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How epilepsy changed my life
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- เผยแพร่เมื่อ 23 มี.ค. 2022
- Check out this video of Derrick sharing his experiences of living with epilepsy
Share this video to help start a conversation around epilepsy this #purpleday.
Find out more about purple day at www.epilepsy.o...
I've literally just gotten home from hospital after 9 seizures. Just knowing I'm not alone helps so much! I hope life is going well for you now man!
Did you try a ketogenic diet?
never give up bro!
i’ll be praying
I have epilepsy but with no seizure for example I am walking down the street I get epilepsy sometimes I keep walking sometimes I stop and I just look u know that feeling when u look at only one direction the same position for few seconds then Voila back to life again what's mesmerizing is that it also happens to me when I am talking to people I close my mouth and don t talk but when I get back I remember the exact subject of the conversation then the person asks hello ?? Are u okay?? What's wrong and then I say nothing nor my grandparents nor my cousin and uncle know it is only my small family some of my teachers kind know some don't or just don't care about the situation I pass different exams then my classmates it is always a struggle even if u want to glow up the medication is alot for me like I have to take 2pils morning/night every fu*ing day it is tiring but then again ill get use to it
God bless you sweetheart we all love you ❤.
Also just want to let you know you're not alone. I was diagnosed with epilepsy at 16 and things have never been the same. I've been fighting this battle ever since.. I'm tired. I'm lost. I'm paying for better days for us all.
Don't give up.😊 Frm Malaysia.
dont give up, haitian-american born🧡
Have seizure disorder related to a stroke a few years ago. Here in the USA I am on disability. Education is key in mitigating such a struggle.
Stay strong! I’m here for you!
I have it but hasnt been approved by Disability by the State yet ,was there a battle being confirmed for Disability, do you work still ,im aware you can work and still be on Disability @dougfredricks2017
What you said about the anxiety and wondering if it’s the mind playing tricks on us or is the seizure gonna happen….you really never get used to it…but we stay strong my brother. We are the turtle, not the shell. But we pretected by god ❤️
Yeah that’s how’s I’ve been in school I’ve come to realize I have anxiety walking in the halls,feeling like I’m gonna have one right in the hallway🙁
From my experience with epilepsy , it feels like doors are being closed on me in life.
It's not ❤
Do you drive with epilepsy and where do you live I have epilepsy with two kids one 5 and 6 year old been having epilepsy since 7 years old I don’t drive
@@thesilllypotato It is
@@Marius737 for who?
@@hauntedd8841 y
I've had seizures since I was 10 or 11, just turned 24, I remember waking up in a ambulance and wondering why I was in there. Things really changed in my life. I had to stop playing sports or other hobbies, my friends and family started to treat me differently (not in a bad way). I try to continue life, be positive, don't let my seizures hold me back from my dreams in life.
yeah man everyone's gonna die eventually so why worry...
I got tonic clonic too and my triggers are anxiety and lack of sleep
@@ostrichcum9369 are you still having tonic clonic seizures?
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
After having multiple TIA (mini strokes ) in 2023 December 2023 I had my first seizure. I'm documenting my life since. I'm 27 now and never saw my life like this but thankful for everyday and my family helps keep me mentally healthy while my physical body goes through so many changes. I hope my journey gives someone comfort peace.
i was diagnosed with epilepsy a little over a year ago, and had my first seizure about two years ago. i am watching this video because i started feeling my aura and needed to try to calm me down, this video was amazing and made me feel so valid and seen. thank you so much. 💜
Did they prescribe you keepra?
I feel like I was just diagnosed with it
@@romie7054keppra sucks
How the aura?
Aura is such a good way to describe it, at work I occasionally walk into a back office to calm myself down when they come on
It is like a death: shock, loss, denial & finally acceptance.
I don't want to sit around thinking my life is through.
Sometimes I do though.
Bro, this is the best video I've seen about epilepsy! I'm 47 yo and started having seizures about 6 years ago! Ive experienced everything you've said and now I know I'm not alone in this fight! Keep focusing on your talent! God bless you my brother, you and I will be healed! 🙏🙏🙏
What caused it?
Do you drive I have epilepsy too since 6 or 7
Thanks for sharing. I got my first seizure at 25 years old. I was shocked and mad. Why me, why now, what have I done. The first stuff I started to learn and hear sounded like walls or things stopping my life. That changed with time and so did my feeling. It's been 3 years and I've gotten alot better. I have seizures in my sleep only but I'm still always nervous about it. We're in this together guys 💪
Seizures are nasty
Dude we are nearly the same, I started getting them at 24 and only have em in my sleep which yeah as u know can be really dangerous. I just had one last night and its good to see im not the only one like that, I have no clue what triggered the epilepsy tho or what causes it or when it will start
@CaR1235100 They're absolutely terrifying, aren't they...I wake up then can't breathe and my body starts to tense up and the noise that comes out of me is demonic... I'm wiped out for weeks... They really really disturb my mind and well-being.
@CaR1235100 Space weather activity can trigger it...Solar flares etc...
I've just been diagnosed with epilepsy after two seizures. A lot of what you said Derrick, particularly, about being afraid to go out resonates with me. What I am processing about my diagnosis is an emotional rollercoaster. I loved your comment about a cleaner making a difference, total respect for that brother.
If you think it would help we have a guide for the newly diagnosed on our website.
