Epilepsy in Young People

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.

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. 

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.

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. 

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.

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.

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'.

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. 

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.

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.

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

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.