Sudden unexpected death in epilepsy (SUDEP)
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Last updated 30 Jul 2009, review date due 30 Jan 2010
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
I am writing this with much sadness in my heart, my son Brandon 23 yrs old had what I think sudip seizure May 17 2010 He was told hehad Epilepsy 6 yrs ago after a fall on his head. He was taken Dilanton 5 pills a day, he had seizures here and there but I think he got lazy at times. The weekend before he passed away, he went to a party drank stayed up late, went home on sunday and studyed for final exams he lived alone, he was under lots of stress to pass ,not enought sleep, and maybe poor diet. I beleive he died mon morn, My older son and his dad broke down his door by wed when we didnt hear from him he was face down on his pillow, to a sight no family member should see. When I called his doctor, he said in all his 23 yrs of pratice only 2 people died well now you have 3. I wish I new more info. I would like to tell everyone with Epilepsy, please take care of yourself get lots of rest, eat well take your meds and go easy on drinking, let all your freinds know how fragule you are. and talk to your doc about sudip. He is much missed , the life of the party. I should of been on your but more than I was. hope this helps someone. carol mackey usa.
my one only son died suddenly of epilepsy he was 16mths old 13 th january 2003 he just ad 1 massive fit and was gone we still cnt believe it i didnt no myself that this could just happen like that as we av a 12 year old daughter that as epilepsy shes ad it since being born shes on medication lamorgine and tapiramate shes been on the same medicine but bigger doses as shes growing up id like to show my story as theres loads of ppl out there that av gone through the same and its good to talk too ppl so ur not alone add me on facebook leanne boulton
Thank you for sharing your story about losing your much loved son Steven to SUDEP. We too are grieving for our lovely daughter who died on her 45th birthday 4 May 2010 of the same condition. We too had never heard of SUPED. Our sorrow is deepened by the fact that nobody was with her when she died. Her Au pair found her after taking the children to school. In fact we had not seen her for months because we live abroad. We had planned a family reunion at the end of May for half term to see her and her children. It was not meant to be.
She had a hard life but overcame her illness through determination and achieved much in her life. She gave so much to others and worked with social services in education, helping children with many difficulties as she knew what it was like to be different. At 11 she started petit mal which went on to develop into grand mal at 17. There were many types of anti convulsant drugs she was given. In fact she had a cyst in her brain that swelled up during the menstural cycle which mostly caused the seizures an was inoperable.
There are two beautiful children that she has left behind. We are blessed to have them and they will come to us for the holidays. Our two sons and their families will also share in nurturing them. At present the children are with their father and new partner.
We will always talk about her to ther children so she is never forgotten. There are no words to describe what it feels like to lose a child except to know that we were blessed in having them with us for their short time on earth.
Hi Liza,
There are no free kits as such, but you may be able to get help with paying for a bed alarm for you daughter from the Muir Maxwell Trust. If you wanted to talk through the options for various alarms with someone, you could ring the Disabled Living Foundation Helpline on 0845 130 9177.
Cherry
Advice and Information Team
could u pls tell me more about the free kits 4 bed seizures where do u get them from ? my daughter was just diagnosed with JME i couldnt sleep with keep checking on her whilst she sleeps me sis said she seen some monitoring sheets with alarm on internet but they cost £350
plez have a look at abbieslove.com or we are on facebook abbieslove charity group
Ive had two seizures in public and a few in my bed today im so sore i think i had one in my bed . it worrys me the last public one i had i was in critical care in the hospital..Im still not on medication im going to see a neurologist but im going to get on the phone 2mrw and ask for an emergency appointment to get put on pills because me seizures that i have had that people have witnessed have lasted for like 5 mins at a time.and when i come round i dont know my name my birthday or nothing.. and reading the posts it worrys me i feel so sorry for your losses and the women yvonne i think her name was dont blame yourself for you sons death.Epilepsy is uncontrolable but you can have comfort knowing he was enjoying himself with the john candy film and he probably wouldnt have been in pain when he went to sleep because when i had seizures when i come round i just feel confuzed and dont even know it has happened until a few hours later. take care and god bless xx
I Just read your letter about your son, with tears in my eyes. I lost my daughter also from SUDEP. She died alone at the age of 36. No one found her for 18 hours. We were out of town and couldn"t reach her by phone. She had lived by herself. She was engaged. He should of been there but he wasn't, God's will,
Your grief will get better but at first, it's unberable. I'm sorry about your cancer. I got breast cancer a year after her death, maybe from stress. Try not to stress I know your pain feels physical. I think about my daughter everyday four years later and have no pictures on the wall of her. It hurts that bad. I walk in the Epilepsy walk every year it's around her anniversary.
Write me if you want. I understand your grief.
