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Epilepsy in Young People

Experiences of different tests to diagnose epilepsy

There is no single conclusive diagnostic test for epilepsy. An important part of epilepsy diagnosis is a description of the seizure by the person who experiences it and someone who has seen it (because the person themselves might have been unconscious for all or part of it). The main diagnostic tests are EEG (ElectroEncephaloGram) and MRI (Magnetic Resonance Imaging). These tests can support a diagnosis of epilepsy but even if the results are normal, a diagnosis of epilepsy is not necessarily excluded. Other tests can also be used to aid the diagnosis. 

Here young people describe how they experienced the different tests they had for diagnosing epilepsy.

EEG
EEG records the electrical activity of the brain by picking up the electrical signals from the brain cells. Electrodes placed on the head record these signals on a computer. They only record electrical activity so the test is painless.

 

For Helen having an EEG was 'not a bad experience'.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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The EEG was, I thought it was gonna be really scary it wasn't too bad. In fact that was better than the MRI. The EEG, they stuck little kind of things all over my head, I think they are quite like ear phones. They had the kind of little pads and they stuck them all over my head with this kind of glue. It wasn't proper glue, it was kind of gummy stuff. I had to lie there and I had to be as relaxed as I possibly could. When I found out that it wasn't that scary and it wasn't terrifying or intimidating at all, actually I could get quite relaxed because I'd read a lot about it before that was quite useful. They sent me a lot of information at the hospital so that was useful and I just had to lie there and do certain patterns of breathing. They actually were quite upfront, they wanted me to have a seizure. They were trying to bring on conditions that would help me to have a seizure, because if you do have a seizure during the EEG it means that they get your brainwaves and what your brainwaves are doing while you're having one. So they can see what's going on in your head and what your brain is doing, which is quite good. It's more about how your brain is working than what your brain looks like because that's what the MRI is and then they flashed lights in my eyes to see if I was photosensitive but I'm not, I'm quite lucky. I think about three to five per cent of people with epilepsy are photosensitive and I'm not. I'm quite lucky. So that's how that went and then afterwards they, the lady she kind of used some water just to get the pads off my head to dissolve the glue. Although my hair was still a little gluey afterwards. Luckily I'd remembered to take a hat with me which was very good because my top tip for EEG's take a hat. So I made it home and it all washed out perfectly well. And it was actually not a bad experience and it was explained so thoroughly to me, that it was almost a good experience. Though they didn't find anything, but there you go.

Almost all of the young people we spoke with had had an EEG. Only one person hadn't and was still, five years after diagnosis, waiting for an appointment to have one. Quite a few people said they were scared before having an EEG because they didn't have much information about what it involved. A few did get more information and found this reassuring. One woman said that trying to relax and focusing on her breathing really helped during the EEG.

 

Bex worried that having a seizure during the EEG would upset her parents. She was also concerned...

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Age at interview: 20
Sex: Female
Age at diagnosis: 13
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Well after my third seizure I was given an EEG at a local hospital and I was quite scared. I was unsure about what it would' I knew it wouldn't hurt or anything but I don't know why I was just very very apprehensive about having it done. I went along and had it done. And my parents were there, I remember that time. I felt uncomfortable in a way that they were there. I don't know why, but it was very strange. I don't know if I thought, I might have a seizure, because you know they are shining a light in my eyes I thought you know, I could go. I thought I didn't want to see my parents upset again or something. I had one of those. I didn't have any other tests until about two years ago now when I was given another EEG and this time I took a friend and I really didn't want to go that time, I don't know why again. But again it didn't hurt or anything so yeah'

Why do you think it was a bit uncomfortable or you were apprehensive?

I am not sure. I think in a sense it is not so much the tests, I think sometimes the results. My second test showed, I had a letter back saying everything was normal. And I was like is that are normal for epileptic or normal so' you know what does that mean and sometimes the information you know could be given to you in a different way than what you need. You need a lot of information and the results, I mean it takes months, the results to come back and you know you are just sitting around waiting. And it is just the whole process, it's another test. You know another waiting list and are you really wasting your time and you know sometimes you just think what is the point you know. Sometimes you don't think you are getting anywhere.

