This is how I deal with my epilepsy
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- Опубликовано: 23 ноя 2019
- What's does epilepsy feel like?:
Patrick was diagnosed with epilepsy in 1991. He explains what happens before and after a seizure, and what people have told him happens in the middle of his seizures. He has no memory himself of what happens. Patrick has gone as long as 10 years in between seizures but has since had an increase in seizures in the last couple of years. He admits he has not met many other people who have epilepsy and struggle with seizures.
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i don’t even know this guy but i feel like it’s just him & i sitting and talking about our seizures. i truly love this video
So do i.
This is the best description I’ve ever heard of how it feels. I was diagnosed when I was 22 and I’m 34 now so it’s been a few years, and some of that time was very unpleasant. Listening to him makes me feel sad and happy at the same time, it’s sad because it’s just such a horrible thing, but it’s nice to hear someone else who deals with the same things, and be able to understand exactly what he means. You do feel alone in a way, even though you know you’re not, when none of your friends have epilepsy it’s hard to try and explain it and in some ways it can be quite embarrassing. Waking up on the floor surrounded by people is not a nice experience. But it’s really good to hear him saying he doesn’t let it rule his life, it makes me realise I don’t have to let it rule mine either.
Gabbapentin is saving my life
I have this same grand mal seizure problem. Severity level, back and shoulder problem posture problem the auras and such. I just recently bit the right side little part of my tounge off as well. 😪 and yes the lonely feeling. I feel we should all just start reaching out more like they’re doing here. And try finding more of each other to be around. Environment understanding and such. Comfort just like others do for themselves, where we I believe tend to make the choice to spend more time on others before paying our own self attention.
God bless you
I'm epileptic
It feels like you're being electrocuted and feel like you're vomiting, gasping for breath
When I wake, I feel like I have a hangover
Literally like I'm learning to walk again
At 3 months old I was diagnosed with epilepsy and attention dificit disorder and intellectual deficit disorder I'm 28 will be 29 on the 13 of October it's been hard with people bullying me about my seizures and them saying I'm faking it and I'm not so it's hard making friends and I understand him a lot
The deja vu, the squeezing feeling, the soreness after the seizure. After the soreness, it's exhaustion. Those are what I feel when I get mine.
To the people who have helped me, thank you and I'm sorry. I don't mean to be an inconvenience.
U shouldn't apologize for something like that it's not like u can control it
YS THE DEJA VU OMG
Such a wonderful and articulate way with words. I just had my first seizure 5 days ago and lost part of my tongue. Even if it doesn’t happen again, this was very comforting. Extremely bizarre and scary stuff - I have nothing but respect and empathy for those with epilepsy. Keep on trucking.
Ive suffered with Temporal Lobe Epilepsy since i was 10yrs old, am now 38. Sometimes focal seizures, sometimes starting as focal seizures and spreading to become Tonic Clonic.
Has had such an effect on my life.
But, i am NOT giving up and letting it control my life
One of my friends from back in the day just passed away from injuries sustained during a seizure attack. He was alone at home when it happened, usually he'd feel the seizure coming and take himself to the nearest clinic, but this time it must have hit him when he was asleep and therefore could not preempt it. Rest in Peace Edgar.
Did he hit his head or was it suffocation
@@nothanks6931 he hit his head
Frightening because I've been in the same situation and I also live alone. Sorry for your loss.
@@chilipepper71 thanks
What's scary is I only have seizures in my sleep and they are so dangerous. Just happy my girlfriend has been able to save my life so many times
44 years old now and just had another one a couple weeks ago. Had it since a teen but they've spread out over time. The description in this video is pretty spot on. Deja vu and auras suck. Just commenting to say F*** Epilepsy. I know I'm not alone and the best thing I can suggest is don't live in fear. You can't. I have to tell myself that everyday. I'm blessed with so much because I continue to climb the mountain. I don't have them daily , thankfully and my heart goes out to people that have it worse then me. Hopefully my comment helps someone reading this. You're not alone 🤙
Thanks 😊
@@blackParrot9615ditto!
Were you prescribed Keppra?
“Im not alone” this guy knows exactly how to put it to words. Thank you so much
He seems like a very nice man wish him good health.
Me too
I'm seeing this 3 years after this was made. I hope the best for you. I pray your seizures stop immediately and your life is blessed beyond measure ❤️
This channel is about to blow up
….when?
Sadly it didn't
I call my “Aura” spicy deja vu, because it’s more intense than regular deja vu. I’ve recently been diagnosed in February with tonic-clonic nocturnal seizures and it’s nice to hear others perspectives to help understand myself. I find it so weird just experiencing the before and after, and being told by others what happened and not even really knowing myself. And afterwards the pain is like being hit by a bus! Thankyou for sharing 💕
I just call mine mad dejavu, ive had them all my life without being diagnosed until 32yo, they got to a stage where i would be able to tell people what's about to happen next, if i was able to communicate during. Ive recently realised i have tonic clonic in my sleep too. Either that or i have reoccurring dreams of riding some crazy horse or something. 😏 haha
Biting my tongue is the worst.
