It’s National Epilepsy Week. This year’s theme is “Epilepsy Matters”, which encourages people with epilepsy to share their experiences and the things which matter to them about epilepsy. To mark the occassion, Communicourt intermediary Florence has shared her own experiences of epilepsy, alongside helpful learning and tips for court professionals who may be working with a client who has the condition. At the end of the post, you’ll also find information about how to help someone who is experiencing a tonic-clonic seizure.
Being a “me” with epilepsy
by Florence Roberts-Bowman, Communicourt intermediary
When I was about 8, I woke up in a wheelchair in hospital. I was a bit confused, as the last thing I really knew, I’d been watching Saturday morning programs on our big [cathode ray] tv. I don’t remember being particularly scared, just embarrassed to be wearing my pyjamas in public.
I don’t know to what degree a diagnosis of epilepsy impacted my little 8-year-old self. I knew that we got a new TV. I knew that I often had to close my eyes during films and theatre trips when everything got a bit strobe-y (which is always, annoyingly, during the best bits!). I didn’t have any responsibility for researching or managing my condition because my parents did all of that. And, thankfully, it wasn’t something that was intrinsically worrying for me. I used to enjoy an appointment at Walton Neuro, as it meant time off school, and invariably ended in a trip to the café. Over time, I’ve managed to glean dribs and drabs of information from specialists, understanding that there was a genetic aspect, a mutation. I have a letter somewhere about exactly what frequencies will set me of.
I will admit I’m not the ultimate authority on epilepsy. Firstly, I tend not to be awake or able to look in a mirror during a seizure, so I have no idea what they look like. Secondly, whenever I do engage in literature about epilepsy I get hit with words like ‘death’, ‘mortality’ etc., and that’s not particularly palatable. And I suppose, finally, thinking about what having epilepsy actually means sometimes makes me want to run back to that café and have a coffee and a brownie.
With that said, I thought I’d take some time to engage and explore what epilepsy means to me and other people with the condition, particularly those who we encounter in a court context.
As I’ve grown up, I’ve learnt a lot more about what epilepsy is, and I’ve often found that, actually, it is quite difficult to find commonality between experiences. It surprised me to learn that only 3 in 100 people have photosensitive epilepsy (triggered by flashing lights or contrasting patterns – Epilepsy Action, 2022). Other seizure triggers might include:
- Alcohol and drugs
- Menstrual periods
- Missing meals
- Increased temperature due to illness(Epilepsy Action, 2020).
This is why it is important not to assume that someone with epilepsy will be triggered by flashing lights, and instead seek to understand their individual experiences, where necessary. In a court environment, stress and tiredness are particularly important considerations. It’s essential for court professionals to be cognisant of someone’s presentation and to minimise possible triggers.
Important questions to ask to gain this information could be:
- What things cause you to have a seizure?
- What warning do you get?
- How often do they happen?
- What time of day do they happen?
(Epilepsy Action, 2023)
A starting point when working with someone with epilepsy is to check in with them at the beginning of and throughout the day, in order to monitor whether they have slept or are particularly anxious or stressed. Some questions like ‘did you sleep well?’ or ‘what did you have for breakfast?’ are very innocuous but can offer helpful insight. If long days in court, early rises, or travel are an issue, then shorter court days could be arranged.
When working with someone with epilepsy, it is also important to have a mechanism for breaks to be taken flexibly or on a more urgent basis. This may be to clear the court if someone is having a seizure or if the person is experiencing a sign that a seizure is approaching (for example someone may experience visual hallucinations before certain seizure types). As these warning signs (or certain seizure types) may not always be immediately obvious, it can be helpful to have someone close at hand to monitor presentation or provide the court user with a mechanism to request a break themselves (e.g., holding up a card or using a signal).
Having said that, I recently asked a janitor a Leeds Crown Court to turn off the flickering light in the toilets, so sometimes there is a straightforward answer!
When I had my first seizure it was the notorious ‘thrashing around on the floor’ type. The name for this is tonic-clonic or, alternatively, ‘grand mal’. I prefer the name grand mal because that would mean ‘big bad’ and that seems a fair description. It was only later that I was recognised as experiencing absence seizures (petit mal), which is where I forget where I am for a brief minute and flicker my eyes.
The impact that these seizures have on my life is markedly different to a tonic-clonic seizure. I will usually have a couple of absence seizