Unbelievable! One of my sons was diagnosed in1982 with grand mal seizures, and another of my sons in1996 with grand mal, petit mal and left temporal lobe, (both diagnosed at age 11), and until NOW, I never heard of SUDEP!! Something's wrong with this picture...!
My cousin suffered from epilepsy and passed away 3 months ago i have a strong feeling it was SUDEP as she was only 21 and suffered from tonic-clonic seizures,she died in her sleep after having a seizure and the doctors had been changing her meds alot!! Neither her or her parents were warned about the risk of death in people suffering from epilepsy but her parents dont regret it at all as she was able to live her life to the full so i think maybe the dr's were right not to tell them
my doctor feels that if a patient suddenly goes off their meds and has seizes, it could be one much more intense and extensive: Increasing the possible permanent [oxygen deprivation] damage and even the risk of death. of course this was a good way to keep me taking them as well and not think of slacking off. :-).
I COMPLETELY AGREE WITH YOU! Much more likely to die crossing the road.
I have epilepsy, and I asked my neurologist and neurosurgeon about it and they both said that nothing can be done to prevent it, they don't know what causes it, so there is little point in panicking about it.
Wow, I am glad that I am not the only one who hops around whilst trying to put my trousers on... I have before fallen over. So, I am thankful I didn't die from that trouser exploit.
Personally, if I am going to die I would like it to involve lots and lots of chocolate. :)
i agree, it happens but it's a small percentile. you can't live if you worry about something bad happening... alot of people die in car accidents too!
Thats how we found out.. After my son passed away from this, it came out in the autopsy.... I was shocked.. Sad thing is, most doctors dont even know about this... Its sad when we the USA do not research this, but we research how many breaths someone might take to blow out a birthday candle.. WAKE UP AMERICA...
My Specialist told me when I was diagnosed with Epilepsy about SUDEP his attitude about it not being anything to worry about annoyed me greatly! I am sure he would not think the same way if he had a risk of it. Twat! Thanks for adding this video, the public needs to be informed as much as possible.
I have been trying to work while trying to deal with epilepsy for 8 years. People do not speak of the devastation and the terror of the accompanying Auras. I had to turn back on my way to work many times hoping that I would get back home in time. Many times I did not make it. EMS nows my name by my face when I do not know mine. My disability claim has been rejected because "Claimant has a high level of education and experience": All worth zilch when one's face is smashed on the sidewalk.
My daughter was 18 when she died 3 years ago from SUDEP. I never heard of SUDEP until after her death. I woke up one morning only to find her dead in her bed. She did not aspirate nor suffocate. Her medication levels were theraputic. I was shocked beyond belief and continue to come to full terms with the loss of her. I asked her neurologist why he never talked to me about SUDEP. He asked me if that was something that I really wanted to know.I should of known about the possibilities.
i have had 3 seizures in the last 2 years whilst i was asleep. I haven't been diagnosed as an epileptic nor am i on treatment. I go to sleep every night shit scared as SUDEP is more common in nocturnal seizures. Should i go on treatment or not?
Sorry, I'm not sure what's best. Just say everything you just said in that comment to your doctor and he/she'll know exactly what to do. If you google SUDEP you will get alot sites on the subject.
Epilepsy has been around for thousands of years. One way or another, the world knows about Epilepsy, already.
What's needed is not just plain simple awareness. What's needed is every day practical TREATMENT & SUPPORT system. After all, if the government can afford to finance Alcoholics & Narcotics Anonymous to baby sit drug & alcohol addicts, why wouldn't the government SUPPORT treating Epilepsy victims?
Thank you for letting us express our agony & share your caring heart.
It's about time society recognizes the agony and devastating effects of Epilepsy as much as it recognizes stroke, cancer, diabetes, etc. After all, adversity is just adversity, one way or the other. Let's raise our voice and root for ourselves as much as rooting for others who can NOT stand for themselves. IT'S ABOUT TIME TO STAND UP & CHALLENGE THE CROOKED SYSTEM.
7 hours is very,very long time. I have never went status and i hope that i never will, but there is always possibility that i... Dont wanna even say it. Or write.
My Mother thought she was going to lose me. I missed a few days of my life after that. I don't recall a thing. I hope no one EVER has to expiriance that, you wont recall it, but you loved ones in the room will.
My worst seizure was something about 10 minutes. It was actually my first1. I was about to go get wasted, just like any nineteen years old finn and suddenly I realized that I dont see like I should. It was extremely strange feeling. After that, everything went black. Next thing I remember was paramedics asking me stupid questions. And yeah, I forgot my bottle.I was "wasted" but not because of alcohol. It´s been 2,5 years since my last seizure now.
