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Sudden unexpected death in epilepsy (SUDEP)

In this section

Introduction
The definition of sudden unexpected death in epilepsy (SUDEP)
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

Introduction 

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

  • 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

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: www.sudep.org

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. See SUDEP.

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

Code: 
F006.03

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 2015

Comments: read the 41 comments or add yours

Comments

I will never forget the day my mom called me to give me the new that my 42 uncle had passed away so unexpectedly. It was June 7 2012. My grandma found him in his room since he lived with her. She was wondering the next day why he had not come downstairs to eat so she called out to him. No answer. She went upstairs because she knew he had these epileptic seizures, and then she found him. She blames herself for not having found him sooner but it is not her fault. God decided that it was the day to take him we all don't understand why. Till this day I feel it isn't fair, just to trust in god he knows why he does things and shortly after my uncle passed I find out that I am pregnant. I feel like god always takes something away and gives something back even if it is the most painful. God bless everyone and sorry for your lost ones!

Submitted by Veronica Brea on

Hello. My little boy is 2 and a half and today he had his 4th seizure. I wasn't expecting it. I was kneeling on the floor as we were playing with play dough and he suddenly made that funny sound and went rigid and fell down. He was absent for a few seconds then started curling inwards and went grey. He was on day 2 of Epilim and his previous 3 seizures had been when he was sitting/ lying down and was dropping off to sleep. (1 status epilepticus lasting over an hour, 1 tonic clonic lasting less than 5 mins and and 1 tonic clonic lasting 5 mins)This was just after lunch. His post dictal phase lasted over 2 hours. Up until now I have felt really positive but today I am frightened that he has a dreadful syndrome and I might lose him. He is so clever and funny and loving. I don't want to lose him. How likely is it that he has Dravets or something equally degenerative and horrible. Who can give me a prognosis about my little boy?

Submitted by nancy slater on

Hi. It can be really distressing to see your child having a seizure, especially when he is so young. Epilepsy medicine takes about two weeks to get into your system. And then it may take a while to get the right dose of the medicine. So it is very early days with regard to how well his Epilim will work.

Certainly some of the syndromes do make for very difficult reading. But the possibility of your son having Dravets for example, is one or two in every 500 children with epilepsy. And only the milder syndromes are a little more common. By milder I particularly mean syndromes in which it is possible for a child to get seizure control, and not necessarily be affected long term in any other way.

Meanwhile, I wonder if there is an epilepsy nurse you can talk to, before your next appointment with a specialist ? If there isn’t, and you are continuing to feel anxious, it may be useful to talk to your family doctor. You are also very welcome to ring our Freephone Epilepsy Helpline.

I really hope things improve for you and your boy very soon.

Cherry
Advice and Information Team

More information on children with epilepsy
More information on epilepsy medicine
More information on the Epilepsy Helpline

Submitted by Cherry@Epilepsy... on

my name is Jessica and I'm so sorry about your son. my daughter had the same thing. she passed away with a sleep seizure. she was almost two. she would of been 13 this February.

Submitted by Jessica on

I started looking into this BC I just lost my daughter who me was only 2 as of July 12,13 she was found lying on the bathroom floor barely holding on to life. She was found at approx. 12-1 am and confermed gone approx, 2-3 am Oct. 20,13...she's never been diagnosed with seizures and neither her father nor I have ever suspected her to have it....I do occasionally suffer from what I believe to be seizures but I rarely have them normally I start to feel sick to my stomach, and I start to feel really hot and I am able to know when they come on BC of those symptoms, I sit down and rest my head normally eyes closed and resting my head upon my forearm...then I come too..disoriented and tingling all over. Most of the time I lose control of my bladder but sometimes I don't, I've been told every time I've had one except once...that I stop breathing and stiffen up. But once I was told I arched my back and my arms were up flailing??? Idk exactly why or what or how BC I do not have the resources to see doctors....but my daughter was up to date on her shots perfectly healthy the autopsy concluded no obvious cause of death as well as toxicology report (I have yet to research the final reports) came out xlean. I have to know what happened to my daughter, I can't stop thinking and wondering I have been going threw this in the worst ways of depression but I can't just let this slide as a mystery and live with what its.....

Submitted by Ashley wright on

Hi Ashley

I have just sent you an email. I hope it helps.

