We exist to improve the lives
of everyone affected by epilepsy

 

Low mood, depression and epilepsy

Epilepsy and wellbeing moduleLow mood and depression share some of the same signs and symptoms. They can have an impact on your epilepsy. And epilepsy can affect your mood too.

What is low mood?

Everybody feels down from time to time and this is quite normal. Low mood is not pleasant to live with. It can cause you to have feelings such as:

  • Sadness
  • Anxiety or panic
  • Worry
  • Tiredness
  • Frustration
  • Anger

How is low mood treated?

Making some small changes in your life, such as solving a difficult situation, talking to someone about your problems, or getting more sleep can help to improve your mood.

Usually, low mood will tend to lift within a few days or weeks. If it lasts longer than that, and is affecting your day to day life, it could be that it has turned into depression.

About depression

Around 1 in every 6 people in the UK will have depression. If you have epilepsy, your chance is around 1 in 3.

Depression affects people in different ways but you might:

  • Feel sad or low for long periods of time
  • Feel hopeless or helpless
  • Feel guilty
  • Feel anxious or worried
  • Feel irritable
  • Feel tired all the time, with no energy
  • Sleep more or less than usual
  • Have no motivation or be unable to concentrate
  • Lose interest in things you normally enjoy
  • Lose interest in sex
  • Eat more or less than usual
  • Think about harming yourself or suicide

Are there any links between epilepsy and depression?

People with epilepsy are at a high risk of becoming depressed. And people with depression are at high risk of developing epilepsy. Although they are different conditions, it is thought that they might share a common cause.

It’s also interesting that some people who had depression before having temporal lobe surgery seem particularly vulnerable to depression and continuing seizures afterwards. The people who had epilepsy without a history of depression were more likely to become seizure free after surgery.

Depression and thoughts of self-harm can be side-effects of some epilepsy medicines. This is particularly so if they are started at too high a dose, or the dose is increased too quickly. If you start having new symptoms after taking your epilepsy medicines, speak to your family doctor.

What is the treatment for depression?

Depression can be mild, moderate or severe.  Many people with mild depression will get better without any help. But some people will need some help, depending on how seriously their depression is affecting them. These are some of the ways your depression might be helped.

Self-help

  • To avoid feeling isolated, stay connected to the people you care about
  • Try to talk to people you trust about how you feel
  • Try to have a regular good night’s sleep
  • Eat a balanced diet
  • Try not to drink too much alcohol
  • Try to get as much exercise as you can. Exercise releases chemicals called endorphins into your body. These are natural antidepressants

Epilepsy Action has an epilepsy and wellbeing online course you might like to try. Epilepsy Action also runs coffee and chat groups across the UK. They enabled you to meet new people, share experiences and learn more about life with epilepsy in a relaxed and comfortable environment.

You can find more information about self-help treatments on the NHS website and NICE websites.

Talking therapies

There are various different types of talking therapy that can help with depression. They all involve talking with a therapist. Some people will see a therapist by themselves, and some will join a group therapy session.

This is an NHS video about talking therapies.

Antidepressants

Treatment with anti-depressant medicines should be considered for people with epilepsy and depression. These work by increasing the activity and levels of certain chemicals in the brain that help to lift a person’s mood. The choice of anti-depressant medicine will depend on what epilepsy medicines you are taking and any possible interactions.

St John’s Wort can interact with some epilepsy medicines, so people with epilepsy shouldn’t use it.

For some people, a combination of self-help, talking therapies and medicine is the most effective way of treating depression.

See this Royal College of Psychiatrist’s video about depression.

Coming to terms with epilepsy and depression

You are more likely to develop conditions like depression than someone who doesn’t have epilepsy. But, treatment can help. And trying to look after your emotional health and wellbeing can be a help too.

Our bodies and minds are connected. Being diagnosed and living with epilepsy can affect how we feel emotionally. And how we feel emotionally can affect the way we cope with our day-to-day lives.

