For some people, their epilepsy and mood problems are not connected, they just happen to have both conditions. However, potential links are to do with how epilepsy affects your life as well as with your brain, your genes and your family history.
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 your fear.
- If your employment or education is disrupted by epilepsy, learning more about epilepsy may help, and we can provide training for colleges and employers’ which may help improve understanding of your individual situation and avoid any unnecessary restrictions.
- 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.
- Losing your driving licence can be hard in both practical and psychological terms. However, some people find that travel alternatives lead them to get fitter or to meet new people.
If some of these links are true for you, focusing on one or two may be easier than trying to deal with several at once. Think about what affects you the most.
- 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.
- Details of epilepsy support groups are available from our confidential helpline.
- Other people with long-term conditions may share common experiences. Self Management UK offers free courses on living well with various conditions. This includes tackling mood problems and isolation.
- People around you may also need support. Our helpline and other services are open to anyone. Self Management UK also run courses to support carers.
The brain, genes, and epilepsy – what affects you?
- During a seizure up to 1 in 3 people with focal (partial) 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.
- Before a seizure you may feel irritable, anxious, depressed or aggressive. This may last for a few hours or days, with your mood getting better after the seizure.
- Medication can have both positive and negative effects on your mood (see below). Finding the right dose for you will help avoid side effects.
- Family history: being anxious or depressed may be part of your genetic make-up (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 affect a person’s mood. With some people these can also cause epilepsy. Many people with epilepsy do not have areas of damage to their brain.
Mood problems as a side effect of medication
Possible side effects of anti-epileptic drugs (AEDS) include mood changes, irritability, agitation or depression. However, with some people AEDs can improve their mood. The risk of you having a side effect may be lower than you think. 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 AEDs may make you expect to have side effects, increasing your anxiety or low mood.
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.
Some feelings should not be ignored, especially if you are having thoughts about suicide, or about death generally. Telling someone how you feel is the first step to feeling less alone. Telling your doctor or nurse how you feel means that they can help.
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.
- Stress may lead to feeling that you can’t cope, to anxiety or depression and to a higher risk of seizures. Exercise and keeping active may help to lower stress. Complementary therapies that relax you may help to reduce the risk of seizures.
- Lack of sleep or sleeping at irregular times, may lead to tiredness and low mood, difficulty with concentration, a higher risk of missing medication and a higher risk of seizures. Keeping active and going to bed at the same time each day may help you to sleep longer and in a regular pattern. If poor sleep is a big problem for you, your GP may be able to recommend further help.
- Concentration or memory problems may mean it is harder to take in information, and you may be more likely to miss your medication, leading to a higher risk of seizures. Using memory aids such as lists, alarms, sticky notes or drug wallets can help you remember and focus on one thing at a time.
- Low self-esteem may make it harder for you to socialise, and harder to talk to your doctors about managing your epilepsy. This could lead 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, or taking part in a community activity or in voluntary work can be valuable for you and for other people.
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 the many people with epilepsy who helped produce this information by generously sharing their experiences.
Information produced: August 2017