What should people know about epilepsy?

Earlier this year, Paul, Lauren, Patience, Harry, Rosie, Lucy and Helen met up to talk about the impact epilepsy has on their lives and the misconceptions they face every day.
In these uncertain times, your support for people with epilepsy means more now than ever before. If you can, please donate at epilepsy.org.uk/now. Thank you 💜
Web: www.epilepsy.org.uk
Twitter: / epilepsyaction
Facebook: / epilepsyaction
Instagram: / epilepsyaction

[@themisunderstood91]

Living with epilepsy means having to accept that I’ll always be co-dependent or dependent to a major extent on another human/family/partner. Thus it follows that whenever an attack happens I am forced to allow others to step in and care for me, until I’m recovered. This recovery period can take up to a month.

[@SissyFlower5]

It's true that not all epilepsy is "see a flashing light, fall to the floor" but for some people, it is. And those people still deserve to have jobs and get treated like normal people. Like I know it's important to educate people that there are a lot of different types of seizures and epilepsy, but I wish people didn't try so hard to distance themselves from _those_ epileptics, like "Look, my seizures are only minor! I deserve to be treated normally!" when really they should be advocating for _all_ epileptics to be treated normally regardless of how severe their seizures are. Because when your argument is "the fact that people think that that epilepsy is just photosensitive tonic clonics is the reason we have trouble getting jobs" you're kind of throwing people who do have photosensitive tonic clonics under the bus by implying that it's fine if _they_ have trouble getting jobs...

[@socksandpi1264]

I'm photosensitive tonic-clonic, and it's not just strobe lights like so many people assume, but it's also the sun flickering through the trees, emergency vehicle lights, camera flash, fires. Did feel a bit like being tossed under the bus. Or, someone sees you have one type of seizure, but then you say/have a different type, they're quick to call you a liar or just be an ass. Everyone should absolutely be treated like a human, not a circus animal. Hope one day people won't be so terrified of epileptics, and won't try to sweep us under the rug anymore.

[@bogusmcbogus2637]

One of the presenters literally talked about having that epilepsy. She was included. Nobody was trying to distance from anyone. What are you talking about? Okay, first off, this the video isn't making an argument so why you use "when your argument is..." just shows me you're wanting to complain. Second, that is not even what was said. They didn't say, "Hey there billy bob, I lost my job because they thought I was one of dem der sloppy floppy epilepchamacallits." Really? That was your takeaway from this video? That people who have tonic clonics deserve to lose jobs while those with other seizure types don't. God, you're self-centered. Maybe you don't realize it but some people have more than one kind of seizure myself included. And the whole losing a job thing for me always came down to not being able to drive to work and get there at the drop of a hat when needed. WHICH ANY KIND OF SEIZURE WILL RESULT IN. And by the way, the only people I know who use the word "epileptic" to describe people with epilepsy are generally people who don't have epilepsy or have never met a neurologist.

[@felixthecat2786]

It's incredibly rare to have seizures from flashing lights. Only 1% of epileptics have photosensitive seizures. I am one of those people and have a disorder called JME or Juvenile Myclonic Epilepsy.

[@dustinh4175]

It does limit what we can do safely at work. I mean its not society's fault were harder to employ but it shouldn't be so hard to get disability benifits

[@rahmanseducationalpoint9192]

Yeah it’s true

[@firebladetenn6633]

My husband does that same thing that lady’s does. “Did you take that? “ “How many hours did you sleep?” “You’ll be ok.” He comforts me when I need to cling to him. He reminds me constantly how much he loves me just to keep me smiling and keeping my anxiety at bay. I love him with all of my being and could not survive without him.

[@courtwright227]

My epilepsy went undiagnosed for about two years. No one believed me bc they didn’t look like “typical” seizures. Teachers used to give me detention’s,my peers made fun of me,I had family members that refused to be around me or would shame me, or accusing me of needing attention. It was truly one of the scariest and loneliest points in my life. Right as I began puberty..double whammy! I now have the VNS and am doing much better.

