SUDEP Action

Making every epilepsy death count
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Gaining support from others

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Karen Osland
Gaining support from others
angela
concerning sudep

i lost my son to sudep 15 months ago , although it is difficult to understand reason why it happened .can i ask other members of forum who have lost a loved one to sudep . those of you who have been to the meetings about sudep as i haven,t been able to attend yet due to commitments ,can i ask did you get impression from information given that a sudep death could be prevented ? the thing going round in my head at moment is if i had walked in at moment my son was having a seizure would i possibly have saved him with cpr etc i ve read some things about sudep and talked to a few people but i,m still confused  i,ve read there isn,t a test doctors can do to test for sudep but is it possible to save someone if you find them in time during a fit or are these types of seizures .a type its not possible to save when it happens? also my son was taking his medicine for epilepsy and it seemed controlled and he didnt drink alcohol either

Dizzydenny
Preventing SUDEP

Hi Angela

Its still early days for you and 15 months is no time at all.  I feel for your loss and my thoughts are with you. My 8 year old daughter was fully medicated for epilepsy. She only had one fit a year since she was 3 and had no night time fits that i am aware of. She might have wet the bed a few times which could have been a fit but i didn't know enough about epilepsy until she died from it.  She had a seizure just after lunch during a holiday club.  There was a fully qualified first aider that used CPR immediately as she dropped as he could see in her eyes and face that she was in trouble. Two ambulances arrived within minutes and the police, who offered assistance but none of them could save her even with a defibrillator machine.  They did get a heart beat but it was irregular. She arrived in A&E where doctors tried in vain to regulate her heart but after an hour of every possible form of help, nothing could be done and she died.   She remained unconscious  the entire time since dropping to the ground.  Before the fit she was playing with her friends and there were no signs that she was going to fit.  This was  in February 1998.  I have always followed  SUDEP Action  (epilepsy bereaved) and attended some meetings in the early days but like you time is of the essence and found the meetings were quiet a distance to travel. The research has definitely come on in the last 14 years and I hope that one day they will be able to tell the difference in epilepsy seizures.  My daughters EEG and autopsy came back with no evidence of epilepsy but the people that witnessed her dying confirmed she had a seizure.  It is all so hard to understand and believe this has happened and there are times when you really question it more than others. I cannot change what has happened and could not have stopped her from dying but I do know that everything's humanly possible was done to try and save her and now I just hope they will be able to find a cure for people who could possibly die from a fit.  I hope this helps you deal with your questions. Xx

angela
sudep

hi denny thanks for your reply ,i,m sorry for your loss , your answer helped me a lot ,regarding this question , it was agony waiting for 10 months for a diagnosis tracie spoke a lot about the sudep and and i,ve corresponded with vicky too from sudep org i have been going through this question a lot lately and it has been difficult to understand , i read up on a lot of sudep reports from what were sent to me ,very helpful and sad so many young beautiful people like my son he was taking his medication and it seemed controlled from day one which began when he was 10 years old my son only had one or two a year at night and then he started tablets and it was controlled every so many years they took him off tablets but he would have a fit in first few days ,so would go back on again  the last fit was aged 18 again when he was taken off tablets and this was a day time fit but no shaking he fell to floor and was unconscious , and family were there ad he came round after then andreas excelled in his studies at school a levels and university and was in a happy place in his life with lots of plans once he got his degree , he had experienced feeling dizzy in summer but would,nt check it out and he had blood tests a few months earlier proved fine and he had been taking his tablets according to autopsy results  i had spoken to andy that day november 2011 and he was fine then i left and few hours later i walked into his room and found him in bed on his stomach and i knew he was dead but called ambulance and got people to try to help but we couldn,t move him  the autopsy result said sudep cause of death

Anonymous (not verified)
Hi Angela, first off i wish

Hi Angela, first off i wish to offer you my sincere condolences on the loss of your son. My son Dean died almost 2 and half years ago . He was 10 years old.  Your question was probably one of the first i have asked. NO is the impression i got. SUDEP is unexplainable.

As far as im aware, Sudep is the worst type of seizure their is,. If it could have been prevented, we would have done so.  How do you prevent something that is so little known about, 

i hope i have helped a little

take care of yourself

Donagh

angela
hi donagh thanks your reply

hi donagh thanks your reply it helped , i,m sorry for your loss your boy was so young it must be so difficult at times

Donagh (not verified)
Hi again, sorry to only

Hi again, sorry to only replying back to you now. Yes it can be very difficult. We all miss Dean terribly. He was so young, and it was devastating when it happened. To have a healthy child one day full of life, and to put him to bed and for him not to wake up i couldnt put it into words for a long long time. Dean was put to bed that night at 10pm, and checked again an hour later, he wasnt breathing  then, so the ambulance who came within minutes got his heartbeat back but like a previous post, the heart beat was irregular. He was rushed to hospital to were they tried their hardest to save him. Unfortunately he died. He was our only son then. Dean is gone now over 2 and half years, I know everything was done that night to save Dean. The ambulance and hospital tried their hardest. Like many others on here my hope now is to find a cure. Not a day goes by i dont think about him. xxxx

Caron (not verified)
Loss of daughter 3 weeks ago

Nikey had seizures from the age of 7.. A beautifull selfless soul who battled 200 seizures a month reduced to 10 in 2006...life was on the up for her, regaining confidence and never letting epilepsy stop her..and we wasnt going to stand in her way..why would we!

