In this section
- Introduction
- Sudden unexpected death in epilepsy (SUDEP)
- How often SUDEP happens
- The causes of SUDEP
- Risk factors of SUDEP
- Ways to reduce the risks of SUDEP if you have epilepsy
- Ways to reduce the risks of SUDEP for someone who is having a seizure
- Further information about SUDEP
This information was written by Epilepsy Action’s advice and information team with guidance and input from people living with epilepsy and medical experts.
Our thanksEpilepsy Action would like to thank Dr Lina Nashef, consultant neurologist at Kings College Hospital, UK for helping to write this information. |
Introduction
Epilepsy is a very individual condition that affects everybody in different ways. Many people find that their epilepsy does not get in the way of their everyday life. In fact, up to 70 in every 100 people with epilepsy could have their seizures fully controlled, with the right treatment.
Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. A small number of people have a risk of sudden death due to their epilepsy.
It is important to remember that the risks of dying because of epilepsy are low. What’s more, there are things you can do to make the risks even lower.
Most people who know somebody who has died due to epilepsy say they wished they had known more about the risks before the person died. Therefore, the aim of this information is to raise awareness of the risk of sudden death associated with epilepsy. It also offers practical advice and suggestions on ways to reduce this risk.
If you have any more questions about this information, please contact the Epilepsy Helpline service. You can also contact your family doctor, epilepsy specialist, or epilepsy nurse.
If you are concerned about SUDEP, or know someone who has been affected by it, please support our Christmas appeal. Together we can help reduce the risk of sudden unexpected death in epilepsy.
Sudden unexpected death in epilepsy (SUDEP)
Most of the time, people with epilepsy recover perfectly well after a seizure. A very small number of people die due to an injury that has happened because of a seizure. In some cases, there’s no clear reason why a person with epilepsy has died. If a person with epilepsy dies unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.
How often SUDEP happens
In the UK, about 602,000 people have epilepsy. It’s estimated that SUDEP causes about 500 deaths each year. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.
The causes of SUDEP
SUDEP has been shown to be connected with seizures, but the exact cause is not known. Research suggests that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. Very occasionally this may cause the person to stop breathing and not start again.
Risk factors of SUDEP
There is no way of predicting who will be affected by SUDEP. But the single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure which causes the person to lose consciousness. Their body goes stiff and then starts jerking.
Each person with epilepsy has their own level of risk of SUDEP. It can occur in people who have seizures very often or very infrequently. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP in people who are seizure-free is very, very low.
Here are some factors which may increase a person’s risk of SUDEP.
- Having generalised tonic-clonic seizures
- Not taking anti-epileptic drugs (AEDs) as prescribed
- Having seizures that are not controlled by AEDs
- Having sudden and frequent changes to AEDs
- Being a young adult (in particular male)
- Having sleep seizures
- Having seizures when alone
- Drinking large amounts of alcohol
Ways to reduce the risks of SUDEP if you have epilepsy
Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible. If your seizures are not controlled, here are some ways that you can manage your epilepsy, to try and reduce them.
- Always take your anti-epileptic drugs (AEDs) as prescribed.
- Never stop taking your AEDs, or make changes to them, without talking to your doctor first.
- Make sure that you never run out of your AEDs.
- Ask your epilepsy specialist or epilepsy specialist nurse in advance what you should do if you ever forget to take your AEDs at your usual time.
- If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They can suggest changes to your AEDs or other treatment options, which may include surgery or vagus nerve stimulation.
- Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures or anything that may trigger your seizures.
- Avoid situations which may trigger your seizures. Common triggers include forgetting to take AEDs, lack of sleep, stress, lack of food and too much alcohol.
If you live in the UK and your epilepsy is very difficult to control, you may be entitled to go to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.
Other ways to reduce risk
- If your seizures happen at night, consider using a bed alarm. Bed alarms can alert another person if you are having a seizure, so they can help you. For example, they can call for an ambulance, if they feel this is necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or set off without a reason.) Information about bed alarms is available from the Disabled Living Foundation.
- Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may wish to wear identity jewellery or carry some form of epilepsy awareness card to alert other people to your epilepsy.
- Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do.
Ways to reduce the risks of SUDEP for someone who is having a seizure
You may be with someone when they have a seizure which causes them to lose consciousness. Most people recover perfectly well after a seizure, but here are some things you can do to help them recover.
- When the seizure is over, put the person on their side in the recovery position (see the picture). This can help them to breathe.
- If the person is having difficulty breathing, gently move their limbs. This may encourage breathing to start properly again.
- If the person is still having difficulty breathing, call for an ambulance.
Call for an ambulance if...
- You know it is the person’s first seizure
- The seizure continues for more than five minutes
- One seizure follows another without the person regaining consciousness in-between
- The person is injured during the seizure
- The person has difficulty in breathing
- You believe the person needs urgent medical attention
Further information about SUDEP
Epilepsy Bereaved
Epilepsy Bereaved offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.
Telephone:
UK callers: 01235 772 852
International Callers : +44 1235 772 852
Website: http://www.sudep.org/
This information has been produced under the terms of The Information Standard.
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Updated January 2011To be reviewed January 2013
Comments: read the 9 comments or add yours
Comments
my lovley son Chris died on the 25th of July. We his family are still in total shock as it was sudden and it was me his mum that found him. Chris was 35 yrs old and led a normal life. He started with epilepsy when he was 23yrs and it took him a long time to accept it. he took his medication which was lamoterigine and his seiziures were well under control. I cant remember the last time he had one. A few weeks before he died he said to me that he thought he had had one in his sleep as his tounge was sore and there was a speck of blood on his pillow. Chris died in his sleep and the thing that gives me comfort is that there was no struggle and he just went to sleep had a seiziure and just never woke up. His family are all still in shock and we find it difficult to come to terms with the fact that a healthy young man could die that suddenly as epilepsy isnt a illness. Research needs to be done into sudep so that other familys dont suffer they way our family has. Diane and bobby from lancashire
I also lost my brother John through epilepsy he passed in his home aged 49 years.It was his dream to go to kennedy space centre for his 50th birthday with all the family.We booked our Florida holiday ,Magic kindom,sea world and Kennedy space centre for November 2009.Sadly John passed away in July 2009.I bought an American flag and placed it discreetly on the coffin, after the service I saved the flag to take to Kennedy space centre.On John's 50th birthday we all went to the space centre, my husband gave the flag to one of the guides told her of it's significance, she said she would put it somewhere appropriate and thought it was a lovely gesture to carry out his wishes.He may not of been with us in body but I'm sure he was in spirit.Although things are very raw I sometimes feel sad I try to think of the happy times that we had.
on the 9th september 2010 i went to wake my precious little Adam and get him ready for college. Adam was 18 and had severe special needs he had no language and no understanding of language but he had the biggest smile in the world. That morning as I entered his room I had no idea my life was about to change forever - for my special little boy who had had epilepsy since 6 months old had suffered SUDEP. It was my worst nightmare come to life and my whole body just shut down your self preservation instinict takes over and you are oblivious to life that is around you. I really dont know how life goes on but it does the world continues to turn and the clocks continue to chime. As time passed I began to jump back on the world for very short periods but can not maintain my contact with reality because I feel responsible for his death - how many nghts have I been up dealing with a seizure how many hours have I slept on the floor at the side of his bed how many times have I hurt my back struggling to move him to a safe position how many times have I cancelled an outing because I wouldn't leave him how much of my life belonged to him - how do I now apologise to him how can I say I am sorry for not hearing him how do I tell him my sixth sense wasn;t working how can I go back and join the world as though he was never here? I have wonderful memories and the last evening of his life we had a very happy evening out and he was full of smiles and he gave me a beautiful smile as I put him to bed but SUDEP takes more than the individual who dies it takes a piece of the heart of those who are left behind. My love is with anyone who has suffered the loss of someone close to SUDEP and hope you have caring family and friends to surround and protect you
Adam was not my biological child I was his carer and he had lived with me for 13years 3 months and 3 days but my pain could not be greater to me he was mine and he was my life.
night night precious one sleep tight.
We have recently lost our very precious daughter aged 34 years, the post mortem result only stating unexpected death in epilepsy. Before my daughter was removed from my home there were many questions asked and we hoped this information would be taken into account. The previous weekend before her death my daughter had been in respite care and had two falls. On the Friday before she died she had been given a general anesthetic for some dental work to be carried out. In fact while she was in theatre four teeth were removed and very little follow up advice given as how to care for her mouth. Because of her learning difficulties we were unable to rinse her mouth out properly but no alternative methods of keeping the wounds clean were offered.Her face was pretty swollen and bruised and it was so difficult coaxing her to drink and eat anything. We were all concerned about her the entire weekend but she did appear to be brighter on the Sunday night when put to bed. On Monday I let her have a lie in but when I went into her room to waken her the first thing I noticed was her ear was cold, I kept touching her face and then called out her name there was no response. I pulled back her duvet and saw the purple bruising on her neck, arms and legs. One fist was tight closed but in the crook of her other arm lay Thumper a toy rabbit she cuddled on the nights she slept here. It was insisted that a post mortem would be carried out and we lived in hope this would give us the answers we were searching for. Had she had a seizure in the night and no-one heard? her bedclothes looked so undisturbed and dry, nocturnal seizures usually caused incontinence. I am riddled with guilt thinking that at some time in the night she has called out and went un heard, we as yet don't have a time of death just when she was declared death. It has been a truly nightmarish time for us and our grieve is so raw and painful but we keep asking the same questions and feel that our friends and families cannot even begin to know what this horrrendous situtation is doing to us. We would be so grateful to anyone who can throw some light onto what might have happened on that dreadful night, any comforting stories and suggestions as to where our gorgeous darling girl has gone, is she well now I would so love to hear some words of hope
hello i lost my dad when i was tow years old he had a fit in his sleep and never woke up and now i have a step dad who has eplipesy and i cant deal with it because it makes me and my mum depressed he seems to be getting worser and i im asking for some advie on what to do
thank you
Oh yes, seizures at night and I are "best friends." That is to say that over the 40 years I've had epilepsy, having my seizures at night is most typical. Maybe it's because my body more or less gives in at night and says, "Oh well, if he's got to get it out of the way, now's the time!" Most often I have them late into my sleep, or just after waking up at about 7:00 am. The person I live with says that they last about 30 seconds to 1 minute, and that I get up right away and head to our bathroom. What is odd is that I will return to bed, then go back to the bathroom 6 or 7 times before fully realizing what has happened to me. And even then, I need my friend's description. My basic fear is that I will do something inappropriate while in that state of confusion, even undress and wander outside of our apartment. At times, I have changed clothes and don't remember having done such. However, I am glad that the majority of my seizures do occur while in a somewhat "safe" place. I just wish there were ways to "see" our own seizures. It might take a lot of our fear and assumptions out of the way. Right?
I am a 31 year old lady... I was diagnosed with Epilepsy when I was 16... I am now (after trying many meds) on Carbamazapine and Pregabalin , still uncontrolled.
7 years ago I broke my spine twice in the same year, and since then was scared of my Epilepsy.. I was very lucky to still be alive and to not be paralyzed. Doctors told me the same thing.
4 weeks ago... I had a really bad seizure where I stopped breathing, I turned blue all over my face, especially around my mouth, there was froth blocked at the back of my throat, my partner put his fingers in my mouth to remove it and put me into recovery position, where I started to breath again, and the colour came back to my face.
I thank god he was there, otherwise I wouldn't be writing this now!!!
I have been having seizures often in my sleep.... I am so frightened... I have a 12 year old daughter, who I want to live to see her grow up.
I have 3 different types of seizures, so it's hard to not think about it as they happen often.
I also feel awful writing this, reading some of the comments from some people on here who have lost loved ones... MY HEART AND THOUGHTS GO OUT TO YOU ALL.
I know I need to be strong and not allow the fear to take over otherwise, the risk is higher.
I feel I have been lucky escaping death these 3 times, and wonder will I be so lucky next time?
Maybe it's best I do invest in one of those alarms, which I have put off, because I feel Epilepsy has taken over my life and having one of those, just makes it seem even more controlling... I want a normal life, but hey, what is a normal life?
Marianna.
its 2 years today when my 22 year old sister passed away. her death cert reported SUDEP. I still cant believe she's gone, I replay that day over and over in my head and it still makes no sense. Why does a healthy 22 year old just die? WHY? she was a mother to and 8 month old boy when she died, he doesnt even remember her now. she had mild epilespy since the age of 14, she only ever had 6 small seizures in her short lifetime, none of which were serious enough for her to be hospitalised. She hadnt had a seizure for 4 years prior to her death. I miss her sooooo much, I have had a heavy heart since she left us and today magnifies the loss. 2 years have flown by so quickly, her boy is almost 3 and he looks just like her. My heart goes out to anyone that has loved and lost, peace and light to all xxxxxxxxxxxxxxxx
I am so sorry to hear from the families on here that have lost a loved one to SUDEP... I have an 18yr old daughter who has suffered with various siezures since being 5yrs old as a result of Rasmussens Syndrome, the syndrome left my perfectly healthy child with learning difficulties, a weakness down one side of her body, blindness & took away her speech. Even though she has had 2 brain ops the thing that always scared me most was leaving her alone at night as she often has seizures through the night (i was never offered a mat at this time or even knew they existed!!)... Her seizures improved for 2 yrs after the second brain op but unfortunately returned as tonic clonic ones last yr & my fear of leaving her alone whilst she slept increased especially as the seizure would last for upto 3 mins & restrict her breathing... after so many sleepless nights next to her, i pleaded with her occupational health worker.. The result being getting her a mat to place under her bed FREE!!!... I'm not saying the mats are perfect, they often falsely go off in the night... but life has significantly improved since... so i urge any of you who are under huge amounts of stress & worry over this issue to harrass your occupational health or social workers until they provide you with one.