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Epilepsy

Finding information on epilespy

Most people we interviewed said that they knew nothing or very little about epilepsy before they were diagnosed. A few said they knew something about the condition through the experiences of other family members with epilepsy or through first aid training at work.

People sought information on epilepsy from various sources. These included leaflets, books, epilepsy organisations, support groups and the internet.

While some people felt that they would have liked more information from doctors, others were satisfied with the information they had been given. Several said that they found some consultants more informative than others.

 

Explains that she would have liked more information from doctors.

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Explains that she would have liked more information from doctors.

Age at interview: 27
Sex: Female
Age at diagnosis: 26
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Would you prefer it if they told you why they've done the MRI scan and what it shows? 

Yeah what's going on, why am I like this and why is this medication not working and what's happening with me. It's just them, just changing the medication from one dose to another dose or from one drug to another drug, that's how it is. And they don't say 'Oh we did the scan and it showed this,' and 'it showed that' because they think oh maybe she wouldn't understand what we said to her. But I have done biology! (laughs). If they explain to me I would understand. Because if I had been given information about epilepsy and I had talked to certain individuals who have been through what I have been going through, and what I have been through, it would have been so much help to me. But I haven't had any kind of help whatsoever, or information. 

I want to know what other people go through when they have an aura and what they go through before they have a fit, and how long their fits last, how long their auras last and um, what kind of sensation and feelings, when they most likely have a fit.  And I heard that if you get fits regularly you can slow it down and you know when you're gonna have a fit. So I'd like to know how it slowly decreased and eventually if they were more in control of their life and their fits. You know how they slowly begin to control everything and made it OK, could control their life more. Because right now I can't control my life, I can't control anything. 

That's how you feel? 

That's how I feel because I have to rely on everybody, I can't do anything by myself. 

 

Explains that he is satisfied with the information he has been given.

Explains that he is satisfied with the information he has been given.

Age at interview: 80
Sex: Male
Age at diagnosis: 74
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And when they diagnosed you with epilepsy did you know much about epilepsy?

No, nothing.  Nothing at all.

Nothing.  Did they give you a lot of information about the condition or did you look for some books?

No, I mean I think Professor [name] was the first one who really gave me an insight into the illness.

Did you feel like finding out more information about epilepsy, or you've been pretty happy with the information?

Well I've had a lot of pamphlets sent to me from the office of Professor [name] , leaflets and things. That's all I've asked for.

Yeah, and you felt that you've had enough information, there's not more information that you would like on anything?

I haven't looked for anything else. I mean I believe that doctors give you everything you need so why should I! (laughs).

 

Explains that some consultants were much more informative than others.

Explains that some consultants were much more informative than others.

Age at interview: 42
Sex: Female
Age at diagnosis: 6
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Well certainly when I was younger from the time I was a child to the time I left home when I was what 19, the consultant who was treating me then was somebody who spoke to me as an individual.  He didn't speak through my mother, he didn't speak to my mother and ignore me or anything like that. He spoke to me. And he gave, I felt my understanding of epilepsy was complete as a result of that. He fed me all the information that I felt I needed. I felt perfectly confident in his hands. Any questions I did have he answered on my terms and gave me a good feel and understanding of anything that was worrying me. And so there were no questions at all really then because even my GP he was a family friend, he was somebody in the locality whose children I played with and he understood every aspect of it and again was very easy to talk to, very easy to explain things to me and it was very easy for him to understand some of the social issues which again a lot of GPs, even though they're well meaning, can't really. 

From the time I was sort of early 20s to mid-30s I had a consultant then I'm afraid I had no patience with.  His attitude was well 'you shouldn't ask questions, you're just the patient, you wouldn't understand, you do whatever you're told,' sort of thing, and that frustrated me. Because there were times, I think now looking back certainly I knew more than he did about the condition. He saw me sort of once a month, or at least every twelve months rather for maybe half an hour at the most so what the hell does he know about my situation. If I asked questions because I got no answers I finally went through a relative who was quite high up in the medical world, she got me to see a doctor in Harley Street who was very highly respected in the field, he answered all the questions that I'd been asking for years. And I think when my own consultant realised this had happened his attitude to me changed immediately and suddenly he was very polite and respectful and as a result of that basically I just changed my consultant. I'm now with one who I feel is very straight all the time; gives me all the information I want. 

People also discussed the leaflets they had read about epilepsy, given to them by health care professionals. For some, epilepsy nurses played an important role in giving information and support. Many people had joined epilepsy organisations and recalled the valuable information and advice they had received through them. A few people became accredited volunteers for epilepsy organisations, and discussed the benefits of this.

 

Discusses being an accredited volunteer for an epilepsy organisation.

Discusses being an accredited volunteer for an epilepsy organisation.

