Epilepsy Anxiety is real – and it’s destructive

Published by Mica Howard on

Epilepsy Anxiety, it is very real and it's destructive

Epilepsy anxiety doesn’t seem to be talked about much for one reason or another. In all honesty, it can be very easy to assume that epilepsy only consists of physical seizures like tonic-clonic seizures. How I wish this was the case. In reality, epilepsy comes with a whole host of other issues, especially stress and anxiety. It’s a case of luck which type of physical and/or mental health-related side effects you get hit with.

In terms of mental health, stress and anxiety are a huge part of living with epilepsy. It probably isn’t a surprise that stress can trigger my tonic clonic seizures. But now my epilepsy anxiety is surging and I didn’t even know. As it turns out I’ve been living in the fight or flight response for who knows how long. I was absolutely clueless until I had an anxiety attack.

Epilepsy anxiety

Epilepsy Anxiety and Stress

The kicker about anxiety, stress and epilepsy is that they all work together to form the perfect vicious circle. In my instance, my seizures started when I felt the stress of getting high GCSE grades in high school. From then on I’ve consistently felt the pressures of life both in and out of the education system. Each experience where I was exposed to long-term stress, in turn, triggered a seizure.

You might ask why I didn’t act on this long term stress? Why did I just live with it until I had a seizure?

Sadly it’s not that simple. Stress has always been underlying for me, meaning I often don’t know that I’m stressed until I have a seizure. Noticing underlying stress isn’t easy, so instead, I’ve made the choice to not participate in some opportunities. My career and social life might suffer, but that is much better than the alternative of having a seizure.

Although I can make this observation about stress and my seizures, it’s important to note there is no cause for my seizures. Like the 50% of individuals diagnosed with epilepsy, the doctors don’t have a clue where my seizures cam from.

The Vicious Cycle

The classic cycle starts with the fear of having yet again, another seizure. That fear alone is enough to trigger a seizure. If you’ve read about what it’s like to have a tonic-clonic seizure, I’m sure you’ll understand why.

Epilepsy anxiety is typically the starting point for this completely unnecessary vicious circle. After I’ve had a tonic clonic seizure, the cycle restarts. At first I worry about being alone afterwards, for fear of going through such a traumatic experience alone. Then in combination with general life stressors, as the days go by, I can become very aware that another seizure is approaching. Then if I do get another seizure, its back to the start, living my life under the shadow of epilepsy anxiety.

Every single seizure free day is a blessing, and I am incredibly grateful for each seizure free day. I keep a count because living a day without a seizure is an achievement. Yet, for myself at least, the longer I go without a seizure, the more my epilepsy anxiety grows. The worry that I’m approaching the usual time limit for a seizure-free life grows, only adding to the likelihood of another seizure.

Epilepsy can make it difficult to remember your most favourite memories

Every single seizure damages my brain, which is no surprise because my memory is terrible. My daily life is impacted by my short term memory that barely compares to a goldfish. My long term memory often fails me when the conversation goes onto fond memories with family and friends. Being unsure if I actually did remember the memory, or if my brain recreated the memory used to be upsetting. No matter how hard I try to ignore it, anxiety still shows up over the stress of not being able to remember some amazing moments. But I’ve had no choice but to make peace with this for the sake of my mental health.

Now the biggie. SUDEP is a HUGE fear for myself and for many others with epilepsy. SUDEP stands for Sudden Death because of Epilepsy, which means that you can die from an epileptic seizure. Pretty scary. I take precautions, like buying an anti-suffocation pillow, but that possibility is always there.

The above are just a few things that add to epilepsy-related anxiety. There are undoubtedly many more, especially considering there are over 60 million people worldwide that have an epilepsy diagnosis. Keyword being diagnosis. There will be plenty of people out there that aren’t diagnosed for one reason or another.

My first experience of an anxiety attack

Not long ago I experienced my first anxiety attack. It was such a terrifyingly bizarre experience.

The physical signs of anxiety appeared at the same time as my medication increase. My heart rate started to regularly increase to a fast pace that I would struggle to control. But it would usually subside after closing my eyes and focussing on some deep breaths.

This time around, the deep breathes didn’t work.

Panic attack
Panic and anxiety attacks are no good for anyone, but especially for people who’s seizures are triggered by stress.

The next thing I knew my heart was pounding. I could feel it all over my upper body and it was extremely loud in my ears. I was confused and worried, which upset me and made the situation even worse.

As I started to uncontrollably hyperventilate, tears ran down my face and I was pacing the room. When I noticed the pacing, I sat down and tried my best to calm down.

“I’m okay, I’m safe” I repeated to myself in the hope of ending this dreadful experience. This worked for about 10 seconds before breaking back into tears and hyperventilating.

Then I felt I was shaking, but my body looked still. This only made the whole experience even more confusing.

Luckily my partner is amazing and is always calm. He calmed me down easily, despite not being able to do this myself. My body relaxed and I felt safe again – a huge relief.

Epilepsy is more than seizures

Stress and anxiety are, unfortunately, best friends with epilepsy. There are various ways of reducing stress and anxiety levels, but they are also just a part of life.

candles and incense for meditation

It has been helpful to reflect on my life after having an anxiety attack and increased seizures. I’ve noticed that I had taken on a lot of responsibilities over the past year. Ironically enough I had picked up various projects to keep myself busy and away from a different stressful situation.

Now I’m aware of this, I’ll be reflecting on my life regularly, paying particular notice to what’s keeping me so busy. Plus, I’ll be going back to therapy. Living with underlying stress and anxiety is detrimental to someone with perfect health, nevermind someone living with a chronic illness.

In the world we live in today, looking after your mental health is increasingly important. It can sometimes be difficult on where to start so take a look at this NHS page on mental health. Hopefully, you can find something that helps, if not at least points you in the right direction.


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