Yvonne
Hello, We are grieving for the recent loss of our 20 year old son, he passed away April 11,2010.He had epilepsy since 1997 and we have never heard of SUDEP. We were always worried that we would go somewhere and come back to find him dead from a seizure. But on this day, we were with him. We had took his 17 year old sister to work, came by the store to get items for a cookout at the river park, and came home to get him. His father loaded the cooler and he was worried about his dad's breathing. I told him that anyone of us could die at anytime. We went to the park, cooked out, he ated good,and had a nice time. I had been having treatments for anal cancer and I was on my last few days of chemo and radiation. I wasn't feel the best. We went home. Sat out in the front yard for a bit. Went to get his sister from work. Went to back yard,him, his Dad, and older brother played with the dogs, while I watched. His brother set up the horseshoes, he and his brother played. I went inside, I was getting cold, his dad came inside. Then he came in to let us know that he had beat his brother in horseshoes, he was happy, he wanted his dad to give him some skin, dad did, but he wanted a little bit more, so dad gave him some more. He then sat down on the couch to watch T.V. a John Candy movie was on. He was laughing about John Candy water skiing. He then started to have a seizure, we got him in the floor on his side, but he started to throw up all of his food, he got sick 3 or 4 times, had another bad seizure, and then I thought he was calming down from them. But I was wrong. I asked his dad is he breathing, because he was too quite. Dad thought he was, but I went over to him, raised his face, and he was turning blue and not breathing. I called 911. They wanted us to start C.P.R. Nothing!!!! Ambulance got here. Nothing for them!!!! Hospital-Nothing!!!! He would turn 21 on July 10th. We miss him so much, especially me, because I always looked after him. I feel like I didn't do my job that day because I had my chemo pump on and I wasn't feeling good. But I thought he would come out of it. He wanted to get a job and find him a girlfriend to love him. But now he is gone at such a young age. The preacher said God took him now because he may have had something he would not be able to deal with later. Steven We Love You Mom, Dad, your brother ,and your sister
I have just read your posting on the epilepsy.org website and was so, so sorry to read of your loss.
My son (age 10) has just been diagnosed with epilepsy after having 20 fits in 23 hours (and 10 in 24 hours in February, and various reflex anoxic seizures in his toddler years...). The paediatrician who made the diagnosis did mention SUDEP and I'm glad she did, although I am terrified. But your comment "a life lived in fear is a life half-lived" has never sounded so true and it will become my mantra. I will also learn CPR and get my husband to too.
Thank you for sharing your experience.
Vicky
hi, ive a daughter who is 6 and has had epilepsy from she was 10 months old, her doctor at the hospital told me last year to take her off her meds to see how she got on 2 weeks ago on the 9th april i was back up seeing the doctor and they told me my daughter is high risk of death through epilepsy, it has scared me to the bone i have not slept worrying, i feel for all you who have lost family through epilepsy and i agree its wrong they should have informed you off this condition, im just glad in a way they informed me in time my daughter is now back on her meds and doing well so far
Dear all! My heart goes out to all of you who experienced loss of the loved ones to SUDEP. My husband, a father of my two little kids, died at the age of 38 a year ago, Easter day 12 April 2009. Three days before his death he was at his friend’s house and suddenly dropped with convulsions and stopped breathing. While ambulance was on its way, a friend hit him in the chest and started his heart back and brought him back to life. When he was taken to an emergency a second episode confirmed something was wrong and a CAT scan revealed an area of calcification in the frontal lobe. My husband was referred to a neurologist and an appointment was booked for him 2 months later!!! No EEG, no MRI, nothing, he was let to go home to die!!! Without warning him or the family. My dear husband didn’t want me to worry so I did not have a chance to help or investigate or to say my last Goodbye. So sudden and so tragic and so painful loss. He was found dead on a bathroom floor…post mortem examination revealed vascular malformation and scaring in the frontal lobe leading to epileptic seizure. I just wish I knew and was with him at the time in the hospital to insist on further actions. I wish he told me, and I wish hospital doctors done a bit more for my husband at the time he was admitted.
Hello Catriona,
There is a Facebook page under Causes... : SUDEP (EPLILEPSY AWARENESS)
blessings
Diana
Hi Catriona
I was the person who asked about liver problems that were highlighted at post mortem. My son Grant who died Dec 08 was 25 years, he never drank as he lived with us, following postmortem we found that he died of sudep but also his liver was badly damaged. They put this down to alcohol but he never drank, at the Inquest i highlighted this and the pathologist then started looking at longterm damage from his anticonvulsants. I have since found lots of research that links sudep and liver steatosis.Currently a poisons expert at a london hospital is carrying out a report on my son to try to determine the cause of the liver. I am not saying dont take medication but people need regular bloods taking to test for this. Grant had signs of liver problems via bloods from 2006, i only found this out by asking for his medical records after he died. It is only that i am a nurse that i noticed these abnormalities.
