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Epilepsy in Young People

Routes to diagnosis of epilepsy

Diagnosing epilepsy is based on both the person's clinical history and diagnostic tests. There is no single definite test to diagnose it. People are usually referred to a neurologist (a specialist in disorders of the brain and the nervous system), some of whom specialise in epilepsy. A neurologist will usually arrange medical investigations which may not be conclusive and will also consider other possible causes for the events. Here young people talk about being diagnosed with epilepsy and how they were told they had it. 

A few got the diagnosis soon after they went to the doctor, but for many it took a long time to get the diagnosis. Most young people were referred to a neurologist by their GP, but a few saw a doctor privately to avoid delays and long waiting lists. One woman went to stay with her relatives in the USA so she could have all the tests done over there. Going for tests and the process of being diagnosed was often a worrying time for young people and their families. 

 

Maria didn't want to see a neurologist because she felt the diagnosis would change her life. She...

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Age at interview: 19
Sex: Female
Age at diagnosis: 18
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And initially I really didn't want to go and see a neurologist, I was I really, really didn't want to because I knew that it would completely change my life. And it would sort of take away a lot of the freedoms that I'd had but, I started thinking about it more and discussed it more with my parents and with my family and I sort of realised that I can't just wish it would go away 'cos it's not going, that's not what's going to happen so, eventually I did go and see a neurologist, and I got diagnosed the end of October last year. 

Do you remember what it was like going to the neurologist appointment?

I remember being just in such a state and, I remember on the journey there because the hospital where my neurologist is, is about ¾ hour from my house, so it's quite a journey. I remember my mum trying to talk about it with me, and I really didn't want to, so I remember doing everything I could to sort of change the conversation and put the radio on because I knew if she even said anything I'd just, I'd just cry. And that won't get me anywhere, and I remember really vividly sat in, being sat in a waiting room just trying not to shake I was so nervous, and being angry with myself that there was a little bit of me which thought well maybe it's not, because I knew, I just knew because after, after the time in August where it happened for three days, I just spent ages looking it up on the internet, and looking through all my dad's text books and it just, it could've been me having written down my experiences, it was so typical. And so I was angry and frustrated that I thought, just for a split second, “Maybe it's not.” Because I felt I wouldn't be prepared, and I remember I went into the room and I was really touched by how nice and sensitive and sort of gentle the neurologist was in talking about it, and I remember being so nervous and shaky that he had to repeat the neurological exam because [laughs], when he tried to get me to push with my hands definitely to make sure that there was no deficit on either side, I was shaking too much for him to even tell. And then he just asked me to explain the, exactly how long it had been happening and exactly what happened in each seizure, and he just said it was basically just a text book case and he sort of explained to me I would probably have to go on medication and that there are a choice of drugs but he recommended lamotrigine and explained to me what the side effects would be and how I would have to start taking it very gradually. And then said he asked if it was alright, if he got my mum into the room, and explained those things to her. I said it would be, and she did and he did bring her in.

When getting the diagnosis takes a long time

For many people getting the diagnosis was a long struggle. It often took many months, sometimes even years, to get the right diagnosis. The reasons varied. For a few, all the tests kept coming back as normal, despite them continuing to have seizures. There can be delay in diagnosis if, for example, the test results are normal and there is uncertainty around the clinical history, but it is entirely possible to have normal investigations but still have epilepsy.

 

It took Carole four years to get the diagnosis of temporal lobe epilepsy.

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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You said you were 14 when you had your first seizure. What happened in all those years of trying to get a diagnosis? Can you describe why it took so long?

Well, there was as I said I had to get to three seizures before they would even investigate it because people do have seizures due to different things like trauma or shock or something like that, just people without epilepsy. So apparently that didn't take long cause I can't really remember, it was, a lot of people, a lot of talking to begin with, consultations, what's happening and people trying to figure out what route to take I suppose, because as it's not physical they can't, or there's not a specific problem like maybe diabetes it is in your blood so its, they know where to go from there, but with something mentally they don't know. Because there was also phantom epilepsy as well, where people like, where people don't have it but they think that they do so there's a lot of investigation at first. Then a lot of brain, then there was brain scans, like MRIs and stuff like that, as I said they didn't show up anything because it was my scar is not on the surface of my brain so they couldn't see anything, so as they couldn't see anything from there and there wasn't anything specific in my life either like usually it's something that happened at birth. Now my mother was ill during my pregnancy but there was nothing specifically at birth that would have caused it like umbilical cord round my neck or anything like that. I hadn't had any blows to the head, so they still don't know what caused it, so there was also a lot of you know discussion within medical people like, 'Oh well we don't really know what's going on'. So there was a lot of, I think there was a lot of things done, a lot of discussion done behind my back really, not about, you know sort of' within the medical profession there was a sort of lot of if's, buts, whys going on.