She parraglided, she swam with dolphins, she reversed bungee jumped, she rode the biggest rollercoasters, she went back to college, she made beautiful jewellery, she volunteered in local charity shops...always with enthusiasm. 

Until 3 weeks ago when i found her asleep in her bed, try as i might to bring her back home.. I knew it was fruitless..

yesterday we held her funeral, and approx 200 people came to show their respect ..for a young lady, taken to soon from SUDEP..  She was inspirational and a voice for epilepsy, never refusing to talk to people about her own.

in her memory we are holding various events throughout the yr with many people backing our...NIK'S SHOUT FOR EPILEPSY awareness campaign.

She taught me many things in life and one was to never give up, we battled many political issues along the way to allow nik to live the life she wanted, not what the authorities thought would be ok. She made choices, i gave her choices. No one should ever have to compromise because of money..i no longer have my angel to fight for, but ile continue to fight in her memory for epilepsy/sudep awareness.

cambridgeshire..uk area...

R.I.P. my teacher, my best friend x

 

angela
sudep

caron i,m so sorry your loss of your lovely daughter so recently , my son  was a lovely person so full of plans and had a great humour he was doing great at university and wouldn,t tell people about his epilepsy only close people and a friend he was taking his medicine it seemed controlled since age 10 i feel his memory lives on ,and the memories keep him close in my heart and his brothers we talk every day of him and we love and miss him but i always talk of him he had lots of friends and they came to his funeral it was very emotional and for the anniversary his friend came we released  white helium ballooons and had chinese lanterns later on we also planted a rose for him in memorial garden , i have made a garden at home too that is dedicated to andreas lots of flowers and roses,my other son his brother has special needs so i,m  very busy as a carer  well done for how you are raising awareness  , nicky will always live on in your memories of her ,god bless

dennyb
Our Loss

We are all asking the samw question why?  Truth is we don't and maybe never will know why we have lost our loved ones.  Nothing can make it easier for us, we have to look to the forward and try and prevent it happening to others, easier said than done.  We lost Eve 7 years ago, we still have "teary" days, no reason, a memory, piece of music, time of day, can be anything.

All our lives have changed, I find it hard when meeting new people who ask, about children, I have to explain about Eve as she is part of our family, people reactions vary, shock, embarrasement, but I cannot ignore Eve.

Our saving grace has been Sudep Action, we go to as many meetings as we are able, and need to, no pressure is put on people, you do what you can.  The annual meeting at Dunchurch is always enjoyable (yes I know that sounds strange), we have tears, sadness, laughs every emotion, we all understand each other, its like charging your battery to get through the next few months..

Be kind to yourself

Denise

 

moncler (not verified)
moncler
good post, i have been looking for it
Dale (not verified)
Too many questions

Hi all,

My twin brother died 2 months ago at the age of 32. He had Tuberous Sclerosis of which, epileptic seizures were a symptom. Alex had been on medication all his life and his fits were relatively well controlled. I wanted to share his death in the hope it may answer some questions:

Alex was in the Frenchey Hospital (Bristol) when he died. He was in for tests leading up to laser surgery on his brain which was hopefully going to rid him of seizures. He was hooked up to numerous machines which were taking readings from his brain constantly as well as monitoring heart rate, temperature and blood pressure. He had a nurse with him 24 hours a day and was also being video monitored. Consultants would pop in and out throughout the day to talk to him and check on his vital statistics.

On Tuesday 14th May, Alex woke early morning and had a seizure. It was common for Alex to have a seizure early morning and the consultants were waiting for it to happen so they could get the readings they needed from his brain in order that they could operate successfully. Within minutes of coming out of the seizure, Alex's body went into shut down. The crash team were on the scene immediately but, despite trying for 45 minutes, they could not resuscitate him.

Alex passed all his medical tests prior to being admitted to hospital. He had the best care possible and the experts were on hand within minutes to attend to him when things went wrong. Although the inquest is still pending/ongoing, the head consultant believes the verdict will be SUDEP.

For those asking "what if?" I hope this brings some comfort. If a team of highly trained medical experts could not save my brother, there was nothing you could have done to save your loved one. Our loss is still raw and the void in our lives huge. Our only hope is that the data gathered from Alex's hospital stay and the outcome of the inquest will go some way to helping explain why and how this happens. It is apparently very rare for someone to die from SUDEP at hospital (the consultant said it last happened 16 years ago at Frenchey hospital) perhaps this will be the start of a better understanding? We can only hope and pray.

I will post again if/when I have any further news.

