My friend died during a seizure in his sleep just a few weeks ago. We need to spread more awareness about SUPED. I wish he had a smart watch or something… he did take medication to help. He’s so missed!
Was medicine generic? This is the most common brand doctors recommend. I take the expensive brand which has been responsible for controlling my seizures for years. The generic has been known to cause seizures rather than prevent them.
I just lost my 16 year old daughter June 25th 2021 to SUDEP. She was very healthy and happy and so driven and exited about her life. I'm completely devasted. I don't know how to live a life without my daughter in it. I'm just so broken 💔
I just lost my spouse during a seizure. We’d tried every medication deemed safe. At least we were aware of the possibility. It doesn’t help that people don’t understand this can happen.
So sorry for your loss 😔💔 I lost the love of my life last year due to a seizure in the middle of the night. He was taking a shower/bath and seized and drowned 😔😣😓
@@jessiematarazzo4947 I am so sorry for your lost. I can't even imagine the heartache you are going through. Your hopes and dreams were intertwined with him.💔 Please remember that he would want you happy and it is alright and good to make new dreams. Prayers for you both. God bless.
My 14 year old brother died from it, in his sleep , I was there at home , I carry so much guilt that I thought he’d be ok; such an innocent soul, he suffered so much his whole life , he stayed home all his life never get to enjoy , i miss him so very much
I am so sorry for your loss. I understand my brother too suffered. He went through such depression he couldn't hold a job because of the seizures. It took him when he was 26.
@@jkalb1744 awww, that's th tough. He suffered depression from not being able to be self-sufficient? I've suffered from that a lot. A single mom with seizures is not easily employed, a friend had to take in my daughter when she was a teenager because I couldn't afford to live. Things have gotten better over the years, but the guilt is constant. Don't let it eat you up as well. Be strong! ❤
I'm epileptic, and the first seizure I had was in my bed. 💜 👍 The good thing is, my mom came to get me up for school and saw me. 👎 The bad thing is, I was convulsing which made me fall on the floor, and break my collar bone.
Same thing happened to me! I had a seizure in my sleep for 8 to 18 hours according to my doctors and my dad finally found me. It was my first one and now both my kidneys have failed from the damage.
I was diagnosed with epilepsy 2 days ago. My last seizure (3 weeks ago) was during my sleep and I woke up in thr morning with my sidetable on the floor (heavy wood) and my head was red and hurting on the side and my eye turned black within a few days. I have been panicking at night thinking about falling asleep.
My 16 year old brother has just passed away from SUDEP. He was diagnosed with epilepsy a only a few months ago. This is has been extremely traumatic for our family and I want to learn everything I can about why this happens.
@@sageandcandle have all your doctors been neurologists? I wasn't getting any better, only worse after years of multiple neurologists, then I found out that what I needed was an actual specialist, not someone who studied sleep disorders or also had Parkinson's patients, I needed an elptologist(sp?) I live in a pretty big city and in the whole city there's just 2. It has changed my life and saved it, from 7 seizures a day to 1 a month at worst. I thought the neurologist was who you see, but no. Most don't really work that much with epileptics. I hope you find the help you need! ❤
As an epileptic myself and a volunteer for the epilepsy foundation its 1in 1000 controlled 1 in 150 uncontrolled so its not that rare and although usually its when ur asleep with grand mal it can happen to anyone at any time with or without a seizure being present. They're using his death to bring this forward probably because they know it should have been brought forward from the beginning and drs often refuse to
Sunday at 2am I had a seizure. I never ever experienced any so this was my first ,but thank God my family was there . I got the help I needed and they said it can happen again in the next 2 years. I’m afraid I might die from one . The pain my parents, siblings had to go through because of this first time was sad. I’m still scared 😱
I am too. I have grand mul siezures in my sleep when I'm dealing with stress and petites during the day and in my sleep. It is actually not a rare condition... it's very common. My maternal grandfather died from a siezure... just sleep safe and sleep on your side... I have my dog sleep on the side of me to prevent me falling off the bed. And let face fact, medicine doesnt help everyone.