Just another thing to be aware of, as i wish i had been aware of sudep.
Gina
Somebody earlier asked if there was mention of liver abnormalities in the post mortem of their loved ones ... my answer is YES . Also thank you to the lady who sent me a message further up the page who lost her sister to Sudep and is now looking after her sisters baby. It sounds like you are doing a great job keeping your sisters influence alive in your home ... I am trying to do the same for my little boy and his Daddy. x I think it would be good if we could have a face book page so we could share our experiences.
My 34-year-old brother-in-law is epileptic, but takes his medication religiously, and so has not had a seizure in many, many years. He is very clean-living - no alcohol, healthy diet low in sugar (he's diabetic, too), lots of exercise, and an active social life. He's probably the fittest out of all of his family!
On Tuesday this week, he was apparently very disoriented at work. He drove home, couldn't find his house keys, and drove back to work to see if he had left them there. He collapsed at work, went into cardiac arrest once in the ambulance, and again at the hospital as the doctors were taking him to have a brain scan. Both times he was successfully resuscitated. However, my husband's family and I are SO lucky - if he had found his keys and been at home alone when this happened, we would in all likelihood be planning a funeral now.
I have only just found out about SUDEP, and I don't think any of the family was all that aware of it before now. We are shocked, and scared that this could happen again. And of course my brother-in-law is the most scared of all. He works in the automotive industry, is a bit of a petrol-head anyway, and is worried that he will lose his job and his freedom, as he will now be unable to drive for a year.
I have read messages from so many of you who have lost loved ones to this tragic condition, and my heart goes out to you all. I also feel guilty that our loved one survived by a stroke of luck, where many others have not. I can now only hope that my husband's family and I won't have to experience the pain of loss at some point in the future.
Hello Everyone
My Name is Liz, i googled this evening death caused by epilepsy & found your sight, the reason i did this was because my 10yr old son Luke has had epilepsy from 22 mths a combination of seizure types including drop attacks, tonic & absence, he has been through so much ( i am finding if difficult to compose this email through my tears when i think of what he has gone through in his short life) and i still expect him to be the perfect little boy which he is not . He is trying to find his way he has been cocooned for most of his life now he is trying to make a life for himself, but i have this horrible thought that one day i will loose him to this cruel disease, surely there must be someone out there with a positive story.
Regards someone who understands
Im still learning about this. My mother died when i was 13 from a siezure. Noone can give me any answers how excatly she died. She had epilepsy all her life. She was only 35 yrs old. She was asleep and didnt wake up. So to answer questions I have, Ive started doing my own research.
Hi My name is Derek and i will be 21 in july. i started to get grandmalls that continue one after another and only stop due to my lungs not working at the age of 14 ( brain starving for air). I am curently looking at thease articals because after 5 years of taking Tryleptoal i have had no signs of any sezure what so ever, Until now. I live by my self in an apt, Have my own car and got a degree in eng. ( not spelling lmao got to put a little humor in here ) After reading almost all of theas articles my heart goes out to all of you families and loved ones who has had this tragic event happen to you. It seems that the worst things that cause this to happen that are in almost every ones comments I HAVE. Including the ages of whin diag. to the tragic incident leading to the passing of a person. Now that i have educated myself about this and the recent reacaurences of my triggers comming back i am glad i have lived what i have lived and will continue to stay positive about finding ways to prevent this from happening to me. I will take the advice and percautions (all tho i cant take all of them due to living by myself) i will try and expect the worst whin the trigers come. I do want to say to any one with this condition- Its not the worst that could happen no matter what you have there is always some one with somthing mor shitty thatn you, ya it sucks but why would you let it hold you down for dooing at leats some thing you want to do in life. Theese are my words to this article and i hope some of you take them in a good way and go and doo somthing you love or want to try ( with in reason lol) have a good day and hope to reed people's articles with a similar responce. Once again i have the most depest feeling for any one who has lost or who has had to go through ths with family friend or a loved one.
Hi, im 16 and ive had epilepsy since i was 7 and i only found out about about SUDEP randomly on the internet why was i not told about this. Im on Epilim and have never had a seizure while on it but now im constantly worried about this. I think doctors need to do all they can to stop this from happening instead of keeping people in the dark about it. I send my condolences to anyone who has lost someone to SUDEP
I am so pleased to finally meet real people with real concerns , i cannot say how sorry i am for the familys that have lost kids ,and siblings , god bless u all x x
My son came home from school healthy , hungry and tired one thursday afternoon , feel asleep as i was cooking, i came in the living room and he was so white ,!! i tried to wake him and when i did he fitted!! full tonic , i knew nothing of this , i didnt know what to do , i called 999 , as he when blue and stopped breathing ,all i could do was scream and punch his back and chest .. i now have midazolam for rescue meds .
i was told he had eplielpsy last may , eeg said nothing he has since takin more and more siezures , but even when he isnt his breathin is laboured !!
i went back to the consultant last week and as a parent u r within ur rights to ask for tests........ mri , ct and heart checks , only thro this site have i learned this ,
now he is to be straved of sleep all ngt and given a sleep inducin drug so he takes a fit under a eeg !! i think this is to much ! i dont think for any reason i should put my son at risk
the consultant after he said this then said i am sure u r aware of SUPED , i said yes only thro my own research
, the thot of losing my son , is well am sure u all know , i dont sleep but i have found a site that will give u a free kit for bed siezures ,
my son wants to do the west highland walk with his scout troup , and i know i cannot let that happen as much as i want to ,
awareness is the key , am happy to set up a facebook site for this , so parents get the real story of this xx god bless x x
I am 29 years of age. I didn' like the side effects with the meds so I had secrectly stopped taking them for over 6 months. Over the weekend, I had a very bad fit that lasted 30 minutes. Reading this I think I am lucky to be alive.
Hi Sara
My husband and I lost our son in April last year aged 6, I have already written on this site. We did not know about SUDEP and wished we had. We feel that if we had a monitor we could of possibly saved our son or at least been given the chance. I know some people think there is nothing anyone can do but surely it best to have all corners covered and reading some of the comments so people have been helped I have put the name of a monitor at the bottom. I know there is a monitor for SUDEP that you might want to have a look into, at least it might help you sleep a bit better at night knowing something can alert your partner.
Nanny (BM-02) Apnoea Monitor - Cessation Of Breathing Alarm
This scares the hell out of me! I'm 26 and was diagnosed with epilepsy when i was 24. I have partial-complex and grand-mal seizures that happen at night while I'm sleeping... I'm terrified I will die in my sleep next to my fiance and he will wake up and find me. I'm seeing a specialist now but nothing we do seems to help... EEGs and MRIs reveal nothing. I feel like life is what it is though, and I have no answers because there are none.
Hi
I know this is quite a weird question to ask, but has anyone whose family member that has died from sudep noticed on their post-mortem report that they also had probelms with their liver.
I posted a comment on page 1 regarding my Son Grant who died from sudep on the 16th Dec 2008, since Grant's Death i have been doing my own research into sudep and this was something i came across Liver Anomalies.
If anyone feels that they could share this information it would be greatly appreciated, if you are anything like me even the post mortem results and the Inquest become a big part of your life as you try to make sense of why our beautiful Sons' Daughters, Brothers, Sisters were taken from us so quickly and silently.
My thought and Love to you all.
Gina
Our son, Richard passed away 31st August 2009. He suffered a seizure whilst walking alongside a local canal, he fell into the water and was unable to be saved. He was only 25
Our deepest sympathy to all other families. Such tradegies.
XX
Deb and Steve
We have set up a Sunflower Trust fund in Richard's name to try and raise awareness of this illness.
my daughter passed on 17/12/09 from SUDEP i only knew about this from facebook as we have something called dravets family.. all us have/had children with a rare serious condition called severe myoclonic epilepsy of infancy, AKA SMEI AKA dravets syndrome.. she was only 23 months old she would be 2 on 23/1/10. me myself am only 21 turned 26/12/09 and my fiance 19. so its a comfort to have the family on FB and to know we can go on to have more children, i do miss her so very much but im glad also that she isnt suffering. R.I.P all children and adults whom have suffered from this.. if anyone wants to talk im on face book under mandy flynn
I lost my brother Roger Don Rogenski at the age of 22, he passed away on march 9th 2009 he died from SUDEP. It was the hardest thing in the world to lose my brother so young. It was so unexpected. I loved my brother with all of my heart. I still have a very hard time copeing with the fact that hes really gone. He was such a great kid! Very loved by all his friends and family. Rest in peace hunny.
Dear people,
In the first place i want to let you know how sorry iam for all your losses.
Iam from the Netherlands and we lost 19 November 2009 our lovely 19-year old daughter Iris suddenly and unexpectedly.
Sudep a word i never heard of, having epilepsy and the chance of dying of it, never combined it.
Like many of you; How come the doctors do not inform us better?
Iris slept on her belly, with two pillows. By our knowledge her (absences) were under control, no attacks for 4 years. She was checked and could start with her driverslicense.
The only thing was, that she suffered from tireness.
Maybe she had attacks in the night she didn't know of and we either, we keep on guessing.
I wanted to know more and found a lot of articles on English Sites. Iam so happy to have found you all, although its so painfull what happened to us, we are amputated.
My husband and I told each other that we would always advice people with children having epilepsy not to use pillows, because thats how Iris died.
Young people are not allowed to die.
