Not all of us with epilepsy know for sure what triggers our seizures and some of us do. These individual triggers don’t cause epilepsy itself, but might provoke a seizure. Although they are not identifiable in some people, it is important to recognise some of the factors that are more likely to cause a seizure. However, what is a trigger for one person may not be for someone else. Keeping a seizure diary over time, noting all details about seizure, often a pattern will emerge and it can become clearer what the individual’s triggers are.
SOME COMMON TRIGGERS
- Forgetting to take medication is perhaps the most commonly known trigger, or not taking the correct dose. Research shows that missing just one dose could cause a seizure. Forgetting has always been a problem of mine and a tablet organiser (and often my husband!) helps me keep track. I also have the correct doses written down for those days when I might need help from someone other than family..
- Feeling tired or not getting enough sleep can be a trigger. Although it’s not always easy to get adequate rest, it is important to try, so as to reduce the risk.
- Alcohol, particularly having a hangover, is a common trigger because that is the stage when the brain is dehydrated. Also recreational drugs – illegal drugs and legal highs because there is no control on what goes into these substances and they could provoke seizures or interact with medication.
- Stress doesn’t actually cause epilepsy but it may trigger seizures for some people who already have it. Also, epilepsy itself causes stress, therefore it’s a vicious circle. Living with the threat of losing control of your body weighs heavily on the mind and is the cause of a great amount of anxiety and stress. Some people don’t sleep or eat well, drink too much, turn to recreational drugs and suffer from anxiety and depression. Therefore, there is a close relationship between stress and epilepsy.
- Flashing and flickering lights, strobe lighting and certain patterns can trigger seizures in people with photosensitive epilepsy.
On my first visit to the epilepsy clinic in Manchester, I was encouraged to keep a Seizure Diary and to be as detailed as possible about each seizure, the time and place etc. I wasn’t keen on the idea as I found it tended to focus my mind on seizures, and my method of coping was to do the exact opposite. However, I knew keeping a seizure diary had earned its place as a very helpful diagnostic tool. If someone had asked me, at the beginning, if I had any obvious triggers, I would probably have said there were a few, but over the next few months, a pattern had emerged. I had seizures under supermarket lights and felt dreadfully unwell when looking at food displayed under direct light e.g. the meat counter. I had a seizures when fluorescent lights flickered because they were faulty. Over Christmas, flashing tree lights affected me and also camera flash, mainly when a photo was taken in dark surroundings. During an open air carol singing concert, the singers and audience all held candles and the flickering flames triggered a seizure. Sometimes there were lights and flashes on television which triggered a seizure but not the television itself. I was ironing a gingham skirt and the pattern triggered another one.
It seems hard to believe that I didn’t make a connection between my epilepsy and all these events, or at least, only a loose one. I had frequent seizures and didn’t think beyond that. I do remember telling a doctor that I’d had seizures when out shopping with my family in supermarkets and, in fact, that’s where I had the first ever event, before epilepsy was diagnosed.. His answer was a sarcastic “No, I don’t like shopping either.” Eventually I had hospital tests and was told that many of my seizures were triggered by flickering and flashing light. I am also sensitive to certain patterns like stripes and checks.
Only 3% of people with epilepsy have photosensitive epilepsy although many assume it’s more common. My life has been very affected by seizures being triggered by lights, and having to avoid certain lights. Flickering and flashing lights are everywhere! I have been into a shop with a flickering faulty fluorescent light and it was still faulty weeks later! Camera flash causes many problems. Everyone loves to take a photo and they take them everywhere. One of my children’s Christmas concerts was disrupted by me having a seizure, when several cameras started flashing. It was very distressing and I couldn’t bring myself to go to any other similar occasions because the same would happen again and I risked my children being distressed. I stood outside the school, just for them to know I was there. And when my daughters were bridesmaids, I stood outside the church- I have had to miss many weddings. Over the last ten years my son and daughter and other members of my family were married. I was so moved when they asked guests not to use flash camera settings for medical reasons. At last, I could take full part in the day. Although, a cinema film itself won’t trigger a seizure, flashing, flickering and strobe lights that may be in the film, can. I have not been to a cinema for about twenty years because of it. The same applies to the theatre, until a few years ago, when our son and his husband and our two good friends, encouraged my husband and I to go, first to London and then to Chichester, to see shows. They took the trouble and went to the expense, of going to see some of them first, to check the lighting. It’s hard to describe how good it felt to see a show at last. If anything is going to make my heart beat fast, it’s music and dance and before my life took an unexpected turn, it was music and singing that was a big part of my life. We saw quite a few shows with them until, life took yet another turn; but that’s for another time.
During a routine appointment with my epilepsy specialist in Manchester, I was talking about my problem with lights and how badly it was limiting my life. By then the majority of our friends had drifted away, because our relationships had changed since I’d been diagnosed with epilepsy and I was experiencing so many negative attitudes towards my seizures, that I’d lost confidence. I was unable to leave my house on my own, so also having to avoid the light triggers as much as possible, my world became an obstacle course and it virtually closed down.
My consultant was specially understanding and stands out, in my experience, as one of the few doctors who appeared to get under the skin of his patients. He gave me the tip of covering one eye when exposed to a flash etc. as the brain is only affected if both eyes are open. That has worked for me on many occasions. He also arranged for me to see Professor Arnold Wilkins, a scientist working with the Medical Research Council at Cambridge University, who had an interest in the research of Photosensitive Epilepsy. There were early reports of coloured glasses, usually blue, reducing some photosensitive seizures. He developed a diagnostic instrument which allowed a more scientific way of choosing the best colour. My husband and I travelled to Cambridge and Professor Wilkins proceeded with his test. The results showed that blue lenses could help me and may reduce some of my seizures. When I went to my next hospital appointment, I still hadn’t had the appointment from Cambridge, to pick up my glasses. Also, my consultant was on leave and I was seen by his registrar. The communication between the two seemed to have been non-existent, as this doctor didn’t know about Professor Arnold, the glasses, and the work he did, and he wasn’t really interested! He wanted me to start a new drug, Lamotrigine, and to start straight away. I went to Cambridge shortly after and I was soon wearing the startlingly blue glasses! My seizures did reduce in number but whether that was due to the new glasses or the new drug is anyone’s guess.
I wore the embarrassingly blue glasses for a few years. I am short sighted and so they were prescription glasses. The reason I stopped wearing them is another story and again, one for telling elsewhere in this blog.
Photosensitive Epilepsy- Epilepsy Action
Photosensitive Epilepsy – Epilepsy Society
Photosentive Epilepsy- Young Epilepsy
Epilepsy Foundation- Triggers