I take meds, but I still have seizures. The difference is without them I can have up to 7 a day, on the meds it's down to once or twice a month and they're usually in bed...so much better. Stay strong, I know that it's scary 🥰✌
I take Trileptal and Lyrica, I was on Keppra as well but did the ketogenic diet for about one year which helped get me off of Keppra, I do have drug resistant epilepsy but seizures have reduced since being off Keppra
I never got tested but I had a seizure im my sleep this past Sunday, I was choking on my own vomit and not breathing. Good thing my roommate called the medics. I'm scared to sleep.
I’ve had epilepsy since infancy and my seizures have never been completely controlled regardless of treatment. I’ve tried virtually all of the antiepileptic drugs (AED’s) in existence in various combinations and doses as well as having VNS implantation yet I continue to have frequent seizures. I am not a candidate for epilepsy surgery as my seizures originate in both of my temporal lobes and I am only a candidate for right sided surgery. My battle continues and SUDEP is a very real possibility.
I personally had never heard anything about epilepsy so much. And after his unfortunately untimely death from a seizure, it was being talked about a lot. I have epilepsy, and it really isn't completely controlled by medication. Sometimes the medicine doesn't control it completely. I'm always afraid of if I may end up biting my tongue off or biting my tongue so bad that I bleed. And I do think that everyone should be more aware of it, and at least know a little about it on what to do if someone has a seizure and what to do to to help.
I agree and know you're fears. Just a little peace of mind, it's impossible to bite your tongue off, you can damage it, but unless you are missing the part under your tongue that holds it in place, you will always have a tongue. It may hurt and taste weird...but stay strong and keep teaching others about us. You may save your life or someone else's by dispersing knowledge.
@@taaprinachembu9536 that’s so sweet of you to ask. I’m doing a bit better now. The surgery did not help and I’m fixing to have another next summer, but I’m happy and enjoying my life as it is. Better make the best of it right? 😁✨❤️
@@epilepsyawareness2020 I'm so concerned that it didn't help☹️we don't know each other personally but I pay obeisance for your courage in dealing one of the toughest things in life .......After your coming surgery hits a success,God's going to give whatever he has in the store for you☺️💕I'll keep you in my prayers every single day, you're blessed♥️ Take care and continue to shine as always🙌
I have epileptic seizures I have had it since I was younger I'm 14 now I still have them and they have gotten worst R.I.P Cameron you will be missed i hope someone understands me I have to go to doctors and I have once had to go to a hospital because I have had a seizure and I had to have a iv in my arm
I'm sooo sorry, it's such a scary way to live. Do you go to a neurologist or an epileptologist(sp?). I thought a neurologist was what I needed, went to a lot and for years kept having seizures and side effects. I was told by a friend that there are actually neurologists who study nothing but seizures, and I finally found some good advice and some peace. The average neurologist studies sleep disorders, etc...they're not what epileptic people need.
I have had multiple in an entire day so I know what it is like. I been having tonic clinics for a good while frequently and recently. i been hospitalized twice in a years span with ivs in my arm and to keep my blood sugar regulated as well. It's scary
Oh ok☹️ What is your mom's age? My mom also had a seizure yesterday... But she was screaming and had a seizure... Her reports were normal eventhough she is having seizures.....
Maybe, there's no way of predicting a future that can't happen. Best not to blame or say what could have been, but share knowledge as to work on what can be accomplished next time. Hopefully this will help someone else get through this
My friend died during a seizure in his sleep just a few weeks ago. We need to spread more awareness about SUPED. I wish he had a smart watch or something… he did take medication to help. He’s so missed!
Did he bleed out or suffocate I've woken to a bloody pillow or hypoxia often.
Was medicine generic? This is the most common brand doctors recommend. I take the expensive brand which has been responsible for controlling my seizures for years. The generic has been known to cause seizures rather than prevent them.
