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Epilepsy

Diagnosing epilepsy

Many people have a single isolated seizure at some point in their lives. But if a person has more than one epileptic seizure then a diagnosis of epilepsy is usually considered. 

A person is diagnosed as having epilepsy if they have a tendency to experience spontaneous seizures that arise in the brain. The person who has had the seizure might not remember what actually happened, so it helps to have information from someone who has witnessed the seizure. When visiting the doctor, details of what happened before, during and after the seizure can be very important in making a diagnosis. If the GP feels that epilepsy is a possibility, the patient will be referred to a specialist, usually a neurologist. A neurologist will usually arrange medical investigations which may not be conclusive and will also consider other possible causes for the events.

 

Describes what happens during and after a seizure.

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Age at interview: 31
Sex: Female
Age at diagnosis: 25
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And what actually happens when you have a seizure?   

Well sometimes it's just my speech that gets distorted, a bit like when I was in the neurologist's office.  Because thinking back, before I had the first episode that made me go to the GP, I had had a couple of times when I was talking on the telephone to people and the wrong words came out. And at one point the person on the other end of the phone - he knew me quite well - said 'You're talking gobbledygook' basically. And I think if he hadn't known me he might have thought I was drunk or something, it was that sort of, sort of slurred speech and not quite the right words. And so sometimes my speech gets distorted.  Sometimes I get a bit tongue-tied, and I'm aware of that; sometimes I just start to feel like I'm gonna faint or pass out. And sometimes I can stop it there, but after that I don't really know what happens but I think I just fall on the floor or fall, if I was sitting in the chair I might flop back. And then I wake up.

And can you hear what's going on around you?

No, I can't remember anything about it

And are your eyes open or closed? 

I think they are closed from what people have said.

And when you come round you've got a thumping headache? 

Awful, awful headache and I usually feel sick and I'm frightened. Because I know what's happened.

At the hospital a number of tests can be carried out which may or may not support a diagnosis of epilepsy, although not everyone needs to have every test. These tests may also help to find out if a cause for the seizures can be identified. Tests can include EEGs, blood tests and brain scans. A diagnosis of epilepsy is primarily made on clinical grounds. The medical history of a person and video of seizures, if available is very important.

Some of the people we interviewed recalled having a medical history taken and what this involved. Many of those we talked to discussed other tests that were done to reach a diagnosis. Although some people noted that they did not remember tests very clearly, others described them in detail. One man explained that a brain tumour, which was discovered during the tests, was causing his seizures.

 

Recalls the medical history she had as part of her diagnosis.

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Age at interview: 28
Sex: Female
Age at diagnosis: 19
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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 she'd just taken, which took her forty-five or so minutes with me. She gave that to him in ten minutes.
 
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Discusses what he remembers of the tests that led to his diagnosis.

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Age at interview: 43
Sex: Male
Age at diagnosis: 27
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At that stage obviously I was having various tests, it's a long time ago now, 17 years so it's difficult to remember, but I do remember having like the scan where you have the electrodes put on your head and they sort of measure. They flash lights in front of your eyes to test what sort of reaction they get from your brain. And that's when they said for definite that I'd got epilepsy because by flashing the lights in my eyes, they could tell from the response from my brain, that there was obviously epilepsy.

I also had a full scan to see whether there were any tumours so I was, my head was put into the, I can't remember the name of the machine now even, but I had that particular scan done. And the guy that did that was very, very good, I mean he actually took me to one side later on and talked me through it. And said that although you know normally they send these results to the doctors he was quite happy to show me that, and prove to me that it wasn't tumour related. So I had a number of tests there, I even remember having one where I had an injection where I think I had fluid, some coloured fluid injected. But again not being a medical person, I can't remember the names of all of these things. But it was, I just saw it as part of the process.

 

Explains that a tumour was causing his seizures and was discovered during the tests.

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Age at interview: 28
Sex: Male
Age at diagnosis: 15
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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.