That's good. Was it induced by getting wasted or did you have E already? Are you on AEDs for E? If so do you have emergency medication at home for family to use on you?
No. Not because of alcohol. I had serious head trauma when I was kid. I broke my skull etc. AED? Is that something Antiepileptic... Medication!?. Yeah. I´m eating carbamatsepine (Tegretol retard 400mg 1,5+1), + lamotrigine (Lamictal100mg 1*2). For emergency situations I have Stesolid (diazepam) for rectum, but I might change it to Epistatus (midazolam),If it´s ok for my neurologist.
I also ate Rivatril(clonazepam. Same as Klonopin at States)about 4 years but no more.
Ok yeah..I take Keppra 3000 mg daily, Klonopin 2 mg daily, Dilantin 300 mg daily and for emergency's...I have Diastat rectal valume...and I cant spell either...LOL
Angel Thank you for caring to write. I appreciate you sharing your experience with seizures with me and with the whole world. For many people who are coping, living and caring for victims of seizures, I understand my seizures video is very disturbing. We all can learn something from the miseries of seizures, which may help us face our vulnerability.
Just like you are witnessing the epileptic seizure on this video, I learned the hard way from my own family and friends, it's a life time haunting trauma and agony to see your loved ones being struck with seizures. Seizures destroy families. Too bad, there's NOT much that could be done to help the patient or the family. All that "help" advertised by "caring foundations and agencies" is nothing more than empty promises and bureaucratic circus. It's heart breaking, we are on our own. Good luck.
Have you ever thought or considered that Brain Surgery might cure or reduce your seizures? Did you ever asked your neurologist about Brain Surgery to cure your epilepsy? Check it out with your neurologist or any other sources of Brain surgery in curing Epilepsy and see if it helps. Frustrated of 10 years old seizures, medications and side effects, I'm demanding for Brain surgery, knowning that I've 70% chance to stop my seizures.
Folks, I thought I was alone but thanks for your confirmation that our medications may be causing us to have HEART ARRHYTHMIA. I'm still getting VERY suspicious of my medications. Are they helping or hurting? Like you see on MySeizures videos, I'm wondering WHY I'm beating my chest so hard before I'm totally knocked out with seizures? It seems, I'm having CARDIAC ARRHYTHMIA- A DISTURBANCE IN THE HEART'S ELECTRICAL CONDITION. SEIZURES ON SEIZURES, is my medication causing my CARDIAC ARRHYTHMIA?
i have epilepsy also for almost 12 years now..and my neurologist found out i have arrhythmia then went to mitral valve prolapse and now a rheumatic heart disease..it's really hard coping with these kinds of 'illness'..but we have to try to live as normal people do..may we all recover from this..good luck to us all..hope and pray afterall, we're still in His Good Hands..take care
If you type what 'triggers seizures' to google search, the first 2 results are very good sources of information about epilepsy. I'd give you a link here but it won't let me type url.
no. depression is triggered by stress. my seizures are triggered by sunlight and not getting enough sleep. i have epilepsy and depression. i would know.
i sometimes feel like im gona get a seizure but it doesnt come. it may come from a traumatism i had because i saw a cat who had one and it freaked me out
From all the cases I've read, it seems a lot of the people who had died had slowly come off their medication a few years earlier, thinking they'd grown out of it.
Thanks for getting SUDEP out there. I work for the Epilepsy Foundation of Victoria and every year we loose many clients to SUDEP. It really bothers us that there isn't enough discussion about this really important topic. As a result we put together a book, a world first, with contributors from all over the world. You can find out more at our website. Keep up the good work.
It's not a mental illness and it doesn't involve psychiatrists? I don't think you know what you're talking about. It's about doctors witholding vital information.
i suspect that i have epilepsy, but i dont know and when i try to talk to my parents about it, they are skeptical....im also scared to go to a hospital to get tested....what do i do?
Unbelievable! One of my sons was diagnosed in1982 with grand mal seizures, and another of my sons in1996 with grand mal, petit mal and left temporal lobe, (both diagnosed at age 11), and until NOW, I never heard of SUDEP!! Something's wrong with this picture...!
