Managing seizure triggers is an incredibly important aspect of life with epilepsy. Sadly anti-epileptic drugs (AEDs) can’t be relied on alone and I’m personally reminded of this every time I speak to an epilepsy nurse. But finding the balance between managing seizure triggers and maintaining a relatively normal life can be tricky. It can be a tough balancing act, especially because it concerns your quality of life.
One Thing to Note About Seizure Triggers
Seizure triggers are circumstances that can bring on a seizure for someone with epilepsy. They can be different for everyone, and sometimes what triggered a seizure just can’t be identified. It’s important to note here that not all seizures are epileptic seizures. For example, someone who is diabetic can have a seizure because of their blood sugar levels, not because of epilepsy.
5 Common Seizure Triggers (and how I manage them):
1. Stress and Anxiety
Stress and anxiety is something that everyone deals with in daily life. Surging stress and anxiety levels can be bad news for anyone because they can cause a huge range of health issues. If you have epilepsy, it’s likely they can cause a seizure, potentially leaving you trapped in the vicious cycle of epilepsy-anxiety.
Stress is without a doubt one of my seizure triggers. Not too long ago I predicted a seizure based on how stressed I was feeling at the time. Sadly it turned out that I was right. A few days later I had a tonic-clonic seizure which forced me to slow down. Seizures always force me to slow down when life picks up and I have things on my mind. When I was at university, I was pretty much guaranteed to have a seizure every January. Every year of my degree I had 3 assignments due within the same week. Although I could handle the challenge, my epilepsy could not.
How I manage stress as a seizure trigger:
Stress management varies from person to person, and managing it can take a combination of various tools. Some common stress management techniques include meditation, exercise, doing things you enjoy and just generally taking care of yourself.
The most important stress management tool for me is definitely therapy. First of all, I believe that everyone should go to therapy regardless of what your life is like. But when you have a chronic illness like epilepsy, it’s incredibly important.
I recently started using an app called Better Help, it is a paid-for service but if you use this referral link you can get a free week. Since starting my therapy sessions using Better Help, my mental health has improved a lot. I’ve been going through a rough patch with my epilepsy lately, and therapy is one of the things that has kept my head above water. I understand that not everyone can afford therapy, so please use the referral link for Better Help for a free week and self-refer yourself to the NHS counselling service.
Another significant thing I did to lower my stress was to change the environment where I spent most of my time. This involved spending less time with certain people and avoiding certain places.
It isn’t always possible to change your environment or circumstances. If that’s the case for you, why not try some mindfulness exercises. I recently received The Little Book of Inner Peace: Simple Practices for Less Angst, More Calm as a gift and it is helping me to make positive changes already. From this book, I’ve learnt a breathing exercise that I can easily fit into my life. The exercise helps to calm your vagus nerve system, which in turn lowers your stress. I’ve seen a positive change in my anxiety levels already.
I’ve also gone back to my hobby of horse riding which I have loved since childhood. Spending time outside and around the horses is really calming for me and it ticks the boxes of exercise, time outside and doing something you love all in one!
2. Poor Sleep and Sleep Deprivation
We can all feel grouchy if we have a bad night sleep, but poor sleep quality and sleep deprivation can trigger a seizure if you have epilepsy. Poor Sleep has always been a seizure trigger for my tonic-clonic seizures. In the past, I’ve been able to connect certain seizures directly to a lack of sleep. Sleep can be a significant seizure trigger for lots of people – but luckily it can be very easy to manage.
How I manage poor sleep and sleep deprivation as a seizure trigger:
A key thing to managing sleep as a seizure trigger for myself is trying to maintain a regular sleep pattern. This doesn’t stop me going to clubs and bars with my friends or missing out on the fun. I just tend to alter my sleep pattern the week before so that my body is prepared to stay up later. Last minute plans are still okay too! It’s only a matter of going home a little earlier than friends to make sure too much sleep isn’t missed.