I just lost my 16 year old daughter June 25th 2021 to SUDEP. She was very healthy and happy and so driven and exited about her life. I'm completely devasted. I don't know how to live a life without my daughter in it. I'm just so broken 💔
Sorry for the loss of a beautiful soul
And my brother he was only 15 passed away this january 18 ciuldnt believe it to all cause of epilepsy
@@eljorgepadilla-mga-550 I'm sorry
TELL THE TRUTH..those medications give EXTREME DEPRESSION
I just lost my spouse during a seizure. We’d tried every medication deemed safe. At least we were aware of the possibility. It doesn’t help that people don’t understand this can happen.
my brother died of this. I wouldn't wish this on my worst enemy.
So sorry for your loss 😔💔
I lost the love of my life last year due to a seizure in the middle of the night. He was taking a shower/bath and seized and drowned 😔😣😓
@@jessiematarazzo4947 I am so sorry for your lost. I can't even imagine the heartache you are going through. Your hopes and dreams were intertwined with him.💔 Please remember that he would want you happy and it is alright and good to make new dreams. Prayers for you both. God bless.
@@jkalb1744 thank you so much! 💜
my friend died from the last night and i just found out today .
@@addikittymeow6729 I am very sorry. ☹️💔💕
I love you cameron..
You didnt drink
You didnt get married
You didnt do drugs
You didnt deserve this...
I'm happy he didn't feel any pain when he died. It's still very hard to believe he passed on so soon
My 14 year old brother died from it, in his sleep , I was there at home , I carry so much guilt that I thought he’d be ok; such an innocent soul, he suffered so much his whole life , he stayed home all his life never get to enjoy , i miss him so very much
I am so sorry for your loss. I understand my brother too suffered. He went through such depression he couldn't hold a job because of the seizures. It took him when he was 26.
I'm sooo sorry! There was nothing for you to do, please don't feel bad...and know from me that at least at the moment he felt no pain. ❤❤
@@jkalb1744 awww, that's th tough. He suffered depression from not being able to be self-sufficient? I've suffered from that a lot. A single mom with seizures is not easily employed, a friend had to take in my daughter when she was a teenager because I couldn't afford to live. Things have gotten better over the years, but the guilt is constant. Don't let it eat you up as well. Be strong! ❤
My cousin at age 13 died from this....
I'm epileptic, and the first seizure I had was in my bed. 💜
👍 The good thing is, my mom came to get me up for school and saw me.
👎 The bad thing is, I was convulsing which made me fall on the floor, and break my collar bone.
That's tough. Sorry girl! :(
lily boone Bruh momento am I right?!
Same thing happened to me! I had a seizure in my sleep for 8 to 18 hours according to my doctors and my dad finally found me. It was my first one and now both my kidneys have failed from the damage.
@@MelancolieRen hope ur doing ok
I’m epileptic.I’m honestly so scared of sleeping sometimes bc I know this can happen
I totally understand this, I feel the exact same it’s terrifying I wish it didn’t exist. Stay strong 🖤
I was diagnosed with epilepsy 2 days ago. My last seizure (3 weeks ago) was during my sleep and I woke up in thr morning with my sidetable on the floor (heavy wood) and my head was red and hurting on the side and my eye turned black within a few days. I have been panicking at night thinking about falling asleep.
@@eu9234 🙏😲💕😭
My god me too it's terrifying to think about it awake at night all the time so I miss out on sleep
@@eu9234 I had a seizure in my sleep and I was lucky cause my aun't was right there I could've died
@@user-yf7es4gz3o I had the same thing, luckily I used to sleep with my brother in the same room and he heard me fall from my bed
My 16 year old brother has just passed away from SUDEP. He was diagnosed with epilepsy a only a few months ago. This is has been extremely traumatic for our family and I want to learn everything I can about why this happens.
Sorry for your losd
*loss
R.i.p Cameron Boyce! Have a great time in heaven miss ya
I have severe seizures. I stop breathing & my heart goes into arrythmia. I had to be revived by my friend using CPR. This is no joke.
