1 in 2 and counting

Social media can come under a lot of criticism for things, I've seen it first hand in fact. But it can also do a lot of good as well. When I started this blog a couple of years ago, I just thought that the odd person would read it and that it would just become a bit of therapy for me to think out loud, so to speak. Blogger, however had other ideas.

There are 600,000 people in the UK with epilepsy, 1 in 103 have the condition diagnosed, so the number is actually likely to be a little bit more, taking into account misdiagnoses. Today when I looked at the stats page as I came in to write about a recent fit I had, it turned my attention to something else, something far more important than a rare seizure. There have been just over 300,000 visits to the blog since it started, one for every two people in the UK who have epilepsy. Given the numbers, there seemed to be a more important use of the blog today than chatting about my seizure... How about we talk about exactly what you should do if you saw someone have an epileptic seizure and exactly what you shouldn't do as well?

I had a very odd day exactly a week ago, where while treating someone else on the train I was on, who was having a fit, I was told I should stop them from shaking and hold them... down.

I guess it would seem like a normal human reaction to do it, but it's the worst possible thing you can do in the situation where someone is suffering one of the common seizures you can experience, a Tonic-Clonic seizure, this is why...

Imagine someone looks like they're in pain during something they can't control, but will likely come round from it quickly. Then imagine the absolute extreme speed their muscles can manage to tense and relax at, because the electronics in their brain are going crazy. If they're not close to anything that could hurt them, they're going to be unable to be stopped from tensing and relaxing, causing them to shake. So why should you NOT hold them down? Well it's simple, they'll be stronger than you and if they're on their back, you would be pushing their spine, head and shoulder blades into the ground where they'll be thumping against it in those areas. If they're on their chest, you would be pushing their pelvis, clavicle, chin and face into the ground where they'll be thumping it against those areas. They might appear to be shaking less, but actually you would be causing far more longer term damage to them as a result of your actions during their seizure.

What's actually happening to them? 

Well the seizure itself acts like an anaesthetic so they're oblivious to any pain during the seizure itself, it's the longer term pain that wouldn't specifically be caused by the seizure that the person would actually be able to feel.

So...

If the person having the fit doesn't hurt themselves during the seizure itself, the only long term effect from it will be a combination of tiredness and hunger. It's like going through a 2 or so minute peak sprint, full on without stopping.

But how do you stop the person from hurting themselves?

Well sometimes it's impossible - if they collapse onto a hard surface or hit themselves on the way down for example. But if you can get something soft under precious parts of the body like the head, then it could seriously affect how long it would take to fully recover from a seizure. 

Of course there's the obvious question of where would you take the person once the seizure has finished? It would be a bit much to expect a stranger to take someone home, rather than call an ambulance. But if you know them, then unless you suspect they have actually badly injured themselves or their fit has lasted longer than 5 minutes, then letting the person recover in their own bed is the absolute best place they could be. If there's someone at home with them even better. The prime need post seizure is sleep, so because many hospitals don't treat them as a priority, the sufferer could be left in the waiting room for hours before they're given a bed. 

So, here's a couple of real scenarios that have actually happened to me during my time since I left the Police because of a seizure 10 years ago...

I had a seizure in bed and woke up from it confused and a bit disorientated. It was in the evening and I had finished work. When I came round I was starving, a little unsteady on my feet and really fatigued. I went to get some toast and soup and ate a couple bits of chocolate too, then set my alarm and had an early night. The result was that I got up in the morning fresh as a daisy and went to work as normal.

When I was a fresher at university, I had a fit while I was out clubbing and from what my friends had told me, the student rep had held me down to try and stop me shaking when I was in the club. I came round properly in hospital in the waiting room after being guided from the ambulance there, because A&E was busy. I didn't see a doctor, but got my friend to get us both in a cab and go home an hour and a half later, because by that point I could barely keep my eyes open I was so shattered. In the morning I woke up and the back of my left shoulder and the shoulder blade itself was absolute agony and my right arm wasn't too clever either. I had to take day off because my headache was awful and I couldn't get to sleep that night because I couldn't lie on my back. It was just too painful. It took another 2 weeks before I could put my hockey goalkeeper padding on over my shoulders because the skin was raw at the top of my back.

I think it'll take a long time before even I don't feel like I need to apologise to someone having to witness me having a seizure. I've been told far too many times "it's scary!" So I always feel like it's my fault, that I've ruined something, or been a burden. I'm not. But it doesn't stop me from feeling like I should apologise for having a seizure. It's just down to a lack of knowledge.

If you've managed to finish reading this then I hope you've learned something new. But I just have one more request... Sorry!

Please share this with your friends on Facebook, Twitter, Linkedin, wherever. Because it's almost impossible by the law of averages that one of the people who have visited the blog, won't see a seizure tomorrow, or the day after or the day after that.

It's you who could be the difference between a few hours sleep and a week or more of rest and recovery for the person having the seizure that you would now know how to treat.


As a final thought, I want to pay tribute to a British MP, who is standing down this May and all the work she has done, including securing a debate on epilepsy in the House of Commons last week. But most of all, like her colleague Paul, for showing what people with epilepsy can do.

Thank you Laura Sandys MP.