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 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'.
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...
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'.
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.
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...
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.
For Carole, it was a week's video telemetry that finally made her diagnosis clear.
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 (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.
Francesca says the MRI was quite difficult for her and she was not given any music to listen to.
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...
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...
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.
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.
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.
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.