God bless you all x

Pam (not verified)
I am so very sorry for your

I am so very sorry for your loss. We just lost our 16 year old son who also had Tuberous Sclerosis, on Sept. 25, 2014. I found him in his bed. My husband immediately started CPR while I called 911. There was nothing he, the paramedics, or hospital staff could do to save him. We have been told it was SUDEP.  The doctors tell us nothing could've changed the outcome. Your brother's story seems to confirm that too.  Please know that your sharing your story has helped others, myself included, that have felt if  only we had done something different, or sooner....My fear now is that  it will also happen to our youngest daughter, who also suffers from Tuberous Sclerosis. They tell me the risk is small, yet firsthand experience makes me scared all of the time. 

Juliet Tumeo
Bereavement support

Dear Pam, we are so sorry to hear about the loss of your son.  If you would like to speak to someone please contact our bereavement support team at support@sudep.org. The support team are here to help you in any way they can. 

SUDEP Action Team

tracyroy
Coping

Hi we lost our son Fathers day June 19th 2011. he was 22 and had a little girl who was 3 at the time.  I cope by throwing myself into work and not spending time at home, I still breakdown at a drop of a hat, how do other people cope?  I am so sorry we are all in here, it should never be.

tracy
Hello

Hi im so very sorry to read your post im sorry your here too,  my son went to heaven just a month earier 18th may 2011 he was just 23,its very sad and difficult to cope I dont think you do ,,just seem to get up each day and do all the things that your ment too, I often cry as the pain is so deep,life has broken our hearts forever... I went to my first meeting in november at preston everyone was so lovely and I learnt that very sadly we all feel the same devasted x.

Lucy (not verified)
No answers just questions

Epilepsy sucks its taken my husband and i have no answers, no answers to give my children, my sons whos only 5 months old will never know his dad, I have 2 children from a previous marriage who looked upon my husband as their dad as their own was useless and a stepchild who lost her mum at 2 and now her dad. Her family are very difficult with me and i struggle to deal with them on my own now. My own family flocked to the house immediately and suffocated me to the point i had to leave at times i know they had good intentions but it became like a social gathering at times. Now hardly anyone bothers, why do people think you only grieve up until the funeral??? Its been 52 days today and it feels like a lifetime already i exist instead of living. My hubby was 33, rediculous age to pass away. We had such a hard difficult life with so many pressure, and i just hate being here alone. People try to be helpful by saying things like be strong for the children, but what they dont understand is thats the problem my very existance now is only about the children im now just a mother, i want to be a wife i want there to be something after my children have grown up and left home, i want someone to cuddle me after a hard day. Everything was easier awe had a nd better with my husband by my side, i feel so cheated like im being punished. I cannot understand why there are so many horrible people walking this earth and someone like my husband is taken? why doesnt he get the right to watch his children grow and grow old with me like we planned. As we already had a ready made family with my 2 and his one our time as a couple would come after the children but its been snatched away from us.  I hate anything new as it feels horrid not to share it with my husband, i hate anything familiar as it hurts like hell were not sharing it, i hate it that things happen or are said and i cant share them ask his advice or respond in a way that i know he wouldnt judge me where others would. we are soul mates and i feel so empty inside now, nothings the same on your own, the whole point of life is to share things otherwise whats the point...... i have been forced to change my life to a different path, one i dont want but have no choice. I hate the rollercoaster of being able to smile and grin and bare it one minute and then breakdown the next, you never know whats going to get to you, i hate it that i try so hard to hide my sadness to the children but they see it. Im better when there are people here but everyone has their own lives to live at first i had someone here 24hrs a day i was very lucky. but then it was left to a few people. I would hear them strugglying to judge work and family to help me and realised that i just have to get on with it, it wasnt fair. Its kinda like if people are here i can distract from whats happened but as soon as im alone its there to smack me in the face. The nights are the worse, I feel guilty the way i feel as it sound horrible, like i disregard the children but im here for them but no one for me. Its been 52 days yet it feels like a lifetime since ive seen him. How can it be that i now face a lifetime alone? im 39 im not a bad person, i never do anything nasty? i see people moaning about their husbands leaving mess and stupid things and i think you just dont know how lucky you are. I get annoyed at people who are in relationships when they are unhappy because i think life is too short you should find that special person not waste it with someone you dont really want to be with. Im sorry this is probably not anything you want to hear about but if i dont get it out ill go mad im sure, you need to let the pain out and who exactly can you call at 3 in the morning? i will go to bed and paint my morning smile on fight through another day to wind up back here again with resentment pain and annoyance at the lack of understanding of how my beautiful husband can be taken from me and there are simply no answers for me anywhere, maybe ill return and actually put something on here of relivance but after reading through all the stories you have put it just shows me how much pain there is for too many people with no answers. god bless you all and sorry for your losses and sorry for my babbling on  x 

joannarob69
Struggling

Hi all,

I have been reading all these posts and realize that I'm not alone, My Daugher passed away in August 2010,aged 17, I spoke to her at 6am she said she was fine and was going back to sleep, I checked her at 7.45am and she was on her stomach in bed, I tried to wake her and realised she was unconcious so I called the ambulance and then started mouth to mouth, the paramedics spent 45 minutes gtrying to revive her but got nothing, she had only been diagnosed in the March and had never had a full blown seizure, occasionally she would jerk and drop what she was holding and that would be it, she was enjoying life and was at sixth form college, I coped ok at first but the last year has been really tough and I have gone backwards I feel, I now know more about SUDEP....something I had never even heard of before she passed, I still don't understand it.....is it a seizure? when I found my daughter she was still covered up as if she hadn't moved, apart from the fact she was on her stomach which was something she never did. Recently some of her College friends recorded a CD in her memory and so far we have raised £420.25 for SUDEP ACTION...which I'm so happy with. She would have been 20 now, 3weeks after her funeral I recieved her A level result..she passed and got all her university grades, I am so proud but also I can help feeling cheated, does anyone else feel like this???

