Ideas about the causes of epilepsy

A change in brain chemistry can cause brain cells (neurons) to fire off in sudden bursts, triggering an epileptic seizure. Why this happens is still not exactly known. Many people we interviewed explained that, although the causes of epilepsy are often unknown, they sometimes wondered what might have brought on their condition.

Explains that she sometimes wonders what might have caused her epilepsy.

Age at interview 49

Gender Female

Age at diagnosis 14

View profile

At 5 years old I got knocked down by a car and I ended up in hospital, and I think my mum and dad feel sure that that’s what caused the epilepsy. But I don’t think it did, I think it’s just one of these little things that happens in life and I happened to be run down. Because my sister was knocked down with me and she seemed to bounce back up, she was alright (laughs).

I’m told I’ve got epilepsy because of this blood vessel that’s leaked over the years causing the seizures. Well is it just because they weren’t aware of it that it wasn’t dealt with when I was a young girl or was it something, was I born with it? Was it something that happened perhaps because, I mean how many times do we knock our heads when were children, is it something that happened because of that? And then what caused it to break, what caused it to burst, did I do something sort of the week or the month before? And if other people suffer with epilepsy sometimes it’s picked up straight away, even when they’re babies, why wasn’t mine?

Embed Print Transcript

There are many causes of epilepsy. They include head injuries, brain tumours, infections, brain injuries at birth and inherited diseases. Occasionally, epilepsy can begin many years after the damage has occurred. For many people with epilepsy, no known cause is ever found. In the generalised epilepsies, genetic factors are likely to play a role. Although some epilepsies are hereditary, in most cases this is not so and the risks of passing epilepsy on to children are very small.

Some people’s epilepsy is caused by a specific structural problem in part or parts of the brain. This may have resulted from some form of head injury, occurring either at birth or in later life, or from a brain infection, for example. It is also possible that the brain did not develop properly or there is some form of scarring, lesion or a birth-mark on the brain which the person was born with. Some of the people we interviewed discussed having accidents or knocks to the head as possible causes. Others noted causes such as lesions and scars.

Explains that some scar tissue caused her epilepsy.

Age at interview 46

Gender Female

Age at diagnosis 18

View profile

And I had a brain scan and as I said they could see some scar tissue on my brain, and so they said it wasn’t necessarily hereditary. It was due to a head injury. Well I can’t actually remember actually having a head injury but they said it might be even at birth. I was born a couple of months early and they said that could have been due to it sort of thing, but it wasn’t necessarily a hereditary thing, it’s a thing a lot of babies tend to get apparently and it was just coincidental my mum had it [epilepsy] as well. But whether or not they got that quite right sort of thing I don’t know. Obviously I banged my head in the park like a lot of young people do but nothing sort of that bad, and from then on I’ve sort of suffered with the epilepsy. They gave me these Phenobarbitone tablets to take. I didn’t have it any more, that was the only grand mal attack I had for a long time.

Embed Print Transcript

Some people speculated whether their epilepsy had been caused by meningitis, measles or febrile convulsions as infants. Many also pointed out, though, that this had not been confirmed by doctors. One woman, whose son had severe epilepsy, explained that the seizures were a symptom of a more serious condition. A few people reported having a brain tumour that was causing the seizures. One woman explained that a stroke, which starves the brain of oxygen, had caused her epilepsy.

Explains that his epilepsy might have been caused by febrile convulsions but that this has never…

Age at interview 45

Gender Male

Age at diagnosis 26

View profile

Have you wondered about the causes of your epilepsy?

That’s an interesting question because when, when I was diagnosed and one of the reasons why I had this inkling that I may have had epilepsy was because I had febrile convulsions as a baby, when I was about 18 months old. And its not very common but it can act as a trigger towards future epilepsy. So when I was diagnosed at 26 and realising that these strange little ten second feelings, these sensations were actually simple partial seizures, and I realised it was probably from the febriles, from the febrile convulsions that they may have been caused from that or started then. I did ask a neurologist about it once, one of the top neurologists in the country, and they said that its, its not necessarily true that one will start the other, it may be a gradual process, and it just happens to be that some people develop the type of epilepsy from having febrile convulsions as a child;

Embed Print Transcript

Explains that her son’s seizures are a symptom of a more serious condition.

