My First Update Video (Introduction)
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- Опубликовано: 12 окт 2024
- I’m sorry if this video is a bit unorganised
I’m just getting into it and my anxiety still playing tricks I’ll get used to it I’ll be uploading every monday and possibly thursday when i get on track let me know what you all think to these type of videos and any questions you have drop them in the comments and ill answer them in the next video 😋🙂
I hope you all like it and understand something new i suffer with temporal lobe epilepsy and I’m just putting them up as some support and awareness I’m trying to film at the right time to catch it on video. You’re not alone if anyone is going through this I’m only a message away 💜💜
#epilepsy #seizures #mentalhealthmatters
Hi Alfie my son has epilepsy hes 16 he’s has seizures of all types since he was 2 he has been on lamotrigine since he was 8 they worked for him for a while and he only had absences but as he got older and much taller etc he started having tonic clonics more often like you 4 or more a month he had another eeg and his epilepsy had progressed and although he hadn’t been photosensitive before he is now he’s on keppra and lamotrogine together he seems a bit settled at min and just for clarification for a comment you mentioned in this video I do not turn my son on his side until he has stopped jerkin as it can cause more damage also my 7 year old laughs at the faces he pulls and I don’t tell him off as it’s his way of coping watching his brother have a seizure I see your epilepsy is quite new if you have any questions or anything feel free to ask hope you get sorted soon love and tell ur mum from another mum she’s a warrior just like u ❤
This was your first video.. your intro video.. you did an excellent job.. and we loved you then..
Just watched and commented again.. on both your latest update.. and your latest truly heartbreaking grand mal seizure video.. the last two scenes in this one totally unforgettable..
Today is 11 April 2024.. your channel has and continues to help so many.. those suffering from epilepsy.. those in caregiver roles.. family and friends of all those who suffer.. including you, dear Alfie..💜
All of us praying a cure may be found.. new meds and treatments developed with more gentle side effects.. and more education and support provided to fight the ignorance and stigma surrounding this enigmatic illness..
So that what you say at the end of each update nay always be true.. that no one facing this will ever be alone.. and that each and every one will stay safe..
Thank you Alfie for your courage and strength.. May God Bless you and keep you safe.. and may you never ever feel you are alone.. because you will never be.. all of us are here.. for you🙏💜💙
Alfie.. how anyone watching this could ever hate on you.. this is beyond our comprehension..
We have been following you and been subscribed to both your channels since they started pretty much..
You are a caring man who is courageous and strong.. you have earned our respect and Won our hearts forever..
You have our prayers and our hope for better days ahead.. we would hug you if we could.. sending you virtual hugs..
Stay strong dear lad.. stay safe as well..
Your update video is grand.. you have our support and our love forever 💜💙🙏🤗
Thank you for making this channel…
Thank you for sharing your life..
We love you …
We appreciate you..
We are here for you as well..
We cannot thank you enough for caring about us..
Remember we care about you too, Alfie…
We love you💜💙xxx
Alfie .. your intro video came up following your lastest music.. which we love.. so we watched this again..
This is the most helpful video we have ever seen on epilepsy.. means the world to us just to sit here and listen.. you are so honest.. this is as if we were sitting there with you whilst you talk.. helps more than we can find the words to say..
Thank you for making this channel..💜
Thank you for your courage and strength being filmed..💜
Thank you for sharing this horrific part of your life with us.. we appreciate you more than we can even say..💜
You are courageous and resilient and strong beyond anyone we have heard or read about..💜
Please know you are not alone either.. we are here for you too.. you have a whole world of us watching you.. praying for you.. thinking of you.. caring about you.. loving you..💜
Please stay strong.. and keep going Alfie.. no one understands like we do.. we are in that boat with you..and we cannot help crying with you😭💜
Always remember we are here.. and we love you with all that is in us💜💙
Alfie your braveness is an inspiration. Ever since I saw your story I was touched moved to tears
One of my long-time friends had epilepsy. I admire your boldness. Keep inspiring others to tell their stories. I truly hope they can give you some meds that actually work. Or at least cut down the seizures. I'm praying for you Alfie. God loves you man.
Thank God we do we found your channel.. and we found you..
Thank you for sharing your life and your suffering with epilepsy.. you are appreciated and loved more than words can say..
We are newly subscribed to your channel.. we want to thank you and encourage you in your battle with this wretched affliction..
We also subscribed to your beautiful music channel as well..
You are not alone either Alfie.. we are here for you..
Please stay strong.. know it’s hard.. we are praying for you each day..
We send you hugs and love.. God Bless you mate🙏🤗🌹
Jen999💜💙
Thank you for sharing your journey with us, Alfie. Looking forward to the content! All the best mate!