Take care of eachother, keep on talking and loving, it will give you all the strenght to go on. Thea Resnick.
my daughter passed away six weeks ago aged 17. she was diagnosed with distant epilepsy about five years ago and only had approximately 5 full seizures. the doctors were talking of reducing her medication hoping that she had grown out of the condition. she was at home on a study day running the bath when she passed away, her mother found her when she got home from work lying on the floor with the taps running in a pool of water. as you can understand our whole world has been turned upside down especially at this time of year but yet again we were not aware this could happen. i spoke to my doctor about what has happened and asked why we were not told to which he replied 'your not told because they dont want to worry you as there's nothing you can do'. i appreciate the concern but reading this site there were things we could have done which may have prevented this happening, we should have been told !!!
I have just lost my 24 year son on 3rd December 09, suddenly and unexpectedly, although not confirmed it is 99% thought that it was SUDEP. My son, Darren, had many complications, he was diagnosed with epilepsy from the age of 18 months, he also suffered from cerebral palsy but he was well and thriving at the time of his death. The shock has been overwhelming for his father and I as we had no idea that this could occur. Recently I had asked for his medication to be reviewed, which was in progress with a reduction being monitored - if I had not pursued this would he still be alive? Why were we not informed that SUDEP existed?
Hi Debbie
I thank you for speaking your mind. I do feel a heaviness in my soul for the amount of loss that you had to deal with in your life. I'm sure all those people you've mentioned and those who might still pass in time to come has made such an amazing impact in your life. Forget them not, for they've not died in vain. Their purpose has been to touch those around them and the way you speak of them makes me think that they did just that.
Debbie, there is so much we are simply not meant to know. We constantly strive for inner peace and wonderful storybook endings. Yet we always end up at the question of WHY? Truth is we are not meant to know why. We are meant to live our lives not knowing and all that transpires is but a measure of our faith. We have to walk by faith, by a peaceful manner of choosing.
If I could buy your pain and sell you insight, I would. But God is beyond such a form of reasoning. He is with you. He is life and it pains Him to take. In time I'm sure all the things that have taken place in your life would seem like gold. Every moment would be like diamonds and pearls. You would look back and not exchange them for all the money in the world.
My sympathies and prayers
Regards
James Fouche, South Africa
Dear James, I wish you luck with your book, Im sure it will make an interesting read. however, I disagree with your god theory, I am not dismissing your beliefs, sometimes I am quite envious of those that have something to cling to. but for me personaly I cant see how there can be a god.
My 54 year old dad suffered horrificaly for a year with cancer before he died, then last year my uncle was killed in a motorbike accident and then on the 27th Sept this year my beautiful 22 year old sister died from SUDEP leaving behind a 10 month old baby boy. I would like to think that my sister is still here in energy, our memories keep her alive, my mother has visited a medium who said things that were very true, but im not sure I believe that either.
How can there be a god when there is so much pain and sorrow and hurt around, we have evolved and we are still evolving, sadly along the way we lose people that are very dear to us, there is no rhyme or reason to it, its all so very very sad.
Good luck with your book
Debbie Lane
London
Dear Catriona, Im so sorry to hear about your husband, it is clear from the way you speak about him that you have lost your soul mate, life is very very cruel sometimes.
I can understand your pain, I lost my sister Rachel to SUDEP on the 27th Sept this year, she was 22, she left behind her 8 month old son, which I am now trying to care for along with my own 3 children. Christmas is going to be very hard this year, she breastfed her son so it has been very hard for him, he knows something is missing he just dosent understand what it is, we are trying to fill in that missing gap for him but we will never fill Rachels shoes and we wouldnt want to, we talk to him about her all the time and show him pictures of her, its hard when he gazes at her picture and touches her face, but we cant let him forget her, its important that he knows how much his mummy loved him.
Sometimes I wonder if it would be easier if she had not had a child, but then he smiles a toothy smile at me and I see her eyes in his, and I thank the stars that we do have him, she has left one heck of a legacy as has your husband, its now all about the children and the memories we have of those we have loved and lost.
I wish you and your son happiness and that you find strength in each other, my thoughts are with you.
Debbie xx
Dear James
We have already written on this website, we lost our son in April 09 and I would just like to say that your words at the end of you mail are truly beautiful
Samantha & John Marshall
To all of those who have laid bare their pains and sorrows. You have managed to address a tender topic in confidence and in hope that the world might hear. From the deepest part of being to the most inconsequential fleeting thoughts that come and go, I feel what is bleeding inside you all. By means of curiosity and research I have stumbled onto this site.
I’m writing a novel called JACK HANGER in which the lead character discovers he has epilepsy and is properly educated by his physician about the realities of SUDEP and possible solutions to lessen the likelihood of said phenomenon. This had been done in an attempt to create awareness of SUDEP and to aid the development of the character. I hope all who read it will be enthralled with a similar curiosity.
Lastly, let me just add, that the human body is such an amazing mystery. There are many things that science can not define or explicate. Know that SUDEP is not a prolonged 6-month battle against cancer. It is mysterious, random and, most importantly, instantaneous. Such is life. God has created us, has weaved us together in the womb, and has guarded us as a parent would a child. He is selfishly IN love with us his children and welcomes us home when the time is nigh. Please do not place blame on yourself or unjustifiably blame others. Also, refrain from infecting yourself with recurring remorse for your loved ones. We do not make the rules and we are not in control. Peace be with you all.
James Fouche, South Africa
My heart breaks for everyone here who has lost their loved one to epilepsy. My son was diagnosed with epilepsy when he was 4, he is now 16. His seizures started as little vauge episodes and now we have full range of seizures including clonic tonics. He has on average 3 seizures a day with the normal being clusters going for about 20 minutes or clonic tonic going for about 2 to 3 minutes. He has seizures all through the night and when I watch him sleep he would probably have one every 5 minutes where his breathing will change his eyes open and then he will go back to sleep. Sometimes he will have a clonic tonic in his sleep. He has tried all the medications which none have worked. He has now been fitted with a vns to help give some control. It has to some extent where we dont see so many short gerky seizures through out the day. I read a few years ago about SUDEP and asked the doctor at the time, he told me not to worry you had more chance of getting hit by a truck. It would have been nice to have been advised about it without me asking. As for worry, I will always worry. I never leave my son alone. I help him shower, take him to the bathroom and follow him down stairs. Over the top...NO. My son's seizures come without warning. They are sudden, fast and him being nearly 6ft drops like a stone. He sometimes stops breathing and goes blue but then comes out of it. I gave life to my son and I would give him mine if I could. If I can prevent something like this happening I will give it my all. But, in the end it is all in Gods hands. I dont take each day for granted that I have with my son and I hope I will have him around for years to come. But I do live in fear.
Hi Everyone,
I didn't discover this site untill 5th September 2009, when I came home from the hospital after identifing my 42 year old husbands body. At the time the Doctors thought he had died from a heart attack, (but he cycled everyday and was quite fit.) When I got home I typed into google "Epilepsy and Death " ( Why would you type that normally?)and the first site I got to was this one. It was the first time I'd ever heard of SUDEP and now I feel like an expert on the subject having read so much about it, It is odd to think that 3 months ago I knew nothing about it. Two weeks later it was confirmed David had died of SUDEP.
We have a little boy of six and were still hoping for more children, but now our little family of three is a little family two.
My life has been devasted by the loss of my lovely husband, I had never contemplated bringing my son up on my own. I can't believe that David isn't going to see our son grow up, or that my little boy would have to grow up without his Daddy. I dread Christmas, but New Year I dread more.
Me and my husband didn't know about SUDEP and his consultant has since told me that he considered David a very low risk for SUDEP. We didn't have a will, had never talked about funerals or anything like that, but thankfully David worked for a firm that had a good pension scheme and we had life assurance on the house.
Life is pretty rubbish at the moment, but I have to admitt it would have been a hundred times worse if we had lost the house. Month by month we are living on less then half of what we were before, but we are okay. But I cannot imagine my future, all our Dreams and plans are in shreds.
P.S. Jerlisa I hope you have your results, David's results took at least 2 weeks to come through. Thinking of you.
my boyfriend never had seizures until we moved into our apartment in august but he it didn't start until the day after he had hit his head while he was at wok the first seizure he had i didn't know what was going on with him he came outside trying to remember where he was so the next day he didn't have one so the day after that he had another one still didn't kno why so another day passed and he didn't have one that day so the day after that he had a third one this time they kept him over night but every single time he had one they told us it was from heat exhaustion but it wasn't that so in september we went to the fair he almost had another one but i had security to catch himin time enough from having it then on october 6 2009 he had one while he was driving and was on his way home when he had a wreck while having this seizure to top it off i was on the phone with him while this happen to him so i called his parents and wh they made it home he was on their porch dead and it been so hard for us not knowing what the real problem was we have been waiting since the night he died to know the truth but they told us his autopsy report will tell the truth on what was wrong and we are getting his report sometime this month in december please read this and reply to this and tell me what you think was the problem and why it's taking so long to get the results back.
thanks
Jerlisa Aldridge US
Hi...
I can relate to your story so well... my brother was the same, he also didnt take his meds and stopped having seizures after a while, when he passed away he hadnt had a seizure for a long time, about 3 years. When he passed away he also looked so much better and he was working part time and hoping for a good future.
Hope that God will help you with your pain.
