Epilepsy is so scary, especially when you have them in your sleep, I cant tell anyone how many times I've had a seizure and peed myself and woke up and was changed while my bf explained what happened, after they happen my body aches so bad, and all I wanna do is sleep, they happen for hours at a time and it sucks having them for 12+ hours, sometimes my body after goes limp for a small amount of time, its hard retaining memory, the depression and anxiety from this disorder is scary. I got diagnosed when I was 17, im 21. Idk anyone with epilepsy and no one ik will ever understand it but im thankful for the people who are here for me thru them.
How do you work? I have grand mals every so often (mainly in my sleep) and petit mals almost daily sometimes multiple times a day. I've been homeless multiple times. I have applied for disability but have been rejected after a year of waiting and struggling getting to appointments. I haven't found a medication that makes them better, only worse.
@Dorris Tammy how can I have this kind of herbs I'm from Philippines my 6months old child got epilepsy it so serious I don't know what I had to do.i very tired to think why my child got like this epilepsy ?
@@jamesmcquade453 = Amen.. Got 0 points for PIP!! Even with 2 Doctors/Neurologist letters!! Had seizures in Work & don't know how people manage to hold down a steady job tbh..! All the Best anyway.
I had a lawyers receptionist tell me it’s hard to prove that it effects work in court thats why lawyers don’t like these cases because of that. doesn’t really prevent you from work they say I beg to differ luckily for me found the right meds. Good luck to you all.
I like hearing other people explaining their lives with epilepsy cuz I feel like I really connect. Since being blessed (yea right lol) with epilepsy 2 months before I graduated high school in 2006, I have yet to meet another person with the same problem. My friends and family have been there for me since the beginning and yet, it's so hard to try to explain it to them. Do I know when I'm about to seize and if I do, how does it feel? What about during or afterwards? So badly I want to tell them everything but it's so hard to describe it that I have a hard time finding the perfect words. I LOVE it that these amazing people are here to help others through this.
I understand completely. It’s such a misunderstood illness. I also have yet to find a person who experience exactly what I do. However I believe we all ( epileptics/ seizure having ppl ) accept one another’s experience with understanding and empathy. There is a comfort/ belonging/ empowerment in hearing others stories. It’s hard to explain.
I have it as well, I was diagnosed several years ago and Im just now considering listening to other peoples stories. I so wish I did earlier so I didn’t feel so alone
Had epilepsy for 13 years now, diagnosed at 16. Over time one gets "used" to the new changes in life. And it's kind of frustrating to be honest. So I'm glad I came across this, since I finally feel that feeling of connection of a "finally others who understand" and not feel alone. Because even though my friends and family know of it, no matter how I explain of how it feels, how sick I feel after a seizure, how much it hurts when biting my tongue and when my entire body hurts. How scared I feel when the medicine starts to not work and have to get another medication added as well with higher dosage. They won't be able to understand. I had seizures mostly at night, only once during the day. I still remember the first seizure my family ever saw before diagnosis, "waking up" to see my mom on her knees crying next to my bed, then going back to "sleep"(another seizure) and wake up to now to both mom and dad. Never in my life had I ever seen the expression they had that time. After that day, mom would check on me various times at night.
I was diagnosed at 33 years old. Will be 40 in a month. So far 11 months seizure free. Nocturnal seizures I have mostly. Thankful for this vid and much Love to U All!!!!!!
Really glad you found the video helpful. If you ever want to talk to someone about your recent diagnosis, you can ring our helpline. We also share the stories from people with epilepsy on our website which you may be interested in www.epilepsy.org.uk/info/support/helpline www.epilepsy.org.uk/my-story
@Dorris Tammy Are you an idiot stop spreading misinformation herbs cant do any of that medicine from doctors will get you better not some stupid herbs.
I have been living with epilepsy for 30 years now, just had my last seizure this October, just when you thought you were improving.. suddenly a grandmal seizure happens and that feels devastating but I guess, I already got used to it. I dont know anybody who has epilepsy here so I feel connected with the people who shared with this video. Thank you for sharing your experiences, makes me feel that i am not alone.
Diagnosted at 14, now I am 32! HAPPY WITH EPI ❤ It was hard to be labeled, but it is your brain and your choice of to be happy! My tips: 1) SLEEP! Always most important 2) NO ALCOHOL, respect your brain 3) REDUCE SCREEN TIME, let your brain get bored, go for a walk, enjoy nature or even streets 4) BE POSITIVE, you can find a way how to live with it and reduce it, I have 2 healthy kids, full life and peace and you can get it too ❤
I was diagnosed when I was 13 and now I’m 26. My mother found me underwater in the bathtub and that’s how I was found to have them...long story. I have 3 kinds of seizures, but my tonic-clonics were controlled...until yesterday. Now they’re back worse than ever. I can’t drive and never will. I’m so upset because I’m about to graduate college. 😢
I just recently woke up in an ambulance twice in less than 2 days because of 2 Tonic Clonic Seizures. Now looking into this subject makes the last few years all make sense. Just waiting now to get to a neurologist. I hope anyone dealing with this in any way can find the most comfortable path to travel on your journey through life. Thank you for sharing this.
I had my first tonic clonic seizure that I know of 13 years ago. They’re the worst thing I’ve ever experienced and changed my life for the worst. I’m a grown adult has to live with my parents, can’t drive and I’m limited physically because the seizures rip my muscles and sometimes hit my head on things on the way down. I get an aura but just like the one lady. I don’t have enough time to get to a safe place. If you have epilepsy like me. Be safe
I was diagnosed with epilepsy when I was 3 months old & the only thing that helped me was an epilepsy camp but now that I'm older & can't go now it just helps me remembering all those other kid who are going through it too or just remembering that I'm not the only one out there with the condition to.
Yeah this video is so helpful. I just got diagnosed with epilepsy today. I am kinda shocked. I am relieved to have finally found out after waiting for loads of years.