Age at interview 22

Gender Female

Age at diagnosis 1

View profile

At the ages, at the age of 17 he had another EEG and he was diagnosed with Lennox-Gastaut syndrome. This is when he, when he had periods of non-convulsive stasis seizures, so he was having seizures all the time.

Did you get much information from the doctors and consultant?

Not really because Lennox-Gastaut syndrome involves quite a, a few different things like autism, Tourettes syndrome, which [Son name] had periods of… and the child looks like hes, like a demon possessed at some times. Very hyperactive, with the seizures as well, and the school thought he was a very badly behaved child with epilepsy and they didn’t take the epilepsy seriously. Now I know that the epilepsy is the main thing which affects him. The autism’s secondary to the epilepsy and one starts the other off. So you have to keep him calm. If hes calm his autism doesn’t get out of control and if his autism gets out of control his epilepsy gets out of control.

Embed Print Transcript

Explains that her epilepsy was caused by a stroke.

Age at interview 52

Gender Female

Age at diagnosis 30

View profile

So in your case, was it the stroke that brought on the epilepsy?

Yes, but they seemed to think what it was the stroke which was caused through having taken the birth pill.

The contraceptive pill?

The contraceptive pill.

Which you started taking?

Which I started taking when, before I was married and although it was changed on one particular occasion on to another one, those were the days when I thought to myself, ‘Well, theres no reason why I shouldn’t be taking the birth pill. Everybody’s taking the birth pill. It had got it’s purposes. But there were also situations there when, towards the end, I knew for an absolute fact if I was driving I would suddenly say to [my husband] if he was sitting beside me, ‘I’ve got to stop. And I would get out of the car and I would get this, getting this terrible, terrible feeling which I know was, was obviously I feel a part of a, a stroke. You know, all down the one side. And as you feel, seeing me now, I grasped my hand which is one thing which will happen, has happened over the past years, that’s the first thing that goes is my hand. The feeling, those feelings are horrible feelings.

Embed Print Transcript

Several of those interviewed said that although they did not know what might have caused their epilepsy, they believed that stress played an important part in its onset. One woman advised against dwelling on the causes of epilepsy and explained why she was unconcerned with the causes of her condition.

Explains that stress played an important part in the onset of her epilepsy.

Age at interview 39

Gender Female

Age at diagnosis 25

View profile

I had CT scans, MRI scans, and it came about that I actually have a scar, had a scar on the temporal lobe caused as it turned out by being a forceps delivery at birth.

Well my parents were great obviously, but it came about actually later that my parents were actually going through a divorce at the time and the stress from sort of being in the middle of it brought the epilepsy on apparently. So although I had the scarring since I was born, it was stress that actually sort of aggravated it. They hadn’t actually split up at the time, so they were brilliant, they really were. But I was having the petit mals that you get before, anybody who has epilepsy will tell you how horrific that is, its terrifying, its just like having a bad dream, the taste in the mouth.

Embed Print Transcript

Explains that the causes of her epilepsy are not an important concern to her.

Age at interview 46

Gender Female

Age at diagnosis 15

View profile

Have you ever wondered, or its not been something that’s been a concern?

No, its not really been a, that much of a concern.

Because it’s been very well controlled.

Yes.

I think it may have been, I mean I’ve read in places that you can have a little scar tissue, I mean it might be that. I might have had a fall as a child, who knows, children tend to have falls. But no I’m not going out on a quest to find out why I developed epilepsy.

Embed Print Transcript

How epilepsy affects the family

The reactions of family members to a diagnosis of epilepsy vary enormously. Many of those interviewed noted that, after the initial worry and concern, family...

Epileptic seizures

Epilepsy is the most common neurological condition (affecting the brain), in the world. It is defined as a tendency to have recurrent seizures. In this...