So sorry!
Bro we need to stop you from Suffering From Seizure
I have seen 4 neurologists & a neurosurgeon. They have no more treatments for me. My autoimmune disorder makes me allergic to medications.
@@sageandcandle have all your doctors been neurologists? I wasn't getting any better, only worse after years of multiple neurologists, then I found out that what I needed was an actual specialist, not someone who studied sleep disorders or also had Parkinson's patients, I needed an elptologist(sp?) I live in a pretty big city and in the whole city there's just 2. It has changed my life and saved it, from 7 seizures a day to 1 a month at worst. I thought the neurologist was who you see, but no. Most don't really work that much with epileptics. I hope you find the help you need! ❤
Yes, neurologists.
I fear for this every night since most of my seizures are nocturnal
As an epileptic myself and a volunteer for the epilepsy foundation its 1in 1000 controlled 1 in 150 uncontrolled so its not that rare and although usually its when ur asleep with grand mal it can happen to anyone at any time with or without a seizure being present. They're using his death to bring this forward probably because they know it should have been brought forward from the beginning and drs often refuse to
It’s not that rare. It’s annoying people keep insisting it’s rare. This is why we need to spread awareness. This is also how Teena Marie died.
It’s been 5 years, it still hurts like hell💔
Sunday at 2am I had a seizure. I never ever experienced any so this was my first ,but thank God my family was there . I got the help I needed and they said it can happen again in the next 2 years. I’m afraid I might die from one . The pain my parents, siblings had to go through because of this first time was sad. I’m still scared 😱
Same thing has happened to me…. Had one in 2016, 2022, and can possibly have one again every time in my sleep…
I'm epileptic. This is so scary.
Lily, my son also
I am too. I have grand mul siezures in my sleep when I'm dealing with stress and petites during the day and in my sleep. It is actually not a rare condition... it's very common. My maternal grandfather died from a siezure... just sleep safe and sleep on your side... I have my dog sleep on the side of me to prevent me falling off the bed. And let face fact, medicine doesnt help everyone.
@@FuzziNutz2 wow plz take care dear..i hope ur doing better nw :(
Same, I have epilepsy.
This is one of the things that I had often thought of, if I'd die in my sleep from a seizure.
I'm epileptic. 💜🎗️
My. Heart was hearting. When. I. Heard. This
My daughter passed away in her sleep due to a seizure
I have epileptic seizures since I was a baby I'm 12 now and I'm scared I dont wanna die
Ask a Doctor if Brain Surgery is a possibility.
I had my Seizure Brain Tumor removed when I was 8.
Sleep seizures arent that rare and we need more convos about it.
I have epilepsy too there has been a few times I thought I would die I take medication but last week I had a seizure.
I take meds, but I still have seizures. The difference is without them I can have up to 7 a day, on the meds it's down to once or twice a month and they're usually in bed...so much better. Stay strong, I know that it's scary 🥰✌
I take Trileptal and Lyrica, I was on Keppra as well but did the ketogenic diet for about one year which helped get me off of Keppra, I do have drug resistant epilepsy but seizures have reduced since being off Keppra
The fact that it was preventable and still happened just sucks
WHY WOULD U GUYS PUT A THUMBS DOWN ON THE VIDEO
I never got tested but I had a seizure im my sleep this past Sunday, I was choking on my own vomit and not breathing. Good thing my roommate called the medics. I'm scared to sleep.
Now that's a scary way to die 😨😨😱😨😱😰
Has happened to me twice, it's horrifying, hope you're doing alright
I’ve had epilepsy since infancy and my seizures have never been completely controlled regardless of treatment. I’ve tried virtually all of the antiepileptic drugs (AED’s) in existence in various combinations and doses as well as having VNS implantation yet I continue to have frequent seizures. I am not a candidate for epilepsy surgery as my seizures originate in both of my temporal lobes and I am only a candidate for right sided surgery. My battle continues and SUDEP is a very real possibility.
That’s sad I had my Tumor surgically removed when I was a kid.