Cherry

Advice and Information Team

Submitted by Cherry on

I'll never forget that night my mum passed away, I was in bed as I had school in the morning. My mum and dad were still up and I was woken up but the sound of my mum, it sounded as if she was crying. But I was wrong, she was in the middle of having a grand mal seizure, my dad managed to get her to their room and into bed to try and sleep it off when the fitting calmed down, then all of a sudden my mum started to littrely rolled down the bed, my dad (bless his heart) tried his best to keep her from falling off the bed and hurting herself.
My dad had no option but to gently let her go on the floor. I came back out my room as I heard my dad on the phone to emergency out of hours number. I went into my parents room to my mum in the recovery position. I sat on the bed looking down at my mum, I heard my dad shouting through to me to talk to my mum, but I was too upset and scared to even utter a word. I was only thirteen at the time, I have seen my mum have seizures before but never seen her take one that bad that night.
Once the paramedics came, they tried a couple of times to get her back to life, but failed. So they pronounced her dead. She was 46, just a month shy of turning 47.
I'm not a deeply religious person, but I know mum you looking down on me going that's my little girl. I know your not here in person with me, but you'll always be with me in spirit. R. I. P. mum 1954 - 2001

Submitted by Claire on

My husband,Richard age 72, died suddenly last Thursday 6 December 2012 and the cause of death has been put down as SUDEP. He had not had a fit for three years and thought that the. epilepsy, which was the gran mal, which he had since a teenager, was over. Richard would always have known about this sudden death risk all his life but never in Orur 40 year marriage did he tell me. I'm so sad I did.not know this. God Bless and keep you Richard. Xx

Submitted by Margaret Cleave on

After reading all these comments it has been a real eye opener. I have temporal lobe epilepsy and had my first seizer when I was 15 years old. Before then I used to have petit mal for years. To be honesty the petit mal were worst for me then the seizer because you’re still conscious and don’t know what’s going on. After a seizer it’s like having a massive hangover, I always bite my tough which hurts a lot and every bone in my body hurts but I know alot of people have to go through worse things and I respected them for that.

It took me a long time to get diagnose because the doctors told me it was just hormones and that I would grow out of it and they didn’t want to rush putting me on medication. Also because I was between seeing a children’s specialised and an adult specialised they lost a lot of my information and didn’t realise how many seizers I was having. I really wanted to say thanks to my mum and dad because they were the ones who kept pushing me to go back to the doctors and having to watch me have seizers but not knowing what to do. It was really hard because when I went to one doctor she said I needed to stop coming and get on with my life but I was still having seizers and petit mal’s and didn’t know how to get on with my life.

I finally went on medication when I was 17 and after trying different things have been able to get the seizers under control. I haven’t had a seizer awake for a year and a half but still have them in my sleep about every 3months. Reading what I have today has really shocked me because I always thought it was people who have seizers every week who are at risk. I have never let epilepsy stop me from what I want to do and now im 22 years old and I am on a holiday working visa is New Zealand and plan to go to Australia after my visa runs out. I have found that when I have seizers in my sleep in the hostels people have been really helpful and there haven’t been any problems. Also I was on lamotrigine when in England but they don’t have the same thing over here so put me on some other medication which is the same kind of thing but it seems to be working alot better than the other medication. I still have seizers in my sleep and the doctor that I spoke to doesn’t think they will stop but at least I don’t have them awake anymore so I can get on with my life and see the world.

My heart goes out to anyone who has lost a family or friend from epilepsy and I really respect people writing about it. I guess you have to live life to the full and it looks like everyone who has written about a person has had a great life before and never let epilepsy stop them from doing what they want in life.

Submitted by Rachael on

Heartbroken writing this. My dad died unexpectedly on 6th December 2012 of SUDEP. He was 72. Fitter than anyone I know. Never drank and never smoked. He will have known about this risk yet never said a word to any of us. Thought he would live forever. I think more needs to be done to make people aware of this as I'm sure people may view epileptic sufferers lives a little differently and make each moment count given you literally never know the moment that they may be struck down with this. Rest in Peace dad, missing you more every day xx

Submitted by Therese Cleave on

My Son died in his cell at Exeter prison he was found unresponsive at 7am on the Thursday morning he was on hourly checks as he had a seizure earlier in the day i am not happy with the surrounding circumstances the inquest was inconclusive, they have kept his brain for analysis so have not had results as yet but reading about sudep is making me think this could have happened to him i am devasted and there is an ongoing investigation by the ombudsman because i beleive he should not have been left on his own i am also unsure whether he was given medication because his fits were rare and caused due to withdrawing off drugs and being refused medication...

Submitted by Hazel Bartlett on

My son died of cot death he had been suffering from infantile seizures clonic seizures and neck spasms weeks before I was told by my doctor to record his episodes but a few days later I found him in his cot past away like marianna said he was very blue particularly his mouth and tounge could this be the same ???