For a couple of people establishing the exact diagnosis took a long time because they had a type of epilepsy which was difficult to diagnose. Sometimes this can happen if the symptoms of epilepsy are similar to other conditions or there are differences between the clinical history and the test results.

 

Morven has had all the possible tests but they still don't know exactly what type of epilepsy she...

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Age at interview: 21
Sex: Female
Age at diagnosis: 8
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But mum had noticed that there'd been quite a few times when I kind of just drained the colour out of my face when this happens, so she could see there was something not quite right. So, she went and just spoke to me about it, then we went up to the GP. Told the GP all about it, and he sent us up to the [hospital name] to just to get a neurologist to look at me and see what they could find out. So once we were up there it was well, quite a while to actually work out that it was epilepsy. I had practically every type of test and scan that you could, you could get. But that wasn't really just to work it out, it was, they did know that it was epilepsy, but it was finding the type of epilepsy that it was that was quite tricky with mine. And they practically got fed up with me 'cos I (unclear word). They practically knew me, you know, they knew everything about me by the time they did actually work it out, and the type of epilepsy I've got isn't actually like a named seizure, it's one that's unknown really. It's similar to tonic clonic. But it didn't used to be when I was actually diagnosed with it. It's changed over the years quite a few times. 

A few people had to wait a long time because of delayed and lost referrals and occasionally even lost test results. One person's EEG results were 'misplaced' and she had to wait another twelve months for them.

 
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Katherine's test results were 'misplaced' and she had to wait for a year to get them. She put a...

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Age at interview: 22
Sex: Female
Age at diagnosis: 15
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Do you remember how you felt in the time when diagnosis was unclear?

A bit anxious about what was happening. Then turned 16 and got referred to the adult neurologist, so they arranged for me to have the EEG, for the fits. But they unfortunately lost the results, took them a year to find it.

So how did that happen?

They said they mislaid the results. So we kept on at them and put complaints in, eventually a year later got told I had epilepsy. So it could have been stopped a lot earlier.

How do you feel about that?

A bit angry. That they could have been, I could have been on medication a lot earlier. I think I put a complaint in. Now we've got a full apology.

A couple of people's referrals went missing and they only found out about this because they'd contacted their GP for an update. One woman even had an episode of status epilepticus* (Note, see the bottom of page) while waiting for a referral, which had in fact been lost.

 
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Seeing a seizure in Hollyoaks on TV, and reading about seizures on the internet, made Rachael...

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Age at interview: 25
Sex: Female
Age at diagnosis: 21
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I was sitting down and I was just watching TV and Hollyoaks came on, and, there was an episode where Stef and who's still in it now I think, she has epilepsy and she had a fit in the playground. And it was just like, 'Oh my God,' you know, this is, this is all sort of, I know it's fiction, but it kind of brings it to light and at the end of the programme it always has those cheesy lines sort of like saying if you have any problems have a look on the internet or look on the web. So I started looking it up and I just thought, yeah this all sounds like me actually, it all sounds like this is happening and yeah, I'd sort of have like episode, I'd have these episodes, I remember having these episodes where things just went black and blurry, and you just see lights and stuff, and I'd mention it to a friend and I'd said, 'Oh that's normal isn't it?' and they were like, 'No. You should go and have that checked out.'

 

Rachael had a long struggle to get the diagnosis. First she was told it was nothing, then got an...

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Age at interview: 25
Sex: Female
Age at diagnosis: 21
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I've been to the doctors' and you know they did blood tests and from what I now know from like being in the medical profession, and you know it doesn't really show up anything, so it's a bit pointless doing that, but she says 'Oh I don't think its epilepsy, you know I don't think it's having fits, see how you are and come back in a couple of weeks.' I was just like, 'Oh, okay.' So I went away, within that two weeks I had another fit, same episode.

