Sudden unexpected death in epilepsy (SUDEP)
Introduction
We made the decision to write this information because we have been told, by the relatives and friends of people who died from SUDEP, that no one had ever told them that this could happen. By making this information available, we hope to raise people’s awareness of SUDEP, so that fewer people will be affected in the future.
If you have any further questions after reading this, you could make an appointment with your doctor or epilepsy nurse to talk your concerns through. You are also welcome to speak with our trained advisers on the Epilepsy Helpline or to send an email to the helpline to discuss any concerns you have.
What is sudden unexpected death in epilepsy (SUDEP)?
If a person with epilepsy dies suddenly and no obvious cause can be found after a post mortem examination has been carried out, it is called SUDEP.
How common is SUDEP?
It is difficult to know exactly how many people with epilepsy die each year, but it is estimated that about 500 people a year die of SUDEP in the UK.
What causes SUDEP?
The true answer is, we don’t know. Some studies have suggested that the part of the brain that controls breathing may be affected. This could cause the person to stop breathing during a tonic-clonic seizure. For most people, the breathing would start again once the seizure ends. Unfortunately, this has not happened to the people who have died from SUDEP.
We don’t know yet whether these things happen because the person with epilepsy already has a weakness to their heart or lungs, or whether it is related to the epilepsy itself.
Who is at risk of SUDEP?
There is some suggestion that some people may be more at risk then others. These may be people who:
- have poor control of their seizures
- have generalised seizures during their sleep
- have a learning disability
- are young adult males
- are not taking their prescribed antiepileptic medication
- are having frequent or sudden changes to their antiepileptic medication.
Reducing the risk of SUDEP
The following suggestions may help you to reduce the risk of SUDEP.
- If your seizures are not well controlled, you could ask to be referred to an epilepsy specialist (secondary care – usually local) for your epilepsy and medication to be re-assessed. This would also give you the chance to discuss with your specialist whether any other treatment options would help to control your seizures.
- Ask for a referral to a specialist epilepsy clinic (tertiary care – may be out of your area). Some specialist epilepsy centres take part in trials of new drugs.
- Make sure that you never run out of your prescription medication.
- Never make changes to or stop your medication without talking to your doctor first.
If you are close to a person with epilepsy, you may be able to reduce their risk of SUDEP by knowing that:
- many of the people who have died from SUDEP have been alone, although not everyone was. So, it would be good to stay with the person who is having a seizure for at least 15 or 20 minutes after the seizure has ended.
- Stimulating a person, for example moving their body or limbs can encourage breathing to restart. If you are caring for a person who has had a tonic-clonic seizure, put them on their side, in the recovery position, when the seizure is over.
If you need support following the death of someone from SUDEP, you could contact one of the following organisations:
- Epilepsy Bereaved
PO Box 112, Wantage, Oxon OX12 8XT
Tel: 01235 772 852 (A message can be left on the answer machine and a befriender will call back, or write.)
information@epilepsybereaved.org.uk
This is a charity set up by people who have been affected by SUDEP to offer support and information for other people affected by SUDEP. Epilepsy Bereaved takes part in research into the causes of SUDEP.
- Compassionate Friends
53 North Street, Bristol BS3 1EN
Tel: 0845 123 2304
info@tcf.org.uk
This is self-help and befriending organisation of parents whose child, of any age, has died from any cause.
- Cruse - Bereavement Care
Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR
Helpline: 0870 167 1677
Young person’s Helpline: 0808 808 1677
helpline@crusebereavementcare.org.uk
This is a counselling service run by trained people who help people with the emotional and practical problems of losing a relative or friend. They have a network of local branches.
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
Comments
my comment is i think it is disgraceful that parents are not told that sudep can happen my daughter alisha died november 07 from sudep and it was the worst thing i have ever had to deal with it has changed my life completley she was 4 years of age we were never told that this could happen i have yet to speak to the consultant and when i do he will get a peace of my mind this problem should be definatley made more aware
My son died from sudep on June 21st 08 age 24. I can,t accept what has happened, it,s breaking my heart. When he was diagnosed at the age of 15 we were never told this might happen. I worried it might happen accidently i.e. falling down stairs or choking, but never so suddenly as this. I keep blaming myself for not checking on him that morning when i heard a slight bang, but as there was no further "knocking" i assumed it was my other children getting up..The feeling o guilt knowing he was upstairs alone when he passed is unbearable.My doctor says there was nothing i could have done,but the shock of finding him will stay with me always. Why was it not made clear this could happen? Why is it not publically made aware of the severity of this awful life threatening condition?
FAO Margaret Harrison
Margaret, my name Gill Davies and my son Jamie died on the 20th June aged 22, he too had developed epilepsy at aged 15.
He died very suddenly at the school in which he was training to be a sports teacher.
I have no words of comfort because I know there are no words, but I too feel your heartbreak and wanted to let you know that we share this awful pain.
I also agree with you that more information and support should be offered these children with epilepsy to make them fully and us as parents more fully aware of these most dreadful concequences.
Take care Margeret.
With fondest thoughts, Gill
My son Jacob was diagnosed at 13. He had very few seizures, always at night when asleep. He was told at Neurology that he was at the lowest end of the spectrum and to live his life to the full. We found him dead on his bedroom floor on 17th April 2005. Why were we not told that this condition could kill?
Jacob's death has broken our hearts and our marriage. His dad has gone to pieces.
Id just like to say to the other writers that I feel for you. It does get a little easier as the shock passes. But what an unnecessary waste of these young lives. This death could have been prevented with more openness from the medical profession.
Our family has raised over £10,000 for Epilepsy Action in three years. Please God it will help someone else's son or daughter.
Carole
F.A.O. Gill Davies. Hello,thank you very much for your comment, and my deepest sympathy for the loss of your son Jamie. I am still in shock and now the funeral is over, my thoughts still want to know why this happened and why i had no knowledge of Sudep. My son Ron was also a keen sportsman and a brilliant footballer. It would be nice to hear from you sometime.My thoughts are with you all. Warm regards, Margot Harrison.
To all parents that have lost children to epilepsy my prayers and deepest sympathy goes to all. I stumbled upon this sight trying to find something to help my son out, he too has epilepsy and he is only 6. I had never heard of SUDEP until now. I dont sleep at night just checking on him and i thought it was just me over thinking the situation. You have opened my eyes to the seriousness of this matter. Thank you all and may God Bless you.
To all of you, God bless you all. My husbands oldest son, Michael, who was 23 died May 10, 2008 of now what I know as SUDEP.(He was diagnosed with epilepsy at age 16.) But, I didn't know until I read this. He was at home watching tv and his mom called about 11:30pm to check in on him. Everything was fine. She and her husband returned home at 1:00am and found him unresponsive on the living room floor. She started cpr right away and the ambulance got there very quickly but, we didn't get him back. I agree that this needs to be broadcast to everyone...WHY? don't they. I am a nurse and I have never heard of it until tonight. Even the people with the Epilepsy foundation hadn't mentioned it. Things need to change and education on this subject needs to be added to all neuro appointments, schools and to anyone who knows someone with this disease. Thank you for this web site.
Oh my dear Margot...My son Daniel (age 21) passed away from an epileptic seizure on June 21, 2006! He was alone in the shower while getting ready to go to work.
I can tell you that it has been the worse 2 years of my life and my heart goes out to you.
God has helped me through and just tonight, I finally had the strength to scatter Danny's ashes in a beautiful spot that I have loved.
Please let me know how you are doing....I care and it is so coincidental that our sons died 2 years a part to the day.
God Bless You...
Cindy
My dad died in January of 07 5 days after his birthday. He was 52. He had been having seizures for the past 8 years brought on by a brain injury. No one told us that there was a possibility he could die. And after he did pass all the doctors kept saying that this wasn't supposed to happen. Well it did happen and I think that doctors should inform there patients and their families that there is a possibility of death. It has taken me a while to actually write about this. I just think doctors don't tell patients because they don't want to scare them. But I would have liked to have known more about it. I looked up SUDEP long before my dad died. I read into it but i thought it would never happen to him. Doctors take their time to inform patients and their families about meds, and tips for helping someone whose having a seizure but they dont tell you your loved one could possibly die. I guess it's something we are supposed to know, that fear in the back of your mind.. what if. I don't know what else to really write. I don't even know if this makes sense.
My 17 year old daughter Hazel passed away from SUDEP 05/11/07, Found out too late she was at risk from this, due to her seizures becoming more frequent & severe. All the other families & their loved ones are in our thoughts & prayers.
My heart goes out to eveyone who has lost someone due to SUDEP i was only diagnosed with epilepsy a year ago and have never heard of this before. I live at home on my own with my 5 year old and am always worrying what would happen if something happens to me when we are at home alone together. I had been told not to worry as no-one i know or even myself had ever heard of anything like this. I am glad the infomation is now out there so i have been able to inform family and friends, more public knowledge is needed!
