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of everyone affected by epilepsy

Epilepsy-related deaths

In this section:

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

During 2013, 1,187 people in the UK with epilepsy died earlier than expected (premature death). Some of these deaths could have been prevented.
This information is for you whether you have epilepsy yourself, or you care for someone with epilepsy. It is also for you if someone you know has died from an epilepsy-related death.

Why it’s important to talk about epilepsy-related deaths

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. Knowing about the risks can help you to make decisions about your epilepsy treatment and your lifestyle.

If you would like to speak to one of our advisers about epilepsy-related death, please contact the Epilepsy Action Helpline

These are some of the causes for epilepsy-related deaths:

  • Sudden unexpected death in epilepsy
  • Accidents
  • Status epilepticus
  • Suicide
  • Deaths during pregnancy

Sudden unexpected death in epilepsy (SUDEP)

The definition of SUDEP

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

Premature death in people with epilepsy is higher than in the general population, and SUDEP is the most common cause of this.

SUDEP has been shown to be connected with seizures, particularly tonic-clonic (convulsive) 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.

What is my risk of SUDEP?

Like cot deaths, no one can say whether or not a person is in danger of SUDEP. But there is evidence that the risks are different for different groups of people.

  • If you are and adult and have epilepsy, your risk is 1 in 1000. This means 1 person in 1000 will die, but 999 will not
  • If you are a child with epilepsy, your risk is 1 in 4500. This means that 1 child will die, but 4499 will not
  • If you have 3 or more generalised tonic-clonic seizures in a year, you have an increased risk, particularly if they happen during sleep
  • If you are being considered for epilepsy surgery, you are considered to be at increased risk
  • If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
  • If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
  • If you have absence or myoclonic seizures, you are not known to be at increased risk
  • If you have very few seizures, you are at a lower risk, but still at risk

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 to manage your epilepsy:

  • Always take your epilepsy medicines exactly as prescribed
  • Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first
  • Make sure 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
  • 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
  • Try not to sleep on your stomach as recent research suggests that people with epilepsy who sleep on their stomach may be at higher risk of SUDEP

Other possible helpful ideas:

  • 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
  • Avoid situations which may trigger your seizures. Common triggers include forgotten epilepsy medicines, lack of sleep, stress and too much alcohol
  • Consider buying a safety pillow. Safety pillows have small holes. They may help you breathe more easily than a normal pillow if you are lying face down during a seizure. There is no evidence however that safety pillows reduce the risk of SUDEP
  • If your seizures happen at night, talk to your family doctor or epilepsy specialist nurse about using a bed alarm. Bed alarms can alert another person if you have a seizure. This will help 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 can be very expensive and 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.)
  • Tell people about your epilepsy and let them know how they can help you if you have a tonic-clonic seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy

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.

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

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.


Epilepsy Action would like to thank Consultant Neurologist Dr John Paul Leach of Southern General Hospital Glasgow for his contributions to this information. He has declared no conflict of interest.

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

  • Updated April 2016
    To be reviewed April 2019

Comments: read the 34 comments or add yours


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

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 Lizze
It must have been a shock learning about SUDEP this way.

We agree with you, we believe that it is very important for not just the person with epilepsy to be aware but also their families too.  

I hope your epilepsy medicine works well and you get your seizures controlled again.


Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by 37204 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.

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

I wish someone would have told us . As a mom I'm asking myself constantly "what if I could have known"

Submitted by Andie 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.

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.

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.

Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

I recently lost a guy that I was seeing due to SUDEP and I don't know a lot except for what I've been able to find online the last couple days. I was asleep when it happened and found him later already too late to do anything. My questions are: Do they know whats happening? Do they feel any pain? Had I been awake and sitting next to him could I have saved him? Would he have survived even if he had to be resuscitated? I really need to know if there is something I could have done, the not knowing is eating me up. He was in his early 40's and healthy as can be except for his unexpected passing. How is death determined? I ask that because we had to wait on toxicology results due to the autopsy being inconclusive. Why do they say its inconclusive?

Submitted by Grieving for Him on

I’m so sorry to hear of your friend’s death. I can’t imagine the pain and anguish you must have gone through at the time and are still experiencing.  It must have been such a terrible shock for you.

Trying to find answers to your questions is understandable. To help you with this, and for support from others who understand what you are going through, you will find it helpful to contact SUDEP Action. They supports people who have lost a loved one to epilepsy.

I hope this is of help.

Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

Lost my son to epilepsy,23 years old..always ask,why?

Submitted by David Taylor on

Hi David
Not having an answer for why your son died, must be really hard, however long ago it happened.

Our thoughts are with you.

Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

How many UK road accidents were caused by a driver having a seizure at the wheel? What is the probability of having a seizure at the wheel following a previous seizure as a time function. So, what is the statistical basis of the DVLA's requirement for a 12months interval. Have the social consequences of a 12month driving ban been assessed?


Hi Donald

We don’t have these figures ourselves, but you may find the answers you are looking for in this report from the European Working Group on Epilepsy and Driving in Europe. The advice in this report informed the EU Directive on epilepsy and driving, which the DVLA rules are based on.

