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Epilepsy in Young People

Anxiety and depression and epilepsy

Many young people we spoke with had experienced anxiety or depression because of being diagnosed with epilepsy, as a side effect of epilepsy medication or for reasons not to do with their epilepsy. Here they talk about these experiences and what had helped them overcome or cope better with anxiety and depression.

Anxiety, depression and epilepsy

The relationship between epilepsy and anxiety or depression was complex for young people; it wasn't just feeling down about their diagnosis. Most people who had had anxiety or depression said it was connected to their life situations, such as problems in the family or losing a relative.

 

Anxiety, stress and seizures are all intertwined says Finlay.

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Age at interview: 21
Sex: Male
Age at diagnosis: 11
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I was having these anxiety attacks and I went to see a psychologist and she talked me through it and ways of me calming down. They're so similar to auras, it's difficult to tell them apart and sometimes I think they are one and the same, maybe I'm having the anxiety attacks when I'm having an aura, and my brain knows I'm having an aura, so it's just overload, and I start to panic. It's very hard to kind of go well it's because of epilepsy because I think it's part of epilepsy almost. It's just part of, it's one of the side-effects of epilepsy that it happens to manifest itself in my life because of my circumstances. And because I've been sometimes like slightly depressed, it's part of that as well, it's all intertwined and I find it very difficult to kind of pick apart and go, well I have anxiety because of epilepsy, because I don't think that's the case really. I think it's all just different factors that come together to make me and I've had anxiety attacks but they're a lot better now. I've never lost control in a long time really since I've had like these classes, the breathing exercises. And part of it is that I breathe up here and you're meant to breathe down here, and that's part of epilepsy as well and when I have my auras my breathing goes very shallow and goes right up here. And then I have seizures and I've no idea what my breathing is like when I have seizures, but I imagine it's quite tight and quite fast and quite shallow because I wake up knackered and really out of breath.

For some, anxiety or depression only started after they were diagnosed. One woman started having anxiety attacks after she was diagnosed, especially after she had a couple of severe seizures which made her feel anxious. 

 
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Charli has had anxiety attacks only after her most recent, severe seizures.

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Age at interview: 23
Sex: Female
Age at diagnosis: 18
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Did you have panic attacks or anxiety before you had epilepsy?

Mm-mm, no way, even after I was diagnosed with epilepsy, up until the most recent fits last year, which were, they've been like the most scary ones, the most severe ones. I was fine, I'm so confident, I'm usually really confident, outgoing, bubbly, energetic, bouncing off the walls, like, so it has affected me I mean in that way because I don't think I'm as bubbly and confident anymore as what I used to be.

So you think it's affected your confidence a bit, or a lot?

Not a lot, a bit. I mean I'm still bubbly, when I forget about it, I'm fine and get on with my normal life and being myself and being bubbly and still being like that. But I dunno I think it has, obviously it's affected me a little bit. Because I'm worrying about it, and when I'm worrying about it obviously I'm not my bubbly self yeah I suppose so. It's a shame really, so I'm just always so lovely [laughs].

[Laughs] Part of the process I'm sure as well, like you were saying that you feel like you're getting better now?

Yeah, yeah I do, but then I have certain days when I feel, a bit weirder than the other, depending on how I'm feeling, if I'm a little bit stressed out. Like I said I'm a worrier, so the little things worry me, money, bills. Like I don't get a lot of money so I have to really scrimp and save and sort of make sure everything gets paid and so I am worrying a bit about money. But I try not to let myself get stressed out.

One man compared the experience of having an anxiety attack to having an aura:

“Sometimes having an anxiety attack is very similar to having an aura and so I found it very difficult to differentiate between having an anxiety attack and having an aura.”

One woman said that, when she was diagnosed with epilepsy, her GP had insisted that she was depressed. She herself felt she was just dealing with the blow of being diagnosed, and her life was chaotic for a while. 

For some, anxiety and stress triggered seizures and trying to manage these factors helped people have fewer seizures. However, some said it was a vicious cycle; the more aware they were of anxiety and stress triggering their seizures, the more anxious they got, which made them more likely to have seizures.

 

Charli gets stressed and anxious about the possibility of having a seizure.