I lost my oldest son on Thanksgiving 2006 to SUDEP. He was 32 years old and a single father of a baby that turned 2 years old the day after we buried his daddy. I also did not know about this. We were always told, "You cant die from a seizure, only from the conditions surrounding it" He died while getting in the shower. We thought he died from hitting his head in the shower. Not so when we received the autopsy. That is when I started researching it. I thank the lord his baby was not with him when it happened. He was spending the night at a friends. Had the baby been there, chances are, no one would have found him until Monday morning when he didnt show up to my mothers with the baby. Remember this was on a Thursday. I live out of state so I would not have checked on him. His best friend came and found him because he had not shown up to get the baby, and he never was without his son for very long. Needless to say, Im angry that the doctors dont know about this. My own doctor had never heard of it. I gave her information. Im angry because there is a little boy that will never grow up with the love of his daddy... I now tell people when I find out that they have a loved one that has epilepsy about SUDEP. I will go to my grave informing people. My heart goes out to all of you that have lost someone. The Coroner did tell me he never felt a thing. I only hope that is true. He was alone for hours before he was found. I would have to think of him lying there suffering.
My deepest sympathy goes out all those people who have lost their loved ones through SUDEP. My brother aged 34 years died on the 4th February 2008 of SUDEP leaving behind his wife who was just 7weeks pregnant. My brother was a fit and healthy young man who had never been diagnosed with epilepsy he had one seizure and died. I miss him very much I cannot believe he’s not with us today.
I understand and sympathise with each and every person who has commented. I lost my wonderful husband of 24 years on 25th June 2008 to this terrible condition. My darling husband was only 48 years old and had suffered epilepsy which the doctors were at a loss to treat or medicate properly - in truth, they were not helpful at all and his medication did not ever work properly for him. I also found afterwards they were bewildered by what had happened and had no answers for me. The only possible consolation I can find in this is that he did not suffer and went very quickly. I was with him when he died and could not resuscitate him, despite my efforts. It has been 2 months now and I miss him every second of every day and I always will.
My daughter was diagnosed with Epilepsy at 28 - she is now 30 and lives with her Dad & I. For over 2 years we have been adjusting drugs. She has not had a seizure since April 08 but does have tingling every week or so. This week her Dr. told us about SUDEP. I had read about this on a site sometime ago but dismissed it as rare. Now I am very concerned. What am I supposed to do with this infomation? How do I encourage my daughter not to worry? We live with the hope that she will be one of the ones that eventually stops having seizures and leads a normal life. Now this. I worry more now because she is alone alot of the time. Her dad & I work & support her. I wonder what percentage of people with epilepsy this strikes.
My prayers and heart go out to all of you. My nine year old daughter was just diagnosed today with epilepsy and has Tonic-Clonic seizers. She has had several seizers over the last 18 months and though all of them are difficult to deal with this last one was life threatening.
We were at the hospital visiting my mother when the seizure came on however this time she stopped breathing and was unresponsive to the CPR. Her face, hands and arms were all blue as her body lay lifeless. "Code Blue" was called and they paddled to revive her. A minute and a half passed before she was responsive and began breathing. Had I not been at the hospital I do not know what I would have done, 911 would have not made it in time and I would have lost her. I took her to the Neurologist as they now want to put her on a medication with a list of side effects but had no answer to why she stopped breathing for such a long period of time. Worried and the fearful of ever losing her I thought to seek out other like situations. My Dr. never has mentioned SUDEP- I have not found any seizure experiences that have lead to a lack of breathing for so long that it could take your life until your site. I am not sure what to do...Any advise would be helpful. Thank you so much for having the courage to share your thoughts and feelings. God Bless!
Thank you,
Steffani
I was just browsing through this website and didn't expect to find something so distressing. My fiance suffers from night seizures and they are infrequent. I have never heard of SUDEP until now and I am so upset. I watch over him occasionally as he sleeps if he feels like a seizure is coming on but I had no idea about SUDEP. Thank you so much for the information and condolences to all who have lost a loved one.
I just found out for the first time yesterday that this can occur!!!
My son contracted Meningo Encephilitis from a mosquito in 1998 (El Ninos) at age 6 and a half. He has since experienced over 1000 seizures in the past 10 years, and never once had I been told that this is a possibility. I have been told that he could experience a seizure that could put him into a coma as he has been in one before. But never told about SUDEP- the possibility of sudden death.
He is now 17 and I hope this information can save his life. My heart goes out to those who did not know as I am shocked at this information without the passing of my loved one.