Sometimes during the EEG, a light is flashed in front of the person's face. Many people found the flashing light uncomfortable but this is a very important test to do to see if the person is 'photosensitive'. This is when seizures are triggered by flashing lights, or sometimes by certain geometric shapes or patterns. If the EEG changes during the flashing of a light, the technician will stop the flashing before a seizure develops.

 

During his EEG, the strobe light made Finlay feel as if he was having an aura and was 'floating'.

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Age at interview: 21
Sex: Male
Age at diagnosis: 11
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I had the EEG, they kind of put the electrodes on, and I thought 'Oh that's quite funny, I've got this stuff on my head and yeah it's a bit of a laugh', and then I didn't realise they were going to put a strobe in front of your face and I didn't know what a strobe was. And I thought, I just said 'Okay,' and they put this strobe on my face and it started to blink with you know the light. I thought 'Oh that's really uncomfortable', and she said, 'Keep your eyes open please', and I was like, 'Okay I'll keep my eyes open'. It just sped up, so it sped up slowly over about two minutes until the point where it was like hundreds of times a second, and my brain went into I would say a fairly severe absence, and I think that was the point. I think they were trying to trigger a seizure, so that they can monitor what on earth was going on. 'Cos I wasn't photo sensitive before and they were just trying to get something out of me I think. And I was trying to close my eyes and she said, 'No, keep your eyes open.' I can still really vividly remember like the light being like scarred into my brain almost, it was so bright. When I have an aura I lose the sensation in my fingers and my body and I felt I was floating and that's quite what happens when I'm having an aura, I panic. I'm also floating, and I thought, oh God I'm floating oh this isn't nice at all.'

Many young people said having an EEG was no big deal. One man said he was first scared of it but, in the end, it 'was a laugh'. Another said he looked like 'something out of Star Trek' with the electrodes on his head.

 

Becky fell asleep during the EEG and found the different tests quite exciting.

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Age at interview: 23
Sex: Female
Age at diagnosis: 15
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I remember the first EEG I had, I fell asleep [laughs]. I remember that one, that's the one with they stick them all over, and they flash the strobe light. I fell asleep during that one. I think I fell asleep during the second one actually as well, yeah, they really don't bother me. Stuff like that really doesn't bother me at all, I've never really been bothered by like hospitals and tests and things like that. If I'm honest I probably found it all quite exciting I think. I'm probably one of those people who found it quite exciting. I quite like being the centre of attention, things like that. Yeah, fell asleep during my first EEG.

The top tip young people wanted to give others going for an EEG was to take a hat to wear on the way home after the test because the sticky 'glue-like' material used to attach the electrodes will be all over your hair!

For a few people, the EEG results together with the eye-witness account of their seizures were conclusive to diagnose epilepsy. For some, the EEG results were absolutely normal and they needed other tests done or the EEG repeated later on. One man had an experimental EEG to find out more about the type of epilepsy he had. The experimental EEG lasted 2½ hours and he also had an MRI scan at the same time, but even that didn't detect what was wrong.

Sleep deprived EEG

The EEG is more likely to record abnormal brain activity if a person is tired or dropping off to sleep. 'Sleep deprived EEG' means having an EEG test while the person is sleeping. To help people sleep during the test, they may be asked to stay awake the night before. A mild sedative might also be used. One young woman who had normal results in the standard EEG was told she would need to have sleep-deprived EEG which showed abnormal activity.

 

When Rachael had sleep deprived EEG, she drank coffee and watched DVDs with her boyfriend to try...