Jo

 

Lucy (not verified)
response to strugglying

Hi, im so sorry for your loss 3 years on, its been 52 days of hell i cannot comprehend 3 years on your doing amazingly. I too didnt quite understand the definition of sudep, I spoke to a really nice lady called Tracey from this website who gave me alot of comfort in understanding some facts about what they do know. I felt guilt that i hadnt acted quick enough and that i could have some how prevented Epilepsy from taking my husbands life. But even from reading some of these posts i realise that it is pretty much impossible to save someone.  My understanding and this is my understanding i could have it wrong is. My husband had a seizure then died the cause of death on his death certificate is epilepsy, as i witnessed it. Had i not woken and witnessed it, it would have been assumed he probably had a seizure and would have been under the umbrella of sudep. I THINK sudep is basically when someone dies and there is no explaination no sign of heart attack or suffocation etc. Which is still the case with my husband having Epilepsy on his death certificate says nothing other than he had a seizure, which i already knew. I can only draw from my own experience, my husband was controlled under medication for some years.  One day that changed and he had far more frequently he also changed in the way he had the seizures, every one was different all grand mal but his body reacted differently as did his recovery, the doctors told us that something had occured to change his condition and they needed to find out what. They prescribed new drugs ontop of his existing drugs. So my own belief is that something new had arisen which caused more seizures. He was frightened to sleep this caused tiredness a trigger for more seizures, we were both under immence pressure, stress another contributor to seizures. So for me tiredness, stress, change in meds, change in condition all contributed to more seizures. The actual seizure that took his life was the quickest ever, his breathing was different to usual. I must stress that this is only my opinion from my own experience but i feel something changed for my husband to cause more seizures, add stress and tiredness this encauraged more seizures increasing the odds which meant that the more seizures he had the more probable he was at higher risk. I think the change is very relivant, there is definately something around the breathing, he didnt suffocate as i made sure his airway free the very fact i checked that, tells me i was concerned with his breathing, without realising it, if you understand that, it was never a usual concern for me, but i had gone into shock so some of the info comes back to me in bits.  Which leads me to assume maybe lack of oxygen in the blood was a contribution? my husband has had plenty of seizures but only his last took his life. Why? no one knows. That for me is sudep the unanswered question of what exactly happened. Many people speak of no signs of a seizure and i can say it was very quick and contained with minimal disturbance around him so had i not woken i know i wouldnt have been 100% sure he had had a seizure, but probably suspected. I think if theres no evidence of a cause ie seizure, heart attack etc then its sudep.  please correct me if im wrong. The sites ive researched are sometimes quite technical and i have no medical background. I would say to you, the one comfort you should draw is that it seems to be the same for all witnessed, is that its extremely quick, im talking 2 mins max. I hope you find some comfort, my heart goes out to you but do please call this website the lady I spoke to is lovely and can offer you facts that I cant it really did help. I called the number to register his passing as I felt I needed to register as I was able to offer info on what I saw to help come to a better understanding of what happens. it really does help to fund raise i too myself have started a fund on justgiving so people can see how much we're raising and the children have organised events at school which i think helps them recover also. maybe you could try some fund raising it may help?? please respond id like to know how you got on. I think the hardest thing is not having answers, but id like to understand as much as i can. no matter what the label we're all in the same boat we have lost people and have no answers take care x

joannarob69
So Sorry

Hi,.

First off I want to say how sorry I am for the loss of your husband, and so recent for you. Thank you for the reply back yes it has given me comfort knowing that it was probably very quick, I at first thought it was suffocation, although it was not I feel so guilty that she died alone....I guess it's the instinct that a mother protects her children.

I had counselling with Tracey and that helped a lot, I guess I frrl bad that I'm still so low after three years and people have a "pull yourself together" attitude, I'm sure things will get better again, as for yourself take one day at a time and be kind to yourself and take help from people who want to help...you seem admirably strong.

Yes, myself and some of Beth's college friends recorded a CD in her memory which raised £420, which was great.

 

Take care

Jo xx

Maz
112 days and still counting...

I lost my 27 year old son to Sudep in June this year and life will never be the same again. He WAS my life and now he's gone.  He was special needs and when I went to check him before going to bed, I found him on the floor. We went through the cpr procedure but it was all too late.

Lucy.and everyone here....I feel for you so much. I know about the smiley face for others but the tears  just flow behind closed doors.

I suppose I am here for someone to say it will get better but I know it never will.  The stories of everyone here just makes me so sad. Live is so cruel and unfair.

 

Dessip (not verified)
16 days on..

We lost our daughter 16 days ago and the PM can not seem to explain the reason why (we are waiting for histology and toxicology reports)

She had recently started to suffer from nocturnal seizures that we think may have been caused by her contraceptive pill ( she was taking Yasmin)

Life feels pretty unbearable right now but not having any solid answers is making it harder. I understand that we can demand an inquest. Does anyone know if this is true and / or have any experience of what this entails?

Lynn (not verified)
Sibling
Seven years on and i still feel as lost as the day my brother died. I watch my parents continue with life living it the best they can. As i grow older the more i miss him. The more i need him. The life of a sibling without your only sibling is hard. I am not supposed to have watched my parents grieve for their son yet i have and i do. If any other sibling wants to compare feelings and experiences i am happy to chat...listen and share.....Xxx
Denise (not verified)
Lost My Sibling

Lynn I'm sorry to hear of your broken heart relating to your brother passing.   I Have lost my brother 4/10/17 of sudep. My heart is in so much pain and I thought maybe he would of still been alive if I stayed with him the night of his passing, but after reading all of  these comments, I now feel almost certain I couldn't have changed a thing.

 

 

 

Kate (not verified)
Sibling

Dear Lynn

I read your post and share your sadness. I lost my brother 3 and a half years ago and the pain does not go away. I would very much like to share our experiences - perhaps Sudep Action can put us in contact?  Take good care and look forward to speaking soon xx

 

 

Karen Osland
Sibling

I understand that speaking to others who have trodden a similar path can be realy helpful and I have sent a private message to both of you.

jessica (not verified)
me as well
I'm so sorry for all of your losses. I lost my daughter at age two to this horrible diseases. this was in December of ,2002. I only wish this information was available 12 years ago. she had her first seizure at 6mths and passed away from her seventh. I still feel her loss very heavy even with it being almost eleven years ago.
tracy
Hi to all familys has been

Hi to all familys has been 30months since this sudden cruel illness took my son Stephen was just 23yrs and had suffered seizures since being eleven,mostly they were during the night when in sleep,only occasionally were they any in the day he was on medication,all I have learnt is that there would of been nothing I could of done to pevent this,and mostly I could not have saved him.every hour,day,week,month is hard and difficult at the weekend I saw people seeming happy getting tree's/lights and organising their time.I overheard this lady say to another all she wants for this festive time is snow,as i walked away I cryed thinking all I want is my boy to hug and hold.

I went to my first meeting at ppreston in november I was very worried before the afternoon,everyone was so lovely as I sat I filled up and choked how all of us had a broken heart and sadness,Im very sorry to all the other familys on here for their emptyness also,this is my first time on here as Ive been awake almost the night felt I wanted to join Tracy x

jd (not verified)
did my son suffer?

I am so sorry to burden you all with this. I am so confused. It happened in2007 and its 2013. I just want to know if he suffered. It happened in his sleep. He was 15.

Cathy (not verified)
Why

i lost my son 3 weeks ago, and I'm so sad and lost. I live in Australia and I wish we had a group like this here.

laying in bed tonight I was tortured by the fact that I thought people didn't die of seizures, so I have gone online and found out about SUDEP.   Noone had told me that this could happen.

Reading everyone's posts has helped me as I struggle with the "what ifs" that we all seem to struggle with.  I still can't believe that I'll never see my son again and I struggle every day to hold it together for my 17yr old daughter and 10yr old son.  Alec had been out with his mates that night and I checked on him in the morning to make sure he got home ok and then went about life as normal. When he hadn't come out of his room to forage for food as teenagers do, I went to check on him to see if he wanted something to eat.  I realised he hadn't changed position since I looked on him that morning ... Somehow I knew instantly that he was dead, but I couldn't face it. I called out to his sister to come with me to check on him and when I touched his back - he was laying on his stomach - he was so cold, and my fears were realised.

  I live with the guilt that if I had have heard him when he came home, if I had have checked him more closely that morning, if I had changed one thing the night before, then maybe this would not have happened.

My son lay dead that whole day with us in the house and I never knew'.

 I want someone to tell me it will all get better, that life will one day return to some sort of normal.

 

 What do I do now? How do I get on with life?

 

 

 

Juliet Tumeo
We are so sorry

Dear Cathy,

 

we are so sorry to hear about the loss of your son. I have contacted the support team and they have said that they are looking into what support services are available in Australia. But please know in the meantime that if you have any questions or would like to be in contact with someone we can support you by email at support@sudep.org    The support team are here to help you in any way they can.