@@dazparry1580 I had the spicy deja vu my whole life and thought not much of it, then it started getting worse around the time I developed epilepsy! The worst part of it is I was watching a brand new tv show and was bored bc I felt like I had already watched it and knew everything that was going to happen!! 😭 it’s almost as if you’ve dreamt it all before, it’s weird af 😂
@@josieunderdown3971 ye i know the feeling. Worst thing was trying to explain these things to people when i didnt know what it was. I used to just get 🙁 or 🙄 faces. But sometimes im able to predict things spontaneously without any strange feeling, just point something out before it happens. That gets 😧or 😳 faces.
@@dazparry1580 yeah I get that, i just kept it to myself, I couldn’t think of a way to explain it to people, I literally thought they’d call me crazy! I felt a bit crazy or like I had some weird gift, I didn’t know that others had it! When I tried people were just like 🤷🏼♀️ I get deja vu too.. but it’s not the same 😂
My triggers are sleep deprivation and being too hot. The feeling I get before is always deja vu, bad taste or random chills.
Gosh I know what he means when he says none of his friends have epilepsy and he wishes he had someone to relate to. This was so well said!
😭😭😭
My sister had epilepsy all her life and sadly passed away in 2017 at the age of 47. Like you she motored on every single day living life despite all she was dealing with. I always admired her for that and I admire you for telling your story and not letting epilepsy define you. God Bless
I was born premature weighing 1 pound, and 10 ounces. Because of this I developed retinopathy of prematurity, causing me to lose all of my sight in my right eye, and most of my site in my left. I decided that blindness was not going to define me as an adult however, I developed epilepsy. I took medication that seemed to control it very well for several years until I got Covid two years ago. Now I have tried several medication‘s, the ketogenic diet, and have even considered surgery. I am trying to get to the place where like my blindness I refuse to let my epilepsy define me. Thank you so much for your words of encouragement.
What caused the passing?
The way he describes it is 100% accurate. I’ve had epilepsy since I was a baby and I used to have absent seizures. Now I have paralysis seizures. Every once in a great while will I have a grand mal seizure. My last known seizure was when I was pregnant and it was scary as hell. They are so exhausting even just the absent ones.
do seizures hurt?
@@susieleong6852 no because the person is unconscious the person will not be able to hear see or feel pain during the seizure but after the seizure is done and the person is recovered they may feel sore tired confused one person described it as though he felt he ran a marathon
Some people feel pain. I certainly do after I have had some.
My son's gf has seizures she screams n gets violent before a seizure is this normal .
Is there medicine to stop seizures? N can everyone take it .
I just had my first seizure yesterday whilst on holiday for my birthday, according to my girlfriend I was out for a minute and a half. I’m still trying to comprehend it and the way I feel about the whole situation today, truly the most terrifying thing I’ve been through and I’m scared of it happening again. I don’t really recall much other than darkness so even though I’m exhausted going to sleep scares me.
How are you doing, now? I just had my first one while on an international flight, but thankfully still close to Japan. I felt awful for inconveniencing my best friends, who insisted they stay with me, and an entire flight. Though I know my friends do not feel inconvenienced but rather they are truly just glad I am okay.
I hope you’re well x
how was your toilet ( motion) couple of days before or that day , did you dehydrate , or you feel acidity , any of these symptoms
The darkness will set you free. I experienced that darkness through both meditation and psychedelics, it’s something worth exploring. I used to be so scared until my last seizure when I truly recognized that I wasn’t the one having the seizure, I was the one experiencing my body having the seizure. After this seizure, my life turned around and many things clicked that hadn’t before.
@@mizzmayhem3685 Despite taking keppra meds, I have been having occasional absence seizures for 8 years. The trigger is frequently - being in a strange or unfamiliar situation, or travelling abroad. Three times I have had one while on a plane, it’s as if my heightened state of expectation spirals into a meltdown. I haven’t stopped travelling though, I just expect the worst, then am pleasantly surprised if it doesn’t happen.
Big storm in the brain. Perfect description. I began having tonic clonic at 16. I have been seizure-free for over 20 years with medication. This video is spot on.
i didn’t have the smells or sounds he described as an aura before, i just saw “cartoons” and a couple seconds would feel like 10min-1hr, with extreme confusion
I started having tonic clonic seizures a little over 2 years ago after I recovered from a brain aneurysm and comments like this always make me feel better and gives me hope I will find the right meds and I'll stop having seizures some day. I had my most recent 2 nights ago, I was lucky I was with my parents and my dad recorded it to send to my specialist and it's crazy! I had no idea what they looked like, from my perspectice I just tense up a but then pass out
@@HexQuesTThi! So the meds you are taking now are not helping?