All the best to everyone here who have had their lives affected by this condition. It is a shame that not a day goes by without hearing about cancer, yet there is virtually no awareness about epilepsy. My brother died from a seizure he had in his sleep on Christmas morning 2004, four days before his 23rd birthday. I'll never forget the phone call from my father that morning.
The thing about my brother is that he did not take very good care of himself. When he was a kid, doctors told him there was a very good chance he would grow out of the condition. When he was about 17, the seizures stopped, and he was taken off medication. He led a normal life for about two years, all the while assuming he had in fact grown out of epilepsy. However, the seizures returned, and my brother was put back on medication and had his driver's license revoked.
After that he became depressed and would routinely take himself off his medication because of the side effects. He figured that if he was going to have seizures anyway, there was no sense in being foggy and sluggish all the time as well. He also drank, smoked pot, and did not eat very well. We frequently voiced our concerns to him, but he was just not the type of person you could tell what to do. The sad part is that shortly before his death, my brother had really turned a corner. He was back on a regular medication schedule, was no longer depressed, and was taking better care of himself. He was making plans to spend a year in China to learn the language and teach English.
I suppose the point of this story is to take care of yourself if you are epileptic, or urge your loved ones to take care of themselves. Listen to your doctors, eat right, and take simple precautions that can help avoid serious problems. I don't know if my brother would still be here if he had taken better care of himself, but I hope all of you do whatever it takes to improve your chances of a long and healthy life. Take care.
My brother passed away on the 18th March 1999, we found him dead at 12 pm when his twin went to call him for lunch. He was 20 at the time. He was diagnosed with epilepsy at the age of 15 and suffered from depression, as well as other physical problems. We had an autopsy made but the results came as dieing from epilepsy. Up to now we havent really understood how this could have happened. He was asleep, we know he had thrown up the tea he had drank before going to bed and we know that when he passed away he was on his knees as if in a praying position, thats the way we found him. Reading about SUDEP, is it possible that he didnt have a seizure? Seeing that he position was so upright and none that we had seen after a seizure. Could he have had a seizure while sleeping and only had the strength to go into this position? I have been searching for answeres for 10 years, I need closure on this matter. I was pregnant of my son at the time and I would like to be able to tell him how his uncle died.
may God bless you all and ease your pain.
wow...i never even knew about SUDEP. im 23 years old and dignosed with epilepsy at age 19. still the cause is somewhat unknown but i do have a small tumor right next to the thalamus in my brain. im so sorry to all of you who have lost someone. i have not cried in 17years, but these posts...i just couldnt take it. im so worried now and i also have just found out epilepsy kills more than breast cancer a year. why soooo much attention to that and not epilepsy? the stress we all feel doesnt help us either but what more can we do? i worry i might have to endure SUDEP and worst, i worry somebody else might get hurt in the process. my situation could be worse, but my heart cant go out enough to u all. Parents should NEVER have to bury their own children.
On Sept. 16 th 2009, my granddaughter Miracle died in her sleep from a seizure. She was only 28 months old.
We didn't realize this could happen, she had not been put on any medications because of her age.
It is extremely hard to come to terms with, and because of her age , it is even more painfull.
i wake everyday at the same time and relive that day. her parents are falling apart and i can seem to help them, because i too am having a difficult time.
please, if you have any advise that you can offer. we would be eternally grateful.
I lost my 22 year old sister a week ago 27/09/09, My brothers stumbled upon this site by accident while trying to find answers to why Rachel died. Rachels cause of death has not yet been identified,we are all still in limbo and unable to have her funeral until her organs have been reuinted with her body,which could be another week.
Rachel was diagnosed with epilepsy from the age of 14, she only ever had 7 seizures in her life and the last one was years ago. She had a beautiful 8 month little boy which she was still breastfeeding. On that Sunday, I had a feeling something was wrong as my sister had not turned up to pick my dauighter up, which was unlike her, I drove to her house and heard water running from upstairs and her baby crying, the police were called and the door was knocked down,the image that faced me when I got upstairs will stay with me forever. It appears that she was about to or had had a shower and then had a seizure. She was already dead when I got there, no amount of resusitation helpled her, it was too late, she may have been there for an hour before I found her. She did have a slight head trauma which we assumed she had sustained while having the seizure in the bath and that is why she died, but after the post mortem it was concluded that the head injury was superficial and there was no bruising on the skull, the head injury did not kill her,she did not drown,she was not starved of oxygen, she was not asphyxiated.......so what on earth happened? why does a healthy 22 year old suddenly just die? SUDEP is our only answer at the moment, we wait for the coroners report and we will hang here in limbo until we do.
I miss her so much already,we were so close, the bottom has fallen out of my mum's world and our heart get crushed each time her little boy calls for her or searches for the breast, this is so hard.
