Blog post: How can living with epilepsy affect your perception of life

Tuesday, 26 March, 2024

By- Zita Francsics

Did you know that epilepsy affects 0.5-1 % of children worldwide? That’s roughly the same as the prevalence of diabetes. Epilepsy is unfortunately an incredibly common condition, yet very little is known about this disease by the public.  

Epilepsy is the periodic recurrence of seizure activity in the brain when certain areas within it become hyperactivated. Normally, your brain exists in perfect balance between excitatory inputs (the ones facilitating your brain activity) and inhibitory inputs (the ones preventing it) which is crucial for our normal brain function.  

In epilepsy, the balance between the two inputs shifts towards excitation, which causes your neurons to fire more often. This overactivation then spreads across brain cells just like gossip among people, affecting more and more areas of your brain as it progresses.  

  

The brain is a highly versatile organ, being responsible for everything from perception and awareness all the way to decision making. It is therefore no wonder that the malfunctioning of this complex machinery can severely affect the quality of lives of the patients, even when they are not experiencing a seizure. 

Examples of this malfunctioning include neurological conditions that are often present as comorbidities with epilepsy, such as Autism Spectrum Disorder (ASD), and Attention Deficit Hyperactivity Disorder (ADHD). Moreover, anxiety and depression are also often experienced by epileptic individuals. The enhanced neuronal firing associated with seizures can also often cause sleep disturbances and altered circadian rhythm, as the brain is having problems transitioning into the quiet state associated with falling asleep, which is characterised by less brain activity.  

  

Another issue epileptic individuals often struggle with, which might be more overlooked than the above-mentioned examples, is alterations to your senses. Indeed, the imbalance of inhibitory-excitatory signalling in an epileptic brain will also reach areas responsible for sensory processing. This often leads to hypersensitivity to different types of stimuli, including tactile, auditory, visual inputs, taste and smell.     The effect of these heightened sensations can be anything ranging from feeling uncomfortable in your clothes when it rubs against your skin, being unable to wear clothes made of certain materials, being a picky eater or simply tasting food more intensely, all the way to seizures that may arise from the stimuli. These types of seizures are called reflex seizures, and have multiple subtypes, but are most commonly induced by either loud sound, various simultaneous sound sources, or bright, flashing, or flickering lights. Some patients have also reported that they especially become hypersensitive to sensory stimuli after the onset of a seizure, especially for the following few hours.  

This article aims to make people understand how difficult life can be for people living with this condition due to their altered senses. This can manifest in many ways, such as not being able to enjoy concerts or certain movies, having to be extra cautious about using the web, not participating in parties due to all the vivid colours, light, and sound, and more. Many epileptic patients claim that they also have trouble being around children (including their own sometimes) given the loud and highly energetic nature of kids, and their lack of understanding about personal space.       The issues seem to be more recognised in autistic individuals, rather than epileptic patients. While their co-occurrence is common, especially in childhood, most people do not realise that epilepsy is just as big a part of the picture when it comes to factors that limit how you can live your life.  

People must understand that there is an interconnection between neurological conditions like epilepsy, autism, or anxiety, that all stem from abnormal functioning of the brain. No matter whether the cause is genetic or acquired throughout your life, these conditions can have a significant impact on your way of living.  

Everyday difficulties include minute things such as having to wear 100% cotton clothes, or noise cancelling headphones to make life a bit easier. Therefore, whenever we meet an epileptic individual, we should consider all the things that might be part of their condition and try to be mindful about things that might be potentially triggering for them. A little attentiveness can go a long way! 

 

Author Bio: 

Zita Francsics (She/Her) is a 1st year Epilepsy Research Institute UK PhD student, studying how sound-induced seizures arise in a genetic mouse model of autism, under the joint supervision of the Osterweil and the Nolan Lab. When not in the lab, she is either cooking up something tasty in the kitchen or cuddling her cat in her free time.  

 

References: 

  • Engel-Yeger, B., Zlotnick, S., Shachar, E. (2012, May 14-16). Behavioural manifestations of sensory hypersenitivity among children with epilepsy [Conference presentation abstract]. Journal of Neurology & Neurophysiology, International Conference and Exhibition on Neurology & Therapeutics. Las Vegas, Nevada, United States.  

  • Epilepsy Foundation, Epilepsy and Sensory Overload (Community Forum Archive; 2006-2019). 

  • Seidenberg, M., Pulsipher, D.T., Hermann, B. (2009). Association of epilepsy and comorbid conditions. Future neurology, 4(5), 663-668. doi: 10.2217/fnl.09.32 

  • Van Campen, J.S., Jansen, F.E., Kleinrensink N.J., Joëls, M., Braun K.P.J., Bruining, H. (2015). Sensory modulation disorders in childhood epilepsy. Journal of Neurodevelopmental disorders, 7(34), 802-813 doi: 10.1016%2Fj.celrep.2018.12.088 

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