You can find it here: www.epilepsy.org.uk/info/newly-diagnosed
Thank you so much for this video. Makes me feel like I'm not alone, I actually sobbed watching because I could relate so much. I have a brain cavernoma which was diagnosed back in SEPT 2017 after a week of right hand twitches which became more frequent then spread to my right leg the night I had my one and only (known) tonic clonic seizure. My world turned upside down in the months after, the unpredictability of this condition, the side effects I experienced from all the different meds they trialled me on, being a mother and trying to hold down a job to help support my family along with my husband. My condition is pretty well controlled these days but recently I had a panic attack in my training classroom for a new job as I'd felt the symptoms of a seizure coming and therefore elevated the symptoms of a panic attack which in turn mimicked a seizure 😔 it's debilitating. Thank you again and for making me feel less alone 👏
Bruh this relatable af, should have more views. all love from the states 🙏🏽💯
Thank you so much. I'm sorry it's been so rough. I have epilepsy it only happens at night time but I don't think alot of people understand it's not the same but it can be just as hard.
Hi I'm so sorry about your epilepsy my boyfriend is in the process of being diagnosed after having his first seizure (clonic tonic I think the paramedics called it) at the age of 25, he has had about 10 more since and has already been prescribed anti epilepsy drugs. His too only happens at night time, it's super scary to witness let alone to actually go through. Please don't feel like you need to answer and I know everyone is different but do you have any known triggers at all? (I'm really sorry if this is rude to ask we are currently waiting on test to try and figure all of this out) I hope you have a strong support system around you and wish you the best x
@@iberobyn*OOF..!*
Dont do that. Don't ( Make - *Assumptions* behind his back )
@@adam.maqavoy hi I'm really sorry but I not quite sure what assumption I've made behind my boyfriend's back, are you okay to explain to me? Thanks
night seizures can be more debilitating than daytime.
Did you try a ketogenic diet?
Thanks man for telling me your story about seizures I was born with seizures caused by a stroke and every time I have a seizure it decreases my confidence and it makes my body hurt
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
I got epilepsy when I was a kid because of penicillin and due to the fact that the doctor didn't know I'm allergic to penicillin and I've had it ever since then
Look bro I'm 44 years old and I've had epilepsy ever since I was seven months old and what you just said really made me feel good I appreciate the fact that it is someone who knows how I feel and how life treats me everyday and yes when I was working it was very hard to keep a job because people did not want to understand that every week or every other day you may not be able to work or work to your fullest but I know deep down inside many people have told me I am a wonderful person so keep up the good work God is with us all thank you🎉
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Thank you for sharing this! It's a very scary thing to go through, and not enough information is out there for people to understand the point of view of the people who suffer and struggle. I truly am thankful for this message! Thank you! ❤️
I totally agree there is not information out there. Thank you🙏🏿💜
I had my first seizure 11 months ago and I think I just had another about two days ago. it’s hard as the days go by struggling with confusion and anxiety. I just feel so lost most of the day I’m sure these weird feelings will only last a few days. But knowing it’s not the last time I’m gonna feel like this sucks and makes me feel depressed you know. thank you for this video friend thank you for everyone who commented on this video I enjoy reading them ❤
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
“That’s the scary thing is that you never get used to it” that hit HARD 😢
I've had epilepsy for over 24 years.
Those first few years were very anxiety inducing.
You've done a great job explaining the emotional and physical aspects.
Do you drive ? I have epilepsy and anxiety as well and I’m 24 years old have 5 and 6 year old kids been having epilepsy since 7 years old and don’t drive wondering can I drive or not.
It's important to have a good support network of people who you can trust like friends and family cos it really does make a huge difference.
I just started developing seizures at the age of 40 I take this medicine now but I still have them I have the same feelings this gentleman is talking about I almost feel deja Vu before I'm going to have one it's a very scary feeling and it's rough everyday just thinking about it it's hard to just live and forget I try to go on every day and say it's not going to happen but as soon as I feel that feeling I get scared I'm sometimes afraid to drive afraid to work very scary God bless everyone that has this. And they won't even diagnose me I haven't even had a CT scan cuz I have no insurance I make just enough money where I can't get insurance and I can't get it through my work.
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
I'm 16 years old today. I started showing signs of epilepsy six years ago. There would be times where I'm just going about my day then in a split second I couldn't manage to tell where I was, even in the most frequently visited places. I had my first tonic clonic seizure five years ago and that's when I was diagnosed with epilepsy. It has really affected my grades in school and my life in general
Did you try a ketogenic diet?
I'm 16 too and just got diagnosed with epilepsy this week I'm so scared because I got my first seizure last January 30
i had my first seizure when i was 20 years old in a college class, i remember starting to have a panic attack and then… im in an ambulance and my friend is there telling me i had a seizure. i remember saying “i had a WHAT?” and just not understanding what was going on. i went to the hospital, they said it was just stress, that i was “burning the candle at both ends” and that i just needed to sleep more and try to relax. the neurologist they set me up with tried to insinuate that i was doing drugs despite me repeatedly saying no, and he said “are you sure? you are an art student, you can be honest with me.” i told him i only smoke weed and i was really offended that he stereotyped me like that. i went 11 months without another seizure, and believed them when they said it was stress. then on my 21st birthday, i had a party, i did some acid (which i had done many times prior & had tested so i know it was actually lsd) and i was having a great time. so many people came to celebrate with me, and i was euphoric! i was playing cards against humanity with a small group, and then…. in a stretcher. my friends said that i seized and then when i was “awake” but not really conscious i just kept smiling and repeating “i love you guys so much.” i remember waking up in the stretcher being wheeled towards the elevator and saying “no, im fine, i dont need to go to the hospital, this has happened before” and one of the paramedics said “5 minutes ago you didnt even know your name” and i replied “5 minutes ago i wasnt IN MY BODY”
i reluctantly agreed to go because they said if i refused id have to fill out a bunch of paperwork and i was so tired, i couldnt focus enough to do that. then after that it was like the seizures kept coming faster and faster. it was 11 months between the first and second, 5 months between the 2nd & 3rd, 2 months between the 3rd & 4th, and then they just became a regular thing. im freshly 24 now, they diagnosed me with frontal lobe epilepsy. im mostly controlled with trileptal & vimpat, with nayzilam as a rescue, but i almost died in january. i had a tonic clonic on the subway platform, 3 bystanders caught me, and i had an 8 minute long seizure that i had to be sedated for. im grateful to be alive, but this disorder takes so much from me, it drains me, i never know if im having a real panic attack or if its an aura, my complex partial seizures turn me into a crazy person, and i just wish we could find a cure.
