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.
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.
Charli has had anxiety attacks only after her most recent, severe seizures.
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.
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...
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.
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.
For years, Helen didn't know her experiences were seizures and she felt like a 'freak'. This made...
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.
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.
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?
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'.
Anxiety and insomnia were side effects of Ben's epilepsy medication. If he is at all concerned...
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.
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...
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?
What sort of treatment did you have, did you have counselling?
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...
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...
'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.
Donna wanted an antidepressant to help with her moods, including anger, but she was just given...
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.