I’ve also cut out caffeine and try to manage my sugar intake. Minimising my caffeine intake has been key to my regular sleep. At first, I stopped drinking caffeine after midday and that helped massively and I no longer had trouble falling asleep. Add this to horse riding again, where I’m getting extra exercise, and I’m having no trouble falling asleep.
It also helps to create a bed-time routine and make your bedroom as relaxing as possible. Two small changes I’ve made that really help is buying this mattress topper that feels like sleeping on a cloud and enabling the “wind down” setting on my phone to start at 10pm. The “wind down” setting changes my phone to greyscale, cutting out any bright colours that might stimulate your brain when you’re trying to relax.
3. Missed Medication
One thing that tends to come with epilepsy, in my case anyway, is a bad memory. I’m constantly forgetting and losing things – it can be so frustrating. But the last thing I want to forget is to take my anti-epileptic drugs (AEDs). It’s easily done. For years I would take my tablets at varying times each day because I often forgot to take them on time.
How I manage missed medication as a seizure trigger:
I’ve now set up alerts on my phone to remind me to take my AEDs. I use an app called MyTherapy that has reminder notifications that don’t stop until I’ve confirmed I’ve taken my tablets.
Another key thing in managing this seizure trigger is to carry my medication with me when there’s a chance I’ll be out late into the evening/night. This way there’s no rushing home to take my tablets, and no worry that I’ll have a seizure because I haven’t been able to take my tablets on time.
Pillboxes are also a great idea, especially if you take multiple tablets at different times during the day.
It’s really no surprise that alcohol is a seizure trigger. According to the Epilepsy Society, it dehydrates your brain, disrupts sleep patterns and can make AEDs less effective. Yet we live in a society where consuming alcohol is a normal part of socialising, so it isn’t always easy to stop drinking. During university, I drank alcohol like any other student, which was definitely counter-productive in working towards a seizure free life.
How I manage alcohol as a seizure trigger:
For some people the alcohol itself triggers seizures, for others, it’s the withdrawal from alcohol (essentially the hangover period) that causes the seizure. For myself its the latter, even though I’m one of the lucky people that rarely gets hangovers. Alcohol really has been one of the easiest seizure triggers to manage because I just stopped drinking. I simply changed the way I socialise, like swapping cocktails for mocktails, or skipping the bar all together for a salsa class. This isn’t to say I never drink anymore, because I do have the occasional drink. It’s pretty much a winner all round to cut out or reduce your alcohol intake, for both your health and your bank account.
The relationship surrounding caffeine and epileptic seizures isn’t fully understood. But like alcohol, you can only benefit from reducing your intake. My experience of caffeine is that consuming too much can increase the likelihood of another seizure.
How I manage caffeine as a seizure trigger:
Just like alcohol, I’ve cut caffeine out. This was a little bit of a struggle at first because I didn’t realise how much I was relying on caffeine to get me through the day. I went through a period of being tired, but once I stopped relying on caffeine, I started to sleep a lot better. My quality of sleep improved and my trouble getting to sleep was, for the most part, gone. Cutting out caffeine is super easy because you just switch to decaffeinated options. Plus with being in a pandemic, pretty much everywhere is closed and most people are working from home. So it’s kind of the perfect time to go through that mini period of feeling tired (if you even get that), seen as you aren’t really going anywhere anyway!
Manage seizure triggers in a way that works for you
Epileptic seizure triggers are different for everyone. The above seizure triggers may, or may not, affect you, but the important thing is to find a way to manage your triggers in the most appropriate way. As individuals with epilepsy, we sometimes have to modify our lives to minimise the chances of having a seizure. This can be hard to accept and I’ve struggled many times with making certain adjustments to my life. Now I actively try to practice acceptance, which makes my life a lot easier. If you’re interested in learning more about acceptance, I highly recommend reading The Surrender Experiment by Michael A Singer.
The best we can do is to make lifestyle changes that benefit our health. I hope in sharing how I manage some of my triggers, it helps others to do the same. Hopefully, we can all create a life where it’s easier to manage our seizure triggers, ultimately creating a seizure-free life. Fingers crossed, because a seizure free life is always possible!