I read about all of your tragic losses. I am so sad for every one of you who lost loved ones and I want to encourage all of you who has someone in your family with epilepsy. My fiance has many seizures each night, at the moment he is hurting himself a lot. He is very brave and I always try to be strong and comforting for him. But as you all know, we worry a lot. After reading all this I got so scared, before this I was mostly worrying about him cutting himself on something, which unfortunately already happens.
Then again I have to remind myself about that I dont want to make him panic, and make him worry about sleep more then now, since worrying is triggering his seizures, so I will take this information to my heart, try to learn more about rescue breathing and pray that he will be fine.
lots of love and Condolescence for your losses.
I also want to thank the National Sociaty of Epilepsy, for taking wonderful care of him this week and trying to find help and cure for their patients.
blessed be
charlotte , sweden
I felt so saddened reading these stories about young, healthy people dying from this - in fact it's such a tragedy irrespective of age. When my daughter was diagnosed at the age of 8 with benign epilepsy I was so upset as I'd heard people could die in their sleep. From what you're saying it seems that the people involved don't know and aren't aware of what's happening to them. Please accept my condolences and be assured there are people who care.
My heart goes out to all of you that have lost a loved one due to SUDEP. My son Nicholas, age 18, died August 25th 2008 from SUDEP. He was diagnosed at 14, he had very few seizures until 16. He was seizure free with meds for 2 years. Three weeks before his death, he just had his driving licence and his car,he was so happy!! My son was a fit and healthy young man who loved to play football, his passion. He always lived to the fullest. One night, I found him dead on the bathroom floor. I don't understand why were we not told that this condition could kill? I also agree with all of you that more information and support should be offered these children and parents to make them fully awared of the dreadful consequences. We miss him very much, every day, every second. He will always be in our hearths, Nicholas, our Angel. Mom.
My boyrfriend Jacob died on the 29th July 2008 from a seizure while he was on his own. I found him a few hours later. I really understand the shock and saddness in this post. And strangely i feel this is the one place i know people understand the situation and understand the grief associated with a loved one passing over during a seizure.Jacob was only 33yrs. Apart from the grief of losing a loved one, i now know that Jacob is at peace.
My prayers to everyone here.
i just found out my 21 yr old daughter has epilepsy . the first one she had was 2 yrs ago and the hospital said she just fainted and they didn't tell us she has epilepsy . when she has her first baby. the day after the baby was born she has a seizure and stopped breathing on me they just sent her home. i took her too a dr. down below and they put her on med's right away. she had 3 so far. she lives with us with her little boy . when she is tired i watch the baby. when i get off work. i worry about her all the time because i've never had to deal with this.
My prayers are with all these families who are going through such a tragic loss. Our son Ben died in August of 2007 at the age of 7. His seizures were almost completely controlled by medication. As so many have stated, we had never heard of SUDEP. One thing I have noticed is that there seems to be many more support networks in the UK than here in the US. Why is that?
My deepest sympathies to you all for your losses. I have been finally diagnosed with Temporal Lobe Epilepsy after 10 months of frequent hospital submissions due to clusters of seizures. The Doctors originally said I had non epileptic attack disorder brought on by stress and that it was nothing to worry about. I turned 29 2 weeks ago and now realise that I'm lucky to have survived to see that birthday. My seizures often reach double figures and I get so exhausted that I can sleep for hours on end. I started medication of Keppra this week after 10 months without medication. I was told about SUDEP by my new neurologist on Monday when he gave me my diagnosis, and I am terrified that due to the high number of seizures I have, I may not be able to have children (I already had a miscarraige just after the seizures began), or worse, I may have a child and then never be there to see them grow up - even worse than that... what if they grow up to be just like me? It appears my epilepsy is a combination of head trauma from my ex partner's violence, and a low threshold passed down through my family, as since my seizures started I began to find out about cousins on both sides of my family having epilepsy beginning in their teens or twenties. I telephoned everyone in my family on Monday after hearing about SUDEP and not one of them had been given this information.
Thankyou for showing the courage to share your stories here, it takes so much to bare your soul when the pain is so raw. My heart is with you and your families xxx
Hi, I would like to comment on your comment.....my older brother just passed away from epilepsy. He was 39, On his behalf I do have to say...anybody with this condition knows....please let them live there life to the fullest their way. Even though we think we can save them they have to live their lives.....and thats what my brother taught me.
