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Epilepsy and mood
Feelings about diagnosis and living with epilepsy may be different for everyone. Mood problems such as anxiety and depression are common in people with epilepsy. For some people, there may be links between their epilepsy and any mood problems they have. Possible links include how epilepsy affects life, how the brain is affected, and genetic or family history. There are self-help strategies for mood problems and you can also ask for help.
This text is taken from our booklet ‘The Bigger Picture – epilepsy and mood’ which was commended in the BMA Patient Information Awards 2010. The Bigger Picture booklet uses comics to show how people may feel and deal with their epilepsy.
Order your free copy of The Bigger Picture online or by calling the Helpline on 01494 601 400.
The Bigger Picture - epilepsy and mood
Epilepsy affects everyone differently. Some people with epilepsy may find that problems with mood can affect their epilepsy and how it is managed. How you feel may be different, and your view of epilepsy may also change over time. This page includes real quotes from people with epilepsy about their feelings and what they have found helpful.
Any diagnosis can be a shock, even if you are expecting it. You may feel numb, angry, confused or frightened. Or you may feel relieved – what’s been happening to you has a name and a treatment. Everyone has their own way of reacting to a new situation.
Recognising the impact
Strong feelings such as anger, fear or distress can sometimes be overwhelming, but these are normal emotions, and there may be good reasons for feeling the way you do. You may also feel a sense of loss, that epilepsy is taking something away from you. Recognising what the diagnosis means to you may help you feel more in control of your situation from the start. It may help to talk to someone or to write down how you feel. If you want an anonymous person to talk to, our Epilepsy Helpline is confidential.
Adjusting to change
A diagnosis of epilepsy can be hard to accept. It may change some things in your life but not necessarily for ever. Losing your driving licence and taking medication are two of the big issues you may be facing. It can take time to adjust. It may help to remind yourself that you are still the same person you were before the diagnosis and that support is available if you want it.
“Being diagnosed with epilepsy was the best thing that has happened to me in the last five years. I now feel ‘normal’. My first two months I was in denial but once I accepted it I felt a sense of relief. My family also said I was the person they used to know.”
Looking for answers
Epilepsy can happen to anyone, at any age. Doctors may be able to find a cause but this is not always possible. Our brains are incredibly complex and changes take place in the brain throughout our lives. Research looks into why seizures happen for some people and not for others.
Your neurologist, GP or nurse may be able to tell you more about your epilepsy. You can also get information about epilepsy from us when you are ready for it. Our just diagnosed pack is free to order through our online shop.
Dealing with other people
The way family or friends react to your diagnosis may be just what you need, or you may find some reactions hurtful or unhelpful. People around you may also feel shocked, frightened, worried, angry or helpless about your diagnosis. They may not know very much about epilepsy. They may also need time to adjust and work out how they feel. What you need from them may also change over time. Family and friends can best support you if you are able to tell them clearly what you find helpful.
“When I feel anxious I find going for a walk or doing something helps. The worst thing I find is sitting doing nothing.”
Everyone feels anxious at times. When you are frightened or feel threatened, your heart beats faster, your muscles tense and your body prepares you to ‘fight’ the threat, or to run away from it – ‘flight’. So anxiety is useful when it alerts you to danger, or when it helps you concentrate on something that makes you nervous.
Anxiety becomes a problem when you feel anxious most of the time and it affects basic things such as eating, sleeping, or being able to leave the house. If you are anxious you may also feel restless and unable to relax, or have no energy and be easily tired. You may panic in certain situations. You may sleep badly or wake up too early in the morning. Your memory or concentration may become poor. You may feel easily irritated.
Anxiety can also show in physical ways. Your appetite or weight may go up or down. You may sweat, have a dry mouth, or palpitations (racing or uneven heartbeat). You may have regular headaches, or chest or joint pains. You may feel breathless, sick or have diarrhoea. Your hands may feel cold and clammy, or you may feel tingling in your hands or feet.
You can have any of these symptoms for other reasons but if some of them have been happening regularly, and for over six months, anxiety may be the cause.
Anxiety is common
Anxiety as a medical problem affects around 1 in 10 people in the UK. Anxiety can start at any time of life, and can come and go, depending on what is happening in your life. Sometimes anxiety also happens when people are depressed. Some people with epilepsy have a higher risk of anxiety (see Epilepsy and mood - what are the links? below).
Anxiety may be triggered by a particular memory, such as having a seizure, and the fear that it may happen again. How you have been treated in the past, for instance being bullied or ignored, may make you worry about how people treat you now. Or you may feel anxious without a specific reason. Anxiety can grow very quickly, and you can find yourself worrying about things you can’t control, such as other people’s problems, or worrying about how much you are worrying. Realising that anxiety is a problem is the first step in dealing with it.
Helping yourself – some ideas
Finding ways to manage your anxiety is more useful than trying to stop feeling anxious. These ideas may work best if you do them regularly.
- Focus on something enjoyable that distracts you: music, a picture, an activity.
- Plan small achievable tasks for each day. How does it feel to get things done?
- Talk to people. Any social contact can help you feel more confident and valued.
“Having epilepsy does not mean you have to expect and cope with depression. You have as much right to help and support as anyone else.”
We all feel low and depressed sometimes, without it being a medical problem.
Like anxiety, depression is a problem when the unhappy feelings do not go away and it affects daily life: eating, sleeping, or being able to get out of bed.
Depression is not just about feeling sad or down. It is about losing interest and enjoyment in the things you used to enjoy.