You can find out more about taking control of your epilepsy by taking part in Epilepsy Action’s epilepsy and you online training course.

Who can help?

We all need help sometimes. If the negative feelings you are having don’t go away, or they are affecting your everyday life, you might need some support. You could get this from a family member, a friend, your family doctor, epilepsy specialist or epilepsy nurse.

If you are feeling that life is too much, you will need help straight away.

Seek medical advice or call NHS 111.

You can also contact the Samaritans. They offer 24 hour confidential emotional support for people who are having feelings of distress or despair, including thinking about suicide.

The Samaritans
Tel: 116 123
Website: samaritans.org

For information about psychological services in your area visit NHS Choices.

Organisations for information and support

Telephone numbers for the UK only

Mind
Helps people to take control over their mental health. They offer advice and support.
Tel: 0300 123 3393
Website: mind.org.uk

NHS choices website
The country's biggest health website gives information you need to make choices about your health.
Website: nhs.uk

Rethink Mental Illness
Provides expert, accredited advice and information to everyone affected by mental health problems.
Tel: 0300 5000 927
Website: rethink.org

Royal College of Psychiatrists
Provides a detailed patient information leaflet about depression in several languages. Search ‘depression’ from the homepage.
Website: rcpsych.ac.uk

Saneline
National out-of-hours telephone helpline, offering emotional support and information for people affected by mental health problems.
Tel: 0300 304 7000
Website: sane.org.uk

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F031.04

Epilepsy Action would like to thank Professor Michael Kerr, Clinical Professor, Division of Psychological Medicine and Clinical Neurosciences Cardiff for contributing to and reviewing this information.

Professor Kerr has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated August 2016
    To be reviewed August 2019

Comments: read the 14 comments or add yours

Comments

I started with temporal lobe epilepsy age 14, but did not know what it was until a full convulsion age 21.
During the next twenty years no drugs helped my epilepsy, nor did I fully get spoken two about my symptoms. The horrendous bouts of feeling down were very deep depression.
At the age of 44 part of my left hippocampus was removed, but after three months epilepsy began to start and yearly become more frequent.
I am 60 now and after trying a fitting of the Vagus nerve stimulator I am pretty sure nothing will ever resolve this issue.
Most antidepressants I've tried had such bad side effects I could not stay on them.
What really needs to be done is for the therapy for these problems to be looked at in the same departments.
Seeing someone for your epilepsy one week, and then seeing a psychiatrist the next week is being treated for two conditions.
It must be realised it is not (definitely in my case) a pschiatric depression but very definately a physiological one.

Submitted by David Craven on

I am worried sick about my 16 year old teenage son .He had absences since the age of 8. It had been a difficult birth and as there was no anaesthetis the baby was in distress for some time .i often thought this was the cause of his Epilepsy but nobody will comment .He was a great, happy child but changed completely at 13 when he took his first full tonic clonic seizure. Since then life has been a nightmare.He is lethargi c, depressed , prone to going missing without his meds and taking seizures outside.so it is obvious he has severe behaviour and mood problems .I spend most evenings looking for him or asking the police to find him. His gp and everyone else here in Scotland consider him an adult at 16 and offer no help because of his age -only if he wants help , which of course he doesn't as he doesn't know he has a problem. He is over 6 foot and I cannot restrain him. I have been asking GP to help but as he is 16 they will not discuss.Even if he spoke to his doctor he cant communicate fully as he has deteriorated cognitively.I even wonder if he has a brain tumour -he has never had a brain scan. I am ill with worry.

Submitted by Maureen on

Hi Maureen

It sounds like very difficult times for both you and your son. 

Ideally it would be best to try get your son to go see an epilepsy specialist and an epilepsy nurse. You could explain they would review his treatment and look at other possible reasons for why his seizures are still happening and whether his behaviour is connected to his epilepsy? If he is willing to do this, you could contact our helpline team and we will see what epilepsy services are available in your area.