Hi
Please can you tell what meds you take, that have you seizure free for 20 years? I’ve been on a few different ones over 9 years, but only achieved 10 weeks max without a relapse. 🙏🏻
I appreciate you so much. I'm a Mother of a 19 year old with Grand Mal Seizures. My son is none verbal and autistic. You gave me tremendous in-sight into his experience.
It is different for everyone tho. I will say that. My grand mal lead me to losing all memory. I’ve now lost years of memory. My worst feeling is waking in a hospital knowing I’ve a 2 year old at home. Talking about it while the government screws me has me dying inside. I’m sorry I’m ranting but I just need to see it and at least say it out loud once…
I too suffer from epilepsy and those auras can be pretty scary. Mine occur when I get that deja-vu feeling and my body just completely freezes and my brain starts racing with thoughts as if everything you're thinking are repeats of past auras, and that's exactly what they are. Every time, it's the same memories playing in my head of thoughts before going into a seizure. There's been plenty of times where I'm able to fight off going into full-blown seizure mode when the aura occurs depending on how severe the seizure is. It's very important to take your medication every single day. I am human and I do forget to take my medication even though I have an alarm on my phone to remind me. There's times when I'm super busy and before I know it, there's the aura followed by completely blanking out. My last one left my tongue chewed up and super numb where I couldn't even talk. The next day, the numbness would start going away only to get replaced by annoying pain that doesn't let me talk or eat comfortably.
I had my first seizures today around 6:15 am a if it had been any later I would’ve been driving on my way to work.. so blessed and thankful good kept me
The way he describes this in detail & how he explains everything so peacefully & enthusiastically is from someone who really suffers from it & I appreciate these kinds of videos.
Every person who has episodes/seizures are different, but there is definitely much I can practically relate to here. Thank you, for talking about this!
This video has helped me understand what my 2 year old goes through when he has a seizure. I would love to see a video on here on the parent perspective of raising a child with Epilepsy. I often feel alone in my journey to raise him and make sure he’s well while dealing with the overwhelming emotions I feel myself while seeing him deal with this
Thank you for your input. We will see what we can do!!
bianca roses don’t feel alone I have epilepsy and my parents have always been supportive you are not alone and neither is your son/daughter
I suggest you look up and try CBD oil (hemp oil). It might be "The Cure."
Hey Bianca, there is a Facebook group for support you could join, lots of parents on there, in fact it was created by a parent of a child with seizures. facebook.com/atkinsforseizures/groups/ hope that helps some.
@@saeidakbari4788 tried and tested, doesn’t work I’m afraid 😂
Im thankful for this video. I got recently diagnosed with epilepsy as well… Having a hard time to cope up with it but im so grateful that u shared your experience.. i really admire your courage to speak up for it
i have epilepsy with grand mal seizures so this is the best description of grand mal epilepsy. i could never explain how my seizures went and this guy put it in the best way. everyone is different when it comes to epilepsy
I’m glad he at least said that the “aura” is different for each person. But it is actually a seizure in itself, a simple focal, old name simple partial. And I’m surprised to hear grand mal, I didn’t know people even said that anymore nowadays, instead of tonic clonic. This whole thing should be prefaced with the fact that this is all very different for everyone. And what you described is very different to my seizures.
Absolutely right. I felt relieved when he mentioned a smell. I have the scent of anesthesia or some might say licorice scent.
The best description I've heard. I've been diagnosed with epilepsy since 2016. Had to figure it out. But now I know when the aura comes and get ready
I have just been diagnosed with it, i have all the full blown tonic seizures and what not, and it's good to hear it explained this way. Thank you 🙏 i feel like it goves me slight psychosis when i have my episodes, its scary.
You're right we continue to see stuff over and over again before it happens
You nailed it that’s how I felt before I had a seizure I had grand mal seizures for about 15 years and now I don’t have them anymore and just all I can say is hang in there and it sounds like you’re living a pretty good life
How old were you when you Started / stopped? Started when I was 25 and am now 35. Have maybe 1 a year at this point… thank God
I ended up on life support 6 times in last 2 years. Bad seizures I'm allergic to most meds I have violent reactions. It is not fun 😕. My uncle died in a bar from a seizure. I won't give up
I hope you’re doing well ❤
I had a violent reaction to a medication and my doctor didn't believe me. Ran tests to prove I had PNES instead.
Great video, only recently became full epilepsy, grand mal, I ready have a 3 inch scar on my forehead , but great to see it can be managed and not feared. Keep your belief and strength all impacted by this annoying disorder.
Thank you for sharing? Helps me understand what my daughter goes through! Much appreciated
Thank-you for sharing your experiences. Recently, I had my first seizure. Your calm manner & describing seizures is very helpful. Mil gracias.