SUDEP Action Team

Kathryn (not verified)
Hi Cathy,  I'm so glad you

Hi Cathy,  I'm so glad you have posted on the site as many of the other posts are older.  My son died 3 days after your son in very similar circumstances.  He had been out with his friends, come home in the early hours, had a little sleep then got up to have something to eat and went back to bed as he was still tired.  We think he died between 11.00 and 12.00 but he wasn't found until 6.00 pm.  He had fallen out of bed and was on his stomach so he must have had a seizure.  I just need to know that he didn't suffer.  He never remembered his seizures so I am hoping that he didn't feel alone or frightened that there was no one there to help him.  I know there is nothing I can do to bring him back and I realise that there would probably have nothing anyone could have done if he was not on his own so this is the only comfort I can try and seek.  The really upsetting thing for us is that the toxocology report didn't trace his medication which makes us think that he had forgotten to take it.  His girlfriend reassured us that he was usually OK remembering to take it but for some reason it looks like he hadn't on this occasion.  Like you, it was the coldness of his body which really shocked me and that hit me hard.  I don't know whether we are able to share contact details but I feel a real need to talk about this and you must be feeling pretty much the same as me at the moment with our sons' deaths being so recent.  I tried going back to work this Monday  but I have now been sent home again (Wednesday) so I didn't last long.  

 

Juliet Tumeo
Hi Kathryn, We are so sorry

Hi Kathryn,

 

We are so sorry to hear about the loss of your son. I have contacted the support team who might be able to help you with some of the questions you have raised and they will get back to you as soon as possible. You can contact the support team directly on support@sudep.org  The support team are here to help you in any way they can. 

SUDEP Action Team

Melanie (not verified)
Could I have stopped it?

I lost my partner a couple of weeks ago. I believe it was the 19th July but the death certificate says the 21st. 

He was with me on the Sunday and was watching a DVD with our son when he had a fit. I made our young son go out of the room and waited till he came round. When he came round he didnt know he had had a fit, he looked pale and later on he said he felt sick. About 5 hrs later he still said he felt sick and he said he was really cold... It was warm that evening. He hadnt  drank any alcohol that day and he had eaten a big breakfast. 

He went home and never came back. He was found on the Tuesday after I had called the police face down in his bed. U til I came across this site I never knew about the special pillows, could that have prevented his death? Should I have got him checked out after his fit? Was the feeling sick and cold a warning sign?  Was he scared? 

I have so many questions that are not answered. I feel like I should have stopped it from happening. Now because of this my little boy has no daddy, a daddy that loved him and he loved his daddy. I just feel like I'm floating though each day but today was hard as it was one week since the funeral

Juliet Tumeo
Bereavement support

I am so sorry to hear of the sudden death of your partner, this must be such an extremely difficult time for you. We are here to help in any way we can, we have a dedicated support team who can provide valuable listening space and on-going emotional support, long after the lives of people around you have returned to normal. Our support team will listen and assist you in any way they can. If you would like to talk to someone contact our support team on 01235 772852 or Email: support@sudep.org

 

Cheryl (not verified)
Hi Melanie,I too have the

Hi Melanie,

I too have the same questions as you and unfortunately there are no answers. I lost my brother on 13th July, he was 37. He had been seizure free for the last 15 years, well controlled on his meds. He was also found in the prone positon in bed. A few hours before he was out with his friends doing a music gig. Never drank and gave us no cause for concern and then out of the blue this! It is so difficult and we miss him every day. 

I too asked about the anti suffocation pillows. As a family we knew nothing about Sudep and are so angry that there is not enough awareness about it. I was informed by the coroner that he wouldn't have felt any pain and that this last seizure took hold and his pilot light went out. 

 

Words cannot express what are all going through! Xxx

 

 

 

 

 

 

 

 

Juliet Tumeo
Dear Cheryl, We are so sorry

Dear Cheryl, 

We are so sorry to hear about the loss of your brother.  We have a dedicated support team who can provide valuable listening space and on-going emotional support. If you would like to speak to someone please contact our bereavement support team at support@sudep.org or on 01235 772852.

lee (not verified)
sudep

My Nephew passed away 6 days ago. Aged 33, with 2 children from a previous relationship, and 1 with his new partner and takeing on her 3 children. He had started having fits while at secondary school after falling out of the top bunk bed. He had stopped hsving fits for a while. He had run out of his medication,and had had a couple of fits during the week, alway about 1am.

Apparently he had felt abit unwell the last few days, and had an upset tummy. His friend thought he didnt look right.

His partner woke up at 5am and it appeared that he was sitting on the edge of the bed, apparently fitting but not like his previous 1s. He wouldnt come out of it. She went downstairs to get the phone and when she came back he was on the floor..The 999 operator instructed her to do C.P.R, and when paramedics arrived they worked on him for 45 minutes.

But heartbreakingly to no avail. He was my sisters eldest child ,1 of 5 .

My only solice is that at the moment i am telling myself that he went to bed that night happy, with the woman he loved, knowing all his children were safe and tucked up in bed, and he knew nothing about it.

The one thing his partner did say was that his eyes were open. Today the postmortem results came through and clarified Sudden Unexplained Death.

This doesnt really answer the millions of question all of his loved ones left behind need answering..Or what we can tell his 1 year old son when he is older.

If this cause of death is so prevalant why are newly diagonised patients not advised and pre existing sufferers given information when they have a repeat prescription is given for their medication.

Our Family Will never Be The Same Again.