Is there any device to alert the family members during sleep epilipsy
I personally had never heard anything about epilepsy so much. And after his unfortunately untimely death from a seizure, it was being talked about a lot.
I have epilepsy, and it really isn't completely controlled by medication. Sometimes the medicine doesn't control it completely. I'm always afraid of if I may end up biting my tongue off or biting my tongue so bad that I bleed. And I do think that everyone should be more aware of it, and at least know a little about it on what to do if someone has a seizure and what to do to to help.
I have Epilepsy. 💜🎗️
I agree and know you're fears. Just a little peace of mind, it's impossible to bite your tongue off, you can damage it, but unless you are missing the part under your tongue that holds it in place, you will always have a tongue. It may hurt and taste weird...but stay strong and keep teaching others about us. You may save your life or someone else's by dispersing knowledge.
Is there a law against epilipsy existing
I just had my first brain surgery this is so scary
How are you now??
@@taaprinachembu9536 that’s so sweet of you to ask. I’m doing a bit better now. The surgery did not help and I’m fixing to have another next summer, but I’m happy and enjoying my life as it is. Better make the best of it right? 😁✨❤️
@@epilepsyawareness2020 I'm so concerned that it didn't help☹️we don't know each other personally but I pay obeisance for your courage in dealing one of the toughest things in life .......After your coming surgery hits a success,God's going to give whatever he has in the store for you☺️💕I'll keep you in my prayers every single day, you're blessed♥️ Take care and continue to shine as always🙌
Just subbed! Lots of love❤️❤️❤️
Can it happen to people who haven’t had a seizure in a very long time
I'm having seizures in my sleep with paralysis and suffocation problems.
I have epileptic seizures I have had it since I was younger I'm 14 now I still have them and they have gotten worst R.I.P Cameron you will be missed i hope someone understands me I have to go to doctors and I have once had to go to a hospital because I have had a seizure and I had to have a iv in my arm
I'm sooo sorry, it's such a scary way to live. Do you go to a neurologist or an epileptologist(sp?). I thought a neurologist was what I needed, went to a lot and for years kept having seizures and side effects. I was told by a friend that there are actually neurologists who study nothing but seizures, and I finally found some good advice and some peace. The average neurologist studies sleep disorders, etc...they're not what epileptic people need.
I have had multiple in an entire day so I know what it is like. I been having tonic clinics for a good while frequently and recently. i been hospitalized twice in a years span with ivs in my arm and to keep my blood sugar regulated as well. It's scary
I had 5 seizures in my sleep between each seizure I fell back asleep would have another like clusters
Rip
I have a rare epilepsy and I am at high risk on Sudep.
I had 6 in a day and I didn't die from this painless death 😡
I have them in my sleep
Look at the new statistics it’s higher then you think
I nearly died from my epileptic seziers.
Of course some seizures do not come under control with any medications! Unfortunately. 😣
I've been so lucky, the 2 times this has happened to me, my girlfriend was there to save my life
It’s a good thing for the real life spellbooks
My lost my mom from seizure on 24th April
I'm sorry to hear this...
Can you explain how she passed away?
@@lubena1438 due to massive seazure .. Seazure cannot stop
Oh ok☹️
What is your mom's age?
My mom also had a seizure yesterday...
But she was screaming and had a seizure...
Her reports were normal eventhough she is having seizures.....
@@lubena1438 my mom has a stage 4 lung cancer patient & also spread to brain.
She is 55 yrs old
So does this mean Cameron would have saved if they focused on the diesease
Yes
Maybe, there's no way of predicting a future that can't happen. Best not to blame or say what could have been, but share knowledge as to work on what can be accomplished next time. Hopefully this will help someone else get through this
He likley would have been fine if someone was there with him
SUDEP is not that rare. It’s 1 in 1000 people! Please talk about SUPED.
I have seizures
😢
I have only nocturnal epilepsy so this scares me. All my seizures have been in my sleep.
It’s on in 1,000 at least. That’s not very rare.