Submitted by Carol on

I have had epilepsy for over 2 years but had not suffered a tonic clonic since 1st June 2012. I'd been given various meds to try and final settled with lamotrogen. I started having petit mal seizures which I hadn't had before and like the comment before left me with a terrible headache and often confused. On 16th Feb this year I had a tonic clonic whilst playing tennis and was taken to hospital for precaution. After a CT scan to check for a bleed ( I have cavonous heamaginoma ) and taken back to my bay in A&E. the next thing I remember was waking up in resus. The doctor told me she came in to give me the scan results and I had a vacant look on my face. I then went in to a full tonic clonic and my airways were blocked and I turned blue. I was out for an hour before I came round. If this second seizure was anywhere else I dread to think of what could of happened.
I don't drink for the obvious reasons and use exercise as a stress relief. I'm worried that this may be havening an effect?? Can anyone advise on their experience?
Also my consultant has mentioned the possibility of surgery. Has anyone got any views on this?
My heart goes out to all that have lost family or friends to SUDEP.

Submitted by James on

That sounds like an extremely scary experience. And yes, thank goodness you were already in hospital.

People with epilepsy have different experiences with exercise. Mostly it can be very useful. As you say it can really help reduce stress levels, which is good for all of us. But other people find that doing serious physical exertion can sometimes bring on a seizure.

Different people’s experiences of exercise are discussed on our online community, forum4e. Also there are many people on the forum who have gone through surgery, are in the middle of tests, or are just thinking about it. So you might want to think about joining forum4e. It’s for people with epilepsy and carers of people with epilepsy.

I hope things start to settle down for you soon.

Cherry
Advice and Information Team

Submitted by Cherry@Epilepsy... on

My daughter who is 17 has just been diagnosed with nocturnal epilepsy, she has grand mal seizures, tonic clonic in her sleep. I am terrified I lose her but this is a new diagnosis. Please how can I get a mattress ASAP , an anti suffocation pillow?
I do to know where to turn?

Submitted by Trudy Williamson on

Hi Trudy

It’s a worry, when you’re frightened you might miss a seizure, isn’t it? Sometimes a bed alarm can give some reassurance. It might also help you to know that most seizures stop of their own accord, whether they happen while asleep or awake.

There is an organisation called Disabled Living Foundation who have details of manufacturers who do alarms. There is also an organisation we are aware of that sell safety pillows. They are called Chester Mobility Centre. You could make some enquiries.

Rosanna
Advice and Information Team

Submitted by Rosanna@Epileps... on

My daughter is 11 months old and has had 8 seizures since jan 2013-march 2013, now she had a ECG and a EEG but inconclusive for epilepsy, they first thought if was febrile convultions but now changed their minds as she hasn't been unwell or had a temp with the last three fits, the lastest fit lasted over five mins and had to be stopped using drugs, which really scared me, now after reading all of the comments on here I'm really scared what to think wether she has some different kind of epilepsy, in jan she was admitted five days in hospital and this month three days in hospital, I'm stressing myself out, I've moved the baby bk into my room as I'm scared she might have another through the night, the doctors hasn't given me a name for what happens, just says she has prolonged convultions? What does this mean or does anyone have any ideas what these fits are from? She's otherwise normal healthy baby, no birth problems etc, no family history of fits, this just came out of the blue :(

Submitted by Emma on

Hi Emma,

It can be very scary to see your child having seizures, particularly if they go on for a long time. Emergency medicines are sometimes used if a tonic-clonic seizure goes on for more than five minutes or if someone is going from one tonic-clonic seizure to another in a short space of time.

It’s difficult to say why someone might have epilepsy. Sometimes the reason epilepsy develops is obvious. But for most people (six out of 10) there’s no known cause. For lots of people, doctors can’t find what’s caused their epilepsy. Epilepsy can happen to anyone at any time. Sometimes it just comes out of nowhere.

If you worry about your daughter having a seizure during the night you might consider a seizure alarm. They are not suitable for everyone’s epilepsy but more information is available from the Disabled Living Foundation: Tel: 0845 130 9177

Have you spoken to specialist epilepsy nurse? They can spend time with you discussing your daughter’s epilepsy, her treatment and any problems she might have related to her epilepsy. They may be able to talk to you over the telephone or visit you at home. You may have already seen a specialist epilepsy nurse. If not, your family doctor, epilepsy specialist or Epilepsy Action can tell you if there is one you can get in touch with.

It sounds like this is a worrying and confusing time for you. Perhaps it might help to contact our freephone helpline where you can talk through your worries with an advice and information officer.

You may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. Hopefully, you will be able to talk to others in a similar situation.