I was on Tegretol throughout my childhood for brain seizures. We stopped it when I hit adolescence. Starting in my 20s, I would have episodes of temporary amnesia, which I never mentioned to anyone because I didn't think anybody would understand me. I had an incident last November, which I described to somebody, and she told me it sounded like a seizure, so I started talking to doctors. I was just diagnosed a couple weeks ago with complex partial seizures. I, like Patrick, feel alone and would love to meet other people with whom I could share experiences. I'm in New York, and the closest Epilepsy Foundation is in Maryland. It is lonely, and I would love to meet other people who understand me.
Read Mark Chapter 9. Siezures are curable. Genuinely Give your life to Jesus Christ. I adopted a homeless epileptic with an autistism. EPILEPSY is a demonic attack. Doctors dont believe so because they will loose patients. Ask Jesus Christ to come into your heart to be your personal savior. Attend a non denominational bible study and learn about Jesus Christ.
It's a really bizarre feeling waking up after a seizure, the first couple of times it took me hours to convince myself that I wasn't dreaming and accept that I was in fact lying in a hospital bed.
I was diagnosed with Photosensitive Epilepsy when I was 2 and had my Seizure Tumor surgically removed when I was 8.
I don’t remember any of my Seizures so I’m amazed you remember.
I love how he lives his life! I hope one day I will reach that level of confidence to live a full life without a fear of getting a seizure ❤ You are a real inspiration
I had a gran mal yesterday
I fell
And now my bf says he was worried I sustained spinal injury which I didn’t
I realize I have to go to the er now because I’m walking like a Forrest Gump o braces
@@Greencloud8 hope everything works out from now on 😉😘
This video is beautiful. Made with love and consideration. Thank you.❤
Your not alone brudda 💯💯
My son is 29 and has had it for 15 years. Normal in every way but lives with us so not alone at night. People say terrible things about him living with us that make me cry.
I'm 28. Got diagnosed at the beginning of the pandemic, a year after a bad skull fracture.
I've been staying with my Mom again for the past couple of months. Going to move in with my Dad when he finally gets a place down here. Everyone in my life has been nothing but supportive of me doing so, I'm really sorry to hear that there are people around you who are so insensitive ..😔
One of my best friends is bipolar and has been having the occasional psychosis since he was a teenager. He's 30 and still lives with his Mom and Dad, there's no shame in it.
@@dubkatmtl Thank you honey. blessings to you
How did you get diagnosed at the hospital or did you have to find a specialist?
@@blake7349 Many, many, many doctor visits Cleveland Clinic, Mayo Clinic.....
Don't mind these people. They don't know your story . Peoplel are cruel. God bless you and your son
Thank you for this video I’ve been with epilepsy for 5 years it’s so stressful I get Ora’s as well im so scared because I never know what’s going to happen. It’s difficult explaining to people around you what it feels like but this video helped me when telling others how I feel.
I just figured I got eplisey 😔 from a brain 🧠 tumor removal I'm still learning more on my sezuire 🙁
@@babyscarr3 wow that is crazy . Definitely just avoid stressing yourself out and speak with your neurologist and see what medicine can help control any episodes. I wish you the bedt
wow. best explanation. I always have a hard time explaining it to others.
I can’t believe how he has explained this so perfectly.
This video and these comments are relatable. My now 40 year old daughter has had major seizures for about 10 or 11 years now. Sometimes 2 minutes long, sometimes 7 or 8. She had to surrender her driver license and has 2 weeks peace sometimes. Initially she was having like 5 a day. Now its mostly only one or two a day, usually 1 to 2 weeks apart.
She does take several meds and they help somewhat. She does live with us for the past 8 or 9 years, pretty hard to be independent! Everyone here be blessed.
I take lions mane for a few days after one, it works for me to help repair nerve damage & restore cognitive functions.
Also a very effective remedy for me is ROSEWATER.
My auras come on slowly, so when I recognize the sensations, a loved one (myself if I am alone) grabs a bottle & gently mists it around my head & back of neck.
I get extremely hot, so the rosewater cools me, the soft fragrance is pleasant, & I truly believe this remedy has been lifesaving.
It seems to distract the aura.
I'm more likely to GM not using the rosewater.
I keep one in every corner of my home & one in purse. The brand I use is HERITAGE.
I do not always recall if Ive had a seizure, so if I'm alone it's helpful to keep note pads around & quickly draw an X, or throw something out of place onto the floor (such as a towell) to signal to myself when I wake up that Ive endured a seizure.
I also find it essential to keep a daily diet & activities journal to recognize patterns & determine triggers. By journaling, I've realized many triggers such as preservatives, thyme, peanuts, peoples' gross perfumes, detergents & nasty potpourri odors.
I use only all natural cleansers, & stay out of places I know will have nasty chemical odors.
I also keep herbal satchels in my pillow contaning a relaxing blend of rose, chamomile, spearmint, & lavender.
