For some people, their epilepsy and mood problems are not connected, they just happen to have both conditions.
What are the links?
Potential links between epilepsy and mood may be to do with:
- how epilepsy affects your life; and
- how epilepsy affects your brain.
If any of these links are true for you, focusing on one or two may be easier than trying to deal with several at once. What affects you the most?
Life, mood and epilepsy – what affects you?
Here are some common issues related to having epilepsy and some suggestions for how to manage them.
- Fear of seizures is understandable. Seizures can be frightening, unpredictable, and risky. Learning about what happens during your seizures or talking about your fear, may help to reduce any anxiety.
- Safety is important but so is being able to live as fully as possible. Learning about your epilepsy may help you get a balance between keeping safe and being independent.
- If your employment or education is disrupted by epilepsy, we can provide epilepsy awareness training for colleges and employers.
- Losing your driving licence can be hard in both practically and psychologically. However, some people find that travel alternatives lead them to get fitter or to meet new people.
Your family and friends may not know how you feel or what you need from them. If you can tell them clearly how you feel, they can support you better.Or it may help to talk to other people who have epilepsy. Details of epilepsy support groups are available from our helpline. People around you may also need support. Our confidential helpline is open to anyone who is affected by epilepsy.
The brain, genes, and epilepsy – what affects you?
Before a seizure you may feel irritable, anxious, depressed, or aggressive. This may last for a few hours or days, and your mood may get better after the seizure happens.
During a seizure. Up to 1 in 3 people with focal seizures may feel fear as part of their seizures.
After a seizure you may feel anxious or depressed for days or weeks if the parts of the brain that affect mood are recovering from the seizure. Confusion or memory loss after a seizure can also be worrying or depressing.
Medication can have both positive and negative effects on mood (see page 2). Finding the right dose for you may help avoid side effects.
Family history. Being anxious or depressed may be part of your genetic makeup (the characteristics that are passed to you from your parents). Or being anxious can sometimes be learned, as part of how you are brought up.
Structural changes or damage to some parts of the brain may, for some people, cause both epilepsy and mood changes.
Mood problems as a side effect of medication
Possible side effects of anti-seizure medication (ASM) include mood changes, irritability, agitation, or depression. However, ASM can also improve mood for some people.
The patient information leaflet (PIL) that comes with your medication lists possible side effects. If a side effect is listed as common, this means that, at the most, 1 in 10 people will get it and 9 in 10 people will not. The lists of side effects that come with ASM may make you expect to have side effects, increasing your anxiety or low mood. However, the risk of you having a side effect may be lower than you think.
You could keep a diary of your mood, along with a record of any medication changes, so that you can see whether there are any links. This may help discussions with your doctor or nurse, especially when you are new to taking medication. Download a PDF seizure diary or get a printed seizure diary from our shop or helpline.
When you may need to ask for help
Some feelings should not be ignored, especially if you are having thoughts about taking your own life, or death generally. Telling anyone how you feel is the first step to feeling less alone. Your GP and your local A&E department offer support whenever you need it. Telling your epilepsy team how you feel means they can also help. Or you can call our confidential helpline.
Breaking the links – when mood affects epilepsy
Anxiety and low mood may affect your epilepsy and how it is managed. You may be able to help break some of these links. Focusing on something that you enjoy or breaking large tasks into smaller ones may help.
Stress may lead to feeling that you can’t cope, anxiety, depression, or a higher risk of seizures. Exercise and keeping active may help to lower stress. Activities and therapies that relax you may help to reduce the risk
Low self-esteem can make it hard to socialise, and lower self-confidence may make it hard to talk to doctors about managing epilepsy, leading to a higher risk of seizures. Joining a group where you have a shared interest may help lift your mood and boost your confidence and self-esteem. Helping a friend, a community activity, or voluntary work can be valuable for you and for other people.
Lack of sleep may lead to tiredness and low mood. It may make it difficult to concentrate. You may miss medication, with an increased risk of seizures. Keeping active and going to bed and getting up at the same time each day may help improve sleep. If poor sleep is a problem for you, your GP may be able to recommend further help.
Concentration or memory problems may make it hard to take in information. You may miss medication with the higher risk of seizures. Lists, alarms, sticky notes, drug wallets, or memory apps can help you remember and focus on one thing at a time.
Talk to someone
It can be hard to imagine yourself asking for help but there are many sources of support and care you can turn to. Looking after your mental health is positive and getting treatment can make a big difference.
Epilepsy Society is grateful to Dr Dorothea Bindman, Consultant Psychiatrist, Consultant in Neuropsychiatry, National Hospital for Neurology & Neurosurgery, University College London Hospitals NHS Trust, who reviewed this information.
Information updated: October 2022