In this edition, we hear about how Epilepsy affected Iain and Diane from our Epilepsy and our Understanding Neurology courses.
So I have nocturnal epilepsy and the sort of seizures I have are tonic-clonic seizures, which probably is what people first think of in terms of epilepsy, it’s the full job, if you like, unconscious body jerking, biting tongue, and that sort of thing. But with nocturnal seizures, it doesn’t mean that it always happens at night, it means it happens when I’m asleep.
He doesn’t know anything about it. So it’s down to me to assess what we are on if it’s going to be very severe, I’ll have to time him, see if he’s going to get into further seizures, if he is that becomes a life-threatening situation, then you have to ring and get ambulances involved, etcetera. But sometimes we don’t have that but sometimes it is like that. And they say it’s quite scary if you don’t see it. If you’ve never seen it, it is very scary. And even though he’s being up and dealing with it for nine years now, it’s still very scary.
For me on a day-to-day level, it doesn’t affect me too much. Really, the only thing is avoiding myself getting too tired because that might be one trigger as well, and possibly a rising temperature might also have an effect on it, but from a day-to-day level, I think actually it’s more difficult for the carer.
The only thing that I’ve spotted now we have worked out because you never know is tiredness. He’s feeling particularly tired and he looked particularly tired, I’m like, “Are you alright?” He says, “I feel a bit tired.” And also there were other triggers for my husband is a high temperature, so the last few have been due to a chest infection and a severe cold, but they set off the very, very severe ones, which is why I end up getting the ambulance. So those are the ones we need to worry about. So I just keep an eye on him, and if he feels a bit we stop, paracetamol to take the temperature down. But most of the time he doesn’t like taking tablets unless he has to. So we just keep an eye.
I don’t know anything about it. I think when you’re in it, you are the one that’s affected by it. Actually, it’s less of a worry when you’re suffering it than someone actually seeing it and having to deal with it as well. I know nothing about it until I come around.
So most of the time he’s in bed when it happens. So the convulsions are quite severe, so sometimes he’s ended up getting out of bed. His body is pushed out of bed. And he has ended up hurting himself on the furniture. So he smacked his head on the furniture, dislocate his shoulder. So I’m sort of trying to make sure he’s not in any way moving things around trying to get pillows behind him.
And as I come around if you can imagine, it’s literally a nightmare. When the paramedics have been called, I’m in bed, I’m aware of that and I have these people trying to attack me, from my side of it. It’s literally like being in a nightmare, so it’s very frightening.
For Ian, when we have got the ambulance people in, it’s actually scary for both of us because you’ve got strange people walking around your house and they are trying to make him feel comfortable, they are telling me to keep him comfortable and ’cause he’s not always responding obviously straight away, so they are waiting sometimes for him to come out of whatever seizures he’s been in and then they just assess him, check him, ask me to keep talking to him. Sometimes it’s really scary. Suddenly he wakes up and he got all these people looking at you in your own house and he says, “What’s going on, what’s going on?” And I explain that he’s had a seizure.
