Purple Day (the International Day for Epilepsy Awareness is on Monday 26 March) IAmA epilepsy helpline adviser - ask me anything

Hi! I'm here from /r/Epilepsy. I'm an epileptic with focal, atypical absence, and myoclonic seizures. I was diagnosed in 2005 in the US and have been managing my condition in Denmark since 2010. Thanks for doing this, Grace! It's important to spread awareness about this condition.

Do you have any resources you can share about what to do when someone has a seizure? First aid and aftercare would be helpful to spread awareness.

Also it would be nice if we had some sort of card we can carry around in our wallet with that information.

I have a lot of people who are baffled by what to do when I'm having a seizure. I've had people try and give me water and wet towels, or call an ambulance to get me to a hospital when it's not necessary.

Yes we do! You can see our First aid info here We also have an ID card and a First aid card that fits in your wallet/purse.

Great to see someone here from /r/epilepsy - we encourage everyone to use this fantastic community.

This is great! I'm glad you have first aid information in other languages.

We think it's incredibly important in such a diverse place as the UK to give people as many options as possible. Thanks for popping in.

Hi Grace! I'm from twitter & I have epilepsy thanks for doing this, raising awareness is so important!

My seizures are triggered by stress, dehydration & a lack of sleep. A lot of people have seizures for different reasons & the common misconception is that flashing lights (photosensitivity) causes seizures for all epileptics, but that's not true.

What are some other known causes for triggering seizures?

Hi! My colleague Rich (our Social Media Officer who is helping me) out recognises your name. Stress, lack of sleep and missing doses of epilepsy meds are the biggest triggers. Others include drinking lots of alcohol, illness with a high temperature, and for some people monthly periods. We have more info about triggers on our website. Photosensitive epilepsy is something people immediately think of when epilepsy is brought up. It's actually one of the rarest types of epilepsy. Around 3 in every 100 people with epilepsy have photosensitive epilepsy.

I am not a shy person but I always shut down when trying to talk to people about my Epilepsy. I have both partial seizures and tonic clonic and when I try and explain my partials people look at me crazy. I just started working again so I have to talk to my coworkers. How do I talk to my coworkers about what to do if I have a seizure?

Hi. You could talk to your boss about making a care plan that sets out how people can help you during a seizure. Then you could ask them to share the care plan with your coworkers so everyone knows what to do. You could also show them our info about focal (partial) seizures to help them understand.

What is the most misunderstood thing about epilepsy?

Probably that people don't understand how complex a condition it is. It's not just the one seizure type that most people recognise (tonic-clonic). There are actually over 40 different types.

Will a kid be treated differently if the parents tell the school their kid have epilepsy? Some parents fear that the kid won't be as educated as the other kids.

They shouldn't be treated differently, unless they need extra support. Some schools are better than others. We do a lot to try to raise awareness with schools so kids with epilepsy get the support they need.

Do you have epilepsy yourself or do you just know a lot about it?

No I don't myself, but know a lot for my job and speak to people every day who do.

What is the most enjoyable part of your job?

When someone I've spoken to on the helpline thanks me for making a difference. Also working with my lovely colleagues!

What are your views on medical cannabis used to treat epilepsy? More specifically, with reference to the Alfie Dingley case in the UK, do you think it should be available more widely for research and treatment?

It looks like it could be positive for people with hard to control epilepsy, but lots more research is needed. We're calling on the government to support and fund more research into it.

Hi I have epilepsy and currently take 1200mg 2x daily of Epilim I normally take 3-4 seizures a week But what I want to ask is when I read online I can exactly pin point my issue which is panic attacks and anxiety plus a bout of Agraphobia all combined but when I talk to my GP he never seems to want to give me anything like diazepam even thou it says in many places that these drugs for epilepsy can actually work wonders, I am just wondering if he should actually be giving me those or is it better not to be on sedatives at all? Thanks for doing this btw

Diazapam is usually used in epilepsy as an emergency treatment for people who have prolonged seizures. But there might be other therapies to help with the panic attacks, anxiety and agoraphobia. If your GP isn't taking it seriously could you ask to speak to another GP at the practice?

Yes I’m sure I could but I do like him he’s helped me a lot if I’m honest I’ve never asked directly for anything ive kinda just showed him the information hoping he could help me more than just the epilepsy medication which haven’t been working as good as what I’ve wanted, If there is other therapy’s could you suggest a few? Currently I am stuck in my home and never really leave due to them hence the agrophobia

Sorry I can't recommend particular therapies, but you could try Mind for more advice.

My longtime girlfriend has epilepsy, but we just never really talk about it. What can I do to help her feel more comfortable and what should I do if she ever has a seizure around me?

Hi there, Kathy from the Epilepsy Action Helpline in Grace's absence. It sounds as though your girlfriend isn't having regular seizures, otherwise you may have seen one already? I would suggest being open with her, asking if there's anything you can do to accommodate her. If you don't want to talk about it all the time, perhaps have one conversation about her epilepsy, find out what works for you both and know for the future. You can check out our seizure first aid information here which includes everything you should look out for and an online course you can complete. Hope that helps :)

Do you want share an experience, where you felt that you made a difference for someone or a happy moment?

I have epilepsy and I know that a listening ear can make so much difference. Keep up the good work!

One that sticks in my mind is a lady I spoke to who'd been seizure free for several years and had been offered a job as a lifeguard, but at the last minute the pool withdrew the job offer because of her epilepsy. I spoke to her about her rights and how to talk to the employer. She phoned back a few weeks later to say she'd followed my advice and got the job. It was great to hear my advice had made a difference to her life.

That's great! I know i had so much trouble finding a job because my license was suspended. There is more than a few things i wish people had told me. I'm glad that you managed to help her, sometimes you just need a little nudge and a good person to back you up. Really keep it up!

Thank you so much! Again, if you ever need anything we're always available on the contact details in the OP

Paramedic here! I go to seizures all the time, and I usually wait until patients have completely come out of their postictal state before transporting. I’ve had a lot of people with seizure disorders who when all was said and done, didn’t want to go, which is fine, but obviously I have to explain risks of refusing and all that. One of the arguments I typically use is, while yes, I understand you have a seizure disorder, and you took your anticonvulsants/benzos/ whatever you take for seizures, but if you just had a seizure, maybe your medication or dosage should be adjusted, maybe a trip to the ED and a follow up with your neurologist isn’t the worst call. Reading this thread though, maybe my understanding here isn’t quite right. Can you help me feel a little better leaving an epileptic patient who just had a seizure and would like to refuse transport?

Hey, Kathy from the helpline team was able to get an answer for this one in Grace's absence. Being in the UK, the protocols for transporting people to the hospital here might be different to in the US - particularly with the insurance system being different. Basically, you need to follow the protocols for your role. In fact, here, if someone has recovered fully from a seizure and isn't injured, they wouldn't always be taken to hospital. It would be suggested they speak with their own GP or epilepsy specialist as soon as possible, but not as an emergency.

Hello! I have epilepsy and saw your post on the epilepsy subreddit. I was just wondering, what are some of the most common questions you get on the helpline? Have there ever been any uncomfortable questions or situations that you didn’t know how to answer?

We get many different types of questions about any aspect epilepsy and living with epilepsy. And the people who ask the questions can range from children to 90 year olds, professionals, family members, employers – the list is endless. We’ve also had questions about treating dogs and other animals for epilepsy too

What's your favorite flavor of Gatorade?

Never tried it! Being English I am partial to a nice cup of tea, though.

Does cannabis actually help people with epilepsy lead more comfortable lives?

It looks like it could be positive for people with hard to control epilepsy, but lots more research is needed. We're calling on the UK government to support and fund more research into it.