My worst tonic clonic seizure yet (27/09/24)
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- Опубликовано: 12 окт 2024
- I suffer with temporal lobe epilepsy and I’m just putting them up as some support and awareness 💜💜
Any questions just leave them in the comments and I’ll get to them in the next update video. Can’t thank you all enough for the support it means the world 💜💜
#epilepsy #mentalhealthmatters #seizures
To everyone who is showing support and prayers for this brave courageous enduring and kind young man. Thank you all i know the support means a lot to him. Me and Alfie have had some exchanges on here and i can by his responses he is a kind polite humble and awesome young man.
And so worthy of the support Alfie is!💜💜
And thank you for your beautiful words!
We are all praying hard as we can for Alfie.. that he will get better.. he is and will always be our hero.. helps us all to keep fighting.. to keep hoping.. to keep going.. we send him our prayers and our love.. sure we wish we could hug him💜💜
William and Jen
and our Lads
💜💙🧡💚 💜
A note of appreciation for you Alfie.. for having the courage to make these deeply personal videos.. and put them out there for us..
A brave and resilient warrior you are.. as those who know this suffering.. we realize the physical and emotional toll this takes on you.. we wish only to be there to show you we care💜💜
You are our hero Alfie.. thank you for being there for us.. when we feel alone..
Knowing you are there.. and you care.. means the world..
We love you Alfie 💜💜
William and Jen
💜💙🌱🌹🙏
My heart goes out to you. You’re really brave and strong, never forget that.
Dearest Alfie.. watching this is breaking our hearts..
On a run when these two came.. we have no words.. only tears..
You are so dear to us.. you fight so hard.. with everything you’ve got..
Would give anything if we could just hold you for a little while.. to comfort you.. to let you know how much you are loved.. how much you matter..
We can see how much these awful seizures take out of you.. and we know how it feels..
And your sweet Mum .. we know how this hurts her to watch you suffer.. William was where you are .. suffering this agony..
And I.. like your Mum.. did my best to help him get thru it.. as she does for you..
Every one watching this.. be they the one who suffers., or the one who cares.. knows and shares your pain.. and heartbreak too..
We love you both so much.. we are here for you.. sending you our prayers and hugs.. and our love..
Always our hero you are Alfie..
Always our respect.. our support.. and our love you have..🙏🤗💜
Always you have friends in us who will never leave you.. and will love you beyond time💜
William and Jen
💜💙🌱🌹✨
I just saw this video. It makes me sad that he has this condition. Sending prayers his way. Hope he feels better after his seizures. Prayers and positive vibes.❤❤❤
Thank you ever so much for your kind words and your prayers.. so much appreciated they are.. epilepsy is a sad lonely and painful road to walk.. as all of those afflicted know too well.. to know there are those like you you care brightens that road .. God Bless you for caring.. 🙏💜
From his friends
William and Jen
💜💙🌱🌹🦋
Alfie.. whenever we run we think of you.. 💜
However you are.. whatever you do.. our hearts are there too💜💙 💜
In life some we meet.. we cannot imagine being in this awful world without them..💜
Alfie.. you are one of these precious few💜
Please continue making your beautiful music, dear friend💜
Please continue your awesome fight against this ruthless foe, beautiful warrior💜💜
This world we live in is hard.. the paths we must walk treacherous and steep 💔🖤
Our way is made better.. because you are here too💜
Our life is made brighter.. because of knowing you 💜
Thank you for sharing your life with us Alfie.. thank you for caring💜💜
We love you💜
Slan mo charaid
William and Jen
💜💙🌱🌹✨
Thank you for sharing this with us. I know it's very difficult for you to live with it. I'm rooting for you in every difficult moment that's happened to you.♥
Salute your courage and strength, we do..
We thank you with our tears.. send you our prayers and our love 💜💜
William & Jen💜💙✨
this is so painful to watch, hurts my heart, ur stronger than you know hope u feel better and get through it, lots of love❤
Brother it hurts to see you like this, may you be healed one day and hope you have a long, healthy and prosperous life 🙏
It breaks my heart watching this.
You will be okay Alfie, hang in there 🙏🏻
One of your worst seizures ever, this is.. for us who went thru this.. breaks our hearts to watch..💔💔💜
Because we feel the pain.. we taste the fear.. we remember the shifting sands of uncertainty you must walk upon.. about when the next one will come..
These videos have brought you close to us.. especially us who suffer from same..💜
Even as you lie there unaware as the seizure progressed.. we know how hard you are fighting it..💜
And when it is over.. there is an expression on your face as you sleep.. of the utmost courage and strength..
You have won this battle.. and determined you are to fight again and again.. until you win the war💜
You have the support.. and the prayers..
You have the hope.. and the love..
Of all of us on this channel.. who love you and want you to win.. with all our hearts💜💜
Many people describe a hero as someone who is strong or brave or courageous.. yet there is more than that..
A true hero is someone who selflessly acts for the good of others .. which is what you do.. making this channel.. putting your videos out there.. telling others they are not alone.. that you are there for them..💜💜
That’s what a hero is Alfie.. and you.. are ours.. our hero..
We love you 💜
William and Jen
💜💙🌱🌹✨
Praying for you brother, hugs to you enduring young man. This was a really bad one and the worst one you have had in a while. I hope you recover well bro. Alfie stay positive and hang in there awesome friendly young man
Oh my God, his seizures have returned. Oh my God, protect Alfie. I hope his seizures will be cured.
We think of you each day Alfie.. and we are amazed at how well you handle dealing with epilepsy 💜
My husband William suffered from this from premature birth.. which the neurologist said triggered his nocturnal tonic clonic epilepsy.. which was also resistant to meds and seizures ran over 5 minutes and in clusters..
We were often asked the question.. is it easier to deal with epilepsy if you develop it as a child.. a teen.. or older?
From our experience we would have to say.. no matter what age you get it.. epilepsy is hell..😭💔🖤
That said.. since William had always had epilepsy.. he was used to it., knew what to do.. pretty much what to expect.. it was dreadfully hard to grow up with this.. and finding me.. who loved him dearly and accepted him as he was.. and wanted to fight this with him.. made a huge difference in his life..💜💙🦋
Even so.. having talked to many children and young teens.. upon whom epilepsy hits like a lightening strike out of a clear blue sky.. we think this is far, far worse than being born with it..
Because their life changes completely.. without warning.. and they face fear they cannot understand.. and worse.. there is no one to talk to about it.. and they feel so alone and scared..😭💔
Just the way it happened to you.. and that is why we admire you and are so grateful to you..
That you cared about others who suffered that awful pain and fear.. so you did something about it..💜💜
You set up this channel.. you put videos of your own suffering out there.. so others would not feel alone..
What you did.. and what you continue to do.. means the world Alfie.. there are no words to thank you enough..
Each time we watch your heartbreaking seizure videos.. each time we watch your courageous updates.. there are so many facing this for the first time.. who are helped..💜💜
And there are also grateful parents and caregivers and friends.. who watch someone else going thru what their own loved one is suffering.. and THEY feel better knowing they are not alone either 💜
What you do matters Alfie.. to all who watch..
And that is the reason we call you our hero.. because you are 💜💜💜
We love you Alfie 💜💜
William and Jen
💜💙🌱🌹🙏
Get well soon, hope one day you will be seizure free, praying for you.❤️
Any updates awesome kind enduring polite positive amazing young man. Alfie i pray your recovering well buddy
Will be doing an update video this week sometime explaining more of how I am and thank you for your support 💜💜
@@alfiesepilepsychannel
We are so thankful you got thru this last one.. we appreciate your updates Alfie.. wish there was more we could do to help.. we love you and want for you freedom from these awful seizures.. we send you hope and love 💜💜
William and Jen
@@alfiesepilepsychannel no problem awesome kind amazing friendly enduring young man Alfie.
I love you Alfie ❤
Hi alfie, another alfie here. I also suffer with grand mal seizures with focal too. How's the recovery going? Have neuro given any info on what/why?
Hope you are OK though. 💜
I’m sorry honey😞 my friend had a petit grand mal seizure Wednesday
Praying for you ❤ lots of love, your not alone, I'm here for you, sorry to hear that. 😞❤
I Hope You Feel Better Seizures Are Painful Sometimes 💟💟💟💟❣❣❣❣💜💜💜💜
Hi Alfie, thank you for sharing this, I have a question and you don’t have to answer it, I work with people with epilepsy every day and they have buccol, if you have this what’s your time frame with your seizures where it has to administered? As I’ve noticed you she’s quite severe and long seizures, sending all my love🤍
@@jessmerritt9420
We saw your comment and have some experience with this.. so we are offering this to explain what it is to some who might not know..
Basically buccal refers to the thin membrane area between the gums and cheek.. the medicine is squeezed in there and absorbed.. if it is swallowed it might not act as fast.. there is a rescue med called midazolam that is given this way in hospital to stop seizures.. it works in about 10 minutes and used primarily with children.. it is sedating and can interfere with breathing..