Thank you
Always missing Alan
Laura
I thank each and every one of you for sharing your stories. I am 34 and have recently been diagnosed with epilepsy. No one told be about SUDEP but I think it is better to hear your stories than be sent home with another worry. Remember that GOD has always given each and every one of you a future. The lives lost are not in vain because you have decided to take matters into your own hands and inform the uninformed. All of the seizures that I have are at night or in my sleep so this information makes me aware of the need to find suitable care for my son just in case. He worries over me day and night and he's just 12. I hate the thought of him caring for me but have put this in GOD's hands. Please trust HIM to comfort you and guide you as you battle the ineptness of our Medical doctors. I am inspired to make up my mind to live my life, instead of wallowing in the unknown. THANKS for your openness and willingness to share your stories. Be encouraged and know this too shall pass. Bless you all!
i am a epileptic and was never told about sudep the only way i found out about this condition was reading the take a break i am sorry for everyone who has lost someone due to sudep and i think the doctors should tell people about this condition i will be having a few words with my doctor at my next appointment so that if anyone else ever goes there with epilepsy that hopefully he will pass the information on to them i have found this site very helpfull for me and my partner thankyou to who ever made the site and to everyone who has helped make this more aware jamie
" I miss my sister!" My sister Lynn (28) passed away peacefully in her sleep Mon 13th Oct 08 after having a siezure in her sleep.P.M revealed death caused from epilepsy. We never thought this could or would happen to her, she was never on the same medication and feel that controls and more awareness could have been given. I miss my sister dearly and she leaves her 6 year old daughter and family heartbroken. R.I.P XX
my daughter as ad epiepsy since she was born but we didnt find out til she was 2 and that was only becoz she fell and banged her head and they did test on her even thore shes ad every test goin they always cum bk ok shes on lamortrigine and tapiramate shes nealy 11 we wanted test on our other 2 children but they said they cnt do test till there 2 y?our only son passed away age 16mths he ad 1 epileptic fit and was dead we at 2 wait 3 mths 2 find out y he died and it was 1 epileptic fit but if they would of done test he would of been ere with us 2day and on medication like hes sister we dnt think theres enough things being done to stop other kids from dieing r getting treatment i think if u av 1 child that as epilepsy and u av another child they should automaticaly do test on them there shud be more research and help funding before more parents family av 2 go through what weve gone through
my darling grandaughter who was 3, passed away on jan 11th this year,and the inquest this week gave the cause as SUDEP,betheny had epilepsy diagnosed at 3 months old.she had lots of other problems also.It was a shock 5.30 she was fine 8.30 she was gone,all alone.It has broken everyones heart.no one had told her mum about sudep,WHY NOT.She had breathing monitors on her until she was 12 months,as they said she was at risk from sudden infant syndrome,they said this stage had ended and told us she would be fine in her sleep,if only they had told us the monitors would have been kept on and she may well had still be alive.Its about time people were better infomed ,then maybe some of these deaths might not have happened and more maybe could be avoided.I feel for every one who has lost a loved one so suddenly.
oh my, this is so sad to read and very scary to imagine happening to our loved ones. my eldest has been epileptic all her life after a very difficult pregnancy. shes 10 now but is ok. she hasn't had a seizure for 2 1/2 years but the last fit came after a bout of many very close together. it was the worst one yet and even the paramedics didn't think they were bringing her back. she always stops breathing for a long time and is always the thing that we struggle with the most when she seizes, the breathing. like many of you this is the first I've ever heard of SUDEP although i'm not surprised after our experiences. I'm a very lucky person to still have my little girl and my thoughts and prayers are with you all. x
Thank you all for your very brave comments. This is the first time I've heard of SUDEP. In fact, this is the first time I've left a comment on an internet blog. I am 22 yrs old and have had epilepsy since I was 14. I cannot help but notice the strong similarity of my situation with that of so many of the people you have lost.
I wonder whether anyone could tell me if this occurred with people whose seizures caused them to stop breathing or who displayed any other particular symptoms.
I believe that solutions are available: a healthier, more spirtual life is essential. I thank you all for your posts and send out best wishes of peace and light.
Hi, I lost my brother as a result of sudep in 2006. I keep asking myself why and also cannot understand why clinicians do not tell people of the risks, every seizure is potentially life threatening as is an Asthma Attack.
Epilepsy Bereaved has been my life line. Being able to meet other people and talk to them, they truly understand.
EB also research into SUDEP and until we know why we can’t do anything to stop them happening. Check out www.sudep.org, check out the web site there is lots of information...
My heart goes out to all who are on this nightmare journey they never wanted to make.