Calabama1980 2 weeks ago
My cousin suffered from epilepsy and passed away 3 months ago i have a strong feeling it was SUDEP as she was only 21 and suffered from tonic-clonic seizures,she died in her sleep after having a seizure and the doctors had been changing her meds alot!! Neither her or her parents were warned about the risk of death in people suffering from epilepsy but her parents dont regret it at all as she was able to live her life to the full so i think maybe the dr's were right not to tell them
CollluvsFOB 2 years ago
my doctor feels that if a patient suddenly goes off their meds and has seizes, it could be one much more intense and extensive: Increasing the possible permanent [oxygen deprivation] damage and even the risk of death. of course this was a good way to keep me taking them as well and not think of slacking off. :-).
Badwsky 2 years ago
What can you do to reduce the ridk of death from this horror?
badger5079 2 years ago
Thorough informations are a neurologist DUTY.
It's fair that people know SUDEP by youtube or the web?
It's a judgment error to keep the truth from people with epilepsy and your family.
Andrea
TiuDindia 3 years ago
Grazie per questo video importante.
E' ora di smetterla di tenere nascoste le statistiche relative alle morti per epilessia.
Un cardiopatico è messo sull'avviso sui rischi che corre.
L'epilettico no.
Perchè?
Avendo una corretta informazione non si salverebbero tante vite?
Oppure non esiste una tecnologia sufficente per evitare simili disgrazie?
TiuAndria 3 years ago
500 every year hmm, you're more likely to die crossing the road.
And before anyone says "you don't know what it's like to have epilepsy" i do because i have it.
/rant
insomix 3 years ago
I COMPLETELY AGREE WITH YOU! Much more likely to die crossing the road.
I have epilepsy, and I asked my neurologist and neurosurgeon about it and they both said that nothing can be done to prevent it, they don't know what causes it, so there is little point in panicking about it.
vamp666babe 3 years ago
Exactly! Did you know on avg 3000 people die each year putting there trousers on.
If you wonna live in fear, you should worry about that!
Personally if i'm going to die, i'd like to die that way. =]
insomix 3 years ago
Wow, I am glad that I am not the only one who hops around whilst trying to put my trousers on... I have before fallen over. So, I am thankful I didn't die from that trouser exploit.
Personally, if I am going to die I would like it to involve lots and lots of chocolate. :)
vamp666babe 3 years ago
i agree, it happens but it's a small percentile. you can't live if you worry about something bad happening... alot of people die in car accidents too!
suzegothgrl 1 year ago
how sad, dr`s should have the responsibility to tell their patients, no one should find out about this after a loved one passes :(
ruhappytoseeme 3 years ago 3
Thats how we found out.. After my son passed away from this, it came out in the autopsy.... I was shocked.. Sad thing is, most doctors dont even know about this... Its sad when we the USA do not research this, but we research how many breaths someone might take to blow out a birthday candle.. WAKE UP AMERICA...
SAGEBRUSH55 2 years ago 2
Great awareness video!!
nyprincess10001 3 years ago 2
Thank you beckyuk2001 for your correct consideration about SUDEP awareness.
My nephew died two years ago on his sleep.
The autoptic report said he died for SUDEP.
He was 11 years old.
Thorough informations are a neurologist DUTY.
It's fair that people know SUDEP by youtube or the web?
It's a judgment error to keep the truth from people with epilepsy and your family.
Andrea
TiuAndria 3 years ago 3
My Specialist told me when I was diagnosed with Epilepsy about SUDEP his attitude about it not being anything to worry about annoyed me greatly! I am sure he would not think the same way if he had a risk of it. Twat! Thanks for adding this video, the public needs to be informed as much as possible.
beckyuk2001 3 years ago 2
Thank you for the video. I lost my daughter 2 years ago to SUDEP, she was 24.
lpeck59 3 years ago
Thank you for your work here.
my9pandas 3 years ago
No problem, trying our best to raise awareness of it. Thanks for the comment.
2redpens 3 years ago
I have been trying to work while trying to deal with epilepsy for 8 years. People do not speak of the devastation and the terror of the accompanying Auras. I had to turn back on my way to work many times hoping that I would get back home in time. Many times I did not make it. EMS nows my name by my face when I do not know mine. My disability claim has been rejected because "Claimant has a high level of education and experience": All worth zilch when one's face is smashed on the sidewalk.
Badwsky 3 years ago
My daughter was 18 when she died 3 years ago from SUDEP. I never heard of SUDEP until after her death. I woke up one morning only to find her dead in her bed. She did not aspirate nor suffocate. Her medication levels were theraputic. I was shocked beyond belief and continue to come to full terms with the loss of her. I asked her neurologist why he never talked to me about SUDEP. He asked me if that was something that I really wanted to know.I should of known about the possibilities.
daydreemer45 3 years ago
Thank you 2redpens!
You really been timely with this video.
Excellent information's and a great journalism performance.