If we can be of any more help please feel free to contact us again either by email or the epilepsy helpline freephone number 0808 800 5050

Vicky Morris
Advice & Information Officer

Submitted by Vicky@Epilepsy ... on

Thanks for getting back to me, my daughter was admitted back to hospital last week with another fit, the fit lasted 3:20 secs, I dealt with the fit fine but had to call a ambulance out as her lips starting turning blue, within 8 hrs she had another fit in hospital that lasted over five mins so buccolam was used to stop the fit, this fit followed by a little one with lip smacking, at the time these fits didn't have a temperature or viral infection, I've spoke to the epilepsy peditriction and my epilepsy nurse and have decided to start her on medication called phenobarbital twice daily so I'm hoping this works, I've read some of the side effects like slow development and hyper activity but i don't know much more about it as they haven't really explained about it, but I'd rather deal with being slow and hyper than another fit that scare me so bad, but I will keep you updated on how this drug goes, she's on this now for a year and has another ECG and EEG booked in for out patients in a few months but weather that will show anything I don't kno as the last ones where clear so we'll see what happens x

Submitted by Emma on

Today I got the call that broke my heart. My niece celebrated her 2nd birthday last week and she was running around, smiling and happy. In the early hours of the morning she had a seizure. The second seizure she has ever had in her short life. The first was last year and then today. When I got the call I thought I had imagined it as I just saw her last week and she was fine. I was sure it was a mistake. I even convinced myself on the way to my sisters that it was a mistake and that they just didn't no how to take a pulse. My mum tried CPR and everything to try to bring her granddaughter back and thought she had until the paramedic said it was her pulse in her own hand she could feel. We arrived at the hospital and I tried to be strong but I couldn't. I burst into tears. We saw her and she looked like she was smiling in her sleep. I still thought she was alive and that it was a mistake. She has gone. She has just gone. Disappeared. The worst thing is that my nieces brother (4) doesn't understand what's happened. We tried to explain that she has gone to heaven and she is an angel and everything and he says that he understands but then says when is she coming back. I hate this.

Submitted by Daniel on

my 19 year old daughter Gemma died on the 20th of February this year. She had type 1 diabetes and epilepsy. Her diabetes had first class attention but her epilepsy was always second to the diabetes. a post mortem returned inconclusive results but a coroner's inquest will take place sometime later this year. Her brain has been kept for tests as her heart and other organs were fine and not the cause of death. I feel very angry about the lack of care relating to her epilepsy. I still don't know what type of epilepsy she had even though she had been diagnosed for over ten years. She lived with my parents and I had lost touch with her care.. she was meant to have a video link appointment the day after she died. It all seems too little too late. will the coroners inquest look into what care she had? did she have the right amount of tests? I don't want to seem like the Mum looking for someone to blame, but some people seem to have had mri's, eeg's and epilepsy nurses eavh year. Gemma had none of that, her diabetes specialist looked after her epilepsy care and handled her medication. I just want to fight her corner if I need too? ... I feel alone since she died and I want someone medically trained to tell me what happened. has anyone else been through this? I would have had her illnesses for her if I could have.. it doesn't work like that though does it!