I keep a strict ALL ORGANIC diet.
This is just what works for me 🌹🌼🌿🪻
RIP Juice Wrld 🙏
I just heard. So sad!
lmao juicewrld didnt die of a seizure
@@avapeceniak1332 drug induced seizure
Wait can I die from seizures
@@MichaelTurner856 it was a drug induced seizure. he took many different drugs once at a time. he was on a plane, the pilot informed the police Juice was carrying drugs with him, so Juice swallowed all his pills of different drugs at once. he didn't want to go to prison. then he had a drug induced seizure and after some time he was confirmed dead at the hospital. if it ain't a drug induced seizure, i don't think you can die. even if it is, it depends on what and how much you took. Juice took WAYYY too much, only because of the freakin pilot that couldn't just mind his own business and shut up about it
The first time I had a seizure I thought it was from the heat. The next time I had one was in my sleep. I remember coming to and looking around and seeing a look of horror on my girlfriends face and all my friends in my room. My first thought was like, it's 3 AM get out of my room. Then everyone told me I had a seizure and that I need to go to the hospital. After the 5th time I would know what happened with in about 2-3 minutes of waking up. If it's a particularly violent one, if I hit my head on a floor or something for example, I noticed my cognitive functions were a little slower. Reaction times slower, comprehending situations was slower. My memory isn't that great either. By far the scariest was having one while I was asleep purely from the surprise aspect of it even though having a seizure in bed is one of the safest places to have a seizure.
My son is autistic no verbal and started having seizures at 21
Now i understands
More . God bless us all.
Im 19 and have had 4 tonic clonic seizures in under two months (3 in my first day!) I'm trying to learn more about it. Ive gotten some new issues since this diagnosis (mostly memory issues post seizure) so thank you sm for the video ! :-3 I also have tourettes since I was 9 or 10 i have a big heavy feeling its related
God bless you Buddy 🙏 i had an horrible anxiety attack last night off an on like i was going to have a gran Mal. You explained it perfectly it a horrible feeling sweating palms an pouring heart thin twitching in the face then a calm calmness an then i feel my eyes roll back an I stiff an make loud noises an jaw clinching. Im praying i dont have one tonight they happen at night.
It’s shocked to hear all it’s information, you even know when it’s coming, you even know what type you have.. 😢 I just lost a sister this year 17th May. I wish she got this opportunity to hear all this information. It’s wisdom
Hi there, can you explain why you lost your sister ? Due to seizures ?
Thanks for sharing. ❤
I have bad epelepsy and he desceibed it very well in this video,strong man😊
I've had a similar form of epilepsy ever since I've been 16 years old. I'm 22 now and granted while I do get seizures every now and then...I've learned to live with it.
Do you have focal seizures to deal with instead of grand mal seizures?
Thank you for sharing. Needed to hear if for my daughter 🙏
My aura is what I call a feeling. It's kinda like a tingling and pins of needles. This dude has described what it's like mine. I shaki bite my tongue eyes role back. I hear a buzzing in my head during one and I think mom dad help uhhh. After the seizure I can't walk well I have trouble talking and a massive headache. This video is really helpful foe me as even though I had them for 4 years they still scare me. Thanks for this video it really helps
I was diagnoised over 14 years ago and those auras are dead on but i also cry and get dizzy and can't walk. Lately I've been having several auras monthly and some result in a seizure others dont but my neuro told me they're actually seizures. That's scary to find out I'm having more seizures than i thought. I also have gran-mal and my after seizure effects are way worse than what he described. Eveeyone is different though. I would like to speak to him. He seems down to earth and is always nice to talk to people who know and feel what it's like to deal with seizures
I've had first seizures back in 1997 and the way he describes it is 100% true. But I have a strong tingling feeling thru my left side of the face
Praying for you
I had my first seizure on a plane when I was 11. The sheer confusion I felt when in my eyes I was falling asleep one minute and waking up in a hospital the next was insane.
Thank you for making me not alone ❤
I was looking for a video to understand the soreness. Thanks
Me's smiling but deep inside he is so sad 😢
I found this on accident and I don’t like to talk about my epilepsy but I’m glad someone can talk about it, grandmal seizures have affected me it’s made me depressed and it’s making me have memory loss bc of how many times I’ve hit my head and I used to be active not anymore I don’t feel like the same kid I used to be I feel like my old self died and isn’t gonna come back, If you have seizures and are depressed don’t be me talk to someone please
I dont know you, but im sorry ! I wish you wellness and true happiness.
ayye bro i got the same seizure too.
Avoid sleep deprivation and think positive all the time, no matter how bad rhe situation gets.
having a mild seizure? calm yourself down and be like okay yeah i got seizure. Gonna be fine in a minute.
acceptance is a HUGE thing in controlling or reducing the frequency of epilepsy.
work out
I've had two seizures once when I was 20 and again at 21
My seizures tend to be audio based. when I hear a certain frequency or sound my ears start ringing and I slowly lose control of my body. My eyes fade to black and when I wake up I feel disoriented, tired and confused. I'm currently 22 and thankfully the medicine I take prevents them from happening.
best explanation
Thank you for making this video ... Im a mom of 14 yo son who is speech delay and epilepsy ... so im more aware on how to explain to my son
A member of my family never had a seizure their whole life, and has had THREE this year. I read somewhere that prescription medication can be the cause. The first one was scary, my mom ran up to me and told me they were "mumbling about something", almost like they were dreaming, and weren't making any sense. I gave them a sip of their favorite water, and it was like flicking-on a switch, they came right back! About 2 mos later, they were sleeping in the kitchen and started SHAKING really badly!! Then I calmed them down, gave their favorite water, again--normal. The most recent one was only last week, and was by-far the most-scary. Lots of blood out of mouth and on front of shirt, no language, no SOUNDS, but could see eye movement when I moved my finger. I called the EMT, and Thank God they weren't fearful and just casually said "Seizure? Yeah, Seizure." I must admit it gave me a sense of comfort to see how 'casual' they were being about it. About 1 hour later, we got to see my family member in the recovery room at hospital, and they are like "HEY GUYS, THERE YOU ARE!" We were so relieved since I thought for sure he would be sleeping, but it was like nothing happened! Thank God
I'll be 40 in November and I've had epilepsy for about 7 years. I had a TBI on August 9th 2007. I was expected to die and if not, not fully functional. After the surgery and my consciousness came back enough, the neurologist put me on Dilantin for precautionary measures because it's not necessarily common, but happens enough to notice with people that had a TBI. Especially a bad one. It made me feel like crap so i asked to be taken off of it and i was fine for about 9 years. Suddenly one evening after i got home from work, i was watching TV and next thing i know, I'm in an ambulance. No aura or anything. So i was diagnosed with epilepsy, my TBI making the most sense to be the cause of. For the next 5 years i had 15 total including the initial one. I've finally found a good neurologist and the proper medication and dosage(300 mg of lamotrigine twice a day) I've never had an aura leading up to one and i only remember right before it happened two times. I always turned to my right when i had them (i don't know if that's coincidence because my brain injury was initially on the right side) Because of that, if I'm looking for something and i turn to my right more than once i get super anxious with my first thought being about me having one. I've had deja vu situations also that do the same thing. I have grand mals as well and they usually last for about three minutes. My entire body stiffens for a little bit and then goes to the violent muscle jerks. I'm sore for about a week, give or take, after the seizure. Thank God I'll be serious free for two years in a month 🙏🏻
God bless your heart I have a daughter that is epileptic, and she has 2 babies it's horrible I wish there was a cure. Praying for you and my child!
I have epilepsy too. I have 2 diff’t auras before having a seizure. Either a discomfort in my stomach telling me to immediately go to the bathroom. Or, if I’m reading something, I could have a difficultly reading & can’t seem to focus on what I’m reading. When I feel it the discomfort in my stomach, I know I’m fixing to have a seizure & go straight to the bathroom & then straight my room to lay down. If that aura is that I can’t seem to focus on anything, I just head to my room & lay down. My seizures are mainly petit mal, the kind where I usually back out for a few mins. Very rarely I have grand-mal seizures. Sometimes I black out & still continue doing something. Most of the time, during those black out seizures, my brain sees it as a habit to go to my room. If seizure comes without a warning, & I’m by myself, I still black out & come to reality laying on my bed. Praise God, I rarely fall or hurt myself. He looked out that if I’m outside or am about to have a seizure, but someone’s nearby, they can whisper into my ear to go lay down & I manage to listen.
I also have epilepsy also known as a seizure disorder here is my story
When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. As i grew from baby to toddler my parents began to see that i was delayed. So i started early intervention at 3 years old I had occupational therapy and PT . In pre k I would get angry and punch any thing that was in front of me after my parents had been observing me in a pre k class and talking to the pre k teachers it was suggested that my parents should take me to a therapist to rule out any behavior issues. he took one look at me and said that I was having seizures he then referred me to a neurologist.
At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. When i had an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned
The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself i also have severe in Processing disorder Perceptual Reasoning, and Working Memory, Coordination,Dexterity, Fine and gross Motor Skills, Hand Strength, Visual Perceptual Skills.
When was 19, my father died, and it seems I have had a relapse if that is possible.I still have my absence seizure but it is not enough to put me on meds. When I was thirteen I had my last EEG and my seizures showed up as misfired neurons not seizure activity per say and the Dr. called them “flurries", so here is what my flurries are typically like: I will become very spacey, I can not interact with my surroundings, I also felt locked in to place. I am completely aware, my vision becomes like a tunnel, and thing start to move or vibrate on their own.
I write this for every person: consider using CBD oil. (at least read about it a little bit)
I have E brother...anytime you want to chat I'm dwn, literally have the same mindset you have so super thankful there are others out there that live that way!!:) -Ben
First seizure: had a bad migraine for 2 days, then a tonic seizure that lasted for minutes (but felt like for ever), with a pulsation feeling in my head that was painful.
Second seizure: had a sense of dread and utter fear and sadness for 2 hours, then felt like something squeezed my consciousness, and I started getting weaker and weaker where It was hard to hold my head on my shoulders. Then it stopped and I felt drained and my limbs were slightly floppy.
makes me understand more what my bf goes through on a daily basis
i just wanna meet you. you are amazing because of this video. god bless you! i relate with you so much.
Best way to describe a post seizure to someone who’s never had one I tell em imagine your worst drunk night out then some guys decided to jump you after and now your coming to that’s what it feels like I can’t even tell you the horror I feel everyday everytime I have an aura some nights I don’t even sleep out of fear but I’m the most free spirited man you’ll ever meet I do martial arts I spearfish things no normal person normally does not to mention what I do my support group loves me kinda thinks I’m a little crazy but I’m their “athletic” representative of the association and I’m damn proud if I die from a seizure while doing what I’ll love I’ll say it now like I’ve said it before I’d rather die in the ring or in the ocean then at home in fear besides I always have people with me who I train myself or I know are epilepsy trained
You are 100% correct brother. It happens to me too and the most irritating part which happens to me is the EYE FLASHES when i look up in blue sky
this is so saddd😪 but sweet too♥️♥️
he's literally describing me too😭😭
Wow proud of you! seizures took over my life I can’t do anything even my memory 😮
I'd say that's pretty accurate I've had seizures my whole life. Kinda just gotta make sure the people around you know what's going on and how to react.
I was diagnosed with epilepsy at the age of 14 completely changed my life now I’m 20 & I can say this is the best description of living with epilepsy it’s truly a scary feeling .
Do you only have Tonic seizures? or sometimes dose a partial seizure occur instead?
Man, when people ask me what happens to me when I am seizing. I tell them, I am in the world between worlds. " Dead " or i guess that in between space and time or the hyper NOW. Sometimes I see peoples faces from another life time. " Wait , I know her, or wait omg I remember that!" I also can HEAR the people around me, " dont touch him! "
Saddly, I hardly remember anything for a few hours, or it hurts to much to think to try to remember. And I am in so much pain, head ache, stomache nausua, FEAR, doom and gloom, panic, scared of losing out money from work. Paranoia and worry in " HOW AM I SUPPOSE TO WORK AND PAY MY BILLS WHEN EVER I GET A SEIZURE I CANT EVEN WORK FOR A FEW DAYS. "
I am so thankful that I have no memory of my seizures. People tell me what happens to me, but it's as if they're describing someone else. I don't even notice the difference between the start and the end, like a difference in location. It's very odd. The only memory I have is a flash of memory from a postictal confusion after a seizure when I was ripping down the wooden blind in my room. Apparently I trashed my room 🙄. One time I was staying with my parents and I walked downstairs, got milk out of the fridge, went over to a plant and 'watered' it with milk 😄
All controlled now with Carbamazepine, but I still have a crappy memory
Seizures are different for different people. I can't imagine having the seizures that guy has
Idk who this guy is but…. I love you with all my heart🫶🏾
I’m 22 and I just got diagnosed with Epilepsy a week n half ago. I don’t remember 3 days out of the week. Woke up at the hospital asking my family why do they all look so worried not noticing I’m the one in the hospital bed. I don’t know what to expect. I’m still sore still got a headache. Everything feels so off almost like I’m in a dream
The same just happened to me waking up in a hospital bed all bruised up and confused can't remember anything from that Wednesday it happened or Thursday
@@Kwame92. It’s been 7 months for me still don’t remember anything from it. It’s rough. Haven’t had any seizures since then but on a bunch of medication.
I have had epilepsy for the past 10 years...I have had seizures up to the point where I have fallen in a drain, bathroom on the ground and on a stove where i got a nasty burn...All this has happen while i am on my medication...But one thing i have noticed is you really get an aura or an out of body sensation ...Its really creepy because u can see or know whats is going on but cannot control it..This has me feeling depressed to the point of taking my life .....But you have to be persistent...All the best for you others stay safe..
I didn’t have my first grand mal seizure until I was 68 years old and had 3 since that time. The first was like I was sleep walking as I got out of bed yelled and fell then shook scaring my wife terribly. The last one really took a long time to overcome mentally as I had difficulty remembering things for awhile. I have this pressure between my eyes but otherwise feel fine and has been over a year since the last one and pray that another doesn’t happen. Taking 2 different types of medicine for it. I think stress has a contributing factor
I had shaking seizures for a couple of years before I had a Grand Mal seizure and stroke at the same time in the local emergency room. Doctors did tests and found it right away after the Grand Mal seizure. Other docs never figured out what I had for years. I was embarrassed by shaking in public before I was diagnosed with epilepsy. Pills turned out to be a nightmare. I have COPD and they gave me gabapentin. Bad stuff for COPD patients.