In Scotland the guidelines for treatment of epilepsy are covered by the Scottish Intercollegiate Guidelines Network (SIGN). 

These guidelines explain how often someone should have a review of their treatment and how if someone has difficult to control epilepsy they should be seeing an epilepsy specialist.

The specialist can also look at your son’s behaviour. Sometimes such behaviour can be related to epileptic activity, side-effect of epilepsy medicine or the effects of living with a long term condition. Children with epilepsy are at higher risk of behavioural, emotional, psychiatric and social problems than children without epilepsy. We explain this on our webpage How might having epilepsy affect my child’s behaviour and wellbeing.

Your son may also find our information on wellbeing helpful. It covers information on Looking after your body - looking after your mind, Self-esteem and Low mood and depression.

As your son is finding it hard to talk about his epilepsy, I wonder if the charity Quarries might be able to offer you both some guidance and support. As an epilepsy charity based in Scotland they might have people in your area who could offer you both some support.

Some young people with epilepsy find it helpful to talk to others on social media. If this could be the case for your son, you could make him aware of the TEA Room. This is a friendly space for young people from the age of 13 to 19 years old who are living with epilepsy to talk to others. (TEA stands for Teenage Epilepsy Agenda.)

If we can be of any more help to you or your son, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk  or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm. 

Regards 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

Hi,
My brother has epilepsy, he developed it around the age of 20 but had had little absence seizures when we were kids, brought on by contrasting lines or escalators etc. He takes medication now and so doesn't have seizures however in 6 weekly (approx.) cycles he suffers from low mood/depression for about a week.
From reading up on this I have heard alot of negative press around anti-depressants, he also doesn't really like talking about his depression to us or friends and also doesn't buy into therapy. He has alot of support around him, has a job that he does really well at but I would love to try and find a way of helping him (a therapy and medication averse 28 year old!) to make these times a bit easier, without patronising him or trying to persuade him to do things he doesn't want to. Is there anything you could suggest, we live in Manchester.
Many thanks in advance

Submitted by Lou on

Hi Lou

It is a bit of a challenge trying to help someone who is not comfortable talking about the things that are concerning them.

But I am wondering if he might find our online community useful. It’s called forum4e and is for people with epilepsy and carers of people with epilepsy. Another possible idea is our online self-management course, called Epilepsy and You. There is a coffee and chat group in Manchester. It may not at first look appropriate. But if there are people there of a similar age, with some similar experiences that could be really helpful. You could even just ring the contact person to check that out.

Here is the full range of support we offer in case there is anything else on there that looks like it might work.

Also if your brother is willing, it would be a good idea to discuss this with his family doctor. They should have a range of resources to suggest rather than just anti-depressants.

I hope there is something there that helps your brother move forward.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Thanks so much Cherry, that is really useful, I will look into. Kind regards. Lou

Submitted by Lou on

I've only had one nocturnal seizure but I've lost my job my esa has been stopped today. I have no money coming in I've not stopped crying today I'm extremely depressed it's been coming on for weeks. Could my meds lamotrigine have anything to do with my mood

Submitted by Marie on

Hi Marie

It sounds like things are feeling really difficult for you right now. I do hope this information gives you some ideas about how to get some help.

It is quite rare for someone to experience depression as a side effect of lamotrigine, but it is possible.

There are many reasons though why someone with epilepsy may feel depressed. Hopefully you will have had the chance to read about some of them on our website. As you have been depressed for a while it might be a good idea to talk to your family doctor about this. They will have some suggestions about things that might help.

Here is our information about ESA. You might want to appeal the decision. See “What can I do if I’m not happy with the decision.”

If you have problems with your finances you may want to contact your local Citizens Advice. They might be able to help. Or you could ring Turn2us. They are a benefits and grants organisation. Their helpline number is 0808 802 2000. 