Submitted by Charlotte Philpotts on

I would like to share my story particularly for those parents of children who have started having seizures and who, like me will be going through a living hell, are anxious with nowhere to turn & no answers to their questions.
I would like to share Molly's story...
Molly is my daughter, she is 4 years old, 5 in July. She is an amazing little girl, full of life & mischief & a real live wire.
At 7 months of age, Molly was a happy healthy baby, I had never had cause to worry about her. But at this time I was at work when I had a call from my husband, 'Mollys fitting', at that point my heart was in my throat, fitting?? I couldn't grasp what I was being told, how could she be fitting? & I'm thinking is she going to die? What else could this mean - epilepsy crossed my mind but I ruled it out no sooner had I thought it. No-one in my family has it, I'd never met anyone with epilepsy nor seen an epileptic fit. I was numb, my whole body seemed to shut down, a colleague rushed me to the hospital. As I arrived I was directed through to resus where there was a flurry of activity, drs everywhere, as they parted there laid my baby convulsing. I remember the urgency, the panic & was convinced I'd lost her.
Molly was medicated to stop the fit, she had been in the fit for over an hour. Afterwards? We were told she had suffered a febrile convulsion something I'd never heard of but was told was common.
After a few days in hospital we left & I prayed I would never see her in that state again.
Sadly it was only a short time later that Molly had her next seizure, followed by many others, the most recent being on 23 March 2013.
Up until Molly was 2 yrs having at worse 6 weekly seizures I was still told she was having febrile convulsions. As I researched this I didn't agree, her fits weren't short & she couldn't self resolve she always required intervention. I was in despair, arguing with medical professionals I wanted them to help my baby. Eventually she was put onto sodium valproate, I thought she'd be fine, they would stop but while they lessened in frequency when she had them they were just as severe lasting anything between 25 mins to in excess of an hour. With normal EEG & MRI results I was then told that she has a 'known seizure disorder'. Ironic really that it be labelled in such a way as there was nothing 'known' about it, I didn't understand any of it. Everytime Molly would have to be blue lighted to hospital & would end up in resus, each time I thought it could be her last, that id lost my little girl, with each time I've lost a little piece of me, it's weakened me, it's made life a little less bareable caused me immense pain.
In the last 2 years there have been huge developments, the seizures have slowed right down, last year Molly went 10 mnths without a fit, then up until 23 march she was a year clear. The medication is obviously working but it takes for a parent to be on top of everything in the care of their child, drs won't increase her meds in line with her increasing size as she grows. Despite repeat requests her meds hadn't been increased this past year, I'm sure this in part is to blame for her fall recently. I have battled the NHS tirelessly to get answers & to keep my little girl from ending up permanently damaged or worse. It is only through all of this that eventually agreement was given to fund genetic testing for Molly. This showed she has the SCN1A gene mutation this meaning Molly was diagnosed with Dravet syndrome 6 months ago.
I can remember clearly being told this was the diagnosis, Molly was labelled and I was told she'll never get better will never lead a normal life, will never have children...
I left that meeting broken, my whole world collapsed and I couldn't see my way back. I was giving up I hadn't the physical or mental strength to fight any longer. I had nearly lost my baby twice, twice she had ended in respiratory arrest, once having been overdosed with diazepam by a paramedic, another time having a bad reaction to midazolam given to us as a rescue medication.
My fight has been long & pain stakingly hard, the message I want to give is to parents who are unsure - ask the questions, scream if you have to, don't settle, demand answers & keep at it til you have them - I don't agree that there isnt an answer, there's always an answer. My answer is Dravet syndrome, my beautiful girl has a horrendous illness that could take her from me, it means I live each day in fear of the next fit & the time I spent preceding it being my last with Molly. I watch her fit & I know the effect the sickening feeling, I can't catch my breath. On 23 march Molly went into a seizure, knowing how severe they are, that she can't self resolve as with every other time I panic but do what is necessary, I called 999 & explained the full circumstances, I was told help was on it's way. After 20 minutes & having given her diazepam with no effect a first responder arrived. He was helpless aside oxygen he had no real use, we needed an ambulance she needed to get to hospital. He chased the ambulance with his control room, Molly was still fitting her breathing so shallow I couldn't tell of or when she was breathing, her lips blue as I hear the transmission back 'we have no-one to send', 10 minutes later & still fitting, another transmission, an ambulance has been found but they're half hours journey away & it's snowing hard outside. I couldn't believe what I was hearing petrified all I could do was hold her hand & tell her everything would be ok, I didn't believe these words...
After 1 hour 10 minutes we arrived in resus & the relief I felt immense.
Asides the seizures Molly also has delayed global development, poor sleep patterns & poor confidence in walking & running she also has hypermobility.
For all that's against her, all she's been through I feel so blessed as she is a truly wonderful little girl, loving & affectionate with a wicked sense of humour.
Molly is a blessing, if I could I would take dravet syndrome from her in a heartbeat, I would not want anything more than to make it better as she is my world. I have to be thankful for her as she is, & make the most of all that she is as the future is so uncertain.
I share our past four years condensed to this to raise awareness & tell our story, I am so very thankful to all those who have chosen to share their stories a without this alot of questions would have gone & would still go unanswered. Epilepsy with all it's meanings has such a huge impact on those that suffer it & all those who love & care for that person. My heart goes out to everyone who have shared their story, are reading these comments because epilepsy is effecting them & they're searching for answers. X

Submitted by Lisa Holliman on

I had my first tonic-clonic seizure, out of the blue in 2007 when I was 59. The seizures are now becoming under control. The last occurence was in Oct 2011 when I was in status epilepticus. The ambulance crew were considering administering rectal diazepam, but that was eventually administered in A&E. I would suggest that those with epilepsy (or look after them) discuss whether those near should have training in administering rectal or buccal (between the gums and cheek) diazepam. This may help once a person has gone into status epilepticus, and reduce the numbers succumbing to SUDEP.

