Last week was National Epilepsy Week here in the UK, 14-20th May. My girlfriend suffers from epilepsy; we have been together over six years and known each other for a year or so longer than that. Before that I had absolutely no idea how to deal with epileptic seizures or any real knowledge of epilepsy. In talking to people though general conversation I have found I’m not the only one. An ex-colleague was on the tube once and a passenger had a seizure and he didn’t know what to do and I feel this is a common theme, hell, ten years ago I would have been firmly in that boat too. So in light of this I really wanted to write a post to raise awareness of how to deal with epilepsy as an outsider but also to inspire anyone that has epilepsy that it shouldn’t stop you travelling and exploring this wonderful world around us.
According to Epilepsy Action, “Epilepsy is the one of the most common serious neurological conditions in the world. It affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy. Around 87 people are diagnosed with epilepsy in the UK every day.”
Wow. That’s a lot of people. And that’s just the UK. So the chances are that on your travels, you will probably meet someone with epilepsy.
I’m gonna be honest, the first time you see someone have a seizure, it’s bloody scary. And you panic. It’s understandable, I did. I had no idea what to do and tried to put Blaze into the recovery position WHILST SHE WAS SEIZING. Don’t do this. Seriously, don’t.
So what should you do if someone is having a seizure?
- The answer is a lot easier than you think. Essentially there is nothing you can do about their seizure, you can’t make it stop so the best thing to do is to make sure they are safe. Make sure there is nothing nearby that they can hit their head on, knock off a ledge with their arm, fall on, etc.
- Do not try to hold them still. Let them flail their limbs about and let the seizure run its course. Do not attempt to restrain them. I had a conversation with someone who has a sister with epilepsy; they told me when they were young they tried to hold down their seizing sister – her sister broke her arm because her shaking limbs were that strong. For both your safety and theirs, don’t restrain them.
- If you can, cushion their head. Cushion, not hold.
- I usually talk to Blaze though out her seizure, just reassuring her that everything is ok. She isn’t aware of me but I like doing it. I have no idea if any part of her brain can register my voice but I do it anyway. Be aware if you do talk to them, they will not understand or register what you are saying so don’t ask questions or expect answers.
- Once they have stopped seizing, put them in the recovery position. Their breathing should slowly return to normal.
- Check if they are wearing a medical bracelet that states medical conditions or an emergency contact.
- If they are sleepy and want to sleep, let them. It is ok, they do not need to stay awake (the exception to this is if they have hit their head). A paramedic once explained to me that having a seizure is like running a marathon so in light of that, it’s pretty understandable that someone would want to sleep after that!
- If you can, stay with them until they come around. It could take a while but they might not be aware of what happened so if you were there and saw everything, you will be able to update them.
Ok great. So now I know how to deal with seizures.
Wait. Did you know that not all seizures are shaking ones? There are lots of different types of seizures with confusing technical names but essentially you get what I like to call shaking seizures like I’ve mentioned above and staring seizures. They are called absent seizures by medical professionals and essentially the person will just stare into space. Sometimes you may not even realise that they are having a seizure because they will answer your questions – not elaborate answers but things like, “I’m fine” and “yes” and “no”. If you are talking to someone with epilepsy and suddenly they don’t quite seem with it, they may be having an absent seizure. You can check this quite easily by asking questions that don’t require a yes or no answer, things like, “where are we?” “will you buy me a Caribbean island?”, you know, things that require them to think about the answer. Again, like with big shaking seizures, you can’t actually do anything but just sit with them until they come around (sometimes a seizure can start out as an absent one and then go into a full blown out shaking one). It may take a while for their brain to engage again so whilst they may be able to talk to you and answer questions properly, they may be a bit slow with their words or struggle to find the correct word for what they want to say. Again, they may want to sleep after this too.
Tips for travelling if you have epilepsy
(Some of these might be obvious but I’m going to say them anyway, just in case.)
- Get travel insurance and make sure it covers existing conditions and your epilepsy. Yes, it will cost more. But in the grand scheme of things, it doesn’t matter. If you have a seizure, injure yourself and have to get taken to hospital, you want your insurance to cover it.
- Epilepsy is an invisible illness, this means people don’t know unless you tell them! If you are in a tour group, tell the guide or someone in the group and make sure they know what to do if you end up having a seizure.
- Pack all your tablets in your carry on, never in your check in. Even if your carry on bag is full of your medication and nothing else, do it. The last thing you need is to get to your destination and your medication to not.
- Remember time zones change, try and make sure you still take your medication at a reasonable time without too big a gap between doses.
- Make sure any medication you need to take to travel to a destination, e.g. malaria tablets, does not interfere with your epilepsy medicine.
- Relax, enjoy yourself and take regular naps if you need to.
I want to point out that I am by no means an expert when it comes to epilepsy, this is just my experiences and thoughts that I wanted to put in a post so more people are aware. I also understand that one person may have a lot more seizures than someone else and different triggers resulting in different quality of life. I just want people who have their epilepsy as under control as it can be, to not be afraid of traveling and for more people to be able to help if they see someone seizing. It’s important to me. According to The Guardian, a recent YouGov poll shows that two-thirds of UK adults with no experience of epilepsy would not know how to help someone having a seizure. This scares me. I hope that by reading this you are no longer part of that statistic. I also hope that epileptics will be more comfortable traveling knowing that someone will look after them if they have a seizure.
If you want to find out more on Epilepsy, check out Epilepsy Action or Epilepsy Society for information.