and i really really resonate with the “rude person” interaction, my boss & hr manager do not understand in the slightest and they LOVE to remind me how “traumatic” it is for someone to witness me having a seizure, but they act so callous when i ask them to think about how traumatic it is for ME to HAVE a seizure.
You just described the last 7 years of my life and it hit like lightning… it came on out of nowhere at work… scalloped tongue and VEEG study’s. So I thank you my guy please keep doing what you are doing for all of us that have that fear or are new to all the info and opinions from us!!! The terrible meds and broken bones and scared family… you motivate the bond we got and that’s rough
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
I’ve had them all from mini mal, grand mal, and nocturnal seizures and lost my license for 4 years on and off until they got my meds adjusted correctly so it’s not impossible to have driving abilities granted. I had my first seizure at 33 so I had to learn about all this as an adult
@@Patrick-ir7mb thank you for this information and I’m so glad you responded to answer and what type of medication do you take for your seizures
Ohhh it’s changed over time but I’ve had keppra and depakote and onfi and this crazy emergency nasal spray that works almost like an epipen for a epileptic during a seizure
I feel for you. I got my epilepsy at 6. It screwed up 7 years of my life though the area in my brain that caused it was removed so I am now 4 years free of it. It’s scary to have a seizure I feel so blessed to not have to deal with it any more.
What surgery did you get to have it removed?
Pliiz I need to help u out Dears ..
Wish I new early..any one can contact me to help them out
Do you have surgery?
@@agnesselvinia3592 yes I fortunately could have surgery. It was concentrated in my frontal lobe so I could have it cut out.
@@Andalayae i don’t know, was 13 and stupid at the time so don’t know the name.
I love the video bro. I'm 47, my first seizure was late 2022, last in March 2023. I had a lot of family stress, deaths going on, n living situation causing mo stress. I found a right mix of medicine, for seizures, provided by my neurologist to help also. But mainly I had to change my mentality about life. Exercisen every day, walking, push ups, jumping jax.
Staying positive n loving everything. Nature, all colors of people, speaking positivity to everything that moves. Love all my epilepsy folks n all humanity
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
In as much as we highlight the strength and resilience of those affected by epilepsy. it's important to remember that living with epilepsy can also be difficult at times. That's why it's crucial to have support from friends, family, and the community. If you or someone you know is affected by epilepsy, know that you are not alone
I got very emotional with this person. As someone who also got diagnosed extremely young, I related to this down to a T. Having someone relate and having the same experiences as me especially emotionally, this is very touching, liberating and amazing. As an artist, I use these emotions to do my work. Thank you so much for speaking about this, there are so many people who don't care or refuse to understand the reality of epilepsy and living with it. Again thank you x
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Hiya, I personally have Grand-Mal Seizures, Absence and Focal Seizures which are normally caused from lack of sleep and/or stress. I’ve had it since I was 18 months old but was Rediagnosed in 2021 I’m 24 currently. I can’t drive because of the risks of it so I normally rely on public transport if I can’t walk somewhere. If you don’t mind me asking what kind of seizures do you have?
@@voicesinlife thanks for answering my question and sorry your going through this as well I hope it gets better soon and I have grandma seizure (tonic) staring seizures frontal generalized
I was born with epilepsy and the type of seizures I get are complex partial seizures. Whenever I feel an aura coming I feel like really scared and feel like someone or someone is looking at me in a menacing way; like they’re going to kill me or do harm to me. I also feel like I’m in another dimension during the aura. I’m also scared of open spaces (agoraphobia) and try to be in a closed space and feel like I’m going to get an anxiety/panic attack. During a seizure I see everyone as if it were blurry, like in a dream, and sometimes I can clearly hear and see ghosts or even people that are not even there when I’m alone. After a seizure I either get really hungry or really sleepy; and sometimes I start rushing back to whatever I was doing prior to getting a seizure. The irony of this is that while I’m not having auras I’m not scared of doing dangerous things like crossing the streets while there are a lot of cars passing by at high speeds or climbing ladders. At this point I’m more scared of being alive than dying to be honest. It’s like I don’t care what happens to me anymore. I’ve already had the VNS surgery done but I still get seizures and I even tried three different medications (Depakote, Keppra, and Onfi) and still don’t work. I’m going to have one more surgery (right temporal lobectomy) where a neurosurgeon will open up my cranium and cut out my right hippocampus. It’s going to be done January 25th.
Brother I am sorry to hear what your going through but please hear me out carefully, There is God and his name is Jesus Christ. He is Real and alive. Unlike other fake gods he love us and wants to protect us because we're his creation, therfore he took our punishment on himself by dying on the cross so that we get free from guilt of all sins that we've commited. Long story short that means if pray in the name of Jesus we get acceptance in no time. There's heaven and hell, there's angels and demons. There's is unsees world (an interdimensional). We're not just a piece of meat, we've soul that goes to either heaven or hell after we die, So I beg you and plead with you to accept Jesus Christ as your father, savior and your God as soon as possible. He will save you and cure you from whatever sickness you have. He did it for me and he will defintly do it for you. So believe in him, read the bible, and ask him in your prayer. If you reply to me with your name I will help you by sending my prayer. May God bless you and save you!❤
❤ wishing you the best outcome and a speedy recovery.