You moved an iceberg!
In memory of Livio.
TiuAndria 3 years ago
i have had 3 seizures in the last 2 years whilst i was asleep. I haven't been diagnosed as an epileptic nor am i on treatment. I go to sleep every night shit scared as SUDEP is more common in nocturnal seizures. Should i go on treatment or not?
SamOAGooner 3 years ago
Sorry, I'm not sure what's best. Just say everything you just said in that comment to your doctor and he/she'll know exactly what to do. If you google SUDEP you will get alot sites on the subject.
Sorry, that's the best I can do.
2redpens 3 years ago
Thank you 2redpens.
Your video is really useful to educate who doesn't know enough about epilepsy.
TiuAndria 3 years ago
Epilepsy has been around for thousands of years. One way or another, the world knows about Epilepsy, already.
What's needed is not just plain simple awareness. What's needed is every day practical TREATMENT & SUPPORT system. After all, if the government can afford to finance Alcoholics & Narcotics Anonymous to baby sit drug & alcohol addicts, why wouldn't the government SUPPORT treating Epilepsy victims?
Shedding tears in dark shadows needs to be over.
ACTION SPEAKS LOUDER THAN WORDS.
MySeizures 3 years ago
MAY HIS SOUL REST IN PEACE!
Thank you for letting us express our agony & share your caring heart.
It's about time society recognizes the agony and devastating effects of Epilepsy as much as it recognizes stroke, cancer, diabetes, etc. After all, adversity is just adversity, one way or the other. Let's raise our voice and root for ourselves as much as rooting for others who can NOT stand for themselves. IT'S ABOUT TIME TO STAND UP & CHALLENGE THE CROOKED SYSTEM.
MySeizures 4 years ago
I went status for 7 hours I am told. This is real and scary
nyprincess10001 4 years ago
7 hours is very,very long time. I have never went status and i hope that i never will, but there is always possibility that i... Dont wanna even say it. Or write.
complexpartial74 4 years ago
My Mother thought she was going to lose me. I missed a few days of my life after that. I don't recall a thing. I hope no one EVER has to expiriance that, you wont recall it, but you loved ones in the room will.
nyprincess10001 4 years ago
My worst seizure was something about 10 minutes. It was actually my first1. I was about to go get wasted, just like any nineteen years old finn and suddenly I realized that I dont see like I should. It was extremely strange feeling. After that, everything went black. Next thing I remember was paramedics asking me stupid questions. And yeah, I forgot my bottle.I was "wasted" but not because of alcohol. It´s been 2,5 years since my last seizure now.
complexpartial74 4 years ago
That's good. Was it induced by getting wasted or did you have E already? Are you on AEDs for E? If so do you have emergency medication at home for family to use on you?
nyprincess10001 4 years ago
No. Not because of alcohol. I had serious head trauma when I was kid. I broke my skull etc. AED? Is that something Antiepileptic... Medication!?. Yeah. I´m eating carbamatsepine (Tegretol retard 400mg 1,5+1), + lamotrigine (Lamictal100mg 1*2). For emergency situations I have Stesolid (diazepam) for rectum, but I might change it to Epistatus (midazolam),If it´s ok for my neurologist.
I also ate Rivatril(clonazepam. Same as Klonopin at States)about 4 years but no more.
complexpartial74 4 years ago
I ment carbamazepine, karbamatsepiini in finnish so i misspelled it.
For some reason my english is getting worse and worse. Propably E has something to do with it . Or maybe this boy is getting old. Dunno.
complexpartial74 4 years ago
Ok yeah..I take Keppra 3000 mg daily, Klonopin 2 mg daily, Dilantin 300 mg daily and for emergency's...I have Diastat rectal valume...and I cant spell either...LOL
nyprincess10001 4 years ago
Angel Thank you for caring to write. I appreciate you sharing your experience with seizures with me and with the whole world. For many people who are coping, living and caring for victims of seizures, I understand my seizures video is very disturbing. We all can learn something from the miseries of seizures, which may help us face our vulnerability.
I hope you understand.
Thanks,
Gerrie
MySeizures 4 years ago
Just like you are witnessing the epileptic seizure on this video, I learned the hard way from my own family and friends, it's a life time haunting trauma and agony to see your loved ones being struck with seizures. Seizures destroy families. Too bad, there's NOT much that could be done to help the patient or the family. All that "help" advertised by "caring foundations and agencies" is nothing more than empty promises and bureaucratic circus. It's heart breaking, we are on our own. Good luck.