Best wishes


Epilepsy Action Helpline Team

Submitted by Grace-Epilepsy ... on

Hi there, I lost my brother to SUDEP in August. He was 24 and always took his medication. The hardest thing for me is making sense of his death, I study medicine so something like SUDEP which has no apparent cause is really hard for me to comprehend. I also don't understand why we were never aware that SUDEP was a risk, I'd never even heard of it until we received his post-mortem results. I've read that SUDEP and cardiac arrest are related, is there more that we can do to detect risk factors in epilepsy patients. I can't even explain how much is troubles me that other families may have to go through what mine have this year.

Submitted by Grace Harker on

My nearly 8 yr old died from seizure while she was asleep. She had suffered these before but was saved. The last one she was not found in time and could not be revived. I had asked my doctor about some sort of alarm for night time before the fatal seizure and she said there was nothing. Now I read there is. It is not fool proof but I urge ever parent to do all they can. You may feel some comfort in knowing you tried everything.

Submitted by Deborah tobin on

My daughter passed away 5 weeks ago due to her Epilepsy- I didn't know about this - I wish I had ... very similar situation to yours,
I am so sorry for your loss x

Submitted by Rhona Rance on

I lost my beautiful (epileptic) son on the 26/10/2017 he was only 22. There was an autopsy that could find no cause of death, so the coroner has sent his heart (& slides?) for tests in London, we live in Kent, as a result we can’t lay him to rest until his heart is returned as we don’t want to send him on his next journey incomplete.
Does anyone know what they are looking for/ hoping to find by doing this? It is adding pain to an already horrendously heart breaking time for his mother, siblings and me. Ted(dad)

Submitted by Ted webster on

Dear Ted

I am so very sorry to hear of your loss.

The people who will be best placed to answer your questions are SUDEP Action. They specifically support people who have lost someone due to epilepsy. Their phone number is 01235 772850.

Our thoughts are with you and your family at this difficult time.


Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

Glad I have looked into this it will help me if my wife ever has a fit. Knowledge is a great thing.

Submitted by David Simmonds on

4 years ago my sister died in her sleep ( she was 47) she had had epileptic seizures since she was 11.
3 months before she passed she had a Nasty fall ( from a seizure) deeply cutting the side of her head / temple , after the fall they changed her medication , from there on she experienced memory loss & daily headaches. I visited her 3 days before she died , she had no colour what so ever in her complexion ( she almost looked grey) and was slurring her words real bad ( like she was drunk).
She was found in her bed a few days after she died , post mortem showed she died of natural causes ( they could not find any other reason) .. we , as her family know it was SUDEP.
A year after she died her son 19 , & my son 19 both started having seizures ( & Were both diagnosed with epilepsy).
My son is adamant he is not having any in his sleep but I know he is as he’s changing his sheet more than a few times a week ( and telling me he spilt a drink).
He hates the fact he has epilepsy & is so depressed most of the time ( he also has ADHD with doesn’t help his down moments, he’s also admitted to feeling suicidal at times ) if I try to talk about it he gets so angry at me.
I want to help him but he just won’t let me. :(
It breaks my heart knowing that I could possibly lose him.
I have also lost other family members through SUDEP ( my cousin & my cousins granddaughter), my uncle ended his life because of his epilepsy, also my aunt hit her head on a radiator during a seizure & died.
All the family members with epilepsy (9 that I know of) are all on my mothers side of the family so obviously hereditary ( All of which started between 7 and late teens ) .. it’s very scary to know that they can just happen out of the blue.,
Im so Sorry this is so long , it’s just been nice to get it off my chest , I don’t usually talk about it ( or nobody wants to listen as they don’t understand) xx

Submitted by Tracie on

Dear Tracie

It’s understandable you need to express your feelings and concerns.

Losing so many family members to epilepsy must be making your son’s diagnosis more difficult to cope with. 

Everyone reacts differently when diagnosed with epilepsy. We often hear of people struggling to accept their epilepsy. As you are finding out, it’s not just difficult for the person, it can be difficult for those close to them. 

Knowing what to do or say when your son is feeling down or not willing to talk, is a difficult situation to be in. In most case people find it helpful to talk or contact people who understand what they are experiencing. Some people may reach this stage quickly, but some people may take a long time. It’s suggested coming to terms with a new diagnosis can come in stages, for example experiencing shock, anger, denial, understanding and then acceptance.

I can only suggest you do what is best for you until your son is ready. If you feel you need to learn about epilepsy, then do so. What you learn will then be very helpful when your son is ready. If things are getting to difficult, could you try explaining to your son how you are feeling? Sometimes the person can be so wrapped up in what they are experiencing, they don’t realise what affect its having on people close to them.

If you think it may help your son (and nephew) to talk to others with epilepsy or to someone who doesn’t know him, we have different ways to help with this. We are on facebook, twitter and we have an online forum.

There is also the epilepsy social network and chat room for young people with epilepsy. It’s called the TEA room (Teenage epilepsy Agenda) and it’s for young people between 13 and 19 years old. The Samaritan could also be a good contact for your son, as they are open 24 hours.