Submitted by Simon Hooker on

My name is Sarah and I was an epilepsy sufferer who suffered at a young age , now I am 31 years old I have been told I have grown out of my epilepsy. my sister got epilepsy at 16 years old and last August she sadly passed away she was 20 years old. My sister had been fit free for 2 years and possibly could have been prevented if she had taken her tablets. I want to make people aware of the risks that could happen if tablets are not taken, I was one of those teenagers who did not take her tablets and I was lucky. My sister s not so lucky and all she wanted was to work with children and having epilepsy prevented that. I really want this message to be heard as I have listened to other people and read webchats and not all epilepsy sufferers take there tablets, I want people to read this and I want to try and help those people.

Submitted by Sarah on

My boyfriend died in his sleep recently (05/07/2013) he was only 25 and me and him planned out our future together like getting married and staring a family together. I knew he had epilepsy as he told me when he first asked me out and said he had it since he was 5 years old I accepted it and I dealt with so many of his seizures when he had one it was natural for me. He took quite a lot of medication to control his fits in the morning and at night. the only time he would have them even though they were unpredictable was when he was over excited unwell not got enough sleep and stressed out some of the fits he had he would deny them unless he had a headache a funny taste or injured himself. I'm guessing his death was to do with his epilepsy by how His mum found him that morning. She went in to wake him up to have him take his medication and get ready to meet me as we was going out for a meal when she found him lying on his front with his face in the pillow not breathing or conscious she rolled him over to do CPR but it didn't work so she new he was dead another sign he'd had a fit In his sleep was he had wet himself which he only did occasionally. She reckons he had a fit rolled on to his front and suffocated himself . Most the time when he did have a fit after convulsing he would walk off in search of a toilet and if he did have them in his sleep he would fall out of bed. He took his tablets every morning and night never forgot to take them even when he rang me in the morning I would remind him to take them once he got off the phone. He only got sent To hospital 3 times from his fits and 2 out of them 3 times i was with him. The first time he got sent to hospital was like any other day we had met spent time together he had gone home that evening he had a fit his mum tried bringing him out of it but nothing happened and he became unconscious and still fitted even after the emergency medication was given to him. The 2nd time he was in Leicester with me and his best friend we was in the shopping centre and he went into a fit he was starting to come round but went back in to another and the staff rang for a ambulance once he was in there his mate told me he would meet me over there and once we got to the hospital they had to strap him down to the bed as he kept walking off they took him in to recovery I was in tears as I wanted to stay with him then a few moments later the paramedic came out said he was fine I went in ran to him and hugged and kissed him his parents came to the hospital and fetched him. The 3rd time was just after Christmas 2012 me him and his mate were in Leicester when he went to try on some shoes I went to make a phone call and his mate follows me when one of us should have stayed with him we went back into the shop he was going into a fit but came out of it we took him outside to get fresh air as it was very warm inside he was walking but not talking we walked round for ages tried getting him to the bus station to go home he wouldn't move he then walked in to HMV and went to the games I thought he was going to be okay when I looked over I noticed he was going into another fit and was about to fall to the floor I ran to get to him but people just stood in the way so I pushed past I knelt next to him as he lay on the floor lifted his head up onto my lap to help him cushion his head he was just lying their not moving I was scared he was seriously injured people was just staring at us when a by stander asked if I needed help I explained everything to him he said to ring for a ambulance I did when my boyfriend started convulsing again then he stopped and then the paramedics arrived my boyfriend started to stand up we took him into a room they asked him questions on the way to the hospital he just stared at me I said are you okay ? He said yes then once we got to the hospital his family was there he unbuckled himself n walked out to them they went into the hospital with him he hugged and kissed me bye me and his friend went to get the bus home but he told me that he had wet himself later that night why he was in the ambulance or in his fit.
The last fit I remember him having was on my birthday at Alton towers he had one on the flume which we had to stop the ride we had him taken to the medical centre on site where he was checked over he was fine after that for rest of the afternoon then why we was in the shop I was looking at something when my friend shouted me I ran over and my boyfriend was in another fit I grabbed him to stop him falling after 5 minutes he walked out the shop we sat down for a few minutes then carried on exploring the park he went to get a ice cream ate it then we went on the river rapids for the rest of the day after that him and our friend got changed went loo and we went to get picked up after that he was fine we got back to mine had cake dropped them home .
The following few days enforce he died he was fine no epilepsy problems was his normal happy self which he was the last time I saw him besides his epilepsy he was a healthy happy person who I loved and treasured I would do anything to feel him hug me kiss me and say I love you again

Submitted by Sarah on

My husband has been diagnosed with epilepsy last month. I saw his first seizure an year back but no one believed me. Doctor said it might be because of weakness. Last month, he had a complex tonic clinic again this time more severe. His face turned blue and he was vomiting during the seizure. I feel extremely sad. He doesn't show any signs of worry. However, his sleep has been fragmented since the medication started a month back. I love him a lot. It is so painful truth. I am constantly worried and fear losing him. I feel anger for the doctor who didn't believe me the first time. But more than anything I want him to cure which I believe is not an option. The uncertainty of the situation makes me feel so terrified. My husband is only 29. His reports of eeg and MRI are normal. Will I ever be tension free again?