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Age at interview: 25
Sex: Female
Age at diagnosis: 21
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'We want to do what's called the sleep deprived EEG because it seems that a lack of sleep and obviously as well a bit of stress seems to bring it on for you' I was like okay. That sounds good. He said, 'But you'll have to stay up all night.' 'Oh.' [laughs] okay, it should be quite fun. He was like oh you know continue taking your medication when you go to the appointments and things like that. And he said what we'll do is when we've found out like more if we can pin point something in the EEG we can change your medication to make something more specific for you, maybe for that type of epilepsy if we know. So, it was quite hilarious actually trying to stay up, my boyfriend kept bringing me coffee, he was like, 'Have coffee, let's watch a DVDs', you know. I really wanted to go to sleep and about four in the morning I just said, 'I Just wanna lie down just for a second.' He was like, 'No, wake up.' And trying to shake me and I was like, 'Oh, I'm so tired', and when my mum picked me up in the morning and went for the test and I just, I remember feeling like a bit tingly in my mouth while I was having the EEG and really shattered and just feeling a bit funky, anyway not particularly feeling fabulous, oh you don't suppose anyone would be after having no sleep.

Video telemetry

Video telemetry means having the EEG and being videoed at the same time. This usually lasts for a few days and requires a stay in hospital for this period of time. The electrodes are portable so that the person can move around the room. With video telemetry, the EEG can be compared with the video recording of possible seizures. This can give important information about whether seizures are caused by epilepsy and if so, whereabouts in the brain the seizure starts.

 
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For Carole, it was a week's video telemetry that finally made her diagnosis clear.

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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I got diagnosed in 2005 and due to where the scar is on my brain they couldn't find it. I kept on getting sort of rejected for diagnosis because, one; they didn't want to diagnose it because they didn't want for me to have the label of epilepsy all my life, and two; after so many scans, they could not find apparently anything wrong with me. 

But they couldn't understand why I was having all the signs of it. And it was actually due to losing a job and going to occupational health, and he said, 'I think you've got epilepsy'. Yet again I was getting consultations and stuff and still absolutely nothing, and the last throw of the dice was video telemetry at a hospital in London. It's a constant EEG scan and videoing for a whole week, and I had to go up there and stuff for a whole week. They actually found out where the scar was on my brain, which was in a very awkward place and apparently that's why I get memory loss 'cos its actually round about where the memory is stored in the brain.

MRI

MRI (Magnetic Resonance Imaging) is a scanner that uses magnetic fields to take detailed images of the brain. It can find scars or other structural causes of epilepsy. MRI makes a loud noise but it is a painless test.

Because an MRI scan uses strong magnetic fields, metal objects in or near the machine can affect the scanner. Before having an MRI scan, all metal objects such as jewellery, piercings, coins, keys or hearing aids must be removed. 

Most young people had had an MRI scan. They described the scanner as a 'Smarties tube' and 'a tunnel'. Most had been worried about feeling claustrophobic inside the MRI scanner and described 'dreading it' and being scared beforehand.

 
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Francesca says the MRI was quite difficult for her and she was not given any music to listen to.

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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I was dreading the MRI scan because I knew that it involves a sort of tunnel and noises and it lasted for fifteen minutes but it was quite a difficult experience. Mainly because of being claustrophobic and through the whole experience but other than that, it's not painful or anything.

Was there anything that made it easier? Could you listen to music or'?

No I thought at first I would be able to have music on or something but no I wasn't given the option. I think the whole experience of it, it is quite a daunting experience, it is not sort of a natural sort of thing to sort of go into a tunnel.

 

Simon said the EEG and MRI were 'scary' for him because he didn't know what they'd involve, but...

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Age at interview: 21
Sex: Male
Age at diagnosis: 17
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When you were in hospital, have you had these tests done, where they put these things on your head?

Simon' Yeah, yes.

Keyworker' The EEG.

Yeah and when you go into the big, the MRI scan?

Simon' Yeah, yes I have yeah.

What were those tests like?

Simon' Quite sort of scary for me really and I didn't know what they were gonna do and, it was quite sort of frightening for me and 'cos it's something new to me that I had never had done before really.

Did the doctors explain to you what they were doing?

Simon' Yes, yeah. Yeah they did.