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Age at interview: 23
Sex: Female
Age at diagnosis: 18
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It's just stress really, like I mean I've had a couple of stressful patches over the last year and like stressful patches relationship-wise when I stopped eating and really didn't look after myself very well. But the stress can make you feel very anxious and it's not nice, 'cos you just feel on edge all the time and you feel like 'oh am I gonna have a seizure? I don't wanna go out because I might have a fit', like on the street. There's been times when I've been walking in like department stores looking at clothes and it's all just got too much for me. And I started feeling strange and I just had to get out but I really need to start sort of not thinking about it as much because even now I still think about it a lot, like a few times a day. But I need to start to forget about it, I might go and see my, we have an Epilepsy Nurse at the hospital which I go to, and he's really lovely, he's a really nice bloke. And if I do have any problems I can always ring him, or go and see him, so I think I might go and have a chat with him soon. Book myself an appointment and go and have a chat with him about the anxiety, and whether he can suggest anything. Because it's not a nice feeling when you feel like you're gonna have a fit, and you're worried about it and but it's just, ah it's a strange one.

Is it constantly thinking about it?

Yeah just, just worrying about it really. Just worrying that it's gonna happen, and who's gonna be around? Is there anyone gonna be around and when you have it to help you. But I worry for nothing, I'm a bit of a worrier anyway so I think I'm really worrying for nothing but I need to get my head round it is nothing and I'm just worrying unnecessarily. So he might be able to help me with that and I think it's just taking your mind off of it. I think if my mind's occupied with stuff, I'll be alright but it's when I'm not doing anything and my head's reeling thinking about things, yeah.
 

For some, coming to terms with the diagnosis had been really hard and the blow of the diagnosis had made them depressed. Some felt they were prone to getting depression anyway, because of their personality or family history. 

 

The 'psychological blow' of being diagnosed with epilepsy, together with her personality, made...

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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To what extent do you feel that epilepsy diagnosis and everything that came with it, was the cause of depression or do you think it was only that? Do you think that was the cause of your depression?

That's a very good question. And one that in my own case I can't really extract the causes of it. I would say that in my years before I was diagnosed, it seems so so simple looking back what is it, as a teenager, at that time' No I did feel life very deeply and things affected me and I know that before the evidence of my epilepsy ever arose I was inclined that way, towards a depressive nature. But certainly I say again the psychological blow that the epilepsy brought whereas life had been open to me before I was very much one of will, and I was going out to get the world and I was going to do it, I was able, I was able and active, in the mind and in the spirit, and it just felt as though this diagnosis had, again something I didn't admit to myself, that it had killed something in me [laugh]. Which is why I say it's only now that I'm able to find that there's a new life to be had. I've been reborn [laugh].

What do you think has helped you to get through it?

Time. Time quite largely. I should've made more of support. I did attend an epilepsy support group once this past spring, very late, well I had been enduring all of this very much alone, very much alone because I don't have much family support, much friends support. I'm a solitary soul, and yes this is why I throw myself into depression, I suppose.

 

Zoe describes what living with depression is like for her.

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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I'm certain as well that a large part of it has to do with my own imbalanced psyche. It's, it gets very very dark indeed. I crawl into a little hole, a very slippery hole [laugh] and I can't get out. I've turned very reclusive, I can't cope with life outside, it's all outside of me, or people. I can just barely cope with basic life activities, just stay alive, sleep, eat, breathe, it came to that by this, this past spring, it was very bad indeed. 

And to try to be sustaining a degree at the same time, yes it made things very difficult. My studies were very much affected, and I wasn't able to paint. Tragic, tragic indeed. I was late on some written work, and actually that, that has been an issue. As I say, oh, yes of course' As I say clarity of thought, exactly that, that is the issue, that was the issue, it's slowly coming back, would you believe it.

One woman felt depressed before she got the epilepsy diagnosis because she didn't understand that her strange experiences were actually epileptic seizures. When she got the diagnosis and could understand her experiences better, it helped her depression as well.

 
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For years, Helen didn't know her experiences were seizures and she felt like a 'freak'. This made...

