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

Mar 23rd 2018 by EpilepsyAction • 8 Questions • 298 Points

Edit: Thank you everyone for the questions. Our first time doing something like this and we realise we might have posted at a difficult time. I am going to have to go back to the phone lines now but please continue to post questions and me and the team will answer them when we can. It may be next week. Apologies if we can't get back to you today - Grace.

Around 50 million people worldwide are affected by epilepsy. Purple Day, the International Day for Epilepsy Awareness, is on Monday 26 March.

I'm Grace from the Epilepsy Action (www.epilepsy.org.uk) helpline. Please ask me any question you have about epilepsy. Different seizure types, myth busting, first aid, daily living, SUDEP. Please note - I am not a medical professional. I can't diagnose or recommend products.

Proof: https://twitter.com/epilepsyaction/status/977133405489025024

Find out more about our Purple Day efforts: www.epilepsy.org.uk/purple

If you have any confidential questions about epilepsy, please email us at [email protected] or call free phone in the UK 0808 800 5050

Q:

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?

A:

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.


Q:

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?

A:

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.


Q:

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.

A:

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.


Q:

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

A:

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.


Q:

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!

A:

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.


Q:

I’ve usually refused to go because I don’t want to sit there. Most ED docs don’t want to do too much. I’ll get a bolus of NS and maybee some IV meds. But usually I’m just sitting there for observation.

I usually call my neurologist after I have a breakthrough seizure and tell her. She either brings me in, or puts it on record and I always get blood work after.

As epileptics we are in-tune to our bodies, when something is wrong, we know.

A:

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.


Q:

What's your favorite flavor of Gatorade?

A:

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


Q:

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

A:

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.