Sudden Unexpected Death from Epilepsy - Documentary

Epilepsy affects approximately 250,000 Australians, and yet very few people are aware that people with epilepsy are at risk of Sudden Unexpected Death from Epilepsy.
SUDEP occurs when a person with epilepsy dies suddenly and prematurely and no other reason for their death is found. SUDEP is most likely to occur in people who have frequent tonic-clonic (convulsive) seizures, especially at night.
More research needs to be done to to find out the exact cause, but so far experts believe that the regularity and severity of seizures can alter a person’s heartbeat or breathing

[@blaquephoenixrisen]

My brother died like this a few weeks ago. I never thought a seizure would have such an empact on my family's life. We're lost!

[@tobirates916]

I am so sorry for your loss, and feel your pain. My son died from epilepsy just over 6 months in January 2023. We miss him so much❤️‍🩹

[@clarahopkins5182]

So sorry to hear this

[@glo85ria]

Just found out that a friend died from sudep. The shock and pain is still raw, sour and painful. I 'm still in denial that he's gone without warning.

[@ranaahmed3442]

My sister in law passed away this morning from SUDEP while sleeping. Very heartbreaking i never understood the impact of SUDEP as she was a very highly functional person

[@viccon7566]

so sorry for your loss x

[@liapat814]

I am so sorry. Hope she rests in peace.

[@darlenevega3084]

I lost my son in a seizure! Never was told about SUDEP! So very sorry for your loss!

[@catlover535]

I have epilepsy, never been in control, I fear i could die,my heart goes out to this family,I lost my best friend Scott he was found in his flat he had drowned in the shower.miss him everyday . I had a Vns operation 4 years ago it has reduced my grandmals but I still have seizures .My Vns is not a cure i take each day as it comes you have to.

[@stephisaseal3728]

My Cameron passed away from this. It’s been very hard dealing with his loss. There definitely needs to be more awareness.

[@leeyakii]

Stephisaseal I agree

[@jessatheclassicrockfan6925]

I agree

[@fckyoudidntask642]

My baby. I miss him so much.. I couldn't stop crying for like a month and a half. Life's so unfair..

[@lindaninjilo78]

I lost my fiance we had a 6 month old. Really devastating. She just didn't wake up in the morning 😔

[@mikaylalowman9478]

My mum has seizures and i get so scared because she is my bestfriend and i cant just let go of her because she is all ways there for me when i need her😭❤

[@fatmamohammed4928]

My brother has epilepsy hurts my soul seeing him have seizure :(.

[@yoitsjustme3116]

My heart goes out to this Family. My daughter (now 22, diagnosed with at least 4 seizure types at 15) recently finished a 14 day eeg video home study and was prescribed a home health care worker due to extreme risk factors for SUDEP. She has an 18 month old little girl and new husband. All i want is to hold and cuddle her again. Her seizures make her sort of disconnect from emotion a lot.

[@candynpheonix1]

My brother just past he had epilepsy he past on the 29june 2018 we need to be more on top of this it is so sad my heart of me and all my family are broken I am so so so sorry for your loss God bless your song and your family

[@ausmick]

Heartbreaking story . Such a great family we definitely need more awareness of Sudep

[@lindadavies5298]

SUDEP so needs to be spoken about. I lost my son aged 30 June 2015. So hard it should be mentioned by doctors nurses even an tv advert like their is for strokes

[@skips1965]

I lost my sister to SUDEP back in August 1986. She was only 15 yrs. old.

[@annalisejeannette1474]

My mum was epileptic and she died from Sudden death. She died in her sleep

[@0045annie]

I lost my son to sudep 3 weeks ago 29 years 7 months 14 days. We are heartbroken

[@annalisejeannette1474]

Sorry about your lost

[@0045annie]

Annalise Jeannette ❤️

[@boitumelosekhaolela9596]

i lost my mom because she hid that she had epilepsy fro me, and because she did not fall i did not even notice anything except for memory loss, all this time she had absent seizure. its so painful i found her lying dead on her bed im still traumatized and hurt.

[@MogulMom]

BOITUMELO SEKHAOLELA I’m so sorry my husband is in denial of his seizures since they are not often I’m terrified of this happening

[@MsNooneinparticular]

Oh wow, that's so awful to hear. I'm so sorry for your loss. I can't understand people who hide major medical ailments from loved ones but maybe she just didn't want to worry you.

[@astrofrk]

RIP. I am a male in his 50's and while somewhat less likely, this could kill me as well. I just got out of the hospital, my seizures are not under control. This just gave me a wake-up call.

[@abdirizakhassan2014]

How long have been on your medication??

[@astrofrk]

@@abdirizakhassan2014 Between my Status Epilepticus and Small Cell Bladder Cancer, 13 prescriptions drugs.