Thank you so much for the support it means the world the content is going to keep coming 🙂💜
Looking forward for your recovery . Keep praying. Godbless you
My dog has had 3 seizures so far, the vets are not sure if he has epilepsy yet or PNES
But it is very scary and distressing so I can only imagine how it must be for you and your mom :(
I've been watching lots of videos to educate myself and find something that might help
Thank you for sharing your story with us Alfie, sending you lots of love and support, wishing that you will find a useful treatment and be seizure free 🙏🏻
Hi Alfie
My name’s Arfon i’m 60 yrs of age. Been experiencing seizures for 5 yrs if not longer
and still trying to come to terms with it.
I just wanted to say thank you for sharing your experiences & video’s.
You’ve helped me loads by knowing i’m not alone
Cheers
Arfon
Yo Alfie, my names Will, I’m 21 years old and live in London. I’ve been having tonic clonic seizures quite frequently since about 2015. Been through a lot of medications (including levetiracetam) and have seen decent improvement recently after trying my 6th medication (lacosamide). I seriously can’t relate to/respect this channel more than I already do, your auras and seizures seem to be almost exactly the same as mine. I discovered your channel recently after waking up from another seizure and just started looking for something to help me feel less lonesome etc. I have woken up from some seriously nasty seizures in the past. I just want you to know that you should keep going with this channel, it could help a lot of people with our condition. If you want to talk to me and hear more about what I’ve also been through with epilepsy please don’t hesitate to contact me.
What’s your email we can talk more through that I’m always here too that’s why I made this channel to help other in the same situation thank you so much for the support and I look forward to hearing from you 💜💜
@@alfiesepilepsychannel Yh man I’ll send u a quick email now I just found your email addresses on the channel.
Looking forward to your videos too. Sharing these painful experiences and having more people to talk to about them is sure to take some of the load off your back. Stay strong, Alfie!
Hope you feel better Alfie,I am praying hard for you...I hole you feel better.I know it’s hard for you and you need help..I just hope everything is fine ..hope you feel better Alfie love you ❤
❤️ ♥️♥️♥️♥️
Hello Alfie I hope you have nice weekend I hope your doing okay still looking forward to watching your next video there no rush so do not worry I know your getting used to it you did brilliant on your first video from Kerrie 💜💜
My dear Alfie...you are such a great person ❤and I just subscribed to your channel even though I don't have epilepsy. Nevertheless, I am very interested in your fate. I subscribed to Angelique from myJourneytoBeseizurefree and that's how I found your channel. Since stress seems to be your main trigger, I'm wondering if meditation would help you? Drugs don't seem to be working well for you. I would like to tell you that I think it's great and courageous of you to share your experiences with us here. Of course, this is not easy, because in this state you are completely helpless and vulnerable. I wish you the very best and may you find a method to help you manage your seizures. Lots of love from Germany.🥰
Looking forward to ur new content. Ur a lovely lad and thanks for being so open an can learn alot from ur info. Hope u and ur mum well 💓
Thank you so much for the support and it’s okay I hope you learnt something from it if you have any questions or want to know something drop it in the comments and I’ll be sure to answer them all in next video and thank you so much not doing too bad hope you doing okay 💜💜
@@alfiesepilepsychannel thanks for your reply. I do have some questions but don't want them out to read. If u get what I mean. Take care Alfie ❤
@@mumzyleezasmr7123 you can email me my email is in my description of the channel 💜
Iv tried to email u ? not sure why its not sending 😕 xxxx
I wonder if they might be able to put you forward for VNS surgery?
I’m glad they managed to give you a quick diagnosis I am still waiting for a form diagnosis
God bless you with complete healing
Mrn Alfie the first vlog I watch I whas crying son i will pray for u God will heal u trust in him
Alfie ur an inspiration 2 many. I have seizures as well i was diagnosed wit NEAD even tho ma eeg cam bak abnormal. I get a heated risin feelin in ma chest mainly or a drunk dizy feelin aura before ma seizures start. I always try 2 fite them off as long as possible till i get 2 ma safe place or even a shop were pple no & no abt ma seizures. Ma seizures started due 2 bein bullyed in college constantly 4 7 years by som1 who was ment 2 be ma frend.
Hi Alfie where do you live and who is your Neurologist. You sound as if you maybe from Manchester. I am on Keppra and Epilim. Clobazam is something I was given but it has side effects and is so difficult to come off so I didn’t start on it and I explained to the Neurologist. There are not many young people who share their seizures so I am glad you are.