 

 

 

Juliet Tumeo
We are so sorry to hear of

We are so sorry to hear of the sudden death of your nephew, you must be so shocked and devastated. We have a dedicated support team who can provide valuable listening space and on-going emotional support. Our support team will listen and assist you in any way they can. If you would like to talk to someone contact our support team on 01235 772852 or Email: support@sudep.org

Taryn (not verified)
shocked
I lost my twin brother 3 weeks ago, he had moved in with his girlfriend 3 months before. At 26 you never expect to be without the one person who's been in your life since the beginning but on 14th October he died and I will never forget that day for the rest of my life. We are still yet to piece everything together but he was in his bedroom since finishing his 2 hour shift at work. His girlfriend apparently found him on his knees with his eyes open and hand on the window sill but he was already gone. His epilepsy was not controlled and the consultant kept changing the meds but saying the last resort would be a vegus nerve surgery which didn't happen. The coroner told us that SUDEP was rare but reading all the posts I'm not so sure it's rare... how can so many people be in the same position and not know anything about this problem. It's still not real to me and I feel that I could go and see him at his new home but I of course cannot do that. I know this will only get worse. X
Taryn (not verified)
Wrong date

i meant the 14 August 2015***

Juliet Tumeo
Hi Taryn, we are so sorry to

Hi Taryn, we are so sorry to hear of the sudden death of your twin brother, you must be so shocked and devastated; we are here to help in any way we can. We have a dedicated support team who can provide valuable listening space and on-going emotional support, long after the lives of people around you have returned to normal. Our support team will listen and assist you in any way they can. If you are in the UK and would like to talk to someone contact our support team on 01235 772852 or if you are outside the UK please email: support@sudep.org

Taryn (not verified)
shocked
I lost my twin brother 3 weeks ago, he had moved in with his girlfriend 3 months before. At 26 you never expect to be without the one person who's been in your life since the beginning but on 14th October he died and I will never forget that day for the rest of my life. We are still yet to piece everything together but he was in his bedroom since finishing his 2 hour shift at work. His girlfriend apparently found him on his knees with his eyes open and hand on the window sill but he was already gone. His epilepsy was not controlled and the consultant kept changing the meds but saying the last resort would be a vegus nerve surgery which didn't happen. The coroner told us that SUDEP was rare but reading all the posts I'm not so sure it's rare... how can so many people be in the same position and not know anything about this problem. It's still not real to me and I feel that I could go and see him at his new home but I of course cannot do that. I know this will only get worse. X
lee (not verified)
Hi Taryn,I know exactly how

Hi Taryn,

I know exactly how you are feeling.Shock, pain, and disbeleif. My nephew passed on 12 August, in his sleep. He had been fine the night before, cooked dinner for his younger brother. He was 1 of 5 of my sisters children the eldest at 33..

To see my sisters hurt and pain, is crippiling.And to know none of our lives will ever be the same is heartbreaking. We cant celebrate Christmas or our Dads 70th Birthday in December. We are not complete anymore.

I have said to my sister , that maybe ignorance is bliss as now we all know SUDEP is a life threatening illness for Epileptics. I dont think my sister or my nephew would have ever had a peaceful nights sleep again.

However I cannot understand that unless you have suffered the heartbreaking loss of a loved one, we would never of heard of SUDEP. We as a family have promised to raise awareness and raise funds, but really is this enough. How many more people are we going to have on here breaking there heart and grappling for answers x

 

Sophie (not verified)
Lost my little sister.

I lost my little sister, Charlotte, in June 2011, she was 19. Nearly 5 years on and it's still so hard to talk or write about it.It was concluded that she had a seizure in her sleep and suffocated.I was always scared of losing her when I'd see her having seizures; it was the most terrifying thing I've ever experienced. And yet, as she was my sister, I mostly put those thoughts to the side and tried to treat her as any sister would and as normally as possible. When it happened, it took a long time to sink in and even now it takes me by surprise sometimes that she's not here anymore.As many people say, it doesn't seem to matter how much time passes, sometimes grief can just spring out of nowhere and completely knock you over. I don't believe solidly in heaven or an afterlife, but i've chosen to believe there is something more than just this life. Not because I believe it with all my heart, but my heart would break if I didn't.

Being a sibling, I grieve not only for the sister I've lost, but the future that I would have had with her - as my chief bridesmaid, as Aunty to my children, as someone to recall childhood memories with, as my friend until old age.I can't imagine for a second what it's like for a parent to lose a child, but to any others out there who have lost a sibling, you may sometimes feel a little left out of the intial influx of sympathies. There is often such a huge focus on the parents' loss that your own grief may feel under-appreciated by some. Never belittle your own grief, it's just as important. We were 4.5 years apart in age and so despite playing together a lot through childhood, through our teen years we weren't super close. We had just started to spend more time together in my early 20's and she was really getting her life together - a job, community work, hobbies, producitve counselling sessions. And then one day, a week before I was moving house, the night after chatting online about potential operations to help her...she was gone.I could write so much more, but this is probably more than most people would read anyway.Everything changed after we lost Charlotte.I'm a completely different person, I'd like to think a better person because grief teaches us many things about ourselves and lives. But some days it hurts more than I could ever imagine I would hurt. But I'm blessed to have such a loving family, partner and friends and that keeps me strong. x