If you are depressed you may feel worthless, hopeless, tearful, tired, restless or anxious. You may lose interest in sex, or not care about your appearance. You may not be able to make decisions, remember or concentrate. You may sleep badly or wake too early. Your appetite or weight may go up or down. You may think that life is not worth living, or think about suicide or death in general.
Depression is common
1 in 5 people in the UK have some form of depression at some point in their lives.
Sometimes depression is triggered by an upsetting or life-changing event, such as a bereavement, unemployment, family problems, debt, an accident or an illness. Some people are more likely to become depressed than others because of a family history of depression. Frequent stress (too much pressure) may make depression more likely.
Depression is more likely in someone with epilepsy (see Epilepsy and mood - what are the links? below) but this does not necessarily mean that one condition has caused the other. Nor does it mean that depression is something you just have to put up with.
Helping yourself – some ideas
- Exercise stimulates brain chemicals that may improve your mood and it is a good way of getting out and meeting people. Feeling fitter can also help you feel more positive about yourself. If you are tired or depressed you may not feel like being active, but exercise can actually boost energy levels. You are more likely to stick to exercise when you enjoy it and when you notice that it helps you.
- Regular well-balanced meals help increase your energy levels and boost your immune system, which may help you feel positive and reduce the risk of seizures. Cutting down caffeine and sugar may help avoid highs and lows in your energy levels, and in your mood. Diet and nutrition can be an important part of living well with epilepsy.
- Note the times when you feel especially low. What helped you cope last time?
“Keep yourself safe, and positive as best as you can. It helps to have a hobby as well, something therapeutic.”
For some people, there is no link between their epilepsy and mood problems, they just happen to have both conditions. However, potential links are to do with:
- how epilepsy affects your life and
your brain, your genes and your family history.
Life, mood and epilepsy - what affects you?
- Fear of seizures is understandable. Seizures can be frightening, unpredictable and risky. Learning about what happens in your seizures, or talking about your fear, may help to reduce your fear.
- Employment or education may be disrupted by epilepsy. We can provide epilepsy awareness training for schools, as well as for colleges and employers.
- 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 practically and psychologically. However, some people find that travel alternatives lead to getting fitter or meeting 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. What affects you the most?
- 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 better support you.
- Find other people affected by epilepsy on our web Forum, or through our volunteer and membership schemes.
- Details of epilepsy support groups are available from our Helpline.
- Other people with long-term conditions may share common experiences. The Expert Patients Programme (EPP CIC) (opens in a new window) 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. The Expert Patients Programme also runs courses to support carers (opens in a new window).
The brain, genes, and epilepsy - What affects you?
- During a seizure up to one in three 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, and your mood gets better after the seizure.
- Medication can have both positive and negative effects on 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 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 affect mood. For 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, AEDs can also improve mood for some people. 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, one in ten people will get it and nine in ten 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 you can see if there are any links. This may help discussions with your doctor or nurse, especially when you are new to taking medication. Our seizure diary has a section for comments about your medication and any side effects. Seizure diaries are available from the online shop or from the Helpline.
Some feelings should not be ignored, especially if you are having thoughts about suicide, or death generally. Telling anyone how you feel is the first step to feeling less alone. Telling your doctor or nurse how you feel means 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, anxiety or depression and a higher risk of seizures. Exercise and keeping active may help 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, finding it hard to concentrate, 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 get more sleep 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 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 and low self-confidence may mean it is harder to socialise, and harder to talk to doctors about managing epilepsy which 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, a community activity, or voluntary work can be valuable for you and for other people.
Asking for help
Sometimes helping yourself feel better is not enough on its own and you may need extra help. Your GP can suggest other treatment options. It can be hard to ask for help and you may not like the idea of seeing a doctor about mood problems. But looking after your mental health is positive, and getting treatment can make a big difference.
Seeing your GP may be easiest when it feels like you are working together. You can help your GP by telling them about the different feelings you have. It may help to write down what you want from the appointment before you go. Your GP can help by listening, by looking at your medical history and by asking you what you think might help you.
If you feel your mood is linked to your epilepsy or to side effects of your AEDs, you can ask your GP to review your epilepsy or refer you to a neurologist. Your GP may refer you to a local exercise programme or make suggestions about your diet. They may recommend a ‘talking’ therapy or medication such as an antidepressant, or a combination of different treatments. Any treatment is more likely to work if it is a treatment that you want.
These may help reduce anxiety or depression and make life more manageable. Talking in confidence about your feelings about epilepsy may be helpful. Different talking therapies include counselling, psychotherapy and group therapy.
“After many years of attempting to hide the psychological effects of my epilepsy, I chose to seek support in the form of cognitive behavioural therapy. This has allowed me an understanding of the link between epilepsy and depression, and to accept that it’s OK to feel sad.”
If coping with anxiety or depression is very difficult or impossible, your GP may offer you antidepressants or other medication, sometimes along with a talking therapy. Your GP or specialist may check that you are on the right AEDs first. AEDs can have both positive and negative effects on mood and will affect people differently. If you are offered medication for anxiety or depression, your doctor can check which is the best drug for you, and one that is least likely to affect your AEDs or your seizure control. Reporting any side effects will help your GP to see which treatment suits you.
Where family and friends can help
You may not recognise that you are anxious or low. Family or friends may notice changes in your mood before you do. Comments made by others may be hard to hear but they may be worried about you. Helpful approaches include the following.
- They could ask you how you feel, then listen without interrupting when you want to talk.
They could keep any comments about you factual, rather than give opinions on what they think you should do.
Epilepsy Society is grateful to the many people with epilepsy who helped produce this information by generously sharing their experiences.
© Epilepsy Society. Information produced in March 2013
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