Dealing with the emotions felt with any bereavement can be difficult. Some people find bereavement counselling helpful. If you think this may help you, you could contact Cruise Bereavement. As epilepsy is a major part in most of your experiences of bereavement you could also talk to SUDEP Action

Finally you or your son can always talk to our helpline team. The Epilepsy Action Helpline freephone 0808 800 5050 is open Monday to Friday, 8.30am until 5.30pm.



Epilepsy Action Helpline Team

Submitted by rich on

Thsnkyou for your reply Diane.
So , on Sunday , at around 3pm, I actually walked into my his bedroom ( due to hearing a strange noise) he was having a seizure in bed.
As far as I’m aware he hasn’t had a full on seizure for over 2 years (but he does have lots of absent seizures) even though I think he’s been having them in his sleep I can’t be 100% certain.
Anyway, after his Sunday episode , he was in a daze ( like he was constantly in absent seizure mode) , in & out of sleep , violently sick , and his head hurt so much he couldn’t move. He slept most of Sunday and woke 11am Monday ( feeling a lot better). He has always been fine after about 2 hours but this time was completely different.
Today he has said he feels like a new person, he feels so happy and everything seems different , taste, smell, even visually .. he has started to stutter a little which he hasn’t done in a good few years ( he use to stutter before he started having seizures but he seemed to stop suddenly) Also, he’s said that some words he can’t pronounce properly ( they come out all wrong ). He just smoked a cigarette and said it tastes like ice cream .. he seems to like the strange feelings he’s having , he finds it quite funny, but I’m a bit worried ( surely it’s not normal)?!!

Submitted by Tracie on

Hi Tracie

I’m sorry to hear your son had a seizure on Sunday. It must be such a worry for you. 

If the symptoms are not connected to his ADHD it would be best to talk to your family GP, his epilepsy specialist or if he has one, his epilepsy nurse. It could be related to epilepsy but you need a medical diagnosis.


Diane Wallace

Advice and Information Services Officer

Epilepsy Action

Submitted by rich on

All these stories are so touching. My seizures have been happening since I was 6.
I have a hard time with the side affects of the medicine. I try to get the doctor to lessen them.
They have always told me I could have a seizure that doesn't stop.
I have never believed them.
Until reading this. I'm 63.
Thank you so much.
Again my thoughts to everyone who wrote.

Submitted by Gina Montminy on

my son age 24 died on 8th march 2018...i am heartbroken, he had epilepsy since a young child, as baby had febrile convulsions from age 6 months old.
i never knew of sudden death...he has a recent medication change from tegratol to lamotrogine and because of a recent eeg his brain waves were very active ..his specialist gave him another pill to take 1 a night for 1 week, to dampen his brain waves down...1 tablet at night before bed he had it tuesday night had a fit and next night also had a fit and the third night had a small fit and died...i am having an autopsy done ..my sons funeral is on wednesday our family is shocked people need to be aware of this sudden death

Submitted by beverley jones on

Hi Beverley

I am so sorry to hear about the death of your son. It must be a dreadful shock for you. And yes we really agree that more people need to know about this.

Hopefully you know about SUDEP Action now. They have a dual role of campaigning around SUDEP. And they also have a helpline for people in your situation. The number is 011235 772850: https://sudep.org/

I very much hope the funeral is what you need it to be.

Kind regards


Epilepsy Action Helpline Team

Submitted by rich on

Our beautiful daughter kennedy was first diagnosed with epilepsy in 2007 at the age of seven. She had 3 seizures in 24 hours. Her seizures seemed to happen while she was sleeping. We right away called out to God for help. Help to find the right doctors. Help for the proper diagnoses and for proper treatment. God answered our prayers almost immediatly. Within hours we were meeting with an epilepsy specialist. He seemed to know by her testing exactly what types of seizures she was having. Started her on her meds. They worked! Kennedy Hadn't had a seizure that we know of since 2007. However in the last few years kennedy had been having migrain headaches. We right away talked with her doctor about this. He prescribed a medication to help with the migraines and sure enough they seem to be a lot less often. Things seemed to be going great! Kennedy saw her docs regularly for check ups and testing. Each time all results were good. Docs seemed to have no concerns, nor did we. Kennedy was a bright student, did very well in school. Had a very busy life playing sports, working and voulentering at numerous events. Kennedy got her drivers license, graduated at age 17 and went on to collage..... if Someone didn't tell you that kennedy had epilepsy, you wouldn't know. Her life seemed no different than anyone else. As her mom I worried terribley the first few years after she had been diagnosed. As years passed I worried less. Complications from epilepsy weren't really a fear that we had anymore. On March 11 2018 our whole world was turned upside down when our beautiful daughter kennedy passed away unexpectedly in her sleep. See, we didn't think that SUDEP was something we had to worry about. Keendys seizures were controlled well by her medications. There were absolutely no warning signs that we could see. She seemed healthy and happy as ever when she went to bed that night. Our hearts are broken into a million pieces. We hope and pray that all parents with epileptic children read up on SUDEP. Ask your doctors about it. We thought we knew all we needed to know. We didn't think she was at risk💔

Submitted by Andie on