Juliet Tumeo
Bereavement support

Hi Sophie,

The shock and trauma of an epilepsy related death can be devastating, SUDEP Action offer immediate telephone support after a death, as well as on-going support for people where deaths have happened years before. Each milestone and anniversary can be difficult, our support is ongoing and open ended. If you would like support, please remember the support team are here for you. Whatever you may be going through and however recent or long ago the death was – don’t go through it on your own, we are here to help you in any way we can. Please give us a call; 01235 772852 or email us; support@sudep.org

Jen (not verified)
SUDEP

 

It will be 15 months tomorrow since we lost our precious son to SUDEP. I also have experienced many of the same questions and feelings expressed in many of the other posts. I have agonised over whether or not he should have been on more medication, should he have ever stopped his medication or would the outcome have been different if I had found him earlier. Our son had complex partial seizures in his teenage years but came off medication during his uni years without incident even with the stress and sleep deprivation of studying engineering. He had his first nocturnal seizure in Sept. 2014 and resumed medication.  He had 2 more nocturnal seizures during the next month and then nothing for 5 and a half months. Ben worked as an avionics engineer in Sydney but was home in Queensland for the Easter weekend. He went to bed his usual cheery self on Sunday night 5th April but when I checked on him around 7 the next morning I found him unresponsive on the floor beside his bed. His dad and I started CPR and the paramedics continued when they arrived but there was no response. Sudden, unexpected death is such a shock and I was left with so many questions and feelings of guilt about what else I could or should have done to prevent this happening. We were never told about the risk of SUDEP and so had no idea that this could even happen. We lost our precious boy 5 days before his 23rd birthday and attended his funeral instead of a birthday celebration. I appreciated those comments made previously which helped with some of my questions. It helped some to know that others have had similar feelings and questions and that even being in hospital with immediate expert care on hand did not prevent a SUDEP death. We miss our dear son every minute of every day and he is never out of our thoughts. Love and miss him always. xoxo

 

 

 

 

 

Juliet Tumeo
Bereavement support

Hi Jen,

We are so sorry to hear about the loss of your son, this must be a very difficult time for you. If you would like to speak to someone, please contact our bereavement support team at support@sudep.org Our support team are here fo you and will listen and assist you in any way they can. We do have an international Officer in Australia who is working hard to raises awareness of the risks, so we hope to see changes in awareness and practice. If you would like to hear more about our work in Australia, let us know and we can put you in touch with her.

SUDEP Action Team

Deborah (not verified)
My daughter Rebecca

Hi everyone,

 Like you I have lost a loved one to SUDEP. Our daughter Rebecca was just 24 years old when she passed on Jan 16, 2016. Rebecca was and is the light of our lives. She had a seizure in the morning recovered from it was happy and wanted MacDonald's. I took her, came back home were she ate looked at me with the sweetest smile. I asked "Are you all done honey?" She smiled again pushed her tray away and went to her bedroom. Just 25 minutes later I went to check on her she was on her stomach her eyes were open but not moving and she had the sweetest smile on her face but I knew something was wrong. Most of you can probably guess the rest, attempts to revive, paramedics, then the "I'm sorry we tried for 20 minutes but she's gone she died."

 Our entire lives revolved around her as she had special needs (Autism) and required alot of care. We are coming up on our first Christmas without her and to be honest I feel like crawling away somewhere and hiding. I just don't have it in me to give a damn about the holidays anymore. We enjoyed this time of year because of her, everything we did was for her. Now my life is just a huge empty void with no purpose, nothing matters. My husband also epilepsy and I hope everyday that I don't find him as I found my daughter. Since it happened I have been diagnosed with PTSD and severe depression. I find that I am lacking the strength just to make it day to day let alone face the holidays. The purpose for my writing this is the hope that any ideas that anyone might have and be willing to share on how to survive this time of year when you are in so much pain could be useful. I've read alot of the posts here and my heart goes out to all of you. I keep hearing as I imagine that you do, that life goes on well that may be true but only if you have a desire to be a part of it, which is what I am lacking.

Thank-you all for sharing your stories

Deborah Doherty 

 

Juliet Tumeo
Support Over Christmas

Hi Deborah, 

We are really sorry to hear about the loss of your daughter Rebecca, this must be an incredibly difficult time for you. The shock and trauma of a sudden death can be so devastating and Christmas can bring back painful memories of what you have lost. Please know that if you would ever like to speak to someone, our support team are here for you. You can share your thoughts and feelings and the issues you are struggling with. Speaking to a member of our support team, you will find yourself really listened to. Our team can support you by telephone if you are in the UK, or by email if you are outside the UK via support@sudep.org and can arrange to contact you on a regular basis, our service is open ended. Some members have also told us that Reading through the personal stories on our website may help you to feel less alone, you can read the stories here: https://sudep.org/my-story

Please also see our bereavement support leaflet.

SUDEP Action Team

Jamie James (not verified)
SUDEP Awareness

SUDEP... Learn it, share it and engage it... On behalf of Heidi Ann Gandy (3/1978 to 3/2015) ... My wife, a mother, a daughter, a sister and best friend we love you and you'll never be forgotten!!! Love 3 times my wife, in Jesus name, Amen

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