I was diagnosed with epilepsy when I was 16 after only having 2 tonic clonic seizures. I was then seizure free for 6 years and was able to drive and have independence.
But now I’m having regular seizures and I can’t identify what is causing them and neither can the specialists. I always take my medication on time, eat regularly, get at least 8 hours of sleep at night.
Does anybody have any unusual seizure triggers?
I’m the kind of person that needs answers and not knowing what’s happening is really affecting my mental health. Any help/advice is appreciated!!
Hi Rebecca
Sorry to hear that your seizure activity has changed. Lots of people have different triggers and unfortunately, in lots of cases, people never find out what their triggers are.
I am a parent of a young person with epilepsy - and in the 18 years since they had their first seizure, we have never been able to pin point what triggers them - or what the underlying cause of their epilepsy is.
It sounds as though you are doing all the right things in mitigating risks by leading a sensible life-style. Make sure you talk to your healthcare team about your concerns, especially if they are having an impact on your mental health. Young Epilepsy have got lots of tips on mental health on The Channel http://thechannel.org.uk/ including a new mental health space.
Hope things improve for you.
Hi Rebecca, I’m so sorry for the late reply on this!
That’s such a shame that your seizures have come back like that, I’m so sorry, that must be quite disheartening for you…
As Lisa said there can be so many triggers and sometimes we will never know! One thing I know is a huge trigger for me is, like most people, lack of sleep. but the biggest trigger for me is actually hormones. Do you track when in the month you are having your seizures? Mine always come back the same time every month!
Maybe keep track if you haven’t already. I’m thinking of potentially going on some form of contraception to see if that helps.
Hi Rebecca, I’m Alannah and have had different forms of epilepsy for the last 19 years and I’m only 23. Over the past 5 months my seizures have become a lot worse like you described and I am also same person as you and want answers quickly.
I’ve waited 4 months for answers and no face to face appointments only time I’ve seen anyone is when I EEG which showed activity but I’ve not had anything seen really want to know what’s happening.
Sorry for asking but how are you getting on now have you gotten answers?
I’m so sorry you’re in a similar position. I had my EEG at home and again they still found seizure activity so they’ve increased my medication from 250mg of Lamotrigine to 275mg which seems to be working so far.
Fortunately I have had face to face appointments but they’re still not sure on what it could be. I had my contraceptive implant removed and no longer take anything for contraception. I’m not sure if it’s made a difference or not and I’m not a medical expert lol but I feel better for it. I haven’t had a full seizure in 1 year now but still no answers on what triggers it unfortunately.