I just wanted to say that i have been struggling with my daughters epilepsy since she was a year old, she is now 13. Her seizures have never been under control and there are alot of things that the neurologists have never told me. I just recently found out about sudep and am now researching this,(pretty scary to say the least) I also brought it to our fnp who sees my daughter and he has never heard of it. (even more scary) Im just so afraid now that i just might try to wake her up one morning and she will be gone. This is very scary and more people should know. what i dont understand is why these doctors arent giving us this vital information. I believe knowledge is power. May god bless all!
I am a retired Medical nurse whose husband has Epilepsy from a severe head injury in 1977. He only started with night time epilepsy in 1984. When we met and married in 1999 he had not had a fit for years and took no medication. He then started with night time fits and progressed to daytime fits. He lost his driving licence and then had a fit at work and lost his job as well. Along with that went his self esteem. We have now moved to live in France and was told by our GP in france the risks of this syndrome. I was told by our GP in the UK that as a nurse i should know that "no one" dies from Epilepsy!!! Again i had not seen or heard of it before and had nursed Epileptic patients in the course of my work.
Now i live in constant fear if he is out of sight and rush to find him when i cant hear him moving about normally. i dont sleep well in case he obstructs his airway in the night and I am obsessive about our epilepsy diary ( GP in France said to write one) and i can now predict when he is not right and i need to watch him.
I know my husband is afraid also and i can see that after each fit. He is becoming depressed and i dont want to lose him.
The fear of knowing about this is just as hard to cope with as not knowing as i cant rest if i go out of the house. Dogs are great as my Cocker Spaniel lets me know straight away if my husband starts having a fit with a noise she doesnt make for anything else.
I am sad that so many people are dying from something that should not happen. Come on Britain sort your doctors out as this information is vital to Epileptics and carers.
My heart grieves for those who have lost someone to this preventable condition of Epilepsy and only highlights the need for better awareness.
hi, just want to say my heart goes out to all of you who have lost loved ones. my daughter is nine and has had entractable epilepsy from nine months old. she has around 10 to 15 seizures a day and countless abscense seizures. great ormonde street said she is not a suitable candidate for surgery as its not just one part of her brain thats affected. she also has severe learning difficulties and autisumn. i have been told that she is very high risk of sudep, we just take one day at a time and just be there for her 24 7. my heart and prayers go out to you all, and i count each day that i have with my little lady a blessing. julie
To all who have lost a loved one to SUDEP i really do feel for you and cant even begin to imagine how heartbreaking and traumatic it must be for you.
I myself am epileptic and was diagnosed when i was 13 but in America. My family and i were on holiday at Disneyworld and on the last night i had, so ive been told, a very bad seizure where i choked on my tongue, bit some of it off because my mouth clamped shut, the works. I was admitted to two hospital over the space of 3 days whilst over there and after MRI's and an EEG they confirmed i was epileptic. I'm still not really sure what must have triggered that particular fit but know that now they are generally brought on more my sleep deprivation and stress.
I can't actually remember ever being told at first about SUDEP until i became very aware of it a year later when a girl who was a year younger (but 13 at the time and also called laura) died in her sleep from an epileptic seizure though neither her or her family knew/had realised she was epileptic. Though i didn't really let on to anyone this scared me senseless, living with the thought that i might not wake up in the morning eventually i dealt with it a bit better; always conscious of it but not to the extreme where i was constantly depressed.
I would hate to be in my parents shoes, im 20 now and at university and i know they worry constantly as im no longer at home where they can 'keep an eye' i guess. Only this week i had a fit in a dark street when i was walking home alone at half 8 in the evening though thank god 2 people were passing, found me and called an ambulance. Normally i have about 1 or 2 grand mal seizures a year, but its increased considerably all of a sudden; ive had 2 in the past month so 3 in the past 3 months alone.
I've never been fully informed about SUDEP and i often wonder that with younger people doctors choose not to say too much if anything at all as, talking as an epileptic though parents would naturally feel the same too, it is a very scary concept to digest. They do need to raise more awareness and not just to those immediately dealing with it, to others too. So many people don't understand epilepsy, just because you can't see the disability doesn't mean it's not there often making it even more dangerous.
Again, my thoughts go out to those who have lost loved ones because of SUDEP. It's an impossible experience to ever get through, i couldnt even imagine and hope my parents would never have to experience it also.