Life was grand as a toddler, going on weekend trips with my parents, playing with my friends and listening to grandma as she shared one inspiring story after another about the good old days. What more could a child ask for than the love and comfort of her family? Surprising life quickly took a turn for the worst and that pathway I was destined to journey became rocky as traumatic obstacles crossed my life path and took me on a different journey. A journey, one no child should have to experience. The Beginning At the age of five, I had contracted a sore throat and an ear infection. My mother had brought me to the doctor’s office that evening and the pediatrician had put me on penicillin and told my mother to have me rest in bed. No one thought much of it at the time. I rested in bed and I was on the penicillin for about ten days. On the tenth night when she put me to bed, my lips were more red than usual. The next morning at about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She walked into my bedroom to find me in my bed turning blue and having a grand mal seizure. This was the first time I ever experienced a seizure. ruclips.net/channel/UCOzqYUgTHdJqF-XuNH2qt5w
I’m glad to see others share their journey I struggle with this newness and life is sooo difficult now I’m doing my best to cope as much as possible in a positive way. I can’t even watch the entire video because I’m just so choke up listening to this. I’m so scared of the unknown. I wish I had someone to talk to about it that knows like I do. I’m scared to share certain things with the people that love me because I don’t want anyone to look at me in a different way😢
I’ got diagnosed with epilepsy 28 years ago. I wake up and feel like someone just beat me up and I don’t remember it. I also have osteogenesis imperfectia and have broken many bones having seizures, it can be hard.
@@hillz405 = That stuff overdosed on, but it helped I'm sure. Got a 'Drunken feeling' from Carbamazepine. As long as it helps you though.. All the best..
I got diagnosed with epilepsy when I was 18 months old.I am now 13 and it has many downsides other then just seizures.I have multiple of the seizures listed in this video.I am happy that someone can relate
I was diagnosed with complex generalized epilepsy at 17 years old in 1994. The constant of it in all degrees...brings the purple folks together. 😁 if our seizures are uncontrollable...so our facts are too.
This is so touching for me... I've been diagnosed with jme ( juvenile myoclonic epilepsy) last year with four triggers of not eating sleeping too much too much caffeine or stress, it started when i was 15 1/2 i dropped on the floor thought nothing of it didn't have any body jerks or seizures. That was until i hit 19 i had more body jerks that came out of nowhere, then i had my first seizure. I went to a hospital to get an eeg test it didn't show anything back then, and kept having those episodes once or twice at most every month. I "treated" myself with booze also drugs to forget but would always come back, where i used to live everyone knew i had seizures and kept looking wishper to eachother "that's the girl" . I'd wear black clothes huge hoodies so no one would notice me and avoid people asking if i was okay/ what happened i wanted to avoid the sympathies or worries it made me feel uncomfortable also agitated i just wanted to be left alone, did not go out during the day only at night to get my fix. My mom told me to go live elsewhere, because she couldn't handle my seizures and my addiction eventually she moved out of her home telling me the main reason why she moved is because i gave her a bad reputation because of my seizures, i ended up moving in with my dad got sober. I'm taking medications i still suffer seizures once in awhile the doses had to become more potent several times, it made my dad depressed and felt like it was my fault. I now feel allot better, but i'm constantly afraid that my episodes might show up out of nowhere. Therefore i am always afraid of going out to socialize, do little tasks or simply going for a walk, it's embarrassing for me to accept who i am and what i have i feel like i'm not normal. To this day i am still learning to love myself and to realize this is not my fault. This video is helping me allot to realize there's always someone out there that understands it helps me everyday to gain self confidence. To the people in this video i want to thank them for being supporting, and open to talk about they're expiriences, also normalize epilepsy to help others like me it's very inspiring. ❤️
Same here, I was diagnosed with epilepsy, mostly absence seizures when I was 7. When I 16 it mutated to jme after I started having body jerks in arms and legs. I have the same triggers, and as a teenager and now uni student it's a lot, cause all my life is studying late, stress, coffee to stay awake in class and wanting to drink and party. I've been changing dosis this month cause i started having more jerks and absences after my rutine eeg showed those things again. Now I have all this conflicting feeling of being thankfull that I have the treatment, but also in a rebel juvenile that wants to drink and party and sleep late and do all that without having myoclonies all morning the next day, the mugs in my house and my old phone are the victims of that mostly. I don't want to have breakfast because i spill things but have to cause not doing it triggers my seizures. So yeah, conflicted with my rithm of life and my triggers is a struggle, cause beyond partying and drinking, which I've always been responsible with my epilepsy, I go to bed late cause i have to study and read and work, and stress is an everyday thing in uni
I was diagnosed with epilepsy at age 12 and now I’m 21. I first had absence and then a year later I started having tonic-clonic, it’s that type of thing where no one understands unless they’re going through it. I always try to educate as much as I can which makes me happy. When I was in high school especially, I did not know anyone else who had epilepsy, it’s a very lonely feeling. My neurologist recommended me to an epilepsy camp provided from the epilepsy foundation. I was 15 when I first went and the age limit was 19. Best years of my life. If you are a parent especially, I definitely recommend putting your kid in an environment where they feel like they’re different. I made life long friends and I learned from camp that my epilepsy does not define me. I am more open about it and I no longer care what people say if they make jokes about it. Seriously, one of the best decisions I made in my life going to camp. Of course covid kind of messed things up, but once things start running again definitely go to camp or put your kids in camp or just surround yourself around people who know. Sometimes I feel my epilepsy was a blessing in disguise, I’ve learned to appreciate life more and grow a lot quicker than people my age.
It's a nightmare & tends to strike randomly.. Being born with it I spose isn't as bad as getting diagnosed in Teen/Adult yrs because it's more of a shock surely, but either's not ideal of course. Thought had a Brain Tumour, but they put it down to Hippocampus on the left being slightly enlarged! Get the Absent ones most! With a horrible De-Ja-Vu like feeling which leaves me feeling weak & nauseated. Bless ALL who have it anyway...
I noticed while logging down my seizures that there were similarities. At night with cloudy weather & fog. The atmosphere has electricity in it and we are the ones who suffer as a result to a seizure.
I was diagnosed with epilepsy when I was 29. I had a stressful job at the time, and had my first seizure at work (focal seizure) that lasted maybe 10 seconds or so. I went to the doctor and was told maybe it was a panic attack related to my stressful job. It took me going back to the doctor multiple times before they did tests and determined I had epilepsy. I do have auras right before the focal seizures. I experience deja vu and then become confused and disoriented. It's very scary and frustrating... I worry that one day my seizures will get worse if I can't find the right meds or routine. It's all so unpredictable.