Hows your condition after the last surgery? May I know?
I have been struggling for 16 years not knowing what was wrong. I was told that I was experiencing fainting spells. I had been to doctors and had EKG's, heart monitors, and tilt table tests. Nothing was conclusive and the doctor wouldn't send me to neurology. I was just a fainter. Well at 32 years old, I decided it was time to get a second opinion. That second opinion lead me straight to an EEG, yesterday, where I found out that I have been experiencing seizures this whole time. Everything you said in this video about the anxiety before hand and wondering if it will be your last breath. I FELT that and its the first time that I've heard someone else talk about it the way that I feel it. I'm really sorry that you have to experience that. I wouldn't wish it on my worst enemy. But you are not alone, and now I know that neither am I.
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Thank you for your video it helped me realize that I am not alone in this fight. The anxiety and actually having my clonic tonic seizures sucks. For a while, i truly was giving up every time I woke up in a hospital. i would just tell them to let SUDDEP take me. I am glad my attitude is changing. This video helped thank you for your message. Peace to all
Thank you for your video you are not only helping people but you are also helping those can't speak like us like animals like cat's has seizures as in my case
I’ve been working in the same place for 11yrs, a major airport In the Uk. They have been very understanding and we have worked together to make work life better. This has helped me with confidence. There is still a stigma around epilepsy from people who don’t understand it. Never be ashamed of who you are.
hello I started having seizures at age 5 I am 57 years old now my childhood was spent growing up in the hospitals at age 10 they did brain surgery I wanted to just die when they did the surgery epilepsy was brought on by my mother she was into her drinking and drugs I did my best they told me I would never de able to take care of my self I fought hard to get better and go to school I went to adult school and then collage I finished adult school and collage I was having to many cluster seizures at and I stopped collage with a cluster seizure I had over a hundred seizure in 30 minutes they did brain surgery for the second time and that slowed them down to one attack a year I still have four or more seizures a month the Doctors could never get them all to stop completely if you are dealing with epilepsy stay stron and do not let your seizures win you win keep going. God bless you all.
i know your pain brother....I have had epilepsy now for 10years I am now59 .....i have struggled mentally with self doubt, anxiety ,depression, irritability and cognitive problems. and tiredness i have had problems with jobs, even a trade I had for 30years, i found i could no longer do I not been able to cope with simple cognitive thinking sometimes ,particularly as I get tired, and later in the day..This of course keeps the wheels of negative thinking rolling I do suspect the AED drugs s may cause some of these issues, its hard to pin down ,i have not had a seizure now for 2 years, which is a blessing...But I have realized, that everyday is a blessing , 'in all things give thanks"" we only have the precious present. There are people with far bigger problems than i have got .I am blessed to have no worries with finance's or general living . And joy of the lord is my strength ......the things i love doing making music , making beats playing instruments ,I am still able to do ..God bless those who struggle with epilepsy ....
💜🙏
So sorry about your experience. I personally got diagnosed with epilepsy 10 years ago. One thing that gets me through it all (everything u described ) is believing that maybe the Man up above (God)chose me and many others so that when we do drop (convulse) in public or anywhere for that matter we give people the realization of life and how they need to be thankful and great full for every day they wake up to a new day. And that any day could be our last.
Thank you for making this video! My husband has had epilepsy since he was 8 years old after a benign brain tumor was removed. It certainly hasn't been easy, but you've managed to put in a 6-minute video so much information that is helpful to people in the know as well as those without a clue.
Did he drive ?
Just got diagnosed with epilepsy. Had my first 2 seizures in the same 24hr period. Im 21 years old and this sucks. It’s just crazy to me that none of this happened while I was in the army and it happens right when I get out. Would’ve put me at 100% VA🤣
Can you join the military after having a seizure if it’s just one
What’re the odds.. I’m sorry VA doesn’t wanna 100% cover you. As a 28 year old who recently has been diagnosed yesterday and still needs to go to a neurologist. How has life been? My names Bryden an I used to be a alcoholic 2years ago I quit/had withdrawals and 2 seizures back to back. Never had a issue again till recently yesterday I was holding my baby boy and my wife was on her way home when I suddenly got out of body feeling and just dizzy as all heck and I unlocked the door for her, sat down she took the kid and I moved myself to the floor without knowing it and my speech got slurred then I had a seizure. Medics took me to ER they diagnosed epilepsy. Last night while sleeping I had another in bed 😢trying to go 24 hours without one maybe again. Just found out I can’t drive or ride my motorcycle anymore either.. what else can’t we do? What are your triggers? I know they may not be the same but might help
@@cloneme34live33 Doubtful at best. I enlisted at 18. A month before I shipped off I had a seizure. My recruiter knew I was fuming but he said the armed forces isn’t comfortable with servicemen with epilepsy holding rifles. It’s hard to swallow but hes right. I’ve had this condition 35yrs. It always infuriated me because I’d have them a lot. Then they would go away 4,5,even 6 years and suddenly come back.
I’m 50yrs old and it hasn’t beaten me although in a few cases it should have. You seem stubborn and hardheaded like me. It’s not going to beat you.
The best advice I could give you is work with what you got.
What branch were you looking to serve in?
@@wiggitywhitefox wow the same thing happened to me while holding my daughter.