Regards 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Thanks for the helpful article about depression,I am depressed a lot because of problems,I don't know to explain hoe it feels,now I am happy without depression,keep creating awareness about depression.

Submitted by Abdul Aziz on

I have absences daily and am currently crossing over from keppra to epilim as over the past 2 years or so since I was diagnosed my absences have become more and more frequent even on higher doses of meds, but lately I have moved home, don't live near any of my friends and girlfriend so social life has deteriorated somewhat, and I am also waiting on doctor's appointments I think that has me down quite a bit. However, really the problem is first thing in the morning when I wake up I get huge waves of depression/anxiety/fear coming over me. I feel them coming on like a headrush or cold chill and I don't know how to combat them. They come and go for an hour or so while I'm sleepy.
I usually get a good night's sleep and eat well, exercise plenty.

Submitted by Brian on

Hi Brian,

I’m sorry to hear that you’ve been having such a difficult time. Living with epilepsy and being away from the people you’re close to can be hard, and it could really affect mood.  

It sounds like you’re already following some of our self-help tips. We also have information on other things that can help, such as talking therapies, on our webpage about low mood.  And you might find our webpages on stress and general wellbeing helpful as well.

Sometimes it can be a good to talk to someone about things. If you’re feeling low it’s a good idea to keep in touch with your doctor or your epilepsy nurse. If it feels possible, you could speak to them about how you’ve been feeling and what help or support they can offer. If you don’t think you can do this, or you need to talk to someone urgently, remember you can call The Samaritans on 116 123 at any time.

As you’re still having seizures, I’d like to check you’re seeing an epilepsy specialist? You mention you’re waiting for a doctor’s appointment but it’s not clear if this is your GP or an epilepsy specialist. An epilepsy specialist can review your treatment and look at other possible reasons for why your seizures are still happening. They may suggest trying a different epilepsy medicine.  If you’ve tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for you. If you’re not under a specialist, you will need to ask your GP to refer you.

If you think if could be helpful to talk to us or you want any more information you can call our freephone helpline number 0808 800 5050. We are open Monday-Friday 8.30am-5.30pm.

Regards

Jessica

Epilepsy Action Helpline

Submitted by rich on

I'm recently moving from 200mg tegretol twice daily and 500mg Levetiracetam twice daily to 1000mg Levetiracetam twice daily and although I'm altering the dose as prescribed as the neurologist has said my moods have changed dramatically. I'm crying daily and I'm feeling so low I've come down with a cold in July. I'm going to see the GP today but I'm changing medication so I can start a family so I'm worried if they want to change the dose what will happen. I feel like I have to stay on this dose but what if my moods stay like this I have to go to work. Will the side effects stop? Or if they drop the dose I don't want to start getting seizures again.

Submitted by Emily on

Hi

That is such a lot of difficult things to juggle.

Some people can take a while to get to the right dose of the right epilepsy medicine. And some people have to move up doses of medicine particularly slowly in order not to have too many side-effects.

It may be that increasing the dose more slowly will make the levetiracetam more tolerable for you, if that’s what the doctor suggests.

But it may also be that levetiracetam is not the right medicine for you. Seizure control is not the only thing that controls your quality of life is it. Feeling this low must be really difficult for you. And although there are a number of different possible reasons as to why a person with epilepsy might feel low, there is a strong possibility that levetiracetam could be part of this for you. This would especially be the case if you were not feeling this depressed before you started taking it.

The neurologist will want to work with you to get the best seizure control on the best epilepsy medicine for you wanting to start a family and with the fewest side effects. And sometimes that process can take some time. But it will be really good for you to keep talking to the doctor and letting them know if things are difficult. Hopefully soon you will reach a place where you have got the best arrangement for moving forward. I do hope so.

Regards 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Helpful article, depression is a mental illness where it will create some negative thoughts and take control of mind, this article helping me to gain some knowledge, keep sharing with us.

Submitted by Harish Kumar on

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed