A-Z

Epilepsy

Triggers for epilepsy

Most seizures happen completely out of the blue. For some people, though, seizures are triggered by certain things. These often differ from one person to another, and many of the people we interviewed noted that more than one factor was involved in setting off their seizures. Many people said that stress, anxiety or excitement triggered their seizures. Tiredness and lack of sleep were also common triggers. Some people discussed having seizures because of late nights or going without sleep. One man explained that lack of rest and shift work particularly affected him.

 

Explains that lack of rest and shift work used to trigger his seizures.

Explains that lack of rest and shift work used to trigger his seizures.

Age at interview: 43
Sex: Male
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
I found that in the early days when I was becoming used to the tablets, that if I did those things that you shouldn't do, like you pushed yourself too hard, I remember one particular day because I was off work a lot, the police when I first found out I'd got it wouldn't let me come back to work. So I had three months basically at home when, apart from these occasional seizures, I was perfectly alright really so I could do anything. So I was decorating one particular day but I did too much, worked far too late and the following day I had 3 seizures in one day. So in those early days I had to start being very careful with what I do. Now I would say that there are very few restrictions on my life and what I do, and the tablets don't really restrict me in any way. So if I stay up late, as long as I don't work shifts for too long, I did do shifts at the Post Office for a year

You did?

Yeah and I did, I did nights for a full year and it started to affect me after a while. I started to feel very light headed and having dizzy spells, and I think it was all related to the fact that my tablets were balanced so that the majority of my tablets were taken at night, so that they were beneficial to me in the morning, whereas I was working the opposite way round all of a sudden. So after a while I did notice a big issue there, so I had to come off nights.

Some people reported that seizures were more likely to occur if they were ill or unwell. Several women also mentioned hormonal changes. Epilepsy can start or go away at any time of hormonal change. Some women reported that seizures were often likely to occur around the time of their period. One also said she was more prone to seizures when relaxed or bored rather than busy.

 

Discusses various factors that trigger her seizures.

Discusses various factors that trigger her seizures.

Age at interview: 46
Sex: Female
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
Or if I'm ill I might have it, when I've had a bad throat or something it's gone up a petit mal, it's gone up to a grand mal attack.  But touch wood on the whole they're just little ones really, nine out of ten times. 

And you said before it was just before a period or during? 

Yes just before, I mean eventually, hopefully I'm gonna stop that soon, but I still get that now sort of thing, at the same time but the middle of the month its not so bad. Its towards the, that other side of the month about the, a couple of days before its due and then a couple of times when I'm on, and then it goes sort of thing, and then it stops 

Again.

So can you kind of predict when it might happen or?

Roughly, not always because I wouldn't say it didn't happen in the middle of the month because it has done sort of thing, it does do that as well. But nine out of ten times it's usually around about the time of that you know, whether its hormones or not I'm not sure! (laughs). And of course when you're relaxed, because you're relaxed, it comes on and you let it, sort of subconsciously you let it you know. And you know I think it tends to be, at first it frightens you if you don't know what's gonna happen. 

Lack of food triggered seizures in some people. Others explained that excessive alcohol was likely to bring on a seizure. Some anti-epileptic drugs interact with alcohol, so alcohol should be avoided with these drugs. For other drugs, drinking alcohol in moderation will not usually cause problems. Recreational drugs, such as amphetamines, ecstasy, cocaine and heroin, can increase the frequency of seizures in people with and without epilepsy.

 

Explains that excessive alcohol was a trigger for her seizures.

Explains that excessive alcohol was a trigger for her seizures.

Age at interview: 46
Sex: Female
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
Now I went through a period between the time I was 18 and late 20s, mid to late 20s, when I had a fit on average about every year, one fit per year. And that, I look back on and well I know at the time that was connected with being a teenager, drinking too much and going out and going to discos, late nights, early mornings and drinking. And that combination, the early nights uh, the late nights, early mornings, and drinking too much, that would induce a fit. 

So whenever you kept away from alcohol you didn't have any? 

Yeah, yeah well, I mean I drink but one or two glasses of wine at a time, that's me these days! (laughs).

 

Explains how taking recreational drugs set off more seizures than usual, and advises against...

Text only
Read below

Explains how taking recreational drugs set off more seizures than usual, and advises against...

Age at interview: 25
Sex: Female
Age at diagnosis: 13
HIDE TEXT
PRINT TRANSCRIPT
I also had, a number of years ago, I also had um, I also had a number of seizures that were brought on through drugs as well.  And that was, that was a very horrible experience. I actually, it's a number of years back, I actually went clubbing one night and I took a number of pills, not loads of them but just a few. And I came home one night and had a number of seizures that night and they were a lot longer, they took a lot longer than normal.  And if there's anybody that has epilepsy, I definitely suggest that you don't take any because with the amount of seizures that I had that night, it almost killed me.

How many did you have that night? 

I had five seizures that night and they were about, five seizures and they were all, I was told they were all within about forty-five minutes of each other. 

Yeah.  Were you also taking your medication as well as the, was it Ecstasy? 

It was Ecstasy, yeah.  I wasn't on any medication then no, no, I wasn't on any medication. Like I said, that was back then in the different days, in the bad days, the days when you think you know it all and you do all things differently you know. So but, either way though I still think even if I was on any medication I still think the same would have happened because Ecstasy either way is still incredibly powerful, especially with epileptics. 

Photosensitivity (sensitivity to flickering light) affects only a small number of people with epilepsy. Those we interviewed found that watching television, cinema films or using a computer often triggered their seizures. One woman explained that some types of lighting affected her. Like several other people we spoke to, she also noted how her moods and emotions affected seizures.

 

Discusses having photosensitive epilepsy and how her emotions can affect her seizures.

Discusses having photosensitive epilepsy and how her emotions can affect her seizures.

Age at interview: 18
Sex: Female
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
Oh another weird thing is I can watch sports on telly, I can't watch films very well, because it flashes from scene to scene. Whereas on sports such as football it tends to follow the players you know and it sort of, the camera glides. And cartoons. 

And is that just on the telly or also in the cinema say? 

Also in the cinema, I struggle with the cinema because its so dark. I have to have lights on when I'm watching the television.  In the cinema it's dark and it's really loud as well and it gets quite hot. I went to the cinema for the first time in about six months the other week. We actually went to see like a, well me and my friend thought it was really scary, it was a '12' I think. We spent the whole time with our hands over our eyes! We were like! (laughs). It was good, but again it was the flipping from scene to scene.

Yes, but you managed to watch the whole thing?

Yeah and I, I just concentrate on when it will be over. I try and break it up into sections, you know sort of quarter of an hour until the break and then three quarters of an hour until it finishes.

 

Discusses having photosensitive epilepsy and how her emotions can affect her seizures.

Discusses having photosensitive epilepsy and how her emotions can affect her seizures.

Age at interview: 48
Sex: Female
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT
And I find shopping really difficult with the lights and the, the heat of the shops and the movement of everything and everybody so I don't run to a town if I can help it, I'd rather stay in quieter situations which is a shame because there's a big part of me loves window-shopping and going and watching films and going to, the theatre seems to be fine. Cinema is more of a problem, especially these days. The type of filming is so different to how it used to be and I see, and the television as well. The type of filming that's on the television now I think is particularly unhelpful for people with epilepsy, there seems to be a lot of coming in close and flashing which I find quite difficult to watch. In fact I often don't watch it because of that. I also find I'm terribly sensitive to noise, so the cinema with its decibels of volume, I sometimes wonder whether the whole world is deaf and its just me who can hear things normally!  

'I mean it's difficult to say whether that's just the epilepsy or how much emotional content is involved in that as well and also what is epilepsy. It seems to me so charged with emotions, with one's own emotions. I find that when I'm happier I have fewer fits. When I'm unhappy I have more fits. Which in a sense speaks for itself and it's a vicious circle.

Certain types of sound and music triggered seizures in some people. Several noted that, although particular things triggered seizures, there was still a lot of uncertainty about when seizures would occur.

 

Discusses the unpredictability of her seizures despite knowing her triggers.

Text only
Read below

Discusses the unpredictability of her seizures despite knowing her triggers.

Age at interview: 27
Sex: Female
Age at diagnosis: 26
HIDE TEXT
PRINT TRANSCRIPT
Now I've noticed that during my period when I am more, more weak, my auras they increase and I have more auras during the day. And before, right now I'm on my period right now, but I haven't had a fit or anything. But before the previous periods that I've had, during the first day of my period I've had a fit, a major fit. And during the last day I have a fit. And in between in the month, when I'm not in my period, I have a fit as well. So its uncertain when I'll have a fit but I notice that I have these two fits when I'm in the first day of my period and on the last.

And have you noticed anything with being tired or?

Yeah I've noticed that if I'm really too tired, over-excited or I talk too much - like now! (laughs) - I talk too much, I laugh too much, I'm more likely to have an aura. But these auras they don't make me have a fit exactly.  As I said, I might have a fit at any time, it doesn't indicate like its because if I talk too much or I laugh too much or I'm. But even though, even if I take my medication on time, I'm always resting, I'm not tired, I'm not over-excited - laughing, talking, whatever - I still have, sometimes I still have the major fit. And I think to myself why have I had this fit because I haven't done anything.

So is it due to these things that I do, I don't know why I have it, you know. I just don't understand why I have it. 

Some people mentioned seasonal changes. One man recalled having more seizures in the winter months than in the summer, and explained how anxiety can set off seizures.

 

Discusses having fewer seizures in the summer than in the winter, and that worry often triggers...

Discusses having fewer seizures in the summer than in the winter, and that worry often triggers...

Age at interview: 43
Sex: Male
Age at diagnosis: 9
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes actually during the summer months I seemed to be better off.  It was when the autumn months begun, autumn and winter, they [the seizures] seemed to increase in number, I don't know why. It would have been summer when the weather was brighter and warmer maybe my, it improved  how I felt more. I enjoyed it more and not feeling so down with the weather and the atmosphere.

Yeah. Did you notice that you had more seizures when you were stressed out or worried about something as well, or any other triggers?

I would say it was more likely, I remember my doctor saying to me 'don't get worried or excited'. But I was, out of those two, it was much more likely if I was worrying about something that it would help to bring on a seizure, because I would more likely be keeping it to myself - the worry - just thinking about it constantly, not concentrating on what I should be doing. And that worry would help to bring on the seizure whereas excitement, more likely joining in with other things going on, joining in with other people and things like that, it took my mind off on another subject and that would keep the seizures away I noticed.  And that was one thing I found quite interesting.

Different factors affect people in different ways. For some, heat was a trigger. A few people said that physical exertion, such as sports, brought on seizures. One man also noted that certain food additives affected him. Others mentioned that seizures were sometimes triggered by certain smells.

 

Explains that certain food additives and exercise can trigger his seizures.

Explains that certain food additives and exercise can trigger his seizures.

Age at interview: 26
Sex: Male
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
I always look for particular links prior to ever taking the medication. About a year ago I noticed there was a definite link between food colourings and also particular ingredients within medication. For instance there was a, there was a medication called Amoxicillin and that has specific food colourings in it. 

So did you make this link yourself or did?

I did, that's right. I've always had to report back to the actual consultant, I did make this link, I pursued this particular link, read into it and  because I've noticed there's a pattern, there was a specific correlation that when I'd eat particular foods, I thought that I just had a reaction to these particular additives. And I'd say that without the medication that I would continue to have these attacks. And as a consequence I can still carry on eating the same foods because the medication controls it these days. However, I do avoid amoxicillin as medication. And I just wonder if anyone else has had the same experience.    

Have you ever tried any complementary therapies or alternative treatments?

No, no. I've always been one for exercise, I thought that exercise would say prevent attacks if anything, but it has interfered to a point, not really with say strength training but with the aerobic training such as running and rowing in particular I've experienced problems say towards the end of my, my workout or the activity. So its, its quite de-motivating. You hope the exercise will actually improve your motivation. However, when you have attacks whilst exercising, it can damage your enthusiasm. 

Last reviewed May 2016.
Last updated May 2016.

donate
Previous Page
Next Page