Best of luck
@@wiggitywhitefox check with your state. In New York you won’t be able to drive for 6months to 1 year. Then the dmv will issue you a form every year that your neurologist has to review. If the neurologist gives you clearance the dmv will likely agree. Most states have this policy. Only as usual all the states have different waiting times instead of doing something intelligent and making it one time frame across the board.
I’ve been having seizures since I’m 16 , I’m now 50 it’s not as bad but I still have 1-3 per year.
Dealing with it all my life. My worst was having 40+ seizures in a day and then flatlining for a bit. I hated that day, but joke saying "well im a zombie now". Hate that it limits me, both in my personal life and professional one.
I’m glad you’re still here I absolutely fuckin understand! The most I’ve had in a day was like 7 you feel crazy asf after that shit… feel worn the hell out excuse my cussing but damn it’s so frustrating living with this condition people just don’t get it because their the ones that are 100% ok! Like damn 🤦🏾♀️
I'm a distance runner. 40 years old now. I had my first seizure about 8 or 9 years ago. Saw a few strange colours and woke up on the side of the road. Didn't really know what happened. Fast forward to 2018, running again, a blinding light in my right eye, woke up on the road surrounded by people. Then about a week ago, running again, saw a really strong multicoloured dot, it got worse, I sat down and woke up surrounded by people and taken to hospital. No injuries. So, only three ever in my life. I have been mentally traumatized by the 3rd one. I am deathly afraid of seeing auras again, afraid to close or open my eyes. Then, once regaining consciousness the feeling of not knowing what is going on, unable to communicate etc is like a nightmare. I don't know how to get over my fear and extreme dread. Any help/advice would be most welcome.
Hi there, it can be tough coping with the unpredictability of epilepsy and we know there isn't one answer that works for everyone.
Some people can identify triggers that make a seizure more likely. So avoiding triggers can help with getting good seizure control. Not all people with epilepsy have seizure triggers but knowing about them and keeping a diary of what you notice can all be helpful.
Also if you are still having seizures talk to your epilepsy doctor if you can. They may be able to adjust your medicines to give you better seizure control.
Some people tell us that reviewing their safety and having a seizure alarm or a way of alerting a friend or relative can help them feel safer. I'm linking you to our information about living with epilepsy which has information about keeping safe.
Other people tell us that it can help to link up with others affected by epilepsy. I'm linking you to information about the support we offer at Epilepsy Action if you live in the UK.
If you're not in the UK you may be able to find support in your country by using the map on the International Bureau for Epilepsy website.
I hope you can find a way forwards with this.
www.epilepsy.org.uk/info/triggers
www.epilepsy.org.uk/info/diagnosis/seizure-diary
www.epilepsy.org.uk/info/daily-life
www.ibe-epilepsy.org
Regards
Mags
Epilepsy Action Helpline Team.
Hi, did you try a Ketogenic diet for epilepsy?? My daughter had a very good response....
@@mikek.9980 Hi. Can you explain in more detail?
@@TheSiameseDreamer Yes, my daughter has epilepsy and she's was on ketogenic diet and was free from seizures for almost 3.5 years. Please try to get a book Ketogenic Diets
by John Freen, Eric H. Kossoff, Jennifer Freeman. However, it's very important to start with high fat ratio 4 : 1 or even 4.5 : 1 if tolerated. And after seizures stop, slowly reduce it to 3:1 and later even lower. This diet works for some people not all of them, but when works it's beautiful. Again you have to be diligent and not allow the sugar to go high and be patient as a diet's effect are delayed so please give it some time at least a month...
High humidity and low atmospheric pressure can cause seizures
Just got diagnosed. It's really helpful to have people like you make these videos!
Thank you, Luke. If you think it would help, we have a guide for the newly diagnosed on our website: www.epilepsy.org.uk/info/newly-diagnosed
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Thank you for posting. I've definitely had the 2 and 3 parts, which led to the departure of a lot of so called friends! I've actually been deemed 'uninsurable' by employers because of my multiple health issues (some are linked to my epilepsy), and too old to be employed long term owing to my age at 53. Instead, my career is advocacy, especially with epilepsy. Take care 👍 ☺
I always forget OTHER people have epilepsy and share the same experiences. The anxiety really is detrimental. But, I forge forward. Good video, mate.
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
@carlisa. I hope this response reaches you well. I have myolclonic, absent, and tonic clonic seizures. I will be 9yrs seizure free on June 10th! Yes, I do drive and never had my license taken away. However, when I was feeling terrible, the last thing I wanted to do was drive. The safety of myself and others is paramount. I just want to throw a few things out there that made me seizure free. 1. Probiotics - a healthy stomach equals a healthy brain. 2. Gluten, dairy, soy, and night shades are not good for your diet. 3. No alcohol. 4. Sleep is very important. 5. Medicinal Marijuana helped me tremendously. However, it started to cause daytime anxiety so I stopped. I hope I didn't bore you and best of luck managing your epilepsy and family. Keep your head up!!!
@@JL-fx5cm thank you so much this really helps. I’m going to remember every single word you said. It’s just tough and frustrating sometimes depending on people
@@JL-fx5cm it actually helped a lot I’m going to remember every word thank you so much epilepsy and not driving with two kids is very stressful and frustrating of depending on others hope it works out for me as well as it did for you!
@carlisa. Glad to help. And yes, while having epilepsy you get to differentiate between fake friends, open enemies, and TRUE FRIENDS & FAMILY. I should have added to my list, Get a Dog. They are better than people.
reading these comments make me feel so much less alone. i wish there were more support groups for epilepsy. it is so mentally defeating.
I'm sorry for what u going through. I have epilepsy since 11yrs old doctors don't know why now I'm 23 I had second two seizures at 14-15 than at 19 yrs old I was seizure free for four years so we tried to lower medication but after few months I bad seizure so we had to get back to medication than again four years clean lower medication and again yesterday after four years 🤣🤣so again my doctor had to prescribe me higher medicament as it was before :) but they always says that stress, less sleep and also sickness can provoke seizure. And this year was very stressfull for me break up, new job, moving out of town, than again losing job again new job, move back to home town it was ride 😁😁so I would advise just be happy as much as possible don't stress much be with family or get yourself a puppy as I did 😊😊
Hello and thank you for sharing your experiences I am 60 and I had my first seizure when I was 4 years of age, I had a thematic event happen to me that caused me to have a Grandmal seizure. It changed my life forever it seemed that after that I was behind the eight ball my whole life. I could not do the things other kids could and because of that I was left behind or did I leave myself behind, I have been playing catch up my whole life never being on point with any one thing. I was left in a hospital for 9 weeks 200 miles from my parents, they would visit when they could but at that hospital they would try to find out what type of medications would best serve me to not have as many seizures, I was having anywhere from 15 to 20 seizures a day that would last for 2-3 minutes each. I have been on medications strong medications since I can remember till this day at 60, that also has affected my brain and judgements and temperaments in life with relationships and life in general. thank you for your story I am trying to put together a channel at this moment but I also want to help people cope with this terrible problem of epilepsy.
this is for anyone in the comments who have epilepsy, lay down as soon as you feel one coming on and try to get to someone if you know they are close enough. this will save your life❤
I want to express my support for you and anyone else living with epilepsy. I pray that you will continue to have faith in yourself and the strength to continue.
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
I feel you bro. I'm about to turn 41 and I still don't drive. I was diagnosed about ten years ago
how does not taking or switching to another medication effect seizures? or make them worse?
I still drive because I don't care what the laws say. Just don't get pulled over!
I totally feel for you. Although I don’t have epilepsy, it is frightening to see a very young relative have seizures. Finding the right combination of medication has been a journey through epilepsy for our entire family. Good diet and sleep habits are just as important for keeping healthy and relatively seizure free. I especially loved that you mentioned the importance of service to others. No job is too menial if it is helpful to others. Thank you for sharing your story, and I wish you the best of good health living with epilepsy.
Do they drive ?
I have struggled with non-epileptic seizures since I was 18 years old. I think I just lost my three-year job tonight because I cannot stop having them multiple times a month feel like there’s nothing I can do to get my life back under control I just had to watch this because I feel so lost. I don’t know what to do. I feel like I’m drowning.
Good points on how ignorant people are so annoying, time and energy wasters.
I have epilepsy, i hate it so much. I have also other health problems, i really hope all of you happy, joyful and healthy life.
Thanks for this I just had my first seizure ever while doing a live stream last night unbelievable just what I need is part of my life
Sorry to hear that you have had your first seizure. Have you told your doctor about it?
@@epilepsyaction yes use brain cancer folks talk to our docs all the time they gave me keppra but I’m reacting to it badly
This was really moving and inspiring. My sister suffered from epilepsy for almost 20 years and the seizures just came back more severe than ever. It's really amazing to see you describe what it feels like from your perspective. I will try to be more mindful of giving advice or making the person feel like they need to hurry up and solve their problems as soon as possible. Your perspective is so inspiring! Thank you for being so brave 💜
i’m 17. 2 months ago i had my first seizure. i’ve had about 10 now. i have them in my sleep but am kinda aware when they are happening. i’m like in-between consciousness. i am sat here currently at 23:15 too scared to go to sleep because i’m scared i’m gunna have one again tonight. i can’t take it. it is genuinely the scariest sensation i’ve experienced. the exhaustion the day after. i hate it. thank you for this video i genuinely appreciate it.
We understand how frightening experiencing a seizure can be. If you have any questions about your seizures and would like to talk to us about them, don't hesitate to call our helpline on 0808 800 5050.
Guys this the first time im really reaching out and watching videos on others' experiences. Ive had epilepsy since i was 19 and am now 39 and it hasn't really changed....you are all an inspiration, BIG love to you all....theres so much i could say right now but itd fill tge page, ill be back x
I just had my first tonic/clonic seizure last Thursday at the age of 30. However I now know that I have in fact been experiencing auras for close to a year now. I am so so blessed enough to work in neurology and so I have been able to fast track getting a diagnosis. I’ve been diagnosed with left frontal lobe epilepsy. Your video means a lot and I know my life is about to change very quickly and dramatically so having other people share their experiences really helps. I’m a very independent person so at the moment the thing I’m struggling with the most is a feeling of loss of independence but I know eventually I will adjust. I know exactly what you mean by never wanting to feel the aura or the pre seizure feeling ever again . I really don’t want to but understand that it’s inevitable. It’s such a hard feeling to explain to another person
Thank you for sharing this with us, Jessica. If you ever need any help, you can find our support resources here on our website: www.epilepsy.org.uk/support-for-you
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Feel ya man , i feel lucky i was 33 when i had my first , its a hard long road my friend , stay strong brothers and sisters x
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Thank you for sharing , much appreciated 🙏🏾💫
Thanks for sharing this. I had many questions and hearing you makes me feel understood. Hearing you also makes me understand my own experiences. This anxiety, and all these unexplainable feelings are awful. I started a treatment which helps a lot. Again, thanks for sharing man, and I hopt you're doing OK.
Wow I like how u broke it down, Communication of people is just like that for real it’s sad
Do you drive ?
i'm gonna be 30 next year and i was diagnosed from birth had my first seizure at age 10 in 2004 still remember that day... my life was never the same... the superstitious one are the worst. still going though tough times now...