MySeizures 4 years ago
Have you ever thought or considered that Brain Surgery might cure or reduce your seizures? Did you ever asked your neurologist about Brain Surgery to cure your epilepsy? Check it out with your neurologist or any other sources of Brain surgery in curing Epilepsy and see if it helps. Frustrated of 10 years old seizures, medications and side effects, I'm demanding for Brain surgery, knowning that I've 70% chance to stop my seizures.
MySeizures 4 years ago 2
Brain surgery is rather a long task and id rather not like that chance of death and rehabilitation etc
BushisCocky 4 years ago
Good Luck!
MySeizures 4 years ago
Folks, I thought I was alone but thanks for your confirmation that our medications may be causing us to have HEART ARRHYTHMIA. I'm still getting VERY suspicious of my medications. Are they helping or hurting? Like you see on MySeizures videos, I'm wondering WHY I'm beating my chest so hard before I'm totally knocked out with seizures? It seems, I'm having CARDIAC ARRHYTHMIA- A DISTURBANCE IN THE HEART'S ELECTRICAL CONDITION. SEIZURES ON SEIZURES, is my medication causing my CARDIAC ARRHYTHMIA?
MySeizures 4 years ago
i have epilepsy also for almost 12 years now..and my neurologist found out i have arrhythmia then went to mitral valve prolapse and now a rheumatic heart disease..it's really hard coping with these kinds of 'illness'..but we have to try to live as normal people do..may we all recover from this..good luck to us all..hope and pray afterall, we're still in His Good Hands..take care
sweetdhey23 4 years ago
what are seizures triggered by??
stress or something?
hector62892 4 years ago
If you type what 'triggers seizures' to google search, the first 2 results are very good sources of information about epilepsy. I'd give you a link here but it won't let me type url.
2redpens 4 years ago
no. depression is triggered by stress. my seizures are triggered by sunlight and not getting enough sleep. i have epilepsy and depression. i would know.
TokyoMewMew303 4 years ago
Or daughter's greatest trigger actually is stress
my9pandas 3 years ago
hello there
j just wana be sure about myself,
i sometimes feel like im gona get a seizure but it doesnt come. it may come from a traumatism i had because i saw a cat who had one and it freaked me out
thx for help me, maybe its just me...
kiren77 4 years ago
You should go to your doctor and say exactly what you just said there ^
Just explain everything and he will help you.
2redpens 4 years ago
From all the cases I've read, it seems a lot of the people who had died had slowly come off their medication a few years earlier, thinking they'd grown out of it.
vkrippen 4 years ago
oh and if hes the dude in the videos, he was hot! how sad
mrsbrisby 4 years ago
dude i have epilepsy im not gonna die god! >=[
mrsbrisby 4 years ago
Yeah thats what we thought until my brother had a seizure in the shower and died at 25. This is serious, more than you realize
cherry351 4 years ago
Thanks for getting SUDEP out there. I work for the Epilepsy Foundation of Victoria and every year we loose many clients to SUDEP. It really bothers us that there isn't enough discussion about this really important topic. As a result we put together a book, a world first, with contributors from all over the world. You can find out more at our website. Keep up the good work.
jmaxwell27 4 years ago
Having seizures sucks. There's no elegant way to put it. I hate it. I hate it. I hate it.
obxbaby54 4 years ago
hey thats sad. mental illness is not funny. we should be grateful that there are psychiatrists who can control these people now.
merseygroup 4 years ago
it's not a mental illness
osp80 4 years ago
It's not a mental illness and it doesn't involve psychiatrists? I don't think you know what you're talking about. It's about doctors witholding vital information.
2redpens 4 years ago
its a medical disorder, not a mental disorder :)
SagitarianRicky 4 years ago
i have epilepsy, i hate it.. if u think u have it get meds or treatment asap...so this doesnt happen to u
crowgirl316 4 years ago
i suspect that i have epilepsy, but i dont know and when i try to talk to my parents about it, they are skeptical....im also scared to go to a hospital to get tested....what do i do?
epilepticXbabe 5 years ago
Hey I'm not sure ... I'd say definately go to your doctor... even if you don't tell your parents... why do you think you have epilepsy?
2redpens 5 years ago
why are you scared?
luxretia 4 years ago
Get TESTED. Its nothing to fool around with, you may be putting yourself in danger by not getting tested.
So, just take a deep breath make an appointment and go!
SagitarianRicky 4 years ago
Thank you so much for making this vid. My fiance died from SUDEP. everyone thinks that epilepsy is harmless. this depicts the truth
UrbanPixie 5 years ago
did he die in a STATUS EPILEPTICUS?
luxretia 4 years ago