I understand!!
I have epilepsy seizures too. I also wish there was a cure for epilepsy. One of the seizures I have is I fall down and shake and saliva comes out. The most ones I get is my body goes out. I mostly dont know when it comes.
I had my first one last night I don’t know how to feel afterwards when I was done convulsing I felt like sick but not like I was gonna puke and I justl laid my bed on there I just cried I was all by myself and I realized if I died nobody would know I wouldn’t get to say goodbye to anything when I was in the seizure I did get deja vu bc I feel like that it feels like I’m about to faint so that’s what I thought it was until I was coming in and out and I realized I was shaking every part of me my arms my hands my legs my feet I was on my stomach and Ik when someone has a seizure you’re supposed to put them on their side and support their head but I was all alone I don’t ever want to experience that again it’s terrifying I have never felt so vulnerable or reminded of just how fragile the human body is until that
I have Grandma seizures myself. I just developed this at the age of 38 years old. I'm now 45. I do not have insurance. I did see a doctor they say it's from previous concussions when I was younger which I did have a lot of concussions. I do take a pill now one in the morning one at night. But I still do have the seizures maybe once a month sometimes longer which is great. But it's very scary I get the same feelings that this gentleman is talking about the Auto body experience kind of like lightning is going up and down my body. Definitely scares my family when I had one in front of them. I pray for anyone that has this problem God bless all of us amen
What a lovely man .
I suffered epilepsy when I was 10 I grew out of it thou
lucky 😢
I have the same seizures grandma just develop them at the age of 40. Can't find nothing in MRI or CT scan very scary feeling just like the gentleman said I get the same feeling aura. Hopefully they can figure it out. God bless everyone out there suffering from seizures very scary. Every time I have one it feels like this is it I'm going to die. I take kempra seizure medicine but I still get the seizures once every 3 weeks. I've never gone a month without having one.
Everytime i watch this it helps me keep going. ❤
Who should I contact?
I understand I’m going through it at the moment and I’m struggling with the pace of increasing meds to see if it helps
Wow this is crazy because I’ve been diagnosed with epilepsy since 1988 when I was born in August of that year and to this day it still scares me because I never want to terrify my niece and nephew if they witness me having a seizure.
We’re in the same boat
I had a gm in front of my niece and two nephews
My niece went off crying and my nephews apparently just stared at me with their mouths open
@@Greencloud8 Wow, that's horrible.
@@ladybugradio1988 niece was 7 and nephews 5 and 3
I would have sort of a daja vu feeling but also my mouth would start feeling numb and tingly. I think actually the dumb feeling came first, and so that feeling gave me sort of a daja vu feeling, and I knew what was coming. Apparently I had some kind of rare childhood seizures (was never diagnosed with epilepsy). But even though they spontaneously went away as I grew up (at about age 11), whenever I get any sort of tingling or numbness in my face or mouth I get this feeling of dread - like, oh, are my seizures coming back? What do I do if I really do have one now? (it's been 27 years since the last one).
It's terrifying when I'm driving. I feel bad for those who have to deal with seizures their whole lives, because even from experiencing them for a few years in my life, they still haunt me.
My family and I are so sorry for your experiences, fears and trauma. I've lost so much and my family has been through this crazier and crazier experience since I had an accident in 2018. We absolutely understand your fear and the fact that you have struggled, your word's are as strong as the person you are 💜
yeah i don’t think i’ll ever be able to drive to begin with 😕
focal aware seizures throw me off guard everyday , like he said it feels like im looking at myself , and when i feel as if im seeing myself people notice i slowly look around , dont respond nor do i really know they're trying to conversate with me and the people who dont know what it is nor that i have it they get upset and i always have to explain to them what it is and they get worried . i have been on 4 different medications and for the past 8 years , diagnosed at 13 and now im 21 , been on lamictal for the past 5 years maybe 6 ( 800 mg a day , which is crazy because people with bipolar disorder only take about 50/100 a day from what i've been told ) none of these medications nor CBD can stop these auras and i have had to deal with them everyday since diagnosed . epilepsy really does suck but since there is nothing we can do about it , a positive mindset and the right decisions for our health can better our mentality about epilepsy , as much as it can bring us who suffer down ,we cannot do anything about it and a healthy mindset and pushing through can help so much as there is nothing we can do . so those who suffer , you are not alone 🖤
Thanks for this video, am also having convulsion seizures for 3month now ,pls what kind of drugs should I take to stop it , I was given Kappra 500g ,but it keeps on occuring.