What should people know about epilepsy? 

🙏 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

Skill issue💀

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

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.

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 🙏

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.

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.

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.

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

Yeah it’s true

call / WhatsApp +22965212243 for effective and definitive treatment until total healing 100% natural

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.

@@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.

@@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.

@@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).

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

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

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.

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

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

@@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.

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

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

@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!

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.

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

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

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

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

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

You mean tonic clonic seizure.

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

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

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

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

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 helpline@epilepy.org.uk. 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

@@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.

@@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 RU-vid channel. www.epilepsy.org.uk/info/treatment/ketogenic-diet www.matthewsfriends.org/ ru-vid.com/show-UCgWjoZ_q2OIIMHhyuqp4AJQ Thank you David

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

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

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

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

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

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

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