Age at interview: 30
Sex: Female
Age at diagnosis: 17
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I suppose my, the people that we've used for epilepsy knowledge were mainly The British Epilepsy Association. They've been fantastic, the literature they provide is excellent. And also I'm now actually a trained accredited volunteer with them [epilepsy organisation]. And that means that I can go and lecture on epilepsy or talk to people who have been newly diagnosed with epilepsy. And I enjoy doing that very much, I feel like I'm putting something back.  

Did you always feel that with the information your mum gave you and looking on leaflets and Internet, that kind of thing, did you always feel you had enough information generally on epilepsy?

Yes. And how, and doing the Epilepsy Action volunteer course, that really helped because it gave you a different, well a) it made you look at everything from every angle and you had to do tests on it which you know was good. Yes you think you know something but actually you don't know it as well as you think you do, so yeah that's helped.

Several of those interviewed recalled seeking information from books. One woman, whose epilepsy was diagnosed at the age of 11, explained how she looked for information when she was a bit older. She also discussed the importance of the internet as an information resource.

 

Discusses searching for information on epilepsy when she was older and the importance of the...

Discusses searching for information on epilepsy when she was older and the importance of the...

Age at interview: 21
Sex: Female
Age at diagnosis: 11
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Did you read a lot about epilepsy once you found out you had epilepsy or over the years have you read anything about epilepsy or the treatments, or living with epilepsy, or gone on to websites?

Not when I found out about first having epilepsy because of the age I was at the time. I knew vaguely at the age I was what it was. And I know that, I know that when I went to secondary school and going through GCSEs the teacher first mentioned, it was mentioned once in class in science '...and also neurological conditions such as epilepsy,' and then my ears perked up you know in class sort of thing. But that was it, that was as far as that subject went. But obviously  in my older years I've bought a couple of books and read up on it but the information's all been, its all been same sort of information really. 

But with websites, they've always been very informative. The thing I've enjoyed the most with websites have been chat rooms really because they've always very interesting when you can actually get out there and speak to people that have got the same condition as you have. Especially when you have the opportunity to speak to people that maybe are on the same drugs that you are and they speak about the conditions and the side effects that they may have. And the problems they may have with side-effects, just so that you can say 'Yeah I've got the same thing, I know what that feels like,' so you can kind of bond with other people, so you all know what it all feels like. So in a way, you know that you're not alone out there. 

The internet was a useful information tool for many people. One woman discussed the benefits of finding information on the internet, but felt that the North American websites were often more informative than the European. Another woman explained that, although she wanted more information about epilepsy, she found some of the information on the internet frightening.

 

Discusses the benefits of searching for information on the internet, and found some sites better...

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Discusses the benefits of searching for information on the internet, and found some sites better...

Age at interview: 18
Sex: Female
Age at diagnosis: 14
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And over the years have you looked for information on epilepsy yourself?

Yeah, a lot. 

And have you found it useful or, where have you looked? 

On the Internet mostly, and when I ask around I'm actually surprised at how many other people have got it or know someone who has got it. Having said that I'm also surprised at how many people don't know anything about it you know, because even before I was diagnosed I knew it existed. But I'm a bit scared actually by some people's responses, like my friend said 'Oh if you're convulsing on the floor you have to stick a spoon in your mouth.' I was like 'No!  Don't put a spoon in my mouth.' She was like well that's what I was taught in First Aid. The American websites are more honest than were British ones so it's quite, it's worth looking. 

When you say they're more honest, they give you more information or?        

Yeah they give you more information about all of the side-effects. A lot of the effects, a lot of the information was sort of classified on British websites but I found that the American and Canadian ones you get far more information.

 

Explains that she found some of the information on the internet frightening.

Explains that she found some of the information on the internet frightening.

Age at interview: 53
Sex: Female
Age at diagnosis: 51
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Did you look for information on epilepsy at that time?

Yes, yes I looked for information on the internet, I found the site of the British Epilepsy Society and to be honest I found their site quite scary. Er it dealt with some very heavy topics, I felt, far too heavy for little moi with my mild petit mal er so I didn't get very far with that. I did look for support groups on the internet and I didn't find any, at least not anywhere near me. I suppose I ought to look again. Er but basically I found a lot of information on the net very frightening. I didn't find it very relevant to me at all. I didn't find that much information on what I have got which is apparently called atypical partial seizures. My sister, who is a doctor, also looked on the internet and she also looked on those sites which are available for doctors. And she didn't come up with much either, not much that she felt was useful. She printed me off two or three papers but apparently most of the work on atypical partial seizures is done on children er so she found me some stuff on that. But no I didn't find it very, and I'm quite good at finding things on the internet, I mean I spend a lot of time on the internet so I was a bit disappointed.  

One person became interested in seeking information on epilepsy when she wanted to change medications. She also recommended researching and learning about the condition. Many people were surprised to learn about the number of people with epilepsy. Several people explained that they would have liked more information about diagnostic tests for epilepsy and drug treatments. Others said they benefited from attending support groups, and that they valued information about the experiences of other people (see Sources of support for people with epilepsy).