Submitted by radha on

Hi

It can be a worry when epilepsy is diagnosed. This is also true when a loved one has to watch a seizure happening. It doesn’t mean that because your husband is having seizures that you will lose him. Many people with epilepsy live full and active lives. On this page you can see ways to reduce the risk of SUDEP. So, it’s important that he is guided by his doctor and takes his epilepsy medicines as prescribed.

We have some information on first aid for seizures. Knowing what to do and how to help him might stop you worrying as much. We have some information on [first aid] on our website. http://www.epilepsy.org.uk/info/firstaid This has written information as well as showing someone having a seizure and how they can be helped.

You mentioned that your husband is now taking medication. If it’s [epilepsy medicine] once he’s on the right one and daily dose, there will be less risk of seizures happening. Although it can take a while to find the right medicine and daily dose, once this happens many people with epilepsy are able to get complete control of their seizures. http://www.epilepsy.org.uk/info/treatment/anti-epileptic-drug-treatment

We have lots of easy to find information about epilepsy on our website. From our homepage, you can go to the advice and information section (on the blue strip), you’ll find more boxes to directed you to information on specific aspects of epilepsy. You could also try searching through the search box, at the top of each of our web pages, by using trigger words such as treatment or first aid, and so on.

Some people find it helpful to be in contact with other people in a similar position. You can do this through [forum4e], you’ll have to join forum4e to do this, but it’s free to join. https://www.forum4e.com/

I do hope this is helpful.

Rosanna

Advice and Information Team

Submitted by Rosanna on

My heart goes out to you all its a terrible illness,I returned home on 15th August 2009 to find my sister (32) dead in the armchair,I miss you everyday sassy and only wish it was me and not you xx

Submitted by Hannah on

my wife was diagnosed with one nocturnal epileptic episode after a seizure.she was discharged straight away without any sort of medication.we wasn't told much at all other than it was not likely to happen again .well it has and my wife lost her life ,why wasn't we told about the real dangers of the seizure she had

Submitted by Brian Lomas on

Dear Brian

I am so very sorry to hear about what happened for your wife. That must have been such a terrible shock for you.

I hope you have found out about the organisation that supports people in your position. It used to be called Epilepsy Bereaved and is now called SUDEP Action. You might find it really useful to talk to them, if you haven’t already done so.

Different doctors have different approaches. But we have received enough feedback from people like yourselves, to make it clear that people should be told about the dangers of SUDEP right at the point of the diagnosis.

Epilepsy is defined as more than one seizure, so maybe the doctor would have mentioned SUDEP if your wife had been diagnosed with epilepsy. But I totally understand that is no help to you right now.

As well as SUDEP Action, you are also more than welcome to ring our epilepsy Helpline on 0808 800 5050.

I do hope things start to feel a little bit easier for you over time.

Cherry

Advice and Information Officer

Submitted by Cherry on

I lost my son of 18 years in May to epilepsy as far as I know he had only ever had two seizures and the last one being two year ago at the time he had the brain scan and other scans to find out if he had epilepsy but the results came back negative. He was so pleased that he didnt have epilepsy but in the end it killed him and a life with epilepsy would have been better than no life at all. What a waste of a fantastic life of a boy who had everything to live for and is missed so badly by all who new and loved him

Submitted by Julie on

Dear Julie

I’m so sorry to hear of your son’s death. I can’t imagine the pain and anguish you must have gone through at the time and are still experiencing. I appreciate it must be difficult to accept when your son only ever had the two seizures. There is no way of predicting who will have future seizures or be affected by sudden unexpected death in epilepsy (SUDEP).

I hope you have found out about the organisation SUDEP Action that supports people who have lost a loved one to epilepsy. You might find it really useful to talk to them, if you haven’t already done so.

As well as SUDEP Action, you are also more than welcome to ring our epilepsy Helpline on 0808 800 5050.

I do hope things start to feel a little bit easier for you over time.