I experienced a seizure and was diagnosed with epilepsy for the 1st time in November 2021.(I'm 22year old) The doctor is still trying to find the causes of it.... Even though I show no irreversible damage And was put into a 5 day induced coma in Critical Care. I'm sorry that you're also going through this my curiosities are just as high being this happening to me with no sign or immediate history of epilepsy on both sides of my Family. I wish you the best💪🏽💯💪🏽💯.
You’re the first person that has mentioned how your head can tell you that you’re just playing tricks on yourself, it’s really confusing. My seizures get confusing when I’m in them and I can easily tell myself I’m putting it on or making it dramatic and I get a lot of anxiety that other around me think I’m making it seem worse than it is
I had my first seizure today after 3 years of being seizure free... I've probably had around 15 seizures in my 20ish years on this planet.
My only advice to others living with epilepsy is to be open and honest with any close friends and family. You dont have to tell them all the details, but at least if they are aware, they will likely be a bit more understanding.
As much as my Epilepsy sucks, i know others have it worse. I still have my freedom, and I think it's important not to let anything stop you from doing what you want to in life, even if it's your own brain getting in the way...
Do what's best for you medically, but dont let it ruin your life altogether. We are all only here for a short time, make the most of your life. Everybody rich or poor has problems. Some people are just better at hiding their problems than others.
I have been and done the pity party, and personally, it got me nowhere. I found trying new things and proving to myself that i can still do things myself, really helped my self-esteem & confidence.
Thank you for sharing this, Fred.
I’ve been diagnosed with epilepsy since I was 10 and the specialist consultants were fantastic and they put me on one type of medication that sadly had too many complications but when I had one of my most scary fits I was put on tablets I can now take for life there is hope because doctors are investigating different medicines for epilepsy all the time stay strong 💪 😀🕊️
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
@@carlisa. I’m so sorry to hear that yes I can’t drive and the seizures I have are grand mal🙂
@@Liv19401 thank you. Sorry to hear about your seizures also.
@@carlisa. it’s ok I really appreciate your kind words epilepsy is very common these days but I’m glad there’s medication for it ☺️
Im so sorry this happens to you all in these comments! I’m the one who likes to research these conditions because I have a heart that wants to help you guys out when I come across a person as such😢❤
Makes me feel not alone because that's how I feel when no one understands I'm disabled since I was 18 because of it and I don't have the same chances as everyone else at 33 say a normal life real job everything blessed to still be alive much love for anyone that lives the life with IT
I was diagnosed at 33, in 2021. Shocking. Painful. Woke up at 6:30 to get to the bathroom and regained consciousness 45 mins later inside an ambulance, an injured knee and a head trauma. Meds are terrible, I’m likely drug resistant, still not allowed to drive and I have 2 jobs. It’s hard guys, ikyk. Hoping a brightful future for all us, stay strong 💜💪
Sorry to hear that you are struggling with your epilepsy. If you ever want to have a chat with us about your condition, please call our helpline on 0808 800 5050.
I am Epileptic as well. When you feel the aura coming on, PRAY to the Almighty YAHUAH for Him to take the seizure away. See If He Will. He takes it away from me when I feel the seizure coming on. If I don't pray then I often go into the convolution.
Spot on video especially covering the anxiety confidence etc not enough spoken on that matter 👏
I was diagnosed with Photosensitive Epilepsy (Sensitive to flashing lights) when I was 2 and had my Seizure Tumor surgically removed when I was 8.
I don’t remember any of my Seizures but I do remember being in the hospital watching TV.
You're great- wishing you all the best in life
I feel your pain bro, I live everyday just wondering when’s it gonna happen, who’s gonna see me die, who gonna have to be the one to watch, how come when I have a good 3 months I have a seizure, it just never makes sense, but what does is just to keep moving forward, be a great boyfriend, be a great friend, listen and just help out people, instead of people helping you out
Hi Jake
Everyone's experiences of epilepsy are different. But living with the condition can be tough and unpredictable at times. It's important to know you’re not alone and there is support for you, if you need it.
If you're living in the UK, The Epilepsy Action Helpline is free on 0808 800 5050 Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm. Or contact us on our live chat 10.00am until 4.00pm Monday to Friday. www.epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline
We have Talk and Support groups to connect with others affected by epilepsy. www.epilepsy.org.uk/support-for-you/talk-and-support-local-groups
We also have some online services you might be interested in. You can link up with others through our Health Unlocked, Facebook, Instagram, Discord and Twitter.
healthunlocked.com/epilepsyaction
facebook.com/epilepsyaction/
instagram.com/epilepsyaction/
www.epilepsy.org.uk/support-for-you/the-epilepsy-discord-server
twitter.com/epilepsyadvice
I feel you i have epilepsy for about 4 years its a headache just stay on top of it i done been ambulance had wreck almost died Hod bless all of Use Amen we not alone 🙏
This is all so on point great video. Being an Epileptic it's great to see this all being explained for others. I'm sending this to my boss 👍
Hey I’m 24 years old I have a 5 and 6 year old and I have epilepsy since 7 years old epilepsy and wondering what type of seizures you have and do you drive ?
Grand mal epilepsy buy yeah I have been seizure free long enough to get my driving licence.
@@michaeloffen7513 do you remember how long you were seizure free to start driving?
I was diagnosed with Epilepsy when I was 2 and had a Brain Tumor surgically removed when I was 8.
23 years Seizure free.
Congratulations on being 23 years seizure-free, Robert.
Thank you so much for this insight. It has helped me better understand my brother that suffers from seizures.
Do he drive ?