 

Describes seeking information on epilepsy when she wanted to change drugs, and recommends...

Describes seeking information on epilepsy when she wanted to change drugs, and recommends...

Age at interview: 28
Sex: Female
Age at diagnosis: 19
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You mentioned that you found the Internet really helpful in terms of finding information. 

Yeah. 

Did you find any information from books or leaflets at the hospital or anything else as well, or mainly the Internet? 

Mainly the Internet and also some things that the doctors gave me as well. But to my own surprise I never really started looking into it thoroughly until this year when I decided I'm gonna get off this Vigabatrin, and then I started really researching, really looking into the drugs, looking into all the drugs and reading on the Internet sites about what people's experiences were with the drugs that they'd taken. There's a lot of message boards around, associations, and just generally you know message boards about epilepsy and people saying 'Yeah I've taken this drug and this is what it did to me.'  And people asking questions' 'My doctor wants to put me on this drug.  What do you, whose had experiences with it?'  And its brilliant for that, its really, really good. 

'So yeah that's what I, I'd definitely say to anybody whose embarking on any kind of medical adventure, you know, know what you are talking about and the Internet is brilliant for that. There's so much information, there's so much misinformation as well, so you've got to have your questions and ask the questions. And get the doctor's opinion, so he'd say, the doctor says 'I want to do this, this and this.' And you say 'Well that's your opinion, why is that your opinion, why do you want to do that.' Just always ask the 'why' question. And that, that works out, you end up being treated differently by the doctor. They treat you like you're, they don't talk down to you, they don't condescend to you; don't allow them to, you know that sort of thing.
 

Explains that he was surprised to learn how many people have epilepsy.

Explains that he was surprised to learn how many people have epilepsy.

Age at interview: 52
Sex: Male
Age at diagnosis: 15
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I went to the library when I was 18 or 19 and said 'Have you got any books on epilepsy?' And the chap said 'No.' He said 'You'd better try the hospital.' And I said 'Well have you got anything on medical conditions?' And he said 'Well a medical directory, a medical dictionary,' he said 'but you can't take it out.' And the epilepsy description was very much a very medical, what has happened. I couldn't find any, anything that talked about, there are lots and lots of different seizures. I think the thing that would have been most encouraging if only I could have found out was just how many people suffer epileptic fits. I mean it's the most common neurological disorder and is it one in three people will suffer an epilepsy seizure at some point in their life. If I'd known that I'm sure things could have been different. 

Were there questions over the years that you had about epilepsy that you felt were, were never answered? 

No I think I was given sufficient information, looking back on it I wish I had a great deal more information. Most of all I wish I had realised just how many people do go through aspects of this.

People also discussed areas where they felt information was lacking. Some women explained that they would have liked more information on epilepsy and pregnancy (see 'Women and epilepsy'). One man said that he would have liked to learn more about non-epileptic seizures. Other people discussed the need for more information on and research into SUDEP (Sudden Unexpected Death in Epilepsy).

 

Discusses the need for more information on and research into SUDEP.

Discusses the need for more information on and research into SUDEP.

Age at interview: 45
Sex: Male
Age at diagnosis: 26
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Sadly in the mid '90s my brother died from epilepsy, from SUDEP. I was fully controlled then and driving and that was quite a shock because I'd, although I'd heard of the word SUDEP, it's one of those things where a) you think it never happens to yourself or anyone you know or it hadn't, it wasn't talked about much anyway. 

Looking back on it now, even though the recent audit has shown that a certain amount of people can die from the condition if they're not controlled, I still think that compliance with medication and lifestyle and quality of life, if they are looked after more, if the patient actually takes a bit more notice and the doctors work in unison with them, there's less chance of them actually dying from this condition.

Are there any questions that you have about SUDEP that you feel have never been answered or? 

I think the recent audit showed more the actual numbers of people who have died from the, from that part of the condition.  There is still a long, there's still a lot of research to go on because they're still not sure even nowadays whether it causes the heart to collapse, sorry the, they're still not sure even today whether its to do with it causing the breathing to stop, whether it's the heart or whatever. A  lot, lot of clinical research has to take place to actually find out the reason why a perfectly healthy person can actually die from the condition in terms of SUDEP itself, definitely. 

In terms of SUDEP I think I would agree with the 'Epilepsy Bereaved' charity where the subject obviously has to be handled in a very sensitive manner.  I think with people who have uncontrolled epilepsy and they've been uncontrolled for a long time, I think they ought to be told about SUDEP, most definitely. One of the things that's, that's been spoken about on the radio and in the audit recently that was published, is that very few people were told about that it can happen and one of the most common reactions from bereaved relatives is 'why weren't we told about it?'  

Epilepsy Bereaved is an organisation dedicated to preventing death from SUDEP, raising awareness and offering support to families. For more information you can also visit our website on Young people with epilepsy.

For more information sources see our resources section.

Last reviewed May 2016.
Last updated May 2016.

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