Epilepsy and mental health wellbeing

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Why am I struggling?
Medication and mood
The mental health impact of epilepsy
 How do I know if my mental health is suffering?
Getting help for your mental health 

Why am I struggling? 

As a young person with epilepsy, there things that you’ve had to think about that perhaps your friends and peers haven’t? The fear of seizures, keeping a medication routine, making trips to see your epilepsy doctors and transitioning from paediatric care to adult care are all things you may have had to contend with, along with all the other aspects of growing up and everyday life. 

Mental health struggles can affect anyone, but having epilepsy can lead to extra anxieties and emotions. This can have an effect on how you feel, your enjoyment of life and your relationships with friends, family and loved ones. Mental health difficulties can also impact on your physical health and how much you consider your own self-care. 

If you’re struggling with your mental health, then it’s important to know that it’s ok - you’re not alone and there’s help available.

Anti-seizure medication and mood 

Your epilepsy medications, also called anti-seizure medication (ASM), are important for managing your seizures, but they can also negatively affect your mood. If you’re struggling with your mental health, then it could be down to your ASM. 

Seizures are connected to the same area of the brain as the regulation of our moods and emotions. ASMs affect the brain cells and the chemicals called neurotransmitters that are found in this same area, to help manage seizures. Therefore, they can also have an effect on your mood and emotions. 

If you think your ASM could be making you feel anxious or depressed, then speaking to your epilepsy doctor or nurse is an important first step. They can discuss the possibility of changing your medications with you to see if that may help. 

Different ASMs work on different brain cells and neurotransmitters – some may improve your mood whilst others may negatively affect your mood. So, a different ASM may work better for you if you’re struggling to deal with your emotions. This will depend on the ASM you’re taking along with any other medications for any other conditions. Your epilepsy doctor or nurse will be able to discuss this with you. 

The wider mental health impact of epilepsy 

Aside from your medication, having epilepsy can itself cause you to experience mental health difficulties. The fear of having a seizure can lead to feeling upset and anxiety. You may worry about having a seizure at school or college or when you’re out with friends. 

Your epilepsy might also be interfering with your learning or your ability to do the things you want to do, like starting work, going out to pubs and bars, dating, driving and travelling. 

It can also be normal for a person with epilepsy to feel anxious or depressed before a seizure. Or to feel confused, sad, worried, irritable or angry in the hours and days following a seizure, whilst the affected part of the brain recovers. 

All of these aspects of living with epilepsy mean that it can be normal for you to experience mental health issues such as anxiety, depression, panic attacks, eating problems, loneliness or obsessive compulsive disorder (OCD). 

How do I know if my mental health is suffering?

Occasionally feeling sad or worried is quite normal, especially if you’re going through a change in hormones such as during puberty or just before a period. But feeling this way for long periods of time, or feeling on edge, worried or upset all of the time, can be a sign that you’re depressed or anxious.

The words ‘depression’ and ‘anxiety’ are commonly used, so it can be helpful to understand exactly what they mean.

  • Feeling sad or tearful 
  • Feeling irritable or on a ‘short fuse’ 
  • Having low self-esteem or feeling like you’re not good enough 
  • Feeling disinterested in the things that used to give you joy 
  • Avoiding social situations or spending time with friends and family 
  • Noticing that your school or college work is suffering 
  • Having trouble making decisions 
  • Having no motivation or get up and go 
  • Feeling lethargic and lacking in energy 
  • Finding it difficult to get enough sleep 
  • Experiencing a change in appetite, either more or less hungry a lot of the time 
  • Gaining or losing weight 
  • Having suicidal thoughts or thoughts of self-harm 

You may experience some or all of these symptoms, some or all of the time. If you’re having suicidal thoughts or thoughts of self-harm, speak to someone or seek help from an organisation such as The Samaritans, The Mix or SANEline straight away. 

  • Feeling worried or on edge 
  • Feeling irritated or restless 
  • Feeling dizzy or experiencing a fast or irregular heartbeat 
  • Finding it difficult to get to sleep or stay asleep 
  • Finding it difficult to concentrate 
  • Physically you might experience: 
  • Headaches 
  • Breathlessness 
  • Muscles aches 
  • Shaking 
  • Sweating 
  • Nausea 
  • Stomach pain 

Again, you may experience some or all of these symptoms, some or all of the time. 

Both depression and anxiety can have a mild impact on your day-to-day life, or a more severe impact where you’re unable to carry out daily tasks or commitments due to your depression or anxiety. Everyone experiences them differently. 

Getting help for your mental health 

If you’re finding it hard to cope with your mental health struggles, they’re impacting on your day-to-day life or they’re worrying you, then help is available. Speak to your epilepsy doctor or nurse about how you’re feeling. They’re there to support you and remember, many people experience mental health struggles. It can be helpful to record your emotions in your seizure diary, if you have one, or on a notepad or in another diary. 

Your medical team may discuss changes to your ASM with you and if necessary, refer you to a counsellor or specialist who can help you with your mental health. You may be able to access talking therapies such as cognitive behavioural therapy (CBT), either face to face or over the telephone or video link and many people find these extremely helpful. 

You don’t have to feel the way you’re feeling and finding the right help can help to significantly improve your enjoyment of life. 

No topic is out of bounds here, and no one is ever made to feel judged. If you’re struggling find out how you can get support from us and other organisations here. 

Mental health and wellbeing

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A space for young people, aged 13+, who are living with epilepsy, for them to share, learn and find support.