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Sudden unexpected death in epilepsy (SUDEP)

In this section

Help and support for people who have been affected by an epilepsy-related death
Why it’s important to talk about SUDEP
The definition of sudden unexpected death in epilepsy (SUDEP)
The causes of SUDEP
Risk factors for SUDEP
Ways to reduce the risks of SUDEP if you have epilepsy
Other ways to reduce risk
Ways to reduce the risk of SUDEP for someone having a seizure
Further information about SUDEP and bereavement

Help and support for people who have been affected by an epilepsy-related death

If someone you know has died from an epilepsy-related death, you could feel shocked, confused, isolated and unable to believe what has happened.  There may questions you need answering, to help you to understand. Or, you might need to talk about what has happened. These organisations may be able to help you:

SUDEP Action
SUDEP Action’s  support team can help you to:
• Understand the inquest procedure
• Understand the investigations
• Understand what is going on for you emotionally
Tel: 01235 772852
Email: support@sudep.org
Website: www.sudep.org

Cruse Bereavement Care
Cruse Bereavement Care will support you  after the death of someone close.
Tel: 0844 477 9400
Email: helpline@cruse.org.uk
Website: www.cruse.org.uk

Why it's important to talk about SUDEP 

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. This information is about one significant risk, and that is sudden death due to epilepsy.

It is important to remember that the risks of dying because of epilepsy are low. There are also things you can do to make the risks even lower.

Many people who knew somebody who died due to SUDEP have told us 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.

There have been many studies carried out into SUDEP and research is continuing. However, SUDEP is still not fully understood by medical professionals. In this information, we can only tell you about the current understanding of SUDEP.

If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.

The definition of sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and 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.

The causes of SUDEP

SUDEP has been shown to be connected with seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.

Risk factors of SUDEP

It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected by SUDEP. However, some people with epilepsy have a higher risk of SUDEP than others. The single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure that causes the person to lose consciousness. Their body goes stiff and then starts jerking.

SUDEP has occurred in people who had seizures very often, and also in people who did not have them very often. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP if you are seizure-free is very, very low. And, SUDEP is rare in people who are newly diagnosed with epilepsy.

Any of the following things are thought to increase a person’s risk of SUDEP.

  • Having uncontrolled generalised tonic-clonic seizures
  • Not taking epilepsy medicines as prescribed
  • Having seizures that are not controlled by epilepsy medicines
  • Having sudden and frequent changes to epilepsy medicines
  • 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 epilepsy medicines as prescribed.
  • Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
  • Make sure that you never run out of your epilepsy medicines.
  • Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
  • If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.
  • 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 triggers your seizures.
  • Avoid situations which may trigger your seizures. Common triggers include forgetting to take epilepsy medicines, lack of sleep, stress and too much alcohol.
  • If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.

Epilepsy Action has more information about epilepsy medicines, surgery, seizure diaries and seizure triggers.

Other ways to reduce risk

  • Some recent research suggests that people with epilepsy who sleep on their stomach may be at higher risk of SUDEP. This is compared with people with epilepsy who sleep in other positions. If you are able to, you might reduce your risk of SUDEP by not sleeping on your stomach
  • If your seizures happen at night, consider using a bed alarm, which can alert another person if you have a seizure. This will enable the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)

For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.

Tel: 0300 999 0004 (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk

The Disabled Living Foundation's website is called Living made Easy.

Telecare (alarms linked to a help centre)
Website: livingmadeeasy.org.uk/telecare

Bed alarms
Website: livingmadeeasy.org.uk/bedroom

  • Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of 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. For example, you may choose to live with other people.
  • Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research that proves this. If you think an anti-suffocation pillow would help you, please talk to your epilepsy nurse or epilepsy specialist. They will help you to decide whether an anti-suffocation pillow would be a good idea for you.
    For details of where you can buy anti-suffocation pillows, contact Epilepsy Action.

Epilepsy Action has more information about safety and epilepsy, identity jewellery and epilepsy awareness cards.

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. Here are some things you can do to help them recover. Your actions may also reduce the risks of SUDEP.