People also described what they remembered of having EEGs and brain scans. While some explained that the MRI scan was painless and part of the process, a few people felt claustrophobic. One woman recalled that her tests went on for over two years and she described her feelings when she watched her seizures on video. Several people noted that they would have liked more information about the diagnostic tests, why they were being done and what they proved (see 'Finding Information on epilepsy').

 

Recalls her experience of having an EEG.

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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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.

 

Recalls that having an MRI was painless and all part of the process.

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Age at interview: 31
Sex: Female
Age at diagnosis: 25
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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.

 

Recalls the tests he had and feeling claustrophobic during the MRI scan.

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Age at interview: 65
Sex: Male
Age at diagnosis: 49
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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.

 
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Discusses the tests used to diagnose her epilepsy and how she felt when she watched the telemetry...

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Age at interview: 30
Sex: Female
Age at diagnosis: 9
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My tests for surgery lasted approximately two and a half years, every six months or so I had a new test. One of them was telemetry, which, I was being video-recorded as well as the sound, basically twenty-four hours a day. All bar the times I went to the bathroom of course. The reason for that is that they wanted to see and see what the brain was doing at the time of the seizure. Another one was probes. Because they didn't actually get a good reading from the telemetry, what they did then was to  insert probes just above the brain, so it was in between the brain and the skull to see if they could get a better reading, which they did. 

I actually asked for a copy of my telemetry video which was one of the tests for surgery. I got it through a couple of weeks later and I did the worst thing possible, I actually watched it on my own. It made me cry to look at myself in a seizure. I can now understand how other people look upon someone having a seizure. It's frightening. It frightened me and it was me that was having the seizure.

For many people waiting for a diagnosis can be worrying. One man discussed some of the difficulties with diagnosing epilepsy. Some people recalled what they went through before a diagnosis was made. In one man the various tests he had had proved that his seizures were actually non-epileptic (see 'Non-epileptic attacks').

 

Discusses some of the difficulties with diagnosing epilepsy.

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Age at interview: 45
Sex: Male
Age at diagnosis: 26
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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 there's 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 there's 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.

 
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Discusses what happened before she was diagnosed with epilepsy.

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Age at interview: 18
Sex: Female
Age at diagnosis: 14
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Well ever since I was little really, I've had what people would think of as behaviour problems. And then recently, well when I was in secondary school, about three or four years ago mum was being called up to school regularly because of behaviour problems and me roaring at teachers and stuff like that and taking offence at the wrong things. And in the end I was admitted to hospital because I was harming myself and hallucinating and stuff and hearing noises in my head. And at first they thought it was, I was schizophrenic. But they ruled that out and after about six or seven weeks they decided that I had mental health problems. 

So I was taken up to a psychiatric unit. And they showed me around and said 'This is where you'll be staying for the next six weeks,' to get better. And all the time mum was saying you know 'Well why don't you give her an EEG, you've got nothing to lose?' They were saying 'Well it can't be epilepsy because she's not convulsing and in the end they said 'Well we'll give it a go.' 

Actually that was when we went up to the unit, the doctor there said 'Has she been checked for epilepsy?' And mum said 'No they won't do it.' And by the time we got back it had all been arranged and a date had been set. And then it came back that I was photosensitive and complex partial seizures. And that night as soon as I got ill, they had cot sides up you know, flip charts out and everything, I had two nurses by my bed and the difference was amazing. 

Yeah I think right, looking back in hindsight, they have nothing to lose by doing an EEG at the beginning. They were saying 'It cannot be epilepsy because she's not convulsing.' I can see where they're coming from because that's what they thought but if they'd actually looked into it I could have been saved a lot of bother. 

 

Explains that the tests he had showed that his seizures were non-epileptic.

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Age at interview: 39
Sex: Male
Age at diagnosis: 35
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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 "there's 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." 



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Last reviewed May 2016.
Last updated March 2014.

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