So I went back to the doctors like she said in two weeks time and, she said, 'Oh your blood tests have come back absolutely fine.' Yeah good, okay, that's a plus point, and I said, 'But I'm still having these, these fits.' And she says, 'Hmm, okay, what we could do is we could refer you to a neurologist.' And I was like, 'Yeah, that'd, you know that'd be good.' Just to check it out. Just to make sure everything is alright. So they put the referral all through, and unfortunately what happened is they put it through as an emergency referral and they said that I should like get an appointment within three weeks. Unfortunately it, the doctor apparently who I saw, the GP that I saw was quite new, she didn't even know how to use the computer which was quite weird like she was trying to type things in and couldn't spell and stuff which I thought was a bit strange.

I went back, manage to get back and it was like no there's not been a referral put through, and you just think, 'Oh no' and I said, 'I've just had this fit again and you know I said you know I'm just, it was really starting to affect me because I was having to have time off work 'cos you take like a day to recover afterwards, and I said I could really do, could really do with seeing someone and getting this sorted. 'Cos it seems to just be getting worse, they're becoming more, they were becoming more frequent and they seemed to becoming more violent as well and also as well they seemed to be seemed to be getting a bit like, I'd have one, and then I'd go straight into another and then straight into another again, and you'd know when you'd sort of had a really bad fit from how rubbish you felt the time afterwards. 

And so, the doctors like apologised loads and they were like, 'Oh we'll put you through.' And they said to me but the best thing is next time you have a fit, call an ambulance, go through A&E because that's the best way to get seen straight away. I was like, right, I'll do that.

A few people had a long wait for the diagnosis because doctors thought they were experiencing 'dissociative-seizures' (seizures caused by psychological factors) or 'faking' their seizures. One person was discharged and doctors later refused to see her because they believed she was feigning her seizures. Not being taken seriously made these people both very angry and sad. Dissociative-seizures are a type of seizure and those experiencing them are not ‘faking it’.

 

Rania was told her seizures were 'attention seeking' and she was told just to exercise 'mind over...

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Age at interview: 16
Sex: Female
Age at diagnosis: 15
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When I was younger, I just, I didn't really you know notice it, or see it as anything. I remember things like I use to fall down stairs or like that, but it's only when I got older, you know, into my teen years and I realised that there was something wrong. 'Cos you know I was passing out everywhere and having seizures, and I was told I didn't have epilepsy, and that, well I was diagnosed with it as a baby and I got told I'd outgrown it when I was eight. And that's about it really, there was nothing wrong, and it was you know just feinting or attention seeking they, I got a lot of different reasons from different doctors as to why.

What sorts of reasons?

Well one doctor thought it was attention seeking, another one kept speaking to me, saying it was due to mental issues and was speaking to me about mind over matter and explaining that if you want these sort of things to happen they will and that. And that was just about it really.

And how did you feel when people kept telling you know it's this, or its faking? Do you remember at that time how that made you feel?

Sometimes, you just, you know there's something there but at the same time you're doubting yourself.

You know when people tell you there's nothing there and that, and you have so many different people saying oh it's nothing, you sort of think well you know it probably is nothing because it's only me that thinks it is so.

Yeah. Did you challenge the doctors? Was it possible to say to them look this is what goes on for me everyday?

After a while you just sort of give up and think they're not going to believe me anyway, whatever I say, maybe I am just you know making it up or it's all in my head.
 

A few people said doctors first suspected another cause to their seizures than epilepsy, such as diabetes, migraines, ADHD (Attention deficit hyperactivity disorder) or heart problems.

 

Kimberley's epileptic seizures came back after several years and her mum first thought she was...

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Age at interview: 17
Sex: Female
Age at diagnosis: 6
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Yeah, so when you, so you had the diagnosis when you were quite little, did you have any seizures then at all?

A couple, then it stopped and I was off for a while then, the doctor stopped my medication, then I started taking them last September/October.

The seizures?

Yeah.

And how did it come back? What happened?