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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Because I considered myself to be a freak. When people told me at school that, I mean they didn't know I was having these seizures, but when they told me I was a freak I believed them and so keeping it all inside was really difficult. It made me very depressed. It made me very troubled. It made me write very bad poetry. It was very difficult to contain. And how did I manage to keep it together. I mean I just did and because I was so used to being insular and not talking to people. My dad especially was very worried about me at one point that I wasn't ever going to talk, that I was just going to sit in a darkened room and read books for my whole life and that's how I was.

A couple of people had experienced severe depression when they were recovering from brain surgery for epilepsy. They said the recovery from surgery had been slow and psychologically very difficult, despite counselling and taking antidepressants. Depression is a recognised complication of temporal lobe surgery but affects only a small minority of people.

 

Donna had severe depression after brain surgery. Counselling, antidepressants and time helped her.

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Age at interview: 28
Sex: Female
Age at diagnosis: 3
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I had to adapt to sort of life afterwards you know, without it, which, it has taken me a year and I'm finally now seeing the light at the end of the tunnel. And through all my bad times I had over the last year, I've always said that having the surgery was the best thing I ever did. It was the hardest thing I've ever done, the actual process of it. The physical healing was nothing, it was the mental healing that I struggled with, the mental side of it, not the physical side of it, because physical pain goes away easier than what mental and emotional. See it's 25, 26 years worth of pain built up and it's all just poof, it's all sort of come to an end. It's great, but it's not been easy, it's really really been so difficult because you know it's just been such a part of my life for a lot of years.

I really struggled after, I had a CPN [community psychiatric nurse] for a little while and then I just saw a counsellor on a weekly basis. And then before Christmas I was really poorly again and now I'm under a psychiatric nurse, which, you know she's helped me a lot, I'm picking myself up a lot. Again I've always found that with epilepsy you're not allowed to be depressed. Because of my anti-epilepsy drugs, they've always been a bit, 'Oh, you know don't, we don't want to mess about,' but I'd come to the stage where somebody had to give me something to help me, there had to be something that I could take that wouldn't upset my system and my tablets, and there was. I've been taking them for, I don't know well since January I think. And although now I feel I'm ready to come off them, the consultant psychiatrist says you can't run a marathon with your shoe laces tied. That's her saying, she's lovely.
 
 

After brain surgery, Darren experienced depression and attempted suicide twice.

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Age at interview: 19
Sex: Male
Age at diagnosis: 11
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Went to college, and I was still having seizures then, and they were still just like they were, they weren't as bad as school really. But I had to quit early 'cos I had depression at the end of the first college year because it was really getting to me, and other issues as well. So I went into hospital with depression , came out of there after three months to go into hospital to have the operation and spent a few days in there after the operation. But then come back out and after about a day or so, went back down with major depression, one of the side effects of it. Went back into hospital, three more months. come out, I still weren't a hundred percent there was still a chance of me going back into hospital, but I didn't in the end.

I was having a pseudo-seizures I think they're called, where you just, it's like a epileptic seizure, it's what you get when you're, like really depressed, you just kind of lose control and you just don't know what you're doing. That's what they said I was having 'cos I was like really, really down. I did actually attempt suicide a couple of times but ' nothing, nothing major.

At what point was that, before you went to hospital or?

Yeah one was before I went to hospital and, like, once in hospital as well. But nothing much really. I think they were just more cries for help.

Do you think that's what it was for you?

Yeah.

Did you feel like that at the time or is it different now looking back on it now sort of a couple of years later?

Different now I look back on it. At the time I, you know, probably felt like I wanted to die but, now I look back on it, it's probably they were just cries for help.

Experiences indirectly related to epilepsy also contributed to young people feeling depressed, for example being bullied, or not having friends or good social contacts because their lives had revolved around seizures and treatments.

Many people also said that epilepsy medication had made them feel depressed, anxious or paranoid (see 'Medication side effects'). For one person these side effects got so bad he was admitted to a psychiatric ward for a few days and was diagnosed with 'anxiety psychosis'.

 
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Anxiety and insomnia were side effects of Ben's epilepsy medication. If he is at all concerned...