Hey sorry it’s been long to reply I get a lot of comments and I’m from Manchester originally and I was on 400mg Lamotrigine and 10mg clobazam when I got the aura they changed my meds to 400mg and 1000mg keppra pretty much straight after the last seizure and I can tell you I’m feeling the mood swings really bad but gotta fight through it would rather have this than fits and thank you for your support and that’s why I do these videos to help people in the same situation feel like them feelings that you can’t describe and to feel not alone I hope you are or become seizure free💜💜
I do think anything wrong putting videos on Alfie off your siezures do not listen to rude people am sure other people does it and am so proud you want to to help others and your incredible you really are you are so nice just keep being yourself from Kerrie 👍💜💜💜💜💜💜💜💜💜💜
Do you have tried keto diet? And sweetie you look so good a seizure free video is always good to see ❤️ thank you for the update big hug to you from the Netherlands
Un abrazo Alfie y otro para tu mamá ❤
Thank you for telling us what it is like for you. Being that your body goes through so much, you must be quite tired afterwards? I wish you a very healthy week. Much love.. watching from USA 🇺🇸 New York
No problem hope you enjoyed and learnt something from it I’ll be going over the after effects etc in the next video🙂💜
That must be hard living with seizures, always here Alfie 🥰
Los medicos muchas veces subestiman al paciente (no todos), eso te da impotencia te sientes como en una trampa.
Yo no pude dejar de llorar mi hijo se me fue el 2009 y aun me duele el alma
Absolute Amazing Alfie just finished watching you was incredible love it can not wait to watch your next video thankyou so much I know you might been a little nervous you did brilliant from Kerrie 💜💜💜💜💜
I lost both my parents Alfie I lost my Dad in 2012 then I lost my mum in 2021 my mum was diabetic and she was having trouble with walking I think was her hip she was supposed have a operation put that went out the window cause COVID then I got told buy my Auntie my mum had cancer I miss both my parents so much.Alfie your Amazing talking about your siezures so proud of you did fantastic from Kerrie 😘👍💜
Thanks so much glad you enjoyed it more videos on the way any questions feel free to ask me 💜
@@alfiesepilepsychannel thankyou Alfie 💜👍😘
@@alfiesepilepsychannel what is aura Alfie is it when siezure coming on 💜
The aura is the “warning” feeling you get before a seizure you get a weird sort of feeling 💜
This video was informative and awesome Alfie. Also you will get more comfortable the more you do this. I think you should tell people not only about your siezures but more about yourself and your mom and yourgirlfriend . I know you are more than your epilepsy. In a lot of the comments I can tell your an amazing kind young man. Also brother never lose hope. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
- Isaiah 40:29
No Matter the situation just stay positive never lose faith never lose hope.
I know we have never met but love you as a friend and brother. We have spoken a little bit on messenger however I have not been able to send you a message on Facebook messenger lately
800mg (4× 200mg) Carbamazepine. stopped mine by from almost everyday to 1 light convulsion every 2 months. The ones I have are around the times I am stressed. Stress is a major factor, like you said
Your such a handsome man, i hope you find a way to ease your pain. Sending love from the usa 🇺🇸
Alfie I understand what you are going through my mother had fits😊
Un gran abrazo y muchas energías para ti...desde chile 🇨🇱 con amor
Saludos Campeon. Bendiciones
Hey Alfi. ❤My Boyfriend is having Epilepsie too. I will say you are not alone with Epilepsie.
Hamdoulah 🤲
I’ve had seizures for about a year now. Was wondering how long you’ve had yours?
Since February 2019
Saludos de Argentina.
Mi pregunta es... siempre que tienes convulsiones deben llevarte al hospital?
If it’s a long one that last for over 5 minutes or if I have more than one
E meu irmão..essas convulsões não são fáceis né minha saudosa mãezinha tinha é eu ficava triste quando ela sofria dando convulsões 😢 eu tenho fé em Deus que vc seja curado viu ..
Lovely One!! Always!! Hugs !! Anu Suomi Finland ♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡
Thank you Alfie...
How old are you by the way?
You watch Angelique from myjourneytobeseizurefree?
Gracias y bendiciones 🙏
❤❤❤❤❤❤🙏🇩🇿
Hi ! Alfie
Can I just say how handsome you are ❤️❤️ the more I watched the more I wanted to jump through camera and......... 🤣❤️❤️❤️❤️❤️❤️
Hehe thank you so much 💜💜💜
Que vc melhore
Male medicine le prendi contro l'epilessia?..un abbraccio da ITALIA❤
I did not expect you to sound this handsome..
Have u read about corpus callosotomy surgery ?
How expensive is it to have seizure medication
Hello, nice to meet you. My name is Renetta Reno
Lieber junger Mann, 🙏 bete zu Jesus Christus dem Sohn Gottes, Er allein kann Dir helfen!
Die Ärzte sind da machtlos!
Jesus Christus tut aber auch heute noch Wunder wenn sie an ihn glauben und Ihm nachfolgen!
Ich bete für Sie und wünsche Gottes Segen!
Must be scary having those
you are a handsome boy you just need a girl to understand you. To love you as you are.
Afile your cute from paula
Te han dicho si tienes cura, o tienes tratamiento de por vida
اتمنى لك الشفاء العاجل
hello
maybe your dose is not enought ask your nurology
I’ve been asking for a while I was on max dosage for months and still nothing changed I’m trying to find the right meds still 💜
@@alfiesepilepsychannel I wonder if Rick Simpson oil would help you.. healing hugs and prayers sent your way!! 🙏🕊️