[@astriddobek8931]

I came upon this video and was stopped by the title. My daughter was diagnosed when she was 6 years old back in the 1990s. I was always told no one has ever died from a seizure or Epilepsy. And that gave me an enormous amount of solace. Now my daughter is 34. And had collapsed in the shower. And has had seizure in her sleep. I thank you so much for putting out this information. Although it terrifies me because she is not only my daughter but one of twins. But the awareness of the dangers are so important. No doctor has ever informed me of this before. So I thank you from the bottom of my heart. I hope it never happens to my child. And I can't even imagine the loss that these parents have gone through.

[@original_rumpleforskinn7574]

Poor kid. God rest his soul 😔.

[@chanabayla1823]

As an epileptic myself and a volunteer for the epilepsy foundation this is rare its the exception not the norm. Your best defense is to be controlled and open about your epilepsy. Don't live in fear

[@spike84able]

Bless their hearts thats sad. Poor baby. SUDEP needs to be spread awareness wise its important.

[@theresacoombe6359]

Thank you for sharing your heartbreaking journey.

[@user-lb1or7wc3n]

I had a Craniotomy to correct my life time illness from epilepsy. The Neurosurgeon remove part of my left lobe over 5 years ago. I now suffer from fibromyalgia, nervous system is messed up and still have seizures plus I am in chronic pain 24/7 and unable to take pain meds due to damage to my liver and kidney's from taking seizure meds all my life. Now I wished I never had the most painful scary surgery. I also have short term memory loss and improper balance and many other issues. I could kick myself for agreeing to have this surgery especially when my first Neurologist said it would not work and could cause more damage. He was right and I should have listened to him. Thank you for sharing this video. My children always fear that something like this could happen and I only have seizures in my sleep and if I am awake I am not aware of them anyway. Only if someone sees me have one.

[@EPILEPSYTV]

Thank you for your comment. Im so sorry you have been through such an experience.

[@spike16965]

Not many people do not want to talk about Sudep, they are in denial.

[@Hangman1]

Epilepsy Action and SUDEP - 2 worst things that can happen when you got epilepsy

[@charmaineholloway419]

My good friend passed on 1/18/24. He was like a son to me. He was 21 years old and a sweet kid in the neighborhood. He did everything that he was supposed to do but the seizures got worse and no the medications stopped working. His death prompted me to research my diagnosis of complex focal seizure disorder.

[@EPILEPSYTV]

Im very sorry to hear about your friend. Taken way too early. 😞

[@user-yf7es4gz3o]

I have epilepsy and I had a seizure in my sleep and almost died if my aunt wasn't there

[@katarainahemi916]

I have epilepsy been diagnosed 4 yrs now haven't even been told most of this from my doctor's that I am hearing thank you so much for this video

[@EPILEPSYTV]

Hi Kataraina, we are glad that you now know the risks related to epilepsy to make informed choices. If you would like to learn more about SUDEP and view the SUDEP and Seizure Safety Checklist, please click on the following link: www.epilepsy.org.au/sudep-checklist/

[@susankelleher4887]

My 32 year old daughter died of sudep 9 years ago never heard of it till she died miss her everyday

[@kittymacca80]

Love your little bee forever. Just know he’s with you.

[@viccon7566]

im so sorry for loss what a beautiful son in the arms of jesus now thank you so much for this so so sorry rest in peace damien beautifyl soul xxxx

[@randomrambler2884]

my heart goes out to all the families involved especially Damian's family. Heart wrenching. Very sad indeed.

[@jamarcherry2766]

I had a seizure in 2005 the year Damian Swan was born. So sad he died at 10 years old.

[@tanishagraves3827]

My son passed from sudep. Recently I was told the meds he was on was toxic!! 😭😭😭

[@jkalb1744]

I am so sorry. I lost my brother from this.

[@RelsisFido]

You know you can sue the doctor that prescribed them, right?

[@jasminebuendia7014]

My twin sister and my uncle died a few day ago from a seizure I never knew how much it could hurt it had been 3 years they didn’t have ine

[@GabbyGonzalesphx__]

Yeah heartbreaking story 😨

[@SARAH_1LEE]

My 14 year old brother died from epilepsy in 2013 💔it was sudden but he was very sick already and gave us signs but my parents were neglecting

[@nadzworld698]

My older brother aged 23 died yesterday in his sleep. I feel so lost and confused with life without him 💔

[@SARAH_1LEE]

@@nadzworld698 💔💔💔💔💔so sorry sweetheart 😢😢😢be strong for him okay? I am sure he so happy , our brothers will no longer suffer from this illness, they r happy now..

[@SARAH_1LEE]

@@nadzworld698 the only thing I’m glad about his passing is that , he once told me he hate his life because of this illness, he kept telling my mom he wish he never have it , and he was too young to understand, and now he is gone and doesn’t have to worry about it in the physical body, his soul is illness free.. happy and I hope the universe reward them.