And that can be a problem for a person with breathing difficulties..
My husband suffered severe nocturnal tonic clonic seizures.. because his heart and lungs were badly weakened by premature birth he could not be given any meds that would affect his breathing.. that is how we know about buccal meds..
Hope this helps a bit.. first time we’ve heard about buccal since we’ve been on the channel.. we wish you well and send you prayers for the patients you care for 💜🙏🕊️
William and Jen💜💙
Another one? i'm sorry Alfie... :(
This has got to be perhaps the worst seizure of yours that has been recorded. It must have been awful to go through this seizure. I hope that you can eventually get the seizures under control.
I wish I can get inside my phone screen and help you.😢
@@jamvillanueva6507
You are not alone.. we are all wishing we could somehow be there to comfort Alfie and his Mum.. our hearts break watching.. all we want is to help somehow.. and your idea sounds good to us.. we send Alfie prayers and hope.. and unlimited virtual hugs we wish were real.. and we send him our love always and ever💜💜
William and Jen💜💙
it is very hard to watch and you lose lot of weight and fatigue and mother need be careful and ensure he is safe place like that wide seat sofa is perfect for him to secure zone
🫂
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Devi fare la respirazione diaframmatica
Hello.. this thoughtful comment was addressed in the previous video on focal seizure above.. and was much appreciated.. thank you!💜
William and Jen
Turn him to his side
As you can see from the video.. Alfie’s Mum.. who is filming this for him.. has made him comfortable as possible..
Alfie is in a safe spot so he will not fall.. he has the soft couch cushion behind him.. and another pillow strategically placed.. both to protect his head and for comfort..
He is covered with a warm blanket to ward off the cold feelings that follow the seizure.. and dressed appropriately in shorts and a light shirt.. as there is a lot of heat and sweating during the seizure..
All this his Mum did to prepare for the seizure and protect him during it.. she is doing an excellent job..
Unless you have dealt with epilepsy in one you dearly love.. you have no idea how extremely difficult this is for her.. she is to be commended..
As for Alfie.. he is a strong and courageous lad.. a true warrior.. he fights every time hard as he can.. and this seizure he just went thru was an extraordinarily severe one..
How do I know? My beautiful and courageous husband suffered exactly as you just saw in Alfie’s video.. and as his wife and caregiver.. I relate totally with Alfie’s Mum..
Epilepsy involves the entire family.. we all work together to help those we love..
Thank you for your concern.. and rest assured Alfie is in the best possible hands he could be.. his Mum’s 💜
William and Jen
💜💙🌱🌹🙏
Isn’t alfie on epilepsy medication 😢
Yes.. Alfie has listed his meds in his updates..
Sad truth is many times meds do not work.. or help s bit but cannot stop the seizures..
Epilepsy is a lifetime battle.. there is no absolute cause and no cure as yet.. although many dedicate their lives to finding one..
Alfie is amazingly strong and courageous.. this is what all those who suffer must be..
This channel is the result of Alfie’s desire to help others afflicted with epilepsy.. as well as their families and friends..
Alfie is brave and resilient.. and for those of us who support him and his channel.. Alfie is our hero..
Because of this brave and kind young man.. none of us have to feel alone.. he is always there.. 💜💜💜
William and Jen
💜💙🌱🌹🙏
@@Jen999 I myself have epilepsy grand mal seizures aka tonic clinic seizure I have a device called a vns stimulator I been seizure free for 7 years now thanks to the little device and the medication I take keppra and lacosamide aka vimpat ive been seizure free I hope alfie becomes seizure free because he is a good man and it hurts me seeing him like this because I can feel the pain when I see him in your video convulsing😔
@@LuisRamirez-xn4ck
We so agree with you Luis.. and are thankful the VNS works well for you.. it has benefited many..
My husband William suffered from nocturnal tonic clonic seizures.. his epilepsy was thought to be from his premature birth at 7 months which seriously weakened his heart and lungs..
Unfortunately the vagus nerve controls heart function on the left.. and this device would be ruled out in patients with cardiac problems.. but for those who can get it.. the device is lifesaving..
We are praying better meds will be found for Alfie and other sufferers.. the videos are heartbreaking and we cry for him.. 💔😭💜
Alfie is courageous and strong.. and incredibly kind.. and as you say.. it is horrible he has to go thru this..
Thank you for your kind reply.. we are so happy you are seizure free.. and we are praying hard soon Alfie will be also..
We send you prayers and hugs.. as well as love 🙏🤗💖
Jen and William💜💙