Remember ACTION for tonic-clonic seizures:

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C Cushion
Cushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I Identity
Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O Over
Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N Never
Never restrain the person, put something in their mouth or try to give them food or drink

The recovery position

The recovery position

Call for an ambulance if...

  • You know it is the person’s first seizure, or
  • The seizure continues for more than five minutes, or
  • One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
  • The person is injured during the seizure, or
  • You believe the person needs urgent medical attention

Further information about SUDEP and bereavement

SUDEP Action
SUDEP Action offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.
Tel: 01235 772 852
Website: sudep.org

NHS.uk
If you would like more information about dealing with bereavement, go to nhs.uk

Help is at Hand
The Suicide Bereavement Support Partnership (SBSP) produce a document called Help is at Hand, which is an information guide for anyone bereaved by suicide.
Website: supportaftersuicide.org.uk/help-is-at-hand
SBSP can be contacted through an online form on their website.

This information was written by Epilepsy Action’s advice and information team with guidance and input from people living with epilepsy and medical experts.

If you would like to see this information with references, visit the Advice and Information references section of our website.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
F006.04

Epilepsy Action would like to thank Dr Lina Nashef, consultant neurologist at Kings College Hospital, UK for her contribution to this information.

Dr Lina Nashef has no conflict of interest to declare.

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

  • Updated January 2013
    To be reviewed January 2016

Comments: read the 26 comments or add yours

Comments

Last year on 20th February I lost my daughter Francesca aged 19. She had nocturnal seizures for 9 years and was on Tegratol up until she was 17 when a neurologist said she didn't need them and weaned her off them by reducing 1 a month, she had a massive breakdown of some sort and ended up staying on a mental ward at the hospital. They never prescribed any other medication and we were sent down the route of Fran having anxiety problems and she brought the seizures on. Throughout that time we had lots of visits to a&e by ambulance,as soon as she was back to normal we were sent on our way and when refused to leave we were threatened with the police. Nobody was bothered, until one day when Fran got admitted to a ward and a consultant saw her having a seizure and said they were not sudo seizures. He arranged for her to have another MRI scan which didn't show up anything just as before. He arranged for her to see a neurologist in London as we wanted her to have a video telemetry done and they had a bigger budget for that. After the first appointment another MRI scan was carried out but showed nothing,then an IQ test which was low due to sleep deprivation. We waited and waited for a follow up appointment for the next test which was the video telemetry, this never happened as time ran out for Fran. So much suffering for Fran with no quality of life,she was so brave and always managed to smile through all the injuries she sustained. We never had much support in all that time,nobody warned us of Sudep or NICE guidelines that should have been followed. We have been robbed of a beautiful daughter who had so much to give. I miss her everyday and the pain never eases. I have joined Sudep action and I'm looking at ways to raise money for them. My heart and thoughts go out to everybody that has and are going through similar. Please have a read of the NICE guidelines for epilepsy which may help you have a better understanding of what should be followed within the NHS, I wish we had known about them.

Submitted by Annabelle Ciavarella on

Dear Annabelle

Thank you for sharing your experience with us. We have the greatest sympathy for what you and your family have been through. It is our aim to make people better informed and aware of the wide range of epilepsy related issues. In fact we worked with the NICE Guideline Development Group to make sure that their recommendations included giving people with epilepsy all the information they needed about diagnosis and treatment.  We hope that this information will give people the confidence to ask questions about their treatment options, to improve their quality of life, and hopefully avoid this type of loss.

Sincerely

Sacha
Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Don`t know where to start. i lost my wonderful husband on the 16th July 2014. He had nocturnal seizures throughout his life after being beaten up at the age of 19yrs. it was really hard in the begining because it was not recognised as seizures so went without treatment for 2 yrs. Then after seing a consultant he was put on tegratol.

Fast forward 15yrs he started to have seizures more frequent because he was sent by his GP to see another consultant at a different hospital because our GP stated it has quicker and cheaper for the NHS. So along we went he refused to allow me in the room with my husband stated i would hinder his discusion. He took my husband there and then off all medication- just stopped stated it was alL in his mind. I went mad it took me 1 week to get a repeat prescription at that point i and my husband had ended up in A&E due to going through a glass window.
We left the GP surgery and went with another. Yes i put in a complaint but the hospital stated they had already removed him from the hospital without giving to much information to us.

We saw his usual consultant who told us the other had been struck off.

fast forward another 5 yrs and my husband had been put on tergratol and limictal. after 6 mths he began to have pain and cramp in his hands, He use to use his watch to wrap around his hands. Months passed and we saw our epilepsy nurse in the commuity this was done every 6 months over 5 years, adding and changing medications t ohelp with his sleep. It got to the point that he was not sleeping because he was in severe pain all over his body but not one Dr did a blood test t odetermind what the problem was. Our GP stated he was to young to have arthritus or anything similiar because our GP was the same age. I had an argument with him and was told i could find another GP if i did not like it. After so many appointments with the GP SURGERY seeing different GPs, i telephone the hospital begging for an appointment to se the epilepsy Dr. I was told i could see the nurse and if she felt we needed t ose the Dr she could make the appointment. We saw the nurse and they intoduced Epilim at 1200mg and just reduced the tegratol slowly over 50mg weekly. We did this but nothing changed it just kept geting worse he never slept during the night in bed because he would kep everyone awake hitting his legs or taking a red hot bath as told by the GP. We were then told by the nurse we could see a new Dr and her waiting list was just 1 week.The new Consultant said he had severe damage to al his nerve endings due t olong use of limictal. No one ever mentioned this or did any tests the yjust kept teling my husband it was all in his head. He often stated he felt like he was going insane and would rock back and forth due to tiredness and pain. This Consultant then put my husband on a new tablet at 100mg the first week then up to 900 mg the following week so no slow introduction. He forgot his name within the first three days could not remember his childrens names he had t oput reminders on thrir pictures they said it was due to the new medication. 8TH DAY ON THE TABLETS MY HUSBAND WENT TO BED AND NEVER WOKE UP. SUDDEN DEATH -NO MEDICATION OVER LOAD YES. NO ONE LISTENS NO ONE CARES. NOW MY CHIKLDREN HAVE NO DAD AT 49YRS. DON`T ALWAYS TRUST THE DR. I FOUGHT WITH ALL I HAD BUT NO ONE LISTENED.

Submitted by Jane Johnson on

Dear Jane Johnson,
I am truly so sorry for your loss! I know! I just lost my husband 2 weeks ago on the 16th of Nov. with no cause of death stated yet. It could take up to 3 months for the Medical Examiner to know. They have to wait on the toxicology results and autopsy. I wondered if it could have been SUdEP. My husband's Epilepsy was definitely brought on by his Father's abuse. He beat him from a young boy (as young as 6 or 7) until he was about 17. By then, he stood 6' 2", and towered over his Dad. He also was a victim of violence growing up as he wore his hair very long back in the early 1970's. Between a corrupt Officer from another County who broke his eye orbit with his billy club, (he hated "long haired hippies!) and some redneck students in school who ran over him with their car, he was subjected to a lot of pain and bullying. As he got older he knew the seizures was something he shouldn't have, but he kept quiet about them and began self medicating himself to abate them. Year's later when I met my husband again at my sister's funeral it was 2005 and he was 49 and a fully admitted alcoholic. He asked me to sponsor him and he quit drinking. We were married on April 12, 2006. His seizures were worse so he finally got diagnosed and eventually KEPPRA was the most successful medicine that worked for him. By then he was also Disabled with a bad knee, back, shoulder, and severe RA. We had his knee replaced in 2009, and his shoulder last Jan. 2015. Over the last year he was having trouble walking and balancing and he ran INTO our Hutch which fell on him and broke all my Mothers keepsakes of Crystal and Antique China. Then on 2 other occasions he fell ONTO 2 different coffee tables we owned, breaking the beveled smoky glass and hurting his back. Finally on Nov. 14th last year he sat up one night breaking all of my nick nacks with a hammer because he was trying to find me, and he couldn't find the remote. I was in bed asleep with our 5 yr old G'daughter visiting and I finally had to call an ambulance. Eventually they discovered he had dangerously low potassium levels among a few and he was treated for this successfully. He had no memory of what he did. He was becoming more forgetful and I think the epilepsy was doing long term damage. Then, 2 weeks ago he drove to see his daughter and new born grand child when he stopped at our local rest stop to refresh. It was very early in the morning so he had to wait a few hours as they were not awake. It was about 5:00 am. He never made it to her house. A motorist who stopped at the rest area called 911 and said there was a man slumped in his car and unresponsive with both doors open. By 7:10 the State Trooper arrived and said he had no pulse at 7:14. The motorist called at 6:35. So we think my husband died between 5 and 6 am. What is so hard was the not knowing why or how. And that he was alone. I miss him so incredibly much and as of now have still been unable to bury him. He had no insurance and we were both on disability. That's hard enough. But they kept our car and had it towed, and I had no way of getting it out. They now want $ 1600.00 for towing and storage. All of this has left me in a fog of sheer pain without him with me, or his voice or just the comfort I felt when we're together . And his family only want to look through our storage unit to remove any "family " heirlooms that we might have. They won't help bury him but they offered to buy a clock from our unit. Well, guess what? No one is going through that unit until I feel up to it. I paid the bill, and I'm his widow, so no one can have access to it unless I decide and when I'm ready. Which may be awhile. I only pray he wasn't in any pain when he died. I love him so much. I know his daughter wants to remember her Dad, but G'Ma's Hutch and mantle were not her father's. They were items we received in 2011 that he wanted when his mother died. I thought it was pretty low to ask for these items on the very night he died. I was appalled and didn't want to discuss it. I still don't. Right now, I just want to know why he had to die so young and what caused it. Thank you for sharing your story. And Thank You for letting me share mine. Bless You and your family!

Submitted by Susan Pethtal on

Hi my name is Anton, I am 27 and I have epilepsy. I have only had a handful of seizures and I am seizure free for more than 5 years now and fingers crossed that continues. my seizures would come through lack of sleep, forgetting my tablets especially if I have consumed excessive alcohol and forgot my tablets.

I was diagnosed on my 17th birthday and I have been taking Epilim for 10 years, and this is the first time I have heard of SUDEP. After hearing on a local radio station about a young 18 year old man who died of SUDEP, I decided to look into it. A lot of stories of people who have lost family due to this condition is quite frankly frightening.

I can understand why people with Epilepsy don't always take their tablets because I have done this in the past. The main reason for me was I struggled to get into a routine and I felt by taking these tablets I was somehow inferior to people without Epilepsy. Also to this day I only tell the bare minimum amount of people that I have epilepsy because I don't want to be judged and put other people on edge. No one at work knows I suffer with epilepsy and i have heard people first hand criticise people with epilepsy so I know first hand there is a stigma attached to the condition whether people like it or not.

My point is I don't think the dangers of SUDEP are highlighted to people with the condition as I didn't realise how serious the consequences are for not getting enough sleep, taking tablets and excessive alcohol. The anti-suffocation pillow has never been suggested and it's something I will be investing in.

Thank you to anyone who has read this and a special thanks to all the people who have shared their experiences on here particularly to those who have lost loved ones to SUDEP my deepest sympathys are with you

Submitted by Anton on

So November is Epilepsy Awareness month, but for us living with it, it is not just about the pretty purple ribbons or heartSo November is Epilepsy Awareness month, but for us living with it, it is not just about the pretty purple ribbons or hearts, it's more of thinking about and appreciating any and all of the other people and family that are effected by this on a daily basis!
Wether it's your spouse or significant other that wakes us up in the middle of a nocturnal seizure before it can generalize and cause sudep! Sudden unexplained Death from Epilepsy! Or a simple ride to the store or doctor's office when you lose your license!
A simple reminder to take your med's or a back rub after you had a seizure and feel like you were ran over by a truck!
And the hours they have sat by our side in the hospital and slept in a chair! And been there through all the tests and surgeries! With people like this in our lives doing these things that seem like no big deal to them, let me be the first to say, I Am AWARE of everything you do and there is no thanks you want back, just know, we couldn't do it without you ! all of you! Our family and friends, to our doctor's and the dog's and trainers at Arizona Goldens!
So Epilepsy Awareness month huh? I say it's awareness of the people that don't ask or expect anything in return for making our lives easier! It's hard for us all to lose any or all of our independence and it takes a lot to push your pride aside and except all the help!
But just remember that we are the Epilepsy warriors an we don't quit!

Don't Quit
Don't Quit no matter what!
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won if he'd stuck it out.
Don't give up, though the pace seems slow -
You may succeed with another blow.
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are -
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.
God bless you all your friends Tim & Garths, it's more of thinking about and appreciating any and all of the other people and family that are effected by this on a daily basis!
Wether it's your spouse or significant other that wakes us up in the middle of a nocturnal seizure before it can generalize and cause sudep! Sudden unexplained Death from Epilepsy! Or a simple ride to the store or doctor's office when you lose your license!
A simple reminder to take your med's or a back rub after you had a seizure and feel like you were ran over by a truck!
And the hours they have sat by our side in the hospital and slept in a chair! And been there through all the tests and surgeries! With people like this in our lives doing these things that seem like no big deal to them, let me be the first to say, I Am AWARE of everything you do and there is no thanks you want back, just know, we couldn't do it without you ! all of you! Our family and friends, to our doctor's and the dog's and trainers at Arizona Goldens!
So Epilepsy Awareness month huh? I say it's awareness of the people that don't ask or expect anything in return for making our lives easier! It's hard for us all to lose any or all of our independence and it takes a lot to push your pride aside and except all the help!
But just remember that we are the Epilepsy warriors an we don't quit!

Don't Quit
Don't Quit no matter what!
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won if he'd stuck it out.
Don't give up, though the pace seems slow -
You may succeed with another blow.
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are -
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.
God bless you all your friends Tim & Garth

Submitted by Tim mullen on

its been 6 days since i lost my big brother john..he was just 33. john was diagnosed with epilepsy when he was a child his epilepsy affected the learning side of his brain so he had some learning difficulties such as reading writing etc. he had the mentality of a child..last saturday we celebrated a family function my brother was on top form he joked he laughed he chatted all night lonh sunday night we sat for supper same again flying form usual joker and the same again monday. for those 3 days my brother was the happiest ive ever seen him. he never drank and he never smoked and took his medication everyday as it was given by my parents..he was there world..on the 27/1/2015 my brother forgot to wake up. 3 months for the coroners to tell us what happened is too long to wait so i decided to research and this is the first ttime i have ever heard of SUDEP..why are families not informed.i dont yet know if this is what happened to him all i know is he is gone..he wwas found by my father asleep in his bed not a hair out of place..i am broken ny family is broken..this is the first time ive let myself tell the story my heart breaks for all you families out there that have been affected by this SUDEP but in some small wway its a comfort to know we are not alone..remebering my super hero john always missing him forever and one more day his distraught big/little sister xx

Submitted by lyndsay on

My 52 year old sister passed away 15.5.15 she was diagnosed with grand mal epilepsy from baby she had so many episodes over the years that caused her to fall and injure herself we lost count over the years she had seen many doctors and consultants she had been on many different medication for the condition she went through a bad time after her husband passed away. 9 years prior every time she was sent to hospital for tests and scans they would not be able to find anything she even went under the being videoed over a 4day period in hospital but as usual no doctor had seen her in one of her attacks until she was admitted to hospital on the 12.5.15 and sent home on the 14.5.15 she sadly passed away on the 15.5.15 the out come was SUDEP. We as a family had not known about this until I read about the many other sad losses of the many families that have had to come to deal with SUDEP.
RIP Susan love and miss you always xx

Submitted by Sharon evans on

I have had epilepsy for 53 years since auto accident at age 17. About 14 years ago, I had left temporal surgery and it completely stopped all day seizures, however it began nocturnal seizures. I still get these and I have continued drugs. I take Lamictal and Clorazepam . It is scary in a way since the thought of SUDEP is on mind.

Submitted by doris on

Hi Doris

Thanks for your message. It sounds like you’ve been through a tough time, and I can completely understand your fears about SUDEP. But it’s important to remember that SUDEP is rare, and there are things you can do to reduce the risks even further. You could ask your doctor for a review of your treatment to try to get your seizures under control. If you’ve not already been seen by an epilepsy specialist centre, you could ask for a referral to one. Current guidelines say that if your epilepsy is not controlled after you’ve tried two medicines, or after two years, you should be referred to a specialist centre. You might find it useful to read our information about how to ask for a treatment review.

If you live with someone, you might want to consider using a bed alarm. This can alert them if you have a seizure in the night, so they can help you by putting you in the recovery position or calling an ambulance if needed. We’ve got information further up this page about organisations that supply bed alarms.

Some research also suggests that people who sleep on their stomach are at higher risk of SUDEP. So if you are able, you might reduce your risk by not sleeping on your stomach. Some people who have sleep seizures also use anti-suffocation pillows. We’re not aware of any research that proves these are safer, but if you are interested in using one it would be worth discussing this with your epilepsy specialist or epilepsy nurse.

I hope this information is useful. If you would like to talk anything though feel free to contact our helpline.

Best wishes

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hello, my name is Stacey but liked to be called 'Stacee' I am 17 years of age and had been diagnosed in 2012 with 'idiopathic generalized epilepsy' with JME, i am on 250 levetiractam keppra and I have quite a few 'Tonic clonic' seizures and when I do have them they are always very severe that I stop breathing and need medical care. I have read so much about 'SUDEP' have spoken to my epilepsy specialist and gp and they have given me leaflets with loads of information, but in the real world so many people have lost their familes to SUDEP and everyone hardly brings it to the attention. how can i live life knowing i can die from a seizure or SUDEP really what is the point i am that depressed about sudep that i need a way out.

Submitted by Stacee on

Hello Stacee

Thanks for your message. It sounds like you’ve been through a really tough time. The thought of SUDEP can be very scary and it’s natural to worry about it. But if you are feeling depressed and like you need a way out it’s really important to talk to someone. If you talk to your family doctor they should be able to help. You can also call us on the Epilepsy Action Helpline, and the Samaritans are available 24 hours a day on 08457 90 90 90.

We think people should be aware of the risks of epilepsy, including SUDEP. But it’s also important to remember the risk of dying from epilepsy is small, and there are things you can do to reduce the risk further. One of the most important things you can do is talk to your doctor or epilepsy specialist about getting your seizures under control. They can make sure you are on the right treatment. 250mg is a low dose of Keppra, so it could be that increasing the dose could stop or reduce your seizures. Or the doctor might decide that a different epilepsy medicine would work better. It’s important not to make any changes to your medication without  getting medical advice, so talk to your doctor first.

Once you are on the right treatment there’s a really good chance you could be seizure free. In fact with the right treatment 7 out of 10 people with epilepsy could be seizure free. And once you are seizure free your risk of SUDEP will be extremely low.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I began to have sleep seizures in 2007 which was complicated by a cancer diagnosis at the same time. I was tested for allergies to medication and continued to have seizures until epilepsy was finally diagnosed in 2009 and I was put on Keppra. I had a bad reaction to Keppra and was slowly changed to Lamotrigine. My seizures are now controlled and I have been seizure and cancer free for some years.
Until today I have never heard of Sudep and am now genuinely scared! I have read that sleep seizures put you at higher risk. I currently don't sleep alone as is am married but, as I am in the military and move around a lot, this means that I may have to live in single living accommodation.
I also am currently refusing to work night shifts which obviously affects my work. I am scared to work them as my epilepsy nurse has said it will put me at higher risk of seizures even on medication. I am thinking of a pillow alarm now, and will work on spreading awareness of Sudep. Thanks all for more info.

Submitted by Fiona on

Hey!
I've been epileptic since the age of 10. Having only just heard of SUDEP from a tv programme, I decided this morning to look it up and wanted to know more about it! I didn't know this existed! I'm 25 now so 15 years of seeing specialists and not being told anything. I will make sure my parents and friends are aware of this.
My epilepsy all started through a my parents having difficult break up resulting in no contact with my biological father. - the best thing for me and my 3 sisters! Until the age of 12-13 I was on epilim medication and seizure free when I decided I was "fine and wanted to be normal" so stopped taking my medication! I don't recommend this. From there till the age of 21 I was seizure free and happy! In university one day I had a seizure luckily sat down in a lecture, embarrassed and gutted didn't come close to how I felt. From there on it had started again. I lost my driving license, to me one of the biggest things. Initially I didn't go back on medication as it was seen as a "one off" and I didn't want to go back on medication. From then on I briefly got my driving licence back before another seizure in work, another embarrassing moment!
5 weeks and 1 day till I got my driving licence back I recently have had another fit in work. This time thou I was stood up and dropped to the floor knocking myself unconscious. When reading what triggers I can tick all the boxes. I'm currently suffering panic attacks, my job is very stressful (I'm a nurse) and I'm not sleeping well as worrying about work. I have in the past not taking my meds, I learnt the hard way so something I make sure I never do this again. I'm now having my meds increased slightly over 2 weeks under consultant instructions.
Reading this I'm realising how lucky I am. I've read the stories about and so sorry to people who have lost a loved one through this. It needs to be made aware not just to people with epilepsy but family/friends too!
I am one who doesn't want people knowing unless they have too as I don't want to be seen/treated differently from "normal" people.

Submitted by Lizzie on

Hi I've just recently found out about sudep. I was having mildish seizures when I turned 13, some people thought I was doing it for attention. When I met my older boyfriend, I was 15 at the time, he believed me as he witnessed in my sleep tonic clinic seizures. I would come round and thee bed would be wet I'd been bleeding from my mouth and covered in scratches. I had very frequent seizures, milder seizures when I was awake. I was diagnosed around 17 years old with frontal lobe epilepsy, there is no family history of epilepsy. But I was a forceps delivery. At 17 I was put on tegrotol which immediately stopped the seizures. Then a few years later they tried to take me off them, but then I had a seizure in the bath, if I handed of cried out my partner would not of heard, even though he had a close eye on me. I was then put back on the tegrotol. I am now 35 and havnt had a seizure since then from about 18. But I am still on the tegrotol. If I miss a dose, I have an aura warning, so I know it hasn't gone, its just not worth the risk coming off tablets. Plus I have a teenage son of 14 and 10 year old girl. I am really shocked about this sudepas I think my god I could of died. What is my risk now, of having no seizures for a long time but still reliant on medication?. I'm worried as I have children. Thank you so much

Submitted by Zoe on

Hi Zoe
Many thanks for your message. I can hear that this is worrying you at the moment.

Learning about SUDEP for the first time can be scary. It is important to remember that the risks of dying because of epilepsy are low, and as this article says, there are some other ways to reduce the risks. The risk of SUDEP if you are seizure free is very, very low.

The most effective, but sometimes most difficult way of reducing your risk of SUDEP is to control your seizures. It is positive that you have found an epilepsy medicine which helps you to control your seizures. It sounds as though you currently have very good seizure control and have had for a long time. If at any time though you are worried about your epilepsy, or your epilepsy treatment, always remember you can contact your epilepsy specialist to talk about it.

Approximately six out of 10 people never find out a cause for their epilepsy. Some people tell us that they have found it reassuring to follow our safety advice, which offers some tips for reducing the risk of injury if you have a seizure at home. Making sure people around you know what to do if you have a seizure may be a good way to reduce any worries you may have. We also have information about a variety of daily living aids on our website which may be helpful. Every person’s epilepsy is individual to them, so each person finds their own ways to live with it on a day to day basis.

If you want to talk more about this, or if we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Hi my son Alan died aged 30.he had seizures on off for 4 years.they would stop he would get his licence back.then they started again but he did not say ..He did not want to lose is licence.so many if buts maybe's.take your medication please don't let another family go through what we are.