Well I was on holiday and my mum thought it was a diabetic fit then she took me in to get a sugary drink and we went back to the apartment to check my blood sugar, then my blood sugar was high, so it wasn't that. Then I came back from to' home got an appointment from the doctor and found it was epilepsy, back.

For many, waiting for the diagnosis was the worst part of their experience and some said they would have liked more information and explanation at this time. People found this time extremely frustrating and confusing, particularly if 'different doctors kept telling different things'. One woman felt the doctors were 'slack' in getting her results back to her.

 

It took Francesca a year to get the right diagnosis. She was 'left to get on with things', which...

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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In that time before you got the right diagnosis were you at that time treated or were you on medication?

No I wasn't on any medication or any sort of treatments. I was just sort of left to get on with things, which I felt very frustrated at first, and I was like why can't they do something for me, why aren't they doing anything. But I think they thought may be side effects of medication if it wouldn't work would be something to contend with rather than just sort of putting up with the seizures.

And how do you feel about' because it was a long time before you got the diagnosis. How do you feel about all that time that it took and the effect it had on you not getting it earlier?

I think it took longer than it should have taken. They should have been able to diagnose me, pretty well straight away, I think. And I think it did affect me. It affected friends more than anything they sort of became oh I don't really want to go out with you, you know, I don't really want to feel responsible for you and all this sort of stuff and I think the most important thing at that time was it really highlighted to me, sort of who your friends are who aren't. But I think that was probably the most major thing about the waiting for so long for a proper diagnosis.

Getting the diagnosis quickly

A few young people had a more straightforward experience of getting the diagnosis and were diagnosed within weeks of seeing the specialist and having tests. One person's doctor told her that her seizures were a 'textbook case' of epilepsy and given the diagnosis straight away.

 
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Rosie got the epilepsy diagnosis soon after her first seizure, based on test results and her...

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Age at interview: 22
Sex: Female
Age at diagnosis: 10
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My parents weren't told of any possible epilepsy [when she was born] but because of the brain haemorrhage that it was more than likely that I would have cerebral palsy, most likely severe quadriplegic. However it is only mild one sided, affecting my right side (hemiplegia). My parents were told that I'd be severely disabled, have quadriplegic cerebral palsy, unable to walk, talk or be any way near independent, unable to breathe on my own, probably be blind, this was all in the first 3 months of my life. Once it became apparent that I would survive the only thing they knew was that I'd be able to breathe on my own but they thought I would be blind because I didn't open my eyes until 40 weeks gestation, and the prognosis was I'd never walk or talk or be independent and have severe learning difficulties. I do have learning difficulties in association with the cerebral palsy too; but they are mild. I have problems in understanding, expressive language, understand what people are sometimes meaning

No-one expected me to live the first 12-24 hours then it was the next 48 hours, then it was the next 3-4 months they didn't expect to survive; basically they never expected me to survive at all, which doesn't surprise as premature survival at that gestation in the 1980s was almost unheard of. I was the first baby under 30 weeks to survive at the hospital so they thought of me as something of a miracle. There was no mention of epilepsy until it was diagnosed.

When I had my first seizure I don't really remember what happened in the lead up, it's all a bit blurry. I was taken straight to A&E as I was in public. The nurse then took my parents aside for a chat and I was then transferred to [town name] for overnight observation. Shortly after discharge I went for an MRI, between which time I had a further seizure that I can't remember. Consultants, after looking at the MRI results, immediately diagnosed epilepsy, and because of my medical history, it was very likely that I had epilepsy.

'I was born at 24 weeks gestation in 1984 so was very premature, and this lead to a brain haemorrhage whilst in hospital for 5 months, and later, a cerebral palsy diagnosis at 2 years. These 3 things combined were ultimately the cause of my epilepsy as have been confirmed by MRIs and EEGs.
 

One man was told straight after his first seizure that it was 'obvious' he'd had an epileptic seizure. Another got the diagnosis quickly with an 'emergency fast track referral' after he'd had two seizures within a couple of weeks.

Being told about the diagnosis

Young people were told about their diagnosis either at the epilepsy clinic or by a letter. One woman's doctor, whom she saw privately, came to her house to give her the results. A few people actually got to see their scan images or EEG results. 