[@collingillespie7542]

@@nadzworld698as someone who has epilepsy and suffered from a grand mal seizure for the first time ever and the first seizure I’ve had in over 12 years since I had my brain surgery, I’m only 27, but dying from SUDEP has been my biggest fear for the last decade when I found out what it was(I’ve had epilepsy since I was 5 years old btw) but that seizure in January has done alot of bad for me especially with my mental health being so bad now but I promise you if your brother passed away in his sleep he went peacefully and didn’t even know it. Especially if he died from a grand mal seizure in his sleep. May have felt his aura for a couple seconds but after that he was finally at ease and I think I can speak for most of us living with this horrible neurological condition that if we could die peacefully in our sleep and not have to worry about being a burden to our loved ones, being in constant fear that you could have your next one at any given moment, losing all your independence and living with the side effects from these anti convulsants make it even more appealing to us. There’s a reason why the suicide rate in people with epilepsy is 22% higher than the general population and I completely understand why. This anxiety and depression and memory loss from these medications are not worth it. I say all of this in hopes that you can find comfort in knowing he went peacefully and he’s no longer in agony that can only be felt by and understood truly by the people who are dealing with it daily and will deal with it until it eventually takes our lives as well.

[@Snaoe]

I will always love you Abdulahi. I will always miss you

[@astrofrk]

I don't see many video's on Status Epilepticus but it has killed even more epileptics, I have it. I suppose one could have both.

[@carolsantista1328]

Poderia ter legenda 🥺

[@MsNooneinparticular]

I'd never heard of a case where the person was wide awake & others witnessed it. Sounds like he just stopped breathing & there was no resuscitating him...maybe not even during a seizure? Scientists need to figure out wtf causes this. If people who are 100% treatment-compliant can still drop dead without warning, there's something major we're missing.

[@davidfitzpatrick4254]

SUDEP is the very reason why I personally don't think people with Epilepsy shouldn't live alone. I'm not saying epileptics can't be independent I'm saying it's probably better for Epileptics to at least have a roommate. Yes there are seizure dogs but dogs can't call 911.

[@chanabayla1823]

As an epileptic myself and a volunteer for the epilepsy foundation 1. Dogs can even be trained to pull a car over so yes they can call 911 2. We are like everyone else

[@laenealves3117]

Por favor, coloca legenda em português também?

[@khaos5085]

And to think him dancing to the X-Box lead to this.

[@mandapiee1763]

This is scary.... I have epilepsy.....

[@anasqureshi2479]

I know how scared you are ,stay sage ,take your meds ,DONT DO DRUGS ,ppl will tell you oww its okay ,it cures seizures. Dont listen to them ,just lusten to your doc .

[@raindrops4284]

My sister died in 2018 on March 18th. Her name was Iesha.

[@bfreshmusic8163]

My late brother passed away back in 2014 due to S.U.D.E.P

[@viccon7566]

his big blue eyes stunning xxxxc

[@MilwaukeeMentalMentality]

I have had 2 status episodes the first one in Oct. 2022 and getting the VNS after that. Everything has been well and even improved until several weeks ago and had my 2nd instance of status. Both times my father found me during my tonic Clonic seizure and the noises that I was making. Both instances my skin changed colors and lips turned blue. Spent a night in hospital both times. Ativan not effective each time. RNS implant may be implanted this year.

[@shazbish20]

Im from uk didn't knows of sudep i thouģht it was rare how wrong i was my poor Conner f17 june 26th 23

[@user-qx4rp3kw4s]

I have seizure for 19 years I want to help people with seizure how can I help.

[@EPILEPSYTV]

Thank you. You are more than welcome to contact us on 1300 37 45 37 if you would like to volunteer.

[@selleisa121626]

Anyone here after Cameron’s passing?

[@demyajackson3552]

me :(

[@jessatheclassicrockfan6925]

me :' (

[@fckyoudidntask642]

Me. It's been really though to deal with that. I just don't understand.. Why him ? Life's so unfair..

[@spike16965]

I get myoclonics at night. My meds are controlling it so far. I been diagnosed with JME Juvenile Myoclonic Epilepsy since 2016.

[@cyrillamoraes4594]

May God bless you dear.

[@meg7car]

I have JME too.

[@robertdeffenbaugh9004]

We all know this could have been avoided. The Epilepsy Warnings on games aren’t there just to show it’s a serous issue.

[@eagyinjection]

why god why

[@amanikimiti2885]

Rip juice wrld

[@sammcnear6673]

My sezuires are really hard to deal with I have sezuires in my sleep

[@MHShah17]

The boy would have been 18 by now

[@illuminate4969]

Came here after south african singer died on stage performing..

[@veraperez4462]

I'm the mother of a beutiful young woman with eperlepsy, from the age of sixteen she has had a worning but in the last 8 ,9 months she hasn't had wornings it's affecting her life and people who love her , I feel we have a rite to no about the perennial of sudden death and the medical profession has no rite to keep anything from us as parents that not there call

[@syednadeemhussain7291]

So u r saying I can die while typing this sente

[@funibikeman6769]

😕😕😕

[@bryansanchezfranco3207]

I got epelepsy i almost die

[@funibikeman6769]

Speech 100