Some people did feel claustrophobic in the MRI. Some said it was difficult to stay still and as soon as they were told to be still, they felt the urge to move. One man who had an MRI when he was a small child had got scared and got out of the scanner during the test.

Some people said that the two-way mirror inside the MRI scan was helpful because they could see the staff. Many were given headphones and the music played through them helped during this loud test. One young man, though, described feeling a bit panicky in the test and even more so because they played Spice Girls through his headphones!

Two women explained how the nurses had been joking with them during the test, and this had helped them to relax.

 

For Helen having an MRI was 'quite a scary' experience but she jokes that at least now she has...

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I felt special for having an MRI because you know you only really have them in extraordinary circumstances and I was actually really interested to have pictures of the inside of my brain. I mean everyone knows that you have a brain, but I actually have physical proof that I have one. There are pictures. No one can say, 'Oh Helen you're brainless.' Because I can show you, look, look hang on. There it is, that's my brain [laughs]. So I was really pleased to have it done. In preparation for it they basically, I had to take out all the metal in my face which is no mean feat because I have quite a few piercings and bits and pieces. So I had to take all my piercings out because it's like a magnetic resonance imagery isn't it. 

I don't how I remembered that, but I did. So if you have any metal in there at all it gets completely dragged in, so it's very important to take off all the metal that you have on your body. And then I lay there and actually I'm not gonna lie the MRI was quite, it was quite scary. Mainly because you're kind of trapped in a small space like a little doughnut hole and I'm quite a big lady as well, so I was little bit scared about being stuffed into this little doughnut whole. Then you get all these weird noises as the machinery kind of whirs around your head and you hear grinding noises and it's quite, quite loud. And they are quite nice with you, the thing is your head is clamped in and you're supposed to try not to move it. The moment they say that you are moving your head, you are shaking your head, because you know that you're supposed to be moving it. And they play you radio through headphones that you get. The thing is that you can take a CD and that's my top tip for MRI scans is take a CD of music that you want to listen to and music that will calm you down, because I forgot and I had to listen to commercial radio and it was awful [laughs]. It was really bad. And I couldn't hear the words of the presenters because it was so loud and I had to listen to really, really dreadful pop music. Which I do not like. So my top tip for MRI scans is definitely take a mixed CD or mixed tape of all your favourite music.
 
 

The nurse was joking with Becky during her MRI.

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Age at interview: 23
Sex: Female
Age at diagnosis: 15
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I remember when I had the first one, when I was first getting diagnosed I was sort, 'cos I know a lot of people are sort of like very claustrophobic and stuff and I was just, I was loving it. I remember she was, this woman thought it was hilarious, and she was going, 'We're trying to take pictures of your brain Rebecca but we can't actually find anything.' And she thought it was hilarious and I was like, 'Yeah my love, it's fine.' They just tried to make as you know funny as possible, but yeah I think I found it all quite exciting to be honest.

Young people's top tip for having an MRI scan was to ask to have headphones with music on during the scan, and to bring along a favourite CD!

For some, the MRI scan helped support a diagnosis of epilepsy. For others, however, the MRI tests came back as normal. One woman was told that, even though the results were normal, she might still have epilepsy because she was still having seizures.

CT-scan

A CT-scan (Computerised axial tomography) uses X-rays to take images of the brain. It is not painful and, unlike MRI, it doesn't make loud noises.

Young people who'd had a CT-scan described the machine as 'a giant polo' or 'a big washing machine'. Some were worried about feeling claustrophobic in the scan but one woman pointed out it was OK as you only go partway into the machine. Another described the CT scan as 'painless and quick'. During this test, when the X-rays are taken the person needs to be completely still, which some people found difficult.

Other tests

People we spoke with had also had other tests when their epilepsy was diagnosed. Many had blood tests (to exclude other problems) and a couple had ECG (electrocardiogram, to exclude heart problems). The doctors also tested their reflexes and eye-coordination.

Last reviewed May 2016.

Last updated May 2016.

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