A couple of people who had their first few seizures in childhood were told that, although they could have epilepsy, doctors were careful about confirming the diagnosis because they could 'grow out of it'

 
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As a child Finlay was told his seizures were basilar migraine but later found out it probably had...

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Age at interview: 21
Sex: Male
Age at diagnosis: 11
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And at that point went to the hospital and they had a look at me and then they went, 'Well we think that it's basilar migraine seizures'. Now at that point I was like, 'Okay, that's what I have, that's cool', I thought, at least it's not epilepsy it's this other thing, and only years later did I find out that in a lot of cases of people my age like eleven or twelve, that kind of age, they term it something other than epilepsy because it doesn't follow you in records. Because so many adolescents grow out of epilepsy. They did say, well it's easier and more productive in the long run if we just never class it as that, and that way if they grow out of it no one's the wiser, kind of thing, and it doesn't follow you in your driving record or anything like that, so that's what I found out later on, but at the time I was like, 'Okay, basilar migraine seizures, great'.

But then, when I was sixteen I got transferred to the adult hospital, and then the doctor, I remember the doctors at the children's hospital had been quite, 'But why, and this is what you have and it's fine we can deal with it' and at the adult hospital they were quite blunt and I met this doctor for the first time in this proper scary adult hospital and he said, 'Finlay, you have epilepsy, you do not have basilar migraine seizures at all'. I was so shocked at that point, because I remember them at the young children's hospital saying, 'Let's not call it epilepsy because it will change your life if we call it epilepsy, let's keep this because we don't know for certain that it is epilepsy, we shouldn't label it as that because that can have effects. So if we don't know what it is, we might as well not go the full way and say it's epilepsy.' By the time I got to the older hospital and they said you have epilepsy and you need to deal with it now. And that kind of upset me because there were no tests in between my transfer, there was nothing new, I'd been living the way I was living anyway, so one set of doctors interpreted it one way, another set of doctors interpreted it another way, and the second set just said, 'You have epilepsy.' 

A few were told they would grow out of epilepsy by their teens or later on because of the type of epilepsy they were diagnosed with, but when this wasn't the case it was a big shock.

 

Martyn was told he might outgrow his absence seizures but when he later developed tonic-clonic...

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Age at interview: 22
Sex: Male
Age at diagnosis: 12
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I was told you could grow out of it there's a good chance which made it devastating for me to develop a new type actually. I remember the day I came back from, school after I'd, after I'd had this fit, and it was a sort of crashing I remember. I like to sort of play with a piano and write sort of music and I think I wrote the most depressing song in the world [laughs], just it was hard, it was a hard thing to take because, obviously it's literally life altering, you know, especially if you've been told there's a possibility of it going away, and it was quite well controlled and then this comes around it's, it's a big smack in the teeth. I think, I'm trying to remember, I think my grandfather was really, disappointed as well 'cos he had epilepsy and he'd always worried that it, it had been his fault, he'd passed it on to me. They never found it, I don't think it's genetic in any way but, but there was no reason for that. But, it was definitely a punch a kick in the teeth to feel that.

Hearing about the diagnosis came as a shock to some, and as a relief to others (see 'Feelings about an epilepsy diagnosis'). 

 

Gemma felt reassured by her doctor who told her of the many famous people with epilepsy and of...

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Age at interview: 17
Sex: Female
Age at diagnosis: 16
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Basically that the EEG had shown that there was some sort of abnormal activity and that they were pretty much sure that that was what it was that it was epilepsy, and that they needed to start me on the medication, and basically that, hopefully that would help and I'd be sort of free from the seizures or they'd be controlled. And they also helped by telling me, I can't remember any of the examples now, but there's quite a lot of, sort of more famous people that have epilepsy and you know, you don't know, from seeing them on the telly or anything else like that so, I think it really helped just to know there was lots of other people, and to know there are lots of people my age. I was told that my consultant had lots of other people that were my age and that were sitting exams and that they're all doing really well so it wasn't something that, you know, you've got epilepsy that's your life over sort of thing, so it was really encouraging to know that.

*Status epilepticus is a prolonged seizure or a series of seizures without the person regaining consciousness in between. Status can be convulsive or non-convulsive. Status epilepticus is an emergency and requires immediate medical attention.

Last reviewed May 2016.

Last updated May 2016.

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