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Insomnia was a serious problem. Anxiety, everything about me just changed completely, my friends noticed. But now we've gone through all of that and it finished off with me in the psychiatric ward and basically they said, 'Look it's not right, it can't be done this way.' I managed to recognise the early signs when they put me on other tablets if they were gonna work or not, and I kind of got to the point where I had to decide myself. Luckily I've got friends who were noticing. I'd say to them, 'Right they started me on a new tablet now, can you sort of keep an eye on me, from the outside?'. They'll be quite discreet about it, but at the same time get to the point, so if I'm being edgy with them, they'll say. Which is very, very handy, they're very good to me, I think especially with the seriousness. But all the different tablets they tried, I'm able now to notice things like the insomnia, the anxiety, and now I've got more contact numbers and people that I can call. Nurses that I can speak to, to say, 'Look is this right? this is what I'm experiencing, I've just started these tablets up.' And they give me some feedback as to whether or not it's a good idea to carry it on, or whether to stop them.

Counselling, antidepressants and complementary approaches

People found counselling, anti-depressant medication and complementary approaches helpful in dealing with their depression. Many also said that time and family support had helped.

Several people had counselling to help them deal with anxiety and depression and most had found it useful. In addition to talking through their feelings and experiences in the sessions, a couple of people had learnt practical relaxation techniques. 

 

Counselling was really helpful for Finlay's anxiety.

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Age at interview: 21
Sex: Male
Age at diagnosis: 11
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The psychiatrist that I saw for the anxiety was more general, and she just talked me through ways of dealing with it, other than about epilepsy in particular. She knew that I had it, and she touched on it, but it was more about I need to calm down and it's all about kind of perception as well, and getting a better perception of what's important and what's not. 'Cos I would have attacks over silly sort of things that I really didn't have to be so panicky about, and I would do the little things to avoid doing the big things, and the big things would get bigger and bigger because I kept putting them off. And so she was like, 'You just need to get a bit or order and rationale to your life, when you have that you'll be fine."

And that's what helped?

Yeah, yeah, I think it helped a lot yeah. I think that all epileptics when you get diagnosed should go to, I think it's clinical psychologist is what they're called, I'm not quite sure, I think everyone should go and see. Because I mean, I remember I was quite young, I must've been 16 or 17, something like that, and I only got to see him a few times. And we played like board games and I drew pictures for him and we played ball games. We threw a ball to each other, he wrote notes while I was doing it, and at the time it seemed very obscure, and very kind of out there, and then he wrote it all down and I just thought yeah, that is, that is what I'm like. And he kind of pinpointed it so fantastically that I felt, 'God that was so useful' and I really was so thankful that I got to see him.
 

One man said that he'd gone to his doctor to be referred to a counsellor but was offered only an antidepressant, which he didn't want to take. Another hadn't found counselling helpful and thought it was no different to talking to anyone else about his feelings.

 

Darren was depressed and self-harming. He stayed on a psychiatric ward but didn't find the...

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Age at interview: 19
Sex: Male
Age at diagnosis: 11
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It was all quite sudden really. It kind of dragged on I mean, I did feel quite miserable for a while but not depressed. And then, one day I just went really down and, cutting myself and then mum and dad found out and I went into hospital and just felt really bad. And I just got fed up with life, and then like, as normal people do with depression, you just hate life and all of that. You know, you feel like you're the only one with depression and epilepsy and, you feel like you're the only one that's having bad things happening to you.

How soon did your parents find out that you were self-harming?

In about a day or two, you know. They could see all the cuts on my arms and stuff. So, it weren't that long.

And did you go then straight to the hospital?

Yeah. I didn't go straight into proper care. I went into NHS care first and then, went into a proper hospital, yeah. It wasn't nice.

Do you wanna say anything more about that? You don't have to if you don't want to, what was it like in hospital?

Not much to say it just, it just wasn't nice really.

So you were then sixteen?

Yeah.

What sort of treatment did you have, did you have counselling?

Yeah.

And you got to talk about epilepsy and was that helpful for you at all?

Not really. It's just the same as talking to anyone else about it. I didn't really find it that useful.

People's views on anti-depressive medication varied but all young people who had experienced depression worried about the effects of antidepressants on their epilepsy medication. A few people said they couldn't take antidepressants because of their particular AEDs. One woman had been on anti-depressive medication but it hadn't helped and she stopped taking it. You should never stop taking any prescription medication suddenly but always discuss this with your doctor.

 

Helen is wary of antidepressants; she had bad experiences on them and says there are better ways...