Laura
my 29 year old son was found dead on june 21, 2007 for no apparent reason. He had epilepsy since he was 11 years old and it was assumed that he died during a seizure. He did not aspirate,vomit,smother,choke, or fall out of bed he was just laying on his stomach, dead, probably the whole night. He had just had a complete sleep study in February of 2007 that showed every thing was okay and for him to stay on the depakote and tegretol.No one in all these years every told us that my child could just die from this disease. Please make your message as widespread as possible so other parents and loved ones do not have to loose the people they love over something that should be looked at and maybe prevented.
My daughter Emily started having seizures shortly after birth. The doctors didn't know what caused them and they couldn't control them. She only lived for 9 months and 20 days. She never learned to talk to crawl...I miss her so much its like a hole in my soul. I was never told that she could die.... I feel so betrayed by the doctors. Like maybe I could have prepared myself better. She didn't die in her sleep or anything that peaceful. She just woke up one morning and couldn't breath properly. Then her heart stopped shortly after we got her to the hospital. They had just given up on treating her...I thought it was because they had done all they could do. But they treated me like a hysterical mother when I was trying to get help for my baby. I took her to many different doctors and all of them said NOTHING about the fact she could die. You are all lucky that your country has this site, my country (Canada) is still treating epileptics like crazy people. I cannot express my pain or grief or anger at what they did to my daughter, to myself, to my family.
My beautiful daughter Donna age 41 passed away Nov. 15, 2008 after have epilepsy for 38 of her 41 years on this earth. My heart aches for her and for all who have suffered the loss of a child. We fully expect the cause of death to say SUDEP. We have always been active in all facets of Epilepsy awareness and educating ourselves to whatever was available for treatments whether it be drugs, clinical trials, implants and surgeries. But never in all of this time has anyone ever mentioned SUDEP (Sudden Unexplained Death in Epilepsy). What a shock to say the least. Since my brain isn't functioning too well right now and not many cogents come through I am still struck with the question would I have wanted to know or not. Knowing seems to make one become paranoid to the point that the person with this disease would think they have crazy parents or not knowing would not and cannot prepare one for the inevitable outcome. Donna throughout her life was a giver of self and body and brain to all the professionals who have come to her aid. Never have I heard my daughter utter "Woe of why me." She wore her epilepsy on her sleeve never being ashamed to tell anyone who would listen without them running after seeing the seizure. Believe many did. Those are not real people but people without compassion. She enrolled throughout her life for every drug trial that came along no matter how the drug made her feel. Had deep implants to record seizures, had corpus collusom surgery and was until her passing enrolled in the SANTEE trial of one would call deep implants to find where seizures were coming from. Even at her passing we hope to learn from Donna something that her Doctors at Columbia Prebysterian Hospital can use to help or save one more young life. We who are left to mourn our child must pick up the mantle and forge forward to educate others as many out there have no idea what we as caregivers endure as this disease is not one that is readily seen by anyone on the surface. Donna would define herself as one who has epilepsy and not one who epilepsy owns. She passed in her sleep at home in her own bed surrounded by love of family and her faith in God gives me the strength to carry on each day. Take from our long journey to fight the good fight and never give up hope that there will be right around the corner something wonderful to help those with Epilepsy. I learned always to say Good night and I love you and see you in the morning. As we don't know if morning will come. Donna is in a much better place than us at peace and above all no seizures. Lean on anyone who will give you an arm or shoulder to cry on and get help in any form you can find in your community,. Just writing this is cathartic for me but I fully expect it to be a very slow healing process. God bless you all in your long struggle ahead. Dee
Am so sorry to hear of all your losses. We have just found out that our 3 year old son has epilepsy back in stepenber 08 after a year and a half of having seizures. Not once has any doctor told me about sudep whih i find terrible how can they not tell people about this. i feel as a parent let down by the nhs. I didnt think that having seizures could be fatal.I just hope and pray that i can a protect my son from this happening to him.
My daughter has global developmental delay and epilepsy. She is two and a half years old and was diagnosed with epilepsy at 10 months old. Her seizures are very scary because although she doesn't shake violently she is always very sick, clenches her teeth together and stops breathing completely. I often have to breath for her (it is terrifying). Thank God her heart has continued to beat because during her last seizure she didn't breath on her own for 30 minutes. Sadly after a seizure so bad she is put back even further with her development and forgets simple things like how to eat or even smile and it takes days to get back to how she should be. Because she is profoundly disabled we still have her sleeping in our bedroom in a cot with a monitor to check her breathing. I am totally paranoid about the fact we could lose her. We only recently found out about SUDEP and only because I think the doctor felt we should be told because our baby always stops breathing. We have five other children, three still live at home and we feel it is important to inform all the family of SUDEP. As frightening as it is we give our baby girl all the love in the world and cherish every moment. Our thoughts are with all who have lost a loved one through SUDEP.
