Prognosis

The prognosis of epilepsy for some people is really, really good. It always depends on what's caused the epilepsy in the first place. So, for example, if the cause of epilepsy is because of a tumour, there's obviously two conditions going on, there's the tumour and the epilepsy. However, for the person with epilepsy, some people get complete control on one epilepsy medication and they become seizure-free, they carry on life as normal after a year, they carry on driving, work's fine, family life's fine, everything is absolutely brilliant, it has no impact on their quality of life at all. Unfortunately for other people, the impact of epilepsy is greater and it may be for some people that that first medication doesn't work, that the second medication doesn't work, that the third medication doesn't work. And for some people, they may be on numerous epilepsy medications and they are still having seizures. And for those people with the prognosis, it's about trying to get a balance between seizure freedom, medication side effects and quality of life. And what is good for me, may not be good for you, may not be good for the other person, it's what that person wants out of their life.

So, for one person, they may say, "I don't want any seizures at all. I'd rather have blurred vision or feeling sick every day as a side effect of the medication." But for someone else would say, "I'd prefer to have one seizure a week than get any of those horrendous side effects." So, it does depend on the person. They suggest up to 70% of people are seizure free on the right medication. In real terms, it's probably more likely to be just over 50%. Often this is because people don't want to change the medication again, they have had many medication changes over the years and they are quite happy with coping with what they have got.

Having the diagnosis of epilepsy doesn't just affect the individual with the seizures, it can also affect family, carers and paid-carers. For a lot of people who have a friend, relative or a resident who has a diagnosis of epilepsy, it becomes a scary time. They are concerned that the person's going to die. A lot of people will say, "I was convinced they were never going to come out of the seizure." Unfortunately for some people this then tends for them to become overprotective and over nurture people and it may mean that the person with epilepsy then doesn't do as much activities as they were doing before.

It's really important for the carer to get support for them. There's a lot of charity organizations available that will support carers, that they can go and talk to other people who are in similar situations. But it's important to remember that with epilepsy is not just the individual, it's their whole social network, their family network that's also affected. For some people, they can't go to sleep at night, they don't go to sleep at night just in case their relative has a seizure in the night. They can't leave the room just in case that person has a seizure. They can no longer go to the shop, just in case that person has a seizure. And again for the carers there needs to be a balance between allowing the individual to have a good quality of life whilst trying to be safe at the same time.