@@carlisa. nope, he has to be seizure free for a certain amount of time but even then it’s really dangerous
@@BigBop. ok thanks sorry ik it’s tough
I’m at the hospital 🏥 right at this moment with my Sarah (6 years ) doing an over night EEG test 😢 . I’m On here trying to have a better understanding of what’s going with her 😢 so I can be a better mom and help her in anyway I can. Listen you makes my want to cry BUT am NOT got to strong for her . Sorry for what you’re going through 😢
When I was 15 I had a seizure in the bathroom while I was brushing my teeth. We had glass candles in the bathroom my body apparently cracked one of them. Somehow I unconsciously swallowed a piece of glass. An X-Ray was done they saw a shard of glass stuck in my throat and I had to live with that for a day and a half. As I was also recovering from a seizure I had to have surgery to have the glass removed. I had to stop running track, school became difficult and I isolated myself even attempted suicide. My last seizure was in 2015 but I’ve been taking medication since 2009.
Sorry to hear that you had to go through such a harrowing experience, Ross. If your ever struggling with your mental health and need to talk to someone, please contact the Samaritans on 116 123.
Thanks, I have seizures and despite taking medication I still get the odd one now . And yes after a seizure I’m so tired. But I plod on that’s all you can do.
I also get that feeling like I'm about to die right before a seizure.
God bless you. Hang in there, friend.
Mines have been on and off for about 15 years now. I was 18 when I had my first and I was in denial for so long . I just try to stay stress free and positive because I had one 3 weeks ago and have beeen down ever since 🙁
I started having seizures 5 years ago at 35 years old out of nowhere. MTS. I just passed out and people were around me staring. Strange feeling. I didn't ever feel it and felt fine after. I got put on medication after about 7 seizures. Medication worked until 1 year ago I felt one coming on and could tell it was going to happen. after 18 hrs of really stressing out I had 1. 2nd time I felt it I went to the hospital they gave me a lorazapham and I was able to calm down so I know know anxiety can trigger it. It's hard to explain to people who don't go through it. It definitely feels like your here right now and can be gone tomorrow. You gotta keep moving sometimes its mind over matter.
Great video. Thank you for making it. Hang in there soldier. 💜
I'm 39 and struggling with epilepsy and it's hard thanks
Did you try a ketogenic diet?
I was diagnosed with idiopathic epilepsy when I was 12 year old... it's being hard, but now, 11 year later, thanks to God. I just took my last pill. Doctors says that I don't have to take them anymore y just can't stop crying of happiness
started having epilepsy mid summer of 2022 never once before(im 24years old) already on the maximum dose of kepra and they talking about a surgery. i dont feel it coming i just fall and have the seizure. when it happens i never remember it and am really sleepy. in life i wanted to be a trucker/heavy machinery operator , now i cant even drive... lets say that was a big “fuck you” to swallow lol
I feel where you coming from bro 💯
the scary part for me being diagnosed as an adult out of nowhere 3yrs ago. i am now 31 and dealing with this is nothing nice, the crazy part is that before i have a seizure its hard to explain, when i come back to reality my memory is all over the place and my senses are extremly heightened afterwards. my seizures just happen without any warning my life has changed alot since my diagnosis in 2020
We will never meet. Even though, we can relate the struggles of life. Be strong my friend.
Its possible to get it under control. Went over 10 years seizure free till August 22 then every 2-3 months ive been having odd ones or mulitple ones in 24 hours. Hopefully will get sorted again soon.
I was just diagnosed with epilepsy at 23 I'm not sure what will happen. I'm scared and don't feel like myself. This video helps me knowing I'm not alone. But I'm so scared
I haven’t been in officially diagnosed yet but I’ve been struggling with seizures for about a year now. Does anyone else struggle with depression after an episode? My most recent episode, it was like an all day affair of being half asleep until I was found passed out. I have no memory of that day. And the amount of depression I feel, is unworldly.
Hi Hannah
It must be a stressful time waiting for a diagnosis and having to deal with these episodes.
www.epilepsy.org.uk/info/diagnosis
After a tonic-clonic seizure, you might have a headache and feel sore, tired and very unwell. You might feel confused, or have memory problems. You might go into a deep sleep. When you wake up, minutes or hours later, you might still have a headache, feel sore and have aching muscles. Some people also find their mood is affected such as feeling low or depressed.
The length of time it takes to recover after a tonic-clonic seizure is different for everyone. Some people feel better after an hour or two, but for some people it can take several days to feel ‘back to normal’. www.epilepsy.org.uk/info/seizures/tonic-clonic
If you are diagnosed with epilepsy, it's likely they will start you on epilepsy medicine. Recent research has found that around 7 in 10 people newly diagnosed with epilepsy can expect to stop having seizures with the right medicine. But it can take a while to find the right dose of the medicine. www.epilepsy.org.uk/info/treatment/anti-seizure-medication
If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm
Regards
Diane
Helpline Team
I had my first seizure at the age of 17 due to catching brain encephalitis & had then lost 2 years of my (school) memory. So my identical twin sister who wanted to continue living our high school, social, fun years of life was bothered by me because she had to sit in multiple hospital rooms to capture memories for me while doctors tried to find out what was happening in my mind. Then at the age of 19 they finally diagnosed with Epilepsy with multiple types of seizures, Complex Partial, Absent and Minors. Then in 2019 I received NES seizures. So unfortunately I lost my social life quite fast and so did my twin, yet who did we gain? I have long term Partner & my 6 year best friend who has stayed by my side through it all and my twin has a husband! You don’t need a group, you need besties!
well I had meningitis when I was born then 46years later started getting epeipy and have had it ever since then but under control now with tablets as I also found that halve my brain is non functional at all but am living as a normal person now can't drive either witch is most disturbing as well so maybe you in a better position than what I am in praise God you are still alive still