Lou
Hello Lore
My 22 year old son died May 24 2008, two weeks after you lost your son to SUDEP. My son's seizures were (we thought) well under control - he had moved into his own apartment in December and was attending college full time. I hadn't spoken to him the day before and had called to just check in and got no answer - after several calls to his friends and his dad we went to check on him and found him in his apartment. His dad climbed through the window and in a moment our lives changed 4-ever.
I feel so much guilt that I wasn't there for him - and I'm sure u can relate.
may u find some peace during these even more difficult days
tresa
My 13 year old grandaughter was found cold and non responsive in her bed just a few months ago. Her first seizure happen the summer of her 9th birthday. It wasn't long after that her monthly period begain. Her medication was always trileptol. For the last 9 months her seizures would happen just before, during or shortly after her monthly period . We watch here when she was around stairs, when she took showers we were always on the alert. The Doctors never warned us , never spoke about sudden unexpected death in epilepsy. The word need to get out . That this can happen. The death certificate said cause of death seizure we want to know more. was it the heart ? was it the resipitory (lungs). What actually happen to a young healthy beautiful girl (except for the seizures). Walking and talking fine the day before not a sign that the worst day of my life was about to happen. These stories need to be told . This information need to be in the media . Families need to know.
Hi, I feel so bad for everyone who has lost a loved one to SUDEP. My 13 year old daughter died from SUDEP on October 16, 2008. We discovered her epilepsy when she was 11. She had alot of tests done and was on medication. Even with her epilepsy she still seemed so healthy, and was an 8th grade cheerleader. We were so shocked by her sudden death. No one ever told us that this was a possibility. The morning of october 16th I was on a hunting trip and my wife went down to wake our daughter but found her dead. She had died sometime during the night. At times the pain has seemed almost more than we can handle. She was such a good young person and had so much going for her. I hope that we can raise more awareness about SUDEP so that more research will be done. May God Bless You All.
my brother was 24 years of age when he died in his sleep 26 years ago . we had never heard of any one dying from epilesy (his was nocturnal) and it seems that all these years later it,s still a closely guarded medical secret he once told my dad well at least it can,t kill me ! how very wrong . noone can ever prepare you for finding your loved one dead in bed( he was actually on the floor with the covers on top of him) and it still upsets me to this day. my heart goes out to all of you who have lost loved ones and i am amazed by the number of young men around my brothers age that have died is it coincidence or a nother medical mystery?
My son died November 08, 2008. It's been a terrible year. Jr. began to have seizures in 2006. There is no family history of seizures or epilepsy on either side of our families. All we know is his health care receipient had them. He was diagnosed with two (2) legions on his lungs and the doctors said it was sarcoidosis. The neurologist later found twelve (12) spots oon his brain and it was diagnosed as neurosarcoidosis.
He was put on antiepileptic medication; dilantin. He had seizures every two to two and half months. However, he had never stopped breathing. Later in the year; 2008, his seizures became less frequent,
This information needs to be released to the public. If we had known this could occur we would have kept a better control, eye, assistance over him.
The epilepsy clinic where he had been seen and receiving treatment only told us of this condition after we were summoned to where he had live and found him dead on the floor. Supposedly he fell from his bed and suffocated.
The medical examiner still hasn't given us a cause of death.
i am a nurse for many years, my beautiful son Grant has suffered from epilepsy since the age of 9, he has been on many anticonvulsants,was assessed and turned down for temporal lobe surgery,has had a vagul nerve stimulator fitted, had sleep apnoea,i always knew deep inside that epilepsy would take him one day, but was never told this by any specialist that i would always interrogate, i thought we were experts on our sons condition. Sadly Grant died on the 16th December2008 aged just 25 years old, he died in his bed with no noise we heard every fit he ever had but not the one that ended his life, A post mortem showed epilepsy was the cause of death. Parents need to know that this is a very real medical possibility,i have no answers to this at this time, and cant think how to stop this but i pray someone out there does, my hearts go out to all of you that have lost someone special to this awful illness and to all of you that are fighting this on a daily basis,gina
My brother died from epilepsy 20 years ago . He only ever had seizures during his sleep and at the time of his death had not had a seizure for approximately 4 years and was otherwise very healthy . My understanding is that some of the risk factors include being a young man, living alone and having nocturnal seizures . Also not taking the correct dose of medication
I agree with all the people on this forum that the risks of epilepsy haven't been publicised very well