Submitted by linda wilton on

Completely out of the blue, I found my daughter collapsed and unresponsive in 2004 with her 11 month old daughter beside her.
After a dreadfully traumatic time in resus and intensive care, she was eventually diagnosed with epilepsy and told to take medication and get on with her life.
After a battle with the PCT we managed to get a referral to the Walton Centre in Liverpool without which my daughter would not be alive today.
We managed to get a more thorough diagnosis ie my daughter's seizures only happen during her sleep and she goes straight into 'status' needing urgent hospital admission as the seizures continue (clusters)
After doing some research and finding the word SUDEP, I asked the Consultant THE question and yes he said she is at high risk.
This is definitely NOT what any parent wants to here, but I felt empowered and grateful that I could move in with them and prevent it from happening.
I believe some members of the medical profession feel that they are scaremongering and don't tell you, but I for one would prefer the truth and it has saved my daughter's life and prevented my granddaughter from being orphaned. It speaks for itself.

Submitted by Jane Phipps on

Hi my girlfriend has just recently passed I found her in bed the cause of death is not obvious do more tests she had epelepsy since a car accident she was admitted to hospital with a broken hip as this happened at home she took her tablets with her but hospital took them and never gave them back she started having seizures caused by electric in air then stopped she never got her meds as hospital still had them sadly she passed on 25-10-2015 I miss her so much and don't no what to do god rest her sole

Submitted by richardcurtis on

Dear Richard
I’m so sorry to hear of your girlfriend’s death. I can’t imagine the pain and anguish you must have gone through at the time and are still experiencing.

It must be difficult to accept but if your girlfriend did die due to her epilepsy, there’s no way of predicting it.

When someone with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it’s called sudden unexpected death in epilepsy (SUDEP).

If the enquiry into your girlfriends death states SUDEP as the cause, you could contact the organisation SUDEP Action. They supports people who have lost a loved one to epilepsy. You might find it really useful to talk to them.

The charity Cruse Bereavement Care can also offer support to you 

If you and your girlfriend’s family believe her hospital was any way involved in her death, hopefully this will be looked at during the enquiry. Another option could be to talk to the Patient Advice and Liaison Service (PALS). They offer confidential advice, support and information on health-related matters and service to patients, their families and their carers. Find your local PALS office.

I do hope things start to feel a little bit easier for you over time. If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.ukor the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Thanks so much for this resource. Our 17-year-old daughter just lost a school mate -- of only 15. None of us had ever heard of SUDEP, or had any idea of the risks she faced . . the 'normal' course of her illness was difficult enough. As heartbreaking as these stories are, it helps to know that this dear girl and her family are not alone in their trials and grief.

Submitted by Rick Stadel on

We’re really glad it’s helpful. It can be such a difficult death to understand. I do hope your daughter is getting the support she needs.

Cherry
Advice and Information team

Submitted by Cherry, Epileps... on

Today, at the neurologist I was informed of SUDEP for the first time. As a registered nurse for 20 years, I'd never heard of it. I don't know why I developed epilepsy as an adult aged 40. It just started one day out of the blue. So far I've fractured my arm and nose. I'm just coping one day at a time, but it's tough not knowing when a tonic clonic seizure will occur and having them in a public place.

Submitted by Ken on

Hi Ken
To be diagnosed with epilepsy must have been a big shock. And the injuries you have experienced sound very painful and distressing. I hope you have started epilepsy treatment to try and stop future seizures.

Most people think epilepsy starts in childhood but as you have found out, it can develop at any age. It will take time to come to terms and for your confidence to return.  But I hope Epilepsy Action can help you in some way.

Apart from our website, we have our local groups, including coffee & chat groups, our online community, forum4e , and we are on facebook and twitter.

We also have a membership scheme, which keeps people up to date with information through our magazine Epilepsy Today.

When you are going out, some people choose to wear identity jewellery or carry an ID card with them to let other people know that they have epilepsy. On our epilepsy awareness cards you can write what someone should do to help you and who to contact. If you would like some awareness cards please email or phone our helpline team.  Or you can order a card from our online shop.

Being told about SUDEP was obviously something you weren’t expecting. Although it must have been scary and caused you to worry, Epilepsy Action believes that it’s very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. I hope you will find our information on Sudden Unexpected Death in Epilepsy informative. Our information is not to frighten people but to give them the best chance of keeping themselves as safe as possible.

If it will help you to talk to someone on Epilepsy Action Helpline freephone 0808 800 5050, we are open Monday to Friday, 8.30am until 5.30pm.

If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk  or phoning Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on