Regards

Diane

Submitted by Diane on

My 27-year-old daughter passed away 12 days after her birthday on September 24th, 2013 and it was a great shock. I had never heard about SUDEP and I don't think she had ever been warned about it by her doctors. She unfortunately frequently forgot her medication and had quite a few seizures that I'm sure she did not report to her doctor. However, she was honest about drinking alcohol and her seizures were nocturnal only. I, too, have questions about how often particular tests should have been done, etc. She lived for about 1-1/2 years in Argentina, then took a job on the opposite coast and I could never really know what was going on with her unless I asked and I didn't think she was always necessarily honest about her seizures. I just don't think she believed for one minute she could die but she did and I feel very strongly that had a physician made this risk very clear to her, she would have been more diligent about taking her medication.

Submitted by Amy on

Dear Amy

I’m so very sorry to hear of your loss. We have heard from other parents who have lost a child due to SUDEP. Like your self, many parents tell us they wished they had known more about the risks.

Epilepsy Action, aim to raise awareness of the risk of sudden death associated with epilepsy. If you are in the UK and you would like to discuss SUDEP further, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). Or, there is an organisation in the UK called SUDEP Action you might want to talk to.  You could also contact your family doctor, epilepsy specialist, or epilepsy nurse. As you say your daughter lived in Argentina, if you are living there, you may wish talk to the ASOCIACIÓN DE LUCHA CONTRA LA EPILEPSIA. Their contact details are:
Tucumán 3261 1189
Buenos Aires
Argentina
T/F: +54 114 8620 440
asoalce@aol.com
Contact: Mr Gonzalez Gartland

Regards

Diane Wallace

Advice and Information Services Officer

Epilepsy Action

Submitted by Diane on

Hello,
Two weeks ago my 41 year old brother wasn't answering his phone, when we finally git the police to break in to his flat he was laying in bed as peaceful as if he was sleeping with a little blood where he had presumably bitten his tongue.
Steven suffered all his life with this debiliating desease, having never fully got it under control and I feel so angry that it took his life in the end.
I never knew this was a risk and wish I had been aware before hand. Maybe I could have nagged him into getting a special pillow, but I will never know now.

Submitted by Sarah chantler on

Hello Sarah. I’m very sorry to learn of the death of your brother. Please accept our condolences.

Many families of people who died from SUDEP wish that they had known about it earlier and we agree that there should be more awareness of it.

If you have not already done so, you may find it helpful to contact SUDEP Action. They will be able to offer you support, following your brother’s death.

If we can help you by providing any more information about epilepsy or SUDEP, please do not hesitate to get in touch with us again.

Kind regards

Amanda
Advice and Information Team

Submitted by amanda on

Hi,
after 6 months of waiting for test results, my daughter has been diagnosed with dravet syndrome. my partner and I are absolutely devestated.
I am struggling to find out if there is milder forms of this syndrome or if uts a general syndrome where every child who has it has severe learning difficulties etc. can anyone help please

Submitted by clare s on

Hi

It’s not surprising that you’re feeling devastated when your daughter has got such a serious diagnosis.

I am guessing you will have seen our information on Dravet syndrome. We are not medically trained, and syndromes are a particularly specialist area. And it can be really difficult to diagnose a syndrome correctly at first.

But you may want to be in touch with Contact a Family.  I have linked you to the place on their site where you can go to an online forum and talk with other people who also have a child with Dravet syndrome.

I really hope this help you a bit. And that you begin to feel less overwhelmed by the news soon.

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

Yours sincerely

Cherry

Advice and information Team

Submitted by Cherry on

thank you for the link I will be using it.
I feel helpless. she is only 16 months old. im now to scared to sleep in case she has a seizure throughout the night that we miss.
currently trying to find out if we could possibly get a grant for an epilepsy alarm so we are able to relax a tad more during the night.

Submitted by clare s on

My son 21 years old died a week and half ago on 03/21/2014 as a result of SUDEP, he died in his sleep very peacefully not even a hair was out of place. It was probably instantaneous, he was to graduate in 2 months from University of MD. One day before his Mcad exam to be a doctor to be a neurologist to work towards a cure for his epilepsy. He had been almost seizure free for a year and last year the doctor was considering taking him off the medicine, he did not but then the inevitable happened without any sign.

I don't know how to cope up with the loss.

Submitted by Hardeep on

Dear Hardeep

I am so sorry to hear of the recent loss of your son. This must have been a terrible shock for you and your family, particularly since he had been seizure free for so long. Please accept our sincere condolences.

Losing a child is very difficult, particularly one so young, with such a promising career to look forward to. You might want to contact our colleagues at SUDEP Action, for support. They raise awareness of SUDEP, and are involved in research to try to find out why people die in this way. I’m sure they will do their best to answer the many questions you have.  

If you think we can assist you any further, please send an email to helpline@epilepsy.org.uk, and we will do our best to help you.

Kathy
Advice and Information Team

Submitted by Kathy on

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