got, what to have for it and how long its going to take to get rid of it. Unless the doctor actually or theres a witness there, then the diagnosis stage can be a long drawn out process in itself. That’s one of the biggest problems with the condition, the fact that it does take a long time with some people to diagnose exactly what form they have;

So really in the future, in the next five or ten years, there has got to be a push of not only more neurologists available but also help from people like nursing staff.

Well firstly my psychiatrist’s staff grade, senior registrar whatever, gave me a full, a full undertaking of all my whole body, all my reactions and everything, hammers all over funny places in my body and testing my back and testing everything. And he said that he thought it might be temporal lobe epilepsy as well. So I had a two pronged attack. I had my GP referring me for tests and things like that at a very good hospital and I had my psychiatric nurse and so on also saying well if you want we can send you to a local hospital. So I had it both ways.

…It was really assuring that somebody was going through the right tests. So then he said “Look I don’t know whether you have temporal lobe epilepsy or not but I’ll tell you what I will do.” He said “I will, I will er check your EEG again and I will check your telemetry again and I’ll check your MRI again.” He said “I want to look at these three things again, particularly the telemetry because,” he said “theres something in the telemetry report that I’m not very happy with about certain peaks and troughs that I’m not very happy with and,” he said “I want to look at that again and discuss it with somebody [hospital]. So he then said “I will refer you to a clinical psychologist at a very good hospital in London and,” he said “I’ll come back to you about whether I think you’re temporal lobe epilepsy or not.” So when I went the second time, after a proper interview and everything he said “I don’t think that you are temporal lobe epilepsy.”

‘So he said “I don’t think that you are temporal lobe epilepsy but it’s on a balance of probabilities that I say this, as with many things.” He said “I think that you’re having seizures that are called non-epileptic seizures.” And he said “I think you could benefit from going to see a clinical psychologist.”