The worse part about having epilepsy is that you can't live your life the way you want to and it's very frustrating I feel like I would never get rid of it
If you have WhatsApp, then message me. We can talk about getting rid of it. My sister has been seizure-free for 16 months and counting. She consumed a plant-based stem cells supplement for 3 months. I can help.
Diagnosed with Epilepsy three months after I contracted Covid. Absence of mind at 64. I have no clue when they occur or what going on. Rather peaceful from recordings. Gone with the wind, then back. Truly Blessed. Witness worst.
Oh man I've had complex partial seizures while riding my bike and riding horses, managing to stay on and keep riding. When I wake up I have no idea who I am or where I am. Then trying to gather myself and figure out how to get home alone is horrible. Having tonic clonic seizures in public is the worst as I often wet myself and hate waking up to people panicking and having to deal with ambulances, and then figure out how to get home. Living without a licence is so hard and I've received so much discrimination socially and professionally. I was unable to study or work for all of my 20s because of the seizures and lack of memory and there's so much of my life that I don't remember. I almost made it to 11 months seizure free this month, thinking id finally beat it and would get my licence back. Two days before my neuro appt I had a seizure which took me three days to recover from. I have no idea how I used to manage having them daily, weekly and monthly while still having somewhat of a life (if you can call it that). People have no idea how terrifying it is and they take so much for granted. On the plus side, when I was diagnosed as a teenager I was headed down a very dark path and it forced me to change my life. I have no idea where I would be now if it wasn't for that benefit, and all the loses that have resulted from my diagnosis.
I was diagnosed with Photosensitive Epilepsy when I was 2 and had my Seizure Tumor surgically removed when I was 8. Flashing lights don’t bother me but if I watch it for too long it can start to hurt. I’ve learned that the hard way with a lighting glitch in Fallout 3.
This really makes me realize how I wouldn’t say luck because I still have epilepsy but it has gotten good enough to we’re I am perfectly fine once I wake up and am ok enough to play football with them
Got diagnosed at 18/19 I have tonic clonic and it yearly rather than daily or weekly. Sometimes I feel like it's harder than often as I gain independence and then loose it again. Also I've a appointment for next week and I'll see if I have focal seizures now.
That’s EXACTLY what it’s like for me. Started at 18 as well, and every time I feel like I’ve gotten them under control for like a year, it happens again. It happened again last week for me.
@@zahrahahmed1231 yeah I'm nearly my year done. Hopefully get my little plastic cards back and can drive. Let's she how long it last this time. Last time it was 3months. Ugh
I am aimless now...i did not say this to my teachers also... today a teacher asked a question and when I said I forgot he looked and said you need to be shameful for this....have you any sense of shy ?? He asked like that i hurted more because of my inability and lack of memory power i can't memorize as i did in my past it...when i express it to my parents they scolds me and says not to use phone....they are not understanding that my brain deeply affected by this....at public places people are looking me like seeing a mental guy because of the lack of my facial expressions and my foot is trembling while walking
I 😢 got dignose PTSD and grandmal sezuire 😔 after I passed away from my brain 🧠 tumor surgery 2 years ago and they dignose with bipolar and psychosis schizophrenia but I'm blessed to see 25 this year but I just be scared of My sezuire sometimes
This is a really scary thing to have. My son has epilepsy and I would take it from him if I could. I'm so sorry for those of u that have this disorder.
I am doing a zoom epilepsy support group (attending not leading) and have been before sometimes it helps. I found it on the epilepsy foundation website also on there when I was younger I went to camp spike and wave which all campers have seizures, it’s normal and you can connect. :)
I'm 5 years epileptic. I've been taking medication for over a year. In fact in lockdown 2021 once I had my first absence I noticed there were multiple types. over on my twitter I do epilepsy tweets and also talk about my experience. Really though absence is said to be a few seconds mine has lasted an hour. I hate thinking back on the fact of being unconscious for an hour. #EpilepsyAwareness is important. 💜 Help anyone with epilepsy. I care for those out there like me. I know my voice sounds soft with confusion when I come out of them. I struggle to know if I'll have a seizure. for headaches I think when it's at the back I worry a little. Due to scar tissue, which was stretched as I grew, I believe that's why it hurts so much. I was born with fluid on my brain and when it got removed it left scar tissue. I spent 9 weeks in paderborn hospital.
I’ve had epilepsy since I was 4 and mild cerebral palsy. I could be wrong but I think it might have to do with been born 2 weeks late. The abillical cord was already broken b4 I was born and my parents were only 18 and 19 and mum did and still does loved to party a lot. Every time there was a argument in the house and my epilepsy was mentioned During my childhood I blamed myself and the epilepsy on the reasons like. 1. Why my mum wouldn’t get a job 2. Why my dad turned out to be grouchy instead mr happy Chappy 3. Why I shouldn’t get a job 4. Why no one believes on wat I tell them and so on. It went that bad that by the time i was 19 going on 20 I was close to suicidal . But I wanted to talked to my specialist about how to try and get a job. Not only for getting more dosh but experience wat the world is really about like show people that us epileptic and any other disability people are no different from people that don’t have a disability. My specialist found a place called sound works which is called forest personnel now they helped me look for work if my specialist hadn’t found the place I would of jumped out of his building so I’m thanking him for everything.
I started having seizures in my sleep when I was 18, my first memory. Doctors said i was having wakeful sleeping events...smh. I had my first grand mal in bathroom at work almost 2 years ago, I had a statis in oct 2022...So far meds have kept me seizure free for a year, but geez, I started late.
Ive had occasional gm seizures for the last ~ 8 years. Im now 60 yo.. They are always wo warning. I went 4 years wo one then had one at work at a very intense warehouse job. I believe this condition was caused by a MRSA infection that got into the spinal cord and possibly brain. After a week of IV antibiotics I felt completely recovered but then had a seizure ~ 8 months later..
I had epilepsy for 14 years but by the grace of God Jesus Christ healed me completely of it no symptoms no partial seizures no warnings no spells or smells this is attainable in Christ just give your heart to him and pray it out I promise you the Lord wants you healed!!!!!