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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Where you ever on antidepressants before you got diagnosed with epilepsy?

Oh yes. I've been on antidepressants three times [laughs]. I've only ever taken them for a week because all of those times one of my friends found out or saw them. Because I didn't see any need to tell people about it. In fact I saw depression as something to be extremely ashamed of, most people do. And when my friends found them or when I told someone, you know just mentioned it, they made me throw them away because it was Prozac and you know there is a lot about Prozac. One of my relatives got very much addicted to it and it ruined years of her life, she had to go into rehab and things and it's a very strong drug. I took it once for a week and the whole week that I took it I was fine and then I came off it, and I wasn't on a strong dose, I was just building up and stuff, and the week afterwards I don't remember at all. I just cannot remember it at all. Apparently I just floated around wearing really bizarre clothes and saying things that didn't make sense. I think I was quite happy but I don't remember it and that's probably not a good thing [laughs]. So I mean antidepressants and me, not a good relationship and I don't think. I know they help a lot of people but I don't think they are necessarily a good thing to take and I think that there are things that can help you deal with depression better, like having supportive family and seeing professionals, talking about how you feel, having counselling and hot chocolate, lots of hot chocolate and books [laughs].

 

Becky was offered an antidepressant but she didn't accept them because her doctor couldn't tell...

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Age at interview: 23
Sex: Female
Age at diagnosis: 15
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I had quite bad depression and they wanted to put me on antidepressants, and I said to them, 'well okay that's fair enough, but obviously you have to be careful because I'm on antiepileptic drugs'. And the doctor said to me, 'Are you?' I was like, 'Yeah. Yeah I am, yeah. See my notes in front of you? Yeah, that'll be an epileptic patient you've got there.' And [laughs], this was the first time I'd seen this particular doctor and he said, actually what he said to me, this was, this is great, he said, 'I want to prescribe these antidepressants for you.' And I said to him, 'Right, but how will they, are they compatible with my antiepileptic drugs?' And he said, 'I'm not sure, take them and see.' That's actually what he said to me, 'Take them and see what happens.' And I said, 'No, I'm not going to do that [laughs], I don't think that's particularly a good idea.' So I didn't take those, that wasn't a good idea. But when I moved back down to [town name] I had a much better doctor and, she was much better, and worked out different kind of tablets and stuff. But from that point of view a lot of the time it has been a case of finding things out for myself, just because, I don't know whether it's just because doctors aren't specifically trained in any particular field, I mean doctors, GPs have to cover everything don't they. But then at the same time I'm seeing an epilepsy specialist, or a neurologist and even he had to think; even he had to flick through a medical dictionary so I don't know. Yeah, a lot of the time it's been a case of finding things out for myself.

'Take them and see.' It's just something that you don't expect a doctor to say. It's like what about if they' 'Take them and see.' What about if I. I mean what if I'd taken them and they'd completely clashed with my medication and I'd had a seizure and fallen off a building somewhere you know? It's crazy.

A couple of people, both on antidepressants and AEDs, said they had been cautious at first but had experienced no problems or side effects. 

 
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Donna wanted an antidepressant to help with her moods, including anger, but she was just given...

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Age at interview: 28
Sex: Female
Age at diagnosis: 3
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I think it was winter time [when depression first started]. I was looking at some of my notes and I think I went to see the psychologist in October and I filled a one of their questionnaires in, and it says that I was suffering from significant levels of anxiety and depression and that was October last year. 'Again 'cos of my epilepsy nobody gave me any tablets so it just got worse and worse and worse. I wasn't prescribed anything, until January of this year, till I just got to the point where I just, oh I couldn't cope anymore. They'd been giving me sleeping tablets for a little while, and I said, 'But I don't want sleeping tablets. I want something to help my mood.' I was like a kettle boiling. I'd be okay one minute, I was very angry, very bitter and obviously my husband got it because he was the one that was here, I was just very, just angry with the world, I just felt angry.

A couple of people had experienced positive effects from complementary (alternative) approaches to anxiety, depression and stress. People who had tried holistic therapy, meditation or herbalism said these had helped them relax and feel less depressed and anxious, so also helping them with seizures (see 'Complementary approaches').

For more information visit our section on depression and low mood.

Last reviewed May 2016.

Last updated March 2012.

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