Debbie x
My heart goes out to all those who have lost loved ones through this. It is terrible that still it is not being spoken about, i had to fight to get taken seriously when my son began 'twitching' at 3days old, we were turned away from A&E 3 times after everything appeared "normal" yet were never offered a follow up appointment to talk about my concerns. After that i kept a diary of how many times it was happening and how long for over a period of a month. Then headed back up after i decided enough was enough, we were to be turned away when my son bowled forwards in my lap aged 4 and half months, only then was i taken seriously, West Syndrome epilepsy was diagnosed, hard to control, he also has learning probs, has tonic clonic seizures in his sleep and has had to be intubated and transferred to intensive care in London, yet not 1 doctor has spoken to me about SUDEP. From reading the above list i now know that it seems my son is more at risk from this possibly happening. Thankfully he has recovered from each of his seizures, and is 5 this week. I wish i had been told about this when he was first diagnosed. As im sure does everyone else who has been affected by this. I hope the pain eases over time for you all who have lost someone close, forever loved-never forgotten x
I was upset to find they did not tell me about SUDEP. after having tonic-clonic seizure i stopped breathing, a friend already was on the phone with the medical sevice and tolds him what to do and thankfully it worked. i am only 16 and have only been dignosed since 2007 this has frightened me and my family a lot. it has put my mind at rest knowing the facts about SUDEP but still i feel let down that i did not know of this before it happened as my family and friends were not aware this could happen or what action to take if it did happen.
Peace to all of you that have gone through this sudden death experience. We too lost our glorious son of 23 years of age. Andrew was diagnosed at age 11 yrs with simple partial epilepsy. He was able to finally drive the past 3 years, and went to college. He came home for a summer break and we found him gone August 22, 2009. He was on his back, appeared to never have moved. As per others experiences in the past, we would hear Andrew. What I would like to add is depending on their age, kids and young adults do not want to divulge to others that they have Epilepsy. I would encourage everyone to have this discussion with their kids, they HAVE to let others know. Especially in situations where they live in dormatories, apartments and the like. They truly do need an advocate, someone to keep an eye on them and mostly report this to someone, family member, college/school personnel. At Andrew's service the boy that slept next to Andrew told me that Andrew had a seizure and told him, "this always happens, don't worry". I also found a card signed by all of the kids one time when he was away at school wishing him "get well" after he had "fallen" with reportedly 2 black eyes. NO ONE reported this to the school nurse or called us. I would call Andrew every week, even at age 23, are you ok, any seizures, the answer was always no, I am ok. Additionally, he started working out in the gym heavily this summer. We found many vitamins and protein powders amongst his things. Our assumption is he may have cut back on his medication.
My heart goes out to each and every person that has written their story. I am a registered nurse, my partner is a respiratory therapist, neither of us ever thought we would find Andrew gone either..... We are devastated, this was my only child. What I know was he was the happiest I had ever seen him the day before, very talkative, had just passed his certified nursing degree......We are grieving one month in to this nightmare, because as others, this situation was not at the forefront of our minds. Being in the medical field neither of us was naive to what can happen to human beings, but this truly just feels to us that there were signs of problems that people did not report and our son at age 23 probably felt stronger, clearer and better on less medication. We understand that he may have chosen this, but with no understanding of the possible outcome. We too are beyond devastated....... Peace and strength to all of you knowing that your children all left a beautiful essence behind in this world. I am glad to know that we are not alone in this and found this website by accident.
With peace and gratitude,
Sharon Wentz RN and Darrel Davis RT
USA
A friend of mine lost her husband 3 weeks ago to this SUDEP and its terrible she has a young son of 6 and is so much in shock as would anyone be. everyone who has epilepsy should be told of the risks with anything like this as at least then the families can deal with this better than if they not told. i do not have epilepsy but feel for my friend as she is in so much shock and to see her in this way is heart wrenching as she is only 40 and he was only 42 and was hoping to spend the old years together this seems so unfair now as he know longer with us. i just feel i need to write this and express how i feel as this should of been mentioned at the time of diagnosis. we have a funeral on friday and it going to be a difficult one for all of us and especially his wife.
hope no one else has to suffer the pain and something is done to tell people and the families of what may happen at least then everyone is aware of this.
helen taylor
we lost our beautiful daughter abbie jane on the 10th dec 2006 to sudep we also like alot of others were not told about sudep which is so wrong the gps and doctors at the hospital should tell you straight away when anyone has epilepsy.abbie was our only child she was 10 yrs old beautiful lively and very funny she had very mild epilepsy maybe just one seizure a year.at our local hospital we have set a trust up in abbies name which we have raised 30 thousand which is there for support groups for families research into sudep.and starter packs for people with epilepsy to tell them all about epilepsy and sudep.we have a charity site for abbie which is www.abbieslove.com please take alook god bless to you all who are suffering like us love tracy richard abbie clarkex