The 'Meds' for it just knacker me out tbh. Wobbly & that 'Keppra Rage' has got me into a fair few scrapes. Was never like that before!! + Them Nocturnal Seizures are Mad.. Sleepwalking/Wandering about!! Worried it's early Dementia etc :-(
@@Sunshine-yl4vx= Aye, have tried that or products containing it. Rarely take Med's anymore as was put on Zebinix aswell + Clobezam. It's too much ya know, but cheers for advice.✌ (Neuro' replaced Keppra for Brivatiracetam)
I have Epilepsy. My neurologist tried everything, the meds didn't work and had the worst side effects. So we tried MMJ and I've been on that ever since. As soon as I got off the seizure meds, I started losing weight, I have more energy, I don't sleep 12 hours a day, and the seizures started getting fewer and farther between. My last one was in November 2020. I've had it since I was 11, but my mother was convinced that I was satanic. She blamed heavy metal for my being diagnosed with it. Turned out, I developed it when I hit puberty due to the fact that that idiot woman wanted so badly for me to be a clone of her and my sister that she drugged me up on Ritalin when I was 6 and never even had me tested for ADHD. I no longer speak with that woman because of the hell she put me through.
I have tonic clonic seizures with status epilepticus. I don't come out of my seizures until emergency services are shoving needles into my arms. At least I get the aura and know when they are coming.
@Mary Austin is I have since discovered that it isn't status epilepticus. What I have is pre and Postictal State seizures and while that's still not good, it's better than Status Epilepticus. It's not all bad, I start my seizures with a strobe light and feeling high. All I need is to play some AC/DC and the party is on in my head.
My brother passed from having grand mal seizures otherwise known as status epilepticus many years ago. My sister had seizures with aura but no more, after taking some plant-based supplements for about 3 months. I can help if you want.
Most jobs, are possible for people with epilepsy. It all depends on things like their seizure type, seizure frequency, and any health and safety risks. We have information on the work section of our website to help people who are looking for work. www.epilepsy.org.uk/living/work
Bless you dr osoria channel keep on the good work you have been doing and thanks also for curing me off this disease you are truly a God sent towards humanity I appreciate you sir #drosoria
Bless you dr osoria channel keep on the good work you have been doing and thanks also for curing me off this disease you are truly a God sent towards humanity I appreciate you sir
Cleveland Clinic in Cleveland, Ohio Mayo Clinic in Rochester, Minnesota In the US, health insurance that covers treatment at the necessary epilepsy centers determines our seizure control. If your seizures are not controlled, get a second opinion at one of these locations. One, no matter what epileptologist sees you, the team will have epileptologists with twenty years of experience in controlling epileptic seizures involved. Two, these epileptologists focused on epilepsy during their residency instead of the much broader neurology. Three, these level four epilepsy centers are composed of teams of epileptologists that use their hospitals to consider other health conditions that may affect epilepsy. Yes, neurologists can help some. However, the rest of us require a team of epileptologists with experience and have hospitals as a resource. Unfortunately, neurologists or epileptologists at other hospitals will confidently tell you there is nothing else that can be done or to consider surgery. If you have the right insurance, get your second opinion from the hospital in the specific city above.
I have epilepsy, sine 8 .. I’m. 21 almost 22 been going to doctors Mayo Clinic’s ambulance seems like since it’s the brain I believe they afraid to work on that than breast liver heart kidney most of the time you can give somebody a heart not a brain so that’s why no cure. So if it will be YEARS!!!
@@cat_goose9592 I'm with the epilepsy foundation and an epileptic myself. There is always a chance they will come back. I know someone who was 40yrs free had one and died
Epilepsy is so scary, especially when you have them in your sleep, I cant tell anyone how many times I've had a seizure and peed myself and woke up and was changed while my bf explained what happened, after they happen my body aches so bad, and all I wanna do is sleep, they happen for hours at a time and it sucks having them for 12+ hours, sometimes my body after goes limp for a small amount of time, its hard retaining memory, the depression and anxiety from this disorder is scary. I got diagnosed when I was 17, im 21. Idk anyone with epilepsy and no one ik will ever understand it but im thankful for the people who are here for me thru them.
How do you work? I have grand mals every so often (mainly in my sleep) and petit mals almost daily sometimes multiple times a day. I've been homeless multiple times. I have applied for disability but have been rejected after a year of waiting and struggling getting to appointments. I haven't found a medication that makes them better, only worse.
@Dorris Tammy how can I have this kind of herbs I'm from Philippines my 6months old child got epilepsy it so serious I don't know what I had to do.i very tired to think why my child got like this epilepsy ?
@@jamesmcquade453 = Amen.. Got 0 points for PIP!! Even with 2 Doctors/Neurologist letters!! Had seizures in Work & don't know how people manage to hold down a steady job tbh..! All the Best anyway.
I had a lawyers receptionist tell me it’s hard to prove that it effects work in court thats why lawyers don’t like these cases because of that. doesn’t really prevent you from work they say I beg to differ luckily for me found the right meds. Good luck to you all.
May GOD be with you dear one.
And every person with this condition. Our prayers with you🤲
I like hearing other people explaining their lives with epilepsy cuz I feel like I really connect. Since being blessed (yea right lol) with epilepsy 2 months before I graduated high school in 2006, I have yet to meet another person with the same problem. My friends and family have been there for me since the beginning and yet, it's so hard to try to explain it to them. Do I know when I'm about to seize and if I do, how does it feel? What about during or afterwards? So badly I want to tell them everything but it's so hard to describe it that I have a hard time finding the perfect words. I LOVE it that these amazing people are here to help others through this.
@Dorris Tammy shut up. there is not cure for epilepsy.
I understand completely. It’s such a misunderstood illness. I also have yet to find a person who experience exactly what I do. However I believe we all ( epileptics/ seizure having ppl ) accept one another’s experience with understanding and empathy. There is a comfort/ belonging/ empowerment in hearing others stories. It’s hard to explain.
I have it as well, I was diagnosed several years ago and Im just now considering listening to other peoples stories. I so wish I did earlier so I didn’t feel so alone
@@real-mars-art Hi, any of you guys wanna connect?
Had epilepsy for 13 years now, diagnosed at 16. Over time one gets "used" to the new changes in life. And it's kind of frustrating to be honest. So I'm glad I came across this, since I finally feel that feeling of connection of a "finally others who understand" and not feel alone. Because even though my friends and family know of it, no matter how I explain of how it feels, how sick I feel after a seizure, how much it hurts when biting my tongue and when my entire body hurts. How scared I feel when the medicine starts to not work and have to get another medication added as well with higher dosage. They won't be able to understand.
I had seizures mostly at night, only once during the day. I still remember the first seizure my family ever saw before diagnosis, "waking up" to see my mom on her knees crying next to my bed, then going back to "sleep"(another seizure) and wake up to now to both mom and dad. Never in my life had I ever seen the expression they had that time. After that day, mom would check on me various times at night.
My bf and I both have epilepsy. It’s bonded us so much and while mine is very different from his, we share a connection.
I was diagnosed at 33 years old. Will be 40 in a month. So far 11 months seizure free. Nocturnal seizures I have mostly. Thankful for this vid and much Love to U All!!!!!!
I was diagnosed with epilepsy 3 days ago, it’s terrifying and really helpful to hear the stories. Thank you
Really glad you found the video helpful. If you ever want to talk to someone about your recent diagnosis, you can ring our helpline. We also share the stories from people with epilepsy on our website which you may be interested in
www.epilepsy.org.uk/info/support/helpline
www.epilepsy.org.uk/my-story
This video was really helpful. Thank you to all who made it happen. ❤
I just cant look at these with out crying. I was diagnosed two years ago
@Dorris Tammy Are you an idiot stop spreading misinformation herbs cant do any of that medicine from doctors will get you better not some stupid herbs.
Dorris Tanmy can DO ONE... Enough to trigger a Seizure or are you one of them 'BOTS'.
Same lol. I was diagnosed 12 years ago but I’ve never had a conversation like this with someone else with epilepsy. It’s quite moving to watch.
I just got diagnosed today at 18. It’s nice to hear others stories
I just got diagnosed today at 17 :/
It’s so nice to hear from other people and their experiences. Btw I also have epilepsy.
@Mary Austin is There is no cure for epilepsy.
@Mary Austin is yes, there is no cure for epilepsy!!
@@danielledewitt1 bj***
Will Rex Dunn same here I was born with it
@@angelr6782 Don't lose hope all will be well. write me now on whatsapp for help, cure and solution +7926004771
I have been living with epilepsy for 30 years now, just had my last seizure this October, just when you thought you were improving.. suddenly a grandmal seizure happens and that feels devastating but I guess, I already got used to it. I dont know anybody who has epilepsy here so I feel connected with the people who shared with this video. Thank you for sharing your experiences, makes me feel that i am not alone.
Diagnosted at 14, now I am 32! HAPPY WITH EPI ❤ It was hard to be labeled, but it is your brain and your choice of to be happy!
My tips:
1) SLEEP! Always most important
2) NO ALCOHOL, respect your brain
3) REDUCE SCREEN TIME, let your brain get bored, go for a walk, enjoy nature or even streets
4) BE POSITIVE, you can find a way how to live with it and reduce it, I have 2 healthy kids, full life and peace and you can get it too ❤
I was diagnosed when I was 13 and now I’m 26. My mother found me underwater in the bathtub and that’s how I was found to have them...long story.
I have 3 kinds of seizures, but my tonic-clonics were controlled...until yesterday. Now they’re back worse than ever. I can’t drive and never will. I’m so upset because I’m about to graduate college. 😢
@Goher Ahmed Don't lose hope all will be well. write me now on whatsapp for help, cure and solution +7926004771
You've got this! Epilepsy wont end your life and I truly believe in you!
You on Keppra? Just curious, but can empathise anyway.. It's horrible indeed/Bless.
I just recently woke up in an ambulance twice in less than 2 days because of 2 Tonic Clonic Seizures. Now looking into this subject makes the last few years all make sense. Just waiting now to get to a neurologist. I hope anyone dealing with this in any way can find the most comfortable path to travel on your journey through life. Thank you for sharing this.
I had my first tonic clonic seizure that I know of 13 years ago. They’re the worst thing I’ve ever experienced and changed my life for the worst. I’m a grown adult has to live with my parents, can’t drive and I’m limited physically because the seizures rip my muscles and sometimes hit my head on things on the way down. I get an aura but just like the one lady. I don’t have enough time to get to a safe place. If you have epilepsy like me. Be safe
I'm 20 and I was diagnosed last week it's been hard but watching this makes me feel better knowing that I'm not alone💜
I was diagnosed with epilepsy when I was 3 months old & the only thing that helped me was an epilepsy camp but now that I'm older & can't go now it just helps me remembering all those other kid who are going through it too or just remembering that I'm not the only one out there with the condition to.
Yeah this video is so helpful. I just got diagnosed with epilepsy today. I am kinda shocked. I am relieved to have finally found out after waiting for loads of years.
Life was grand as a toddler, going on weekend trips with my parents, playing with my friends and listening to grandma as she shared one inspiring story after another about the good old days. What more could a child ask for than the love and comfort of her family?
Surprising life quickly took a turn for the worst and that pathway I was destined to journey became rocky as traumatic obstacles crossed my life path and took me on a different journey. A journey, one no child should have to experience.
The Beginning
At the age of five, I had contracted a sore throat and an ear infection. My mother had brought me to the doctor’s office that evening and the pediatrician had put me on penicillin and told my mother to have me rest in bed. No one thought much of it at the time.
I rested in bed and I was on the penicillin for about ten days. On the tenth night when she put me to bed, my lips were more red than usual. The next morning at about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She walked into my bedroom to find me in my bed turning blue and having a grand mal seizure. This was the first time I ever experienced a seizure.
ruclips.net/channel/UCOzqYUgTHdJqF-XuNH2qt5w
I’m glad to see others share their journey I struggle with this newness and life is sooo difficult now I’m doing my best to cope as much as possible in a positive way. I can’t even watch the entire video because I’m just so choke up listening to this. I’m so scared of the unknown. I wish I had someone to talk to about it that knows like I do. I’m scared to share certain things with the people that love me because I don’t want anyone to look at me in a different way😢
I’ got diagnosed with epilepsy 28 years ago. I wake up and feel like someone just beat me up and I don’t remember it. I also have osteogenesis imperfectia and have broken many bones having seizures, it can be hard.
I’m 29 I have had it since I was 6 I take tegretol
I’ve had epilepsy and mild cerebral palsy since I was 4
@@hillz405 = That stuff overdosed on, but it helped I'm sure. Got a 'Drunken feeling' from Carbamazepine. As long as it helps you though.. All the best..
I got diagnosed with epilepsy when I was 18 months old.I am now 13 and it has many downsides other then just seizures.I have multiple of the seizures listed in this video.I am happy that someone can relate
You should ask if surgery is a possibility.
I had my Seizure Tumor surgically removed when I was 8.
@@robertdeffenbaugh9004 I have already had both of my tumors removed. Now I have epilepsy that is not caused by a tumor.
I was diagnosed with complex generalized epilepsy at 17 years old in 1994. The constant of it in all degrees...brings the purple folks together. 😁 if our seizures are uncontrollable...so our facts are too.
This is so touching for me... I've been diagnosed with jme ( juvenile myoclonic epilepsy) last year with four triggers of not eating sleeping too much too much caffeine or stress, it started when i was 15 1/2 i dropped on the floor thought nothing of it didn't have any body jerks or seizures. That was until i hit 19 i had more body jerks that came out of nowhere, then i had my first seizure. I went to a hospital to get an eeg test it didn't show anything back then, and kept having those episodes once or twice at most every month. I "treated" myself with booze also drugs to forget but would always come back, where i used to live everyone knew i had seizures and kept looking wishper to eachother "that's the girl" . I'd wear black clothes huge hoodies so no one would notice me and avoid people asking if i was okay/ what happened i wanted to avoid the sympathies or worries it made me feel uncomfortable also agitated i just wanted to be left alone, did not go out during the day only at night to get my fix. My mom told me to go live elsewhere, because she couldn't handle my seizures and my addiction eventually she moved out of her home telling me the main reason why she moved is because i gave her a bad reputation because of my seizures, i ended up moving in with my dad got sober. I'm taking medications i still suffer seizures once in awhile the doses had to become more potent several times, it made my dad depressed and felt like it was my fault. I now feel allot better, but i'm constantly afraid that my episodes might show up out of nowhere. Therefore i am always afraid of going out to socialize, do little tasks or simply going for a walk, it's embarrassing for me to accept who i am and what i have i feel like i'm not normal. To this day i am still learning to love myself and to realize this is not my fault. This video is helping me allot to realize there's always someone out there that understands it helps me everyday to gain self confidence. To the people in this video i want to thank them for being supporting, and open to talk about they're expiriences, also normalize epilepsy to help others like me it's very inspiring. ❤️
Same here, I was diagnosed with epilepsy, mostly absence seizures when I was 7. When I 16 it mutated to jme after I started having body jerks in arms and legs. I have the same triggers, and as a teenager and now uni student it's a lot, cause all my life is studying late, stress, coffee to stay awake in class and wanting to drink and party. I've been changing dosis this month cause i started having more jerks and absences after my rutine eeg showed those things again. Now I have all this conflicting feeling of being thankfull that I have the treatment, but also in a rebel juvenile that wants to drink and party and sleep late and do all that without having myoclonies all morning the next day, the mugs in my house and my old phone are the victims of that mostly. I don't want to have breakfast because i spill things but have to cause not doing it triggers my seizures.
So yeah, conflicted with my rithm of life and my triggers is a struggle, cause beyond partying and drinking, which I've always been responsible with my epilepsy, I go to bed late cause i have to study and read and work, and stress is an everyday thing in uni
I was diagnosed with epilepsy at age 12 and now I’m 21. I first had absence and then a year later I started having tonic-clonic, it’s that type of thing where no one understands unless they’re going through it. I always try to educate as much as I can which makes me happy. When I was in high school especially, I did not know anyone else who had epilepsy, it’s a very lonely feeling. My neurologist recommended me to an epilepsy camp provided from the epilepsy foundation. I was 15 when I first went and the age limit was 19. Best years of my life. If you are a parent especially, I definitely recommend putting your kid in an environment where they feel like they’re different. I made life long friends and I learned from camp that my epilepsy does not define me. I am more open about it and I no longer care what people say if they make jokes about it. Seriously, one of the best decisions I made in my life going to camp. Of course covid kind of messed things up, but once things start running again definitely go to camp or put your kids in camp or just surround yourself around people who know. Sometimes I feel my epilepsy was a blessing in disguise, I’ve learned to appreciate life more and grow a lot quicker than people my age.
Where they feel like they are not different*
It's a nightmare & tends to strike randomly.. Being born with it I spose isn't as bad as getting diagnosed in Teen/Adult yrs because it's more of a shock surely, but either's not ideal of course. Thought had a Brain Tumour, but they put it down to Hippocampus on the left being slightly enlarged! Get the Absent ones most! With a horrible De-Ja-Vu like feeling which leaves me feeling weak & nauseated. Bless ALL who have it anyway...
I got diagnosed when I was 14 and have tonic clonic and absences seizures.
I noticed while logging down my seizures that there were similarities. At night with cloudy weather & fog. The atmosphere has electricity in it and we are the ones who suffer as a result to a seizure.
I was diagnosed with epilepsy when I was 29. I had a stressful job at the time, and had my first seizure at work (focal seizure) that lasted maybe 10 seconds or so. I went to the doctor and was told maybe it was a panic attack related to my stressful job. It took me going back to the doctor multiple times before they did tests and determined I had epilepsy. I do have auras right before the focal seizures. I experience deja vu and then become confused and disoriented. It's very scary and frustrating... I worry that one day my seizures will get worse if I can't find the right meds or routine. It's all so unpredictable.
The worse part about having epilepsy is that you can't live your life the way you want to and it's very frustrating I feel like I would never get rid of it
If you have WhatsApp, then message me. We can talk about getting rid of it. My sister has been seizure-free for 16 months and counting. She consumed a plant-based stem cells supplement for 3 months. I can help.
Diagnosed with Epilepsy three months after I contracted Covid. Absence of mind at 64. I have no clue when they occur or what going on. Rather peaceful from recordings. Gone with the wind, then back. Truly Blessed. Witness worst.
Wow hearing these let's me know I'm not going crazy . I have tonic clinic seizures sigh. Adjusting is hard sigh
Epilepsy has fucked up my life!
Oh man I've had complex partial seizures while riding my bike and riding horses, managing to stay on and keep riding. When I wake up I have no idea who I am or where I am. Then trying to gather myself and figure out how to get home alone is horrible. Having tonic clonic seizures in public is the worst as I often wet myself and hate waking up to people panicking and having to deal with ambulances, and then figure out how to get home. Living without a licence is so hard and I've received so much discrimination socially and professionally. I was unable to study or work for all of my 20s because of the seizures and lack of memory and there's so much of my life that I don't remember. I almost made it to 11 months seizure free this month, thinking id finally beat it and would get my licence back. Two days before my neuro appt I had a seizure which took me three days to recover from. I have no idea how I used to manage having them daily, weekly and monthly while still having somewhat of a life (if you can call it that). People have no idea how terrifying it is and they take so much for granted. On the plus side, when I was diagnosed as a teenager I was headed down a very dark path and it forced me to change my life. I have no idea where I would be now if it wasn't for that benefit, and all the loses that have resulted from my diagnosis.
I was diagnosed with Photosensitive Epilepsy when I was 2 and had my Seizure Tumor surgically removed when I was 8.
Flashing lights don’t bother me but if I watch it for too long it can start to hurt.
I’ve learned that the hard way with a lighting glitch in Fallout 3.
This really makes me realize how I wouldn’t say luck because I still have epilepsy but it has gotten good enough to we’re I am perfectly fine once I wake up and am ok enough to play football with them
Got diagnosed at 18/19 I have tonic clonic and it yearly rather than daily or weekly. Sometimes I feel like it's harder than often as I gain independence and then loose it again. Also I've a appointment for next week and I'll see if I have focal seizures now.
That’s EXACTLY what it’s like for me. Started at 18 as well, and every time I feel like I’ve gotten them under control for like a year, it happens again. It happened again last week for me.
@@zahrahahmed1231 yeah I'm nearly my year done. Hopefully get my little plastic cards back and can drive. Let's she how long it last this time. Last time it was 3months. Ugh
@Dorris Tammy dr who? Hahaha
I am aimless now...i did not say this to my teachers also... today a teacher asked a question and when I said I forgot he looked and said you need to be shameful for this....have you any sense of shy ?? He asked like that i hurted more because of my inability and lack of memory power i can't memorize as i did in my past it...when i express it to my parents they scolds me and says not to use phone....they are not understanding that my brain deeply affected by this....at public places people are looking me like seeing a mental guy because of the lack of my facial expressions and my foot is trembling while walking
I was diagnosed with epilepsy when I was 3yo amazing video
3 years old? Do you still have it? If yes, please message me.
I 😢 got dignose PTSD and grandmal sezuire 😔 after I passed away from my brain 🧠 tumor surgery 2 years ago and they dignose with bipolar and psychosis schizophrenia but I'm blessed to see 25 this year but I just be scared of My sezuire sometimes
This is a really scary thing to have. My son has epilepsy and I would take it from him if I could. I'm so sorry for those of u that have this disorder.
I was diagnosed when i was 5
I have epilepsy and I don’t know ANYONE that has it besides my stepdad I would love to know more people my age 14 or just anyone
I am doing a zoom epilepsy support group (attending not leading) and have been before sometimes it helps. I found it on the epilepsy foundation website also on there when I was younger I went to camp spike and wave which all campers have seizures, it’s normal and you can connect. :)
@Lena zelner Don't lose hope all will be well. write me now on whatsapp for help, cure and solution +7926004771
@Dorris Tammy You cant cure epilepsy idiot
I'm 5 years epileptic. I've been taking medication for over a year. In fact in lockdown 2021 once I had my first absence I noticed there were multiple types. over on my twitter I do epilepsy tweets and also talk about my experience. Really though absence is said to be a few seconds mine has lasted an hour. I hate thinking back on the fact of being unconscious for an hour. #EpilepsyAwareness is important. 💜 Help anyone with epilepsy. I care for those out there like me. I know my voice sounds soft with confusion when I come out of them. I struggle to know if I'll have a seizure. for headaches I think when it's at the back I worry a little. Due to scar tissue, which was stretched as I grew, I believe that's why it hurts so much. I was born with fluid on my brain and when it got removed it left scar tissue. I spent 9 weeks in paderborn hospital.
I’ve had epilepsy since I was 4 and mild cerebral palsy. I could be wrong but I think it might have to do with been born 2 weeks late. The abillical cord was already broken b4 I was born and my parents were only 18 and 19 and mum did and still does loved to party a lot. Every time there was a argument in the house and my epilepsy was mentioned During my childhood I blamed myself and the epilepsy on the reasons like. 1. Why my mum wouldn’t get a job 2. Why my dad turned out to be grouchy instead mr happy Chappy 3. Why I shouldn’t get a job 4. Why no one believes on wat I tell them and so on. It went that bad that by the time i was 19 going on 20 I was close to suicidal . But I wanted to talked to my specialist about how to try and get a job. Not only for getting more dosh but experience wat the world is really about like show people that us epileptic and any other disability people are no different from people that don’t have a disability. My specialist found a place called sound works which is called forest personnel now they helped me look for work if my specialist hadn’t found the place I would of jumped out of his building so I’m thanking him for everything.
I started having seizures in my sleep when I was 18, my first memory. Doctors said i was having wakeful sleeping events...smh. I had my first grand mal in bathroom at work almost 2 years ago, I had a statis in oct 2022...So far meds have kept me seizure free for a year, but geez, I started late.
Ive had occasional gm seizures for the last ~ 8 years. Im now 60 yo.. They are always wo warning. I went 4 years wo one then had one at work at a very intense warehouse job. I believe this condition was caused by a MRSA infection that got into the spinal cord and possibly brain. After a week of IV antibiotics I felt completely recovered but then had a seizure ~ 8 months later..
I had epilepsy for 14 years but by the grace of God Jesus Christ healed me completely of it no symptoms no partial seizures no warnings no spells or smells this is attainable in Christ just give your heart to him and pray it out I promise you the Lord wants you healed!!!!!
That’s great!! Gods good!! Are you still being careful eg taking meds, sleeping well etc
@@temis6639 no i don’t take any medication And when I don’t get enough rest I still don’t have seizures
People are scared of me and I've lost friends
I've had the same problem but I figure screw it. Ppl treat u differently because of something u can't help, obviously not very good friends.
@@saraturner3372 Don't lose hope all will be well. write me now on whatsapp for help, cure and solution +7926004771
Aaawh,so sorry dear,those were never true friends to begin with.
About 30 years with Epilepsy for me so far. I hoped 25 years ago a cure would have been found.
The 'Meds' for it just knacker me out tbh. Wobbly & that 'Keppra Rage' has got me into a fair few scrapes. Was never like that before!! + Them Nocturnal Seizures are Mad.. Sleepwalking/Wandering about!! Worried it's early Dementia etc :-(
Try to get off kepra and take something else. Take MCT C8 OIL for your memory and to gain better seizure control.
@@Sunshine-yl4vx= Aye, have tried that or products containing it. Rarely take Med's anymore as was put on Zebinix aswell + Clobezam. It's too much ya know, but cheers for advice.✌ (Neuro' replaced Keppra for Brivatiracetam)
@@nickycotton6137 I also Briveracetam
@@princejohnson2053 = Awe yeah. Seems to keep the Seizure countdown?
I have Epilepsy. My neurologist tried everything, the meds didn't work and had the worst side effects. So we tried MMJ and I've been on that ever since. As soon as I got off the seizure meds, I started losing weight, I have more energy, I don't sleep 12 hours a day, and the seizures started getting fewer and farther between. My last one was in November 2020. I've had it since I was 11, but my mother was convinced that I was satanic. She blamed heavy metal for my being diagnosed with it. Turned out, I developed it when I hit puberty due to the fact that that idiot woman wanted so badly for me to be a clone of her and my sister that she drugged me up on Ritalin when I was 6 and never even had me tested for ADHD. I no longer speak with that woman because of the hell she put me through.
I have tonic clonic seizures with status epilepticus. I don't come out of my seizures until emergency services are shoving needles into my arms. At least I get the aura and know when they are coming.
@Mary Austin is I have since discovered that it isn't status epilepticus. What I have is pre and Postictal State seizures and while that's still not good, it's better than Status Epilepticus. It's not all bad, I start my seizures with a strobe light and feeling high. All I need is to play some AC/DC and the party is on in my head.
call / WhatsApp +22965212243 for effective and definitive treatment until total healing 100% natural
call / WhatsApp +22965212243 for effective and definitive treatment until total healing 100% natural
My brother passed from having grand mal seizures otherwise known as status epilepticus many years ago. My sister had seizures with aura but no more, after taking some plant-based supplements for about 3 months. I can help if you want.
I'm just curious what people with epilepsy do for work? It's been very difficult on top of dealing with the physical issues from it.
Hi David
Most jobs, are possible for people with epilepsy. It all depends on things like their seizure type, seizure frequency, and any health and safety risks. We have information on the work section of our website to help people who are looking for work. www.epilepsy.org.uk/living/work
Regards
Diane
Helpline Team
Bless you dr osoria channel keep on the good work you have been doing and thanks also for curing me off this disease you are truly a God sent towards humanity I appreciate you sir #drosoria
Does it make you notcsee when you do something right or wrong
I hve epilepsy n I’m on medication I just had one last week n I forgot a lot of stuff
Let's talk on how to get rid of that epilepsy please. Thanks.
Bless you dr osoria channel keep on the good work you have been doing and thanks also for curing me off this disease you are truly a God sent towards humanity I appreciate you sir
That dude looks like a British Scottie Pippen
Wonder how they test for something like this.
I got diagnosed when I was 9
You all go search and subscribe to Dr Omar youtube channel via(Dr Omar meds)
Great meds for epillepsy/seizures he got
I have had seizure for 17 years. I am of these seizure 😢
Cleveland Clinic in Cleveland, Ohio
Mayo Clinic in Rochester, Minnesota
In the US, health insurance that covers treatment at the necessary epilepsy centers determines our seizure control. If your seizures are not controlled, get a second opinion at one of these locations.
One, no matter what epileptologist sees you, the team will have epileptologists with twenty years of experience in controlling epileptic seizures involved. Two, these epileptologists focused on epilepsy during their residency instead of the much broader neurology. Three, these level four epilepsy centers are composed of teams of epileptologists that use their hospitals to consider other health conditions that may affect epilepsy.
Yes, neurologists can help some. However, the rest of us require a team of epileptologists with experience and have hospitals as a resource.
Unfortunately, neurologists or epileptologists at other hospitals will confidently tell you there is nothing else that can be done or to consider surgery. If you have the right insurance, get your second opinion from the hospital in the specific city above.
I have Epilepsy and not long had a Focal seizure I'm so
I have grand mal seizures and go status epilepticus alot...... epilepsy is an absolutely horrible disease....
I have epilepsy, sine 8 .. I’m. 21 almost 22 been going to doctors Mayo Clinic’s ambulance seems like since it’s the brain I believe they afraid to work on that than breast liver heart kidney most of the time you can give somebody a heart not a brain so that’s why no cure. So if it will be YEARS!!!
I have epilepsy too
Lovely
I have epilepsy all my life I know what is like
I’m 28
I have atomic clonic seizures and absence
87,000,000 a day seems a little high?
6:48 💯💯
Hey I am from India....😍
Anyone here my country
I have epilepsy
You all should subscribe to Dr Omar channel on youtube. Am seizures free and completely cured after taking some meds from Dr Omar..
It in pack me
As u get older don’t u grow out of it
you can, my cousin did
@@cat_goose9592 I'm with the epilepsy foundation and an epileptic myself. There is always a chance they will come back. I know someone who was 40yrs free had one and died
@@chanabayla1823 yeah. i meant like as you get older your seizures can stop but there’s always a chance they can come back
@@cat_goose9592 and they can change. This is a very unpredictable illness. Don't fall into a false sense of complacency. Your life could depend on it
I have epilepsy