[@um52]

🙏 Yeah I’ve been through hell and back also. I’m glad you’re doing better and as hard as it is try to stay positive in any situation

[@HumphreysBalls]

Skill issue💀

[@lillia.d]

I doubt you’ll see this but I had to say something. I am so glad you figured out what is going on. I too have epilepsy and have been made fun of god blessed me with the best friends and they really let them have it! I too have a VNS and it has helped a lot. I am so happy you are on a good path and hope that continues

[@felixthecat2786]

Wow what alarmingly ignorant people you were surrounded by. I feel outraged that you had to go through such a horrible experience. You could died within that period of 2 years without having a diagnosis. Did you ever get an apology from any of those assholes? I have JME or Juvenile Myclonic Epilepsy. When I was 8 I was diagnosed with epilepsy, but did not develop myclonis until I was 12. I used to have myclonic jerks in 7th grade and kids would make fun of me and accuse me of falling asleep in class because the myclonis looked like someone jerking awake after falling asleep. It was later that year when I finally had a seizure at a theater that I was diagnosed with juvenile myclonic epilepsy and realized the myclonic jerks were a part of the disorder.

[@pb.pb.pb.pb.]

I am struggling with severe palpitations induced by panic/anxiety. Ever since i abused benadryl & marijuana. (I am clean and sober now 8 years). It is very scary the physical symptoms 😭. I feel like they get life threatening, but they only happen when i get really emotionally stressed or have a panic attack. It’s like my heart beat has it’s own mind and beats fast and SO HARD when i wake up in a panic. Unusually hard, like past what a normal hard beat does… Yesterday i nearly collapsed and almost peed myself because my heart was going so fast and hard for so long. It’s no issue with my heart or electrical system, i have been to cardiologists. He said it’s my brain. If anyone knows anything or can give me advice, what doctors i can go to. I appreciate it so much. This is a nightmare 😓. Bless you all 🙏

[@jeonyn3582]

sad,lonely,heart breakinh because i have epilepsy and my fake friend spread it in our school now everyone looking at me in disgusting way but i dont mind it because i am proud of my self not giving up and keep standing in my own feet💜💜

[@denkisimp2853]

Yeah, I have silent seizures, and as someone who can go through life without anyone KNOWING because I can take care of my seizures myself it's sad because why I know how to handle myself is because people get mistaken and think many things. I just can't imagine putting my life or wellbeing into someone else's hands.

[@HopeAndSunshine]

This is a great, informative video. Our 8 year old daughter has epilepsy, and even people who have known her for a long time often believe a lot of misinformation about her seizures.

[@biosante5466]

call / WhatsApp [phone] for effective and definitive treatment until total healing 100% natural

[@joantendler6518]

Has your daughter tried a ketogenic diet? I have a friend, an Emergency Department doctor, who had epilepsy, but then began to eat only meat, and his seizures completely stopped :) He also feels better, according to him, than he ever has.

[@HopeAndSunshine]

@@joantendler6518 We've tried it, yes. It helped some, but not enough. Fortunately, her seizures are doing a lot better now due to her VNS.

[@joantendler6518]

@@HopeAndSunshine That's really great! Just curious, are you still doing it? I'm just asking because there's an infection that can cause epilepsy but it's destroyed by the ketogenic diet. You can test for this infection, if you're interested.

[@HopeAndSunshine]

@@joantendler6518 No, she's on a low(ish) sugar, high(ish) fat diet right now, and it seems to be a good balance for her. She doesn't have any tonic clonic seizures anymore, but she still has other types. This is definitely the best she's ever done in terms of seizures (thanks to her VNS).

[@gracehelena9879]

I have epilepsy since birth i will be 23 in June I struggled why whole life to get a job coz of seizure even when they were under control. I thank my Director for the job I’m doing now ( Chid care) she was willing to accept me when I told her I have epilepsy even when I burned my arm this month due to absence Seizure 😭😭 she didn’t fire me or anything I Thank her for that ☺️ and for anyone who is struggling to get a job coz of Seizure please don’t lose hope you will get one

[@benprewitt4600]

Hey, American vet epileptic here. Thanks for making this. You have folks who appreciate this on our side of the pond.

[@beaterbikechannel2538]

I worked as a welder and get focal seizures. I go blank. The flashing lights dont do it, I can look at flashing lights all day long, no reaction but wish me luck explaining that one to future employers.

[@charlesritter3018]

Im gown on my 10 year mark on Easter morning epilepsy hero 💜💪😁💜

[@oliviawatkins673]

I hate the fact that epilepsy is hidden cuz when I mention it to my friends and new ish friends they think I'm showing it of just because I say "I can't do that cuz of my epilepsy" I'm almost 13 now and knowing that girl's and boys call me possessed when I'm having a tonic clonic seizure is the worst

[@artdump6592]

That's awful! I'm sorry you're going through a hard time, hopefully they'll come around soon 💜

[@alliyahlynn2771]

I relate. I have epilepsy, people thought I was faking it just for attention. But if you need someone to talk to I’m here

[@benabel7326]

It's a repetitive line, but people do understand more the older you get. You will know you have a great friend when they want to help you, even if it is just checking how you have been. It will happen trust me.

[@biosante5466]

call / WhatsApp [phone] for effective and definitive treatment until total healing 100% natural

[@biosante5466]

call / WhatsApp [phone] for effective and definitive treatment until total healing 100% natural

[@VibekeA]

Wow this is truly so amazing when I was 14 I was so confused as to why I had myoclonic jerks early in the morning when I woke up (I had no idea that’s what they were called) I thought it was normal until I mentioned it to my friends and they were so confused as to what I was talking about 😅 eventually it clicked in my head that’s it’s not normal and I had told my mom, I was diagnosed with hypothyroid which had similar symptoms as Epilepsy and though I did have hypothyroid the doctors hadn’t diagnosed me with epilepsy until I had my first gramma seizure, but I remember before my first seizure I had such a hard time looking up what I was experiencing so I truly appreciate all that you are all doing here and raising awareness about what epilepsy is. Currently I’m over 4 years seizure free and my levels are normal for both of my conditions all thanks to God 😄 it definitely was a roughy ride but seeing this video really allowed me to feel less alone

[@secretagentmandy]

Great awareness video! I wish so many knew more.

[@victorianewborn5635]

The job thing is so true, its so hard to find a job when you have epilepsy

[@quranteacher2310]

Is it really? I'm so sorry to hear that.

[@victorianewborn5635]

@@quranteacher2310 yeah, cant work with any machines or in a kitchen because it's a liability. Cant work overnight because sleep pattern changes is a massive trigger. Cant work a job where im alone because its considered a liability. It really sucks. Plus when people find out I have epilepsy they treat me differently, like im fragile because they don't understand.

[@quranteacher2310]

@@victorianewborn5635 wish you all the best. Good luck. Hope you find the job of your dreams very soon.

[@dewandriadiggs5684]

That’s why I didn’t go back to college. People treat you like you can’t do anything!

[@victorianewborn5635]

@T B lack of sleep is my biggest trigger and at the time of my original post my seizures were not under control and I was having grand mal episodes about once a month or so. I've recently found meds that work that didn't cause horrible side effects and I've been seizure free for 11 months and am planning to get my license by December!

[@kellychick7647]

So true I suffer from elplesy I cant work I use to be a carer love Kelly

[@cayelynbarrows2567]

@Dorris Tammy There is no cure, you idiot. Stop scamming people and giving them hope where there is none.

[@spiritman-em4qr]

It's true that epilepsy is very misunderstood in society, and that most people have wrong ideas about the various manifestations a seizure can present as. It's very beneficial to have close family and friends who are educated in these matters. Loving and understanding support are so helpful to anyone who experiences epilepsy.

[@amypue3144]

Great video to show awareness of epilepsy .

[@amypue3144]

@Dorris Tammy you do realise there is no cure? There are medicines to help get the condition under controls though.

[@bogusmcbogus2637]

@@amypue3144 It's a commercial spam bot. If enough people report it, the account might get banned.

[@DonaldTucholski]

Eyewitnessed classmate in seizure during lunch in the 5th grade. No one knew what to do. I hurried to get a Teacher. Afterwards training was held. Now listening to these videos seems that research and knowledge has gained. Many many years ago the procedure was to actually place something in the mouth to prevent the person from chocking on their Tongue.

[@epilepsyaction]

Hi Donald, thanks for your comment. It sounds like you made a difference for your classmate. And you're right research and knowledge has moved on. The first aid advice is don't put anything is someone's mouth when they're having a seizure. We know now that you can't swallow your tongue during a seizure and putting something in someone's mouth could cause more injury. It's important to move someone onto their side in the recovery position after a seizure though as this helps to keep their airway open. We've more first aid info here if you need it: www.epilepsy.org.uk/info/first-aid Regards Mags Helpline Team.

[@charlottebartels429]

So true. I was just diagnosed with epilepsy on Thursday.

[@maredgwenllian9698]

I can't get a job because of my epilepsy I also had a lot of people bully me in school because my epilepsy but I gess it made me stronger but its annoying that I can't get a job Im olny a valanteer 😑

[@savannahbrashear]

I made a presentation especially after the health teacher didn’t even know how to deal with a vocal seizure😢

[@jasonworsham3631]

God blessed me with a Bailey (the love of my life) Gorgeous wife. She pretty much saves me life in many ways, more than just physically dying, she keeps me Sane.

[@cherylflanagan]

So many people have no idea how many different kinds of seizure are possible...not every seizure is a Grand Mal

[@soniczforever5470]

Can happen at any age (2015) I was 30 eeg normal so I had to clean my room. I'd thrown items everywhere didn't take action as i was a low weight I do take meds for a different condition also prevents epilepsy I never had one again but I take precautions.

[@silashellem3693]

IM A 13 YEAR OLD KID WITH EPELEPSY I HAD A SEIZURE IN SCHOOL THAT FRIDAY I GOT BULLIEDNFORHAVING THE SEIZURE

[@christophersmith7727]

When I was in school people would always say things about people with epilepsy and I told them epilepsy is not funny it can make you do things like walking out of a vehicle while you're on the road and that it makes your mind go blank and lose control of your body and mind

[@olsonaiter151]

So true

[@katiestephenson1442]

I have it and I hate it cause I get nocked out sometime I cant stay up and my body want to go back to bed . Also I always injure my self when I have a seizure cause I’m tonic-clonic so I feal like I left to my self all the time . I feel negative for no reason one I have speech problems , my body don’t no what to do with it self . I can’t have a normal life and feel week , panic attacks or psychotic depression and I was frighten to get u and was with it all the time upset and thinking somebody was attacking me so I didn’t get out my bedroom . I’m more better now but I still live with all that but just having panic attacks not coping with it everyday so I do go out . But I still feal I ain’t got a life of feel like nothing seem fun it just seems plain and boring what I hate

[@epilepsyaction]

Hi Katie Thank you for your comment. It sounds like you're having a difficult time. Our helpline is here for you if you want to talk about this and get advice about epilepsy. You can call us, freephone in the UK, 0808 800 5050 or email us at [e-mail]. Our website has more information about safety and about wellbeing. We also have a free online self-management course called Epilepsy and You. This course is for adults with epilepsy who want to develop the skills to manage their epilepsy. www.epilepsy.org.uk/info/daily-life/safety www.epilepsy.org.uk/info/health-matters learn.epilepsy.org.uk/courses/epilepsy-and-you/ Some people with epilepsy tell us it's helpful to share experiences with other people with epilepsy. We have a group on Health Unlocked for people with epilepsy to do this. healthunlocked.com/epilepsyaction I hope this is helpful for you. But if we can be of any more help, please feel free to contact us. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm. Regards David Epilepsy Action Helpline Team

[@joantendler6518]

@@epilepsyaction Hi David, Do you have any videos on the ketogenic diet for epileptics? It's used all the time in the US for the more severe cases of epilepsy, but works beautifully for less severe cases, as I saw with a friend of mine.

[@epilepsyaction]

@@joantendler6518 Hi Joan You can find more information about the ketogenic diet on our website. While we don't have any videos on this, an organisation called Matthew's Friends has lots of information and tutorial videos. They have a website and a KZbin channel. www.epilepsy.org.uk/info/treatment/ketogenic-diet www.matthewsfriends.org/ kzbin.info/door/gWjoZ_q2OIIMHhyuqp4AJQ Thank you David

[@pb.pb.pb.pb.]

I am struggling with severe palpitations induced by panic/anxiety. Ever since i abused benadryl & marijuana. (I am clean and sober now 8 years). It is very scary the physical symptoms 😭. I feel like they get life threatening, but they only happen when i get really emotionally stressed or have a panic attack. It’s like my heart beat has it’s own mind and beats fast and SO HARD when i wake up in a panic. Unusually hard, like past what a normal hard beat does… Yesterday i nearly collapsed and almost peed myself because my heart was going so fast and hard for so long. It’s no issue with my heart or electrical system, i have been to cardiologists. He said it’s my brain. If anyone knows anything or can give me advice, what doctors i can go to. I appreciate it so much. This is a nightmare 😓. Bless you all 🙏

[@epilepsyaction]

Hi It sounds like you're having a difficult time at the moment. If you think it may help to talk to one of our advisers you can contact us by live chat on our website (www.epilepsy.org.uk) or if you are in the UK you can also call the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm. Regards Jess Epilepsy Action Helpline Team

[@Andrew-wv6fy]

I see a neurologist. I smoked marijuana for 20 years, 3rd day into withdrawals I seizured. A neurologist would be my suggestion

[@tabithadickson36]

Im conscious when i have them i pass out after a bit but im awake and awere when they happen having fits is a terrifying thing im really scared of having them. But doctors atually said its not uncommon for adults to be aware there having one. My boyfriend knows what to do and my mum so im well looked after but found out resently that though im 24 this year im preferred not to get a bath without some in the house with me and in 2021 i lost my job of two years cos the woman who found me having a fit reported me as violent i wasn't i was sick but lost my job anyway some people just don't understand

[@WisdomlovelyGirls]

I have epilepsy and I feel like I get treated differently even in when I was in school I felt like I was being treated differently and even now I feel like I still feel like I am treated differently and I am 18 years old now

[@atarasarinanetanel8582]

Just curious can a person with epilepsy go to a spa?

[@onyebuchiaugustine6275]

3 days ago me and my lovely husband were able to eliminate our deadly sickness epilepsy with the help of Dr osoria may god continue to protect you

[@sbaby-np5hy]

Till I was diagnosed at 17 I honestly just thought seizures were what I saw with my mother which were the tonic chronic where she would shake obsessively and fall to the floor and I was diagnosed with simple partial and complex partial which were basically me just staring off into space and what I still say is like getting a funny feeling in my belly that's my aura I didn't know until I was diagnosed that there are different kinds of seizures that's when I started to get smarter about it.

[@danielledewitt1]

You mean tonic clonic seizure.

[@sbaby-np5hy]

@@danielledewitt1 yes my phone must have spelled it incorrectly it was also called grad Mal. Some people still call them that.

[@danielledewitt1]

@@sbaby-np5hy Yes grand mal is the same just more commonly known as tonic clonic.

[@sbaby-np5hy]

@@danielledewitt1 okay so we both know end of discussion.

[@danielledewitt1]

@@sbaby-np5hy I have tonic chlonic seizures myself.

[@robertdeffenbaugh9004]

I would think people would be more understanding because over 3.4 Million Americans have Epilepsy.

[@maredgwenllian9698]

We need more videos like this it's a amazing video

[@deppybetsi216]

shut up there isn't a total cure for epilepsy.

[@maredgwenllian9698]

@@deppybetsi216 hey don't be disrespectful everyone has there opinions she jest gave me advice that's all

[@maredgwenllian9698]

@@deppybetsi216 we should not be disrespectful with each other we should help each other through epilepsy don't you agree

[@maredgwenllian9698]

@Dorris Tammy last time I called him about something he charged me over £70 and I didn't get to go through it

[@maredgwenllian9698]

@Dorris Tammy so I have to do something about it myself

[@jennic9076]

Tonic Clonic? 20 min? I take it she doesn't stop breathing during her seizures then? I take tonic clonic amongst other but stop breathing. So no 20 min seizures thankfully. Loss of bladder control can be embarrassing. I've never been able to hold down a full time job. Seizures increase. As a result of this its been impossible to get a visa to live and work in Australia.

[@cherriemay528]

They think we are possessed 😓

[@minhajtunu9513]

IT IS A DEVINE SYSTEM ON ITS WAY. NOTHING TO BE WRRIED AT ALL. THERE MIGHT BE FEW HOURS OF DARKNESS. THATS ALL. JUST ENJOY IT AND REMEMBER THE CREATOR OF EVERYTHING. FROM BANGKADESH.

[@dmcewen772]

I have to live with epilepsy

[@davidgallegos4187]

High humidity and low atmospheric pressure is the reason why people get seizures! I found out because my previous seizure was during when the hurricane and I googled it and found out. And your in jolly old England!

[@iniobong5571]

Let me take out a moment in my busy life to send a thank you note to a very amazing doctor who is full of love and commitment,Dr ogie is truly a blessing to the world thanks for curing my epilepsy

[@jermx269]

Ah yes. I've been diagnosed decades ago. At 46 on disability. My seizures seem to frighten the public. "What are you wearing to the house fire?" Lookies and circus goers.

[@Andrew-wv6fy]

I'm afraid to tell new people. From my experience they just ghost you.

[@epilepsyaction]

If you are looking to connect with others who understand what it’s like to have epilepsy, you might want to check out our talk and support groups: www.epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups

[@davidgallegos6925]

High humidity and low atmospheric pressure is the reason why people get seizures! I found out because my previous seizure was during when the hurricane and I googled it and found out. And you are in jolly old England with high humidity. Sensitivity towards high humidity and low atmospheric pressure cause it. Thats why countries with high humidity such as UK and Pakistan have the highest amount of Epilepsy.

[@udumaanaga94]

#DrObahistoricalherbs

[@popalberta4688]

I've been having a hard, hard time BUT I do have "spazz" word privilege.

[@iniobong5571]

Let me take out a moment in my busy life to send a thank you note to a very amazing doctor who is full of love and commitment,Dr ogie is truly a blessing to the world thanks for curing my epilepsy

[@sherilynangel6498]

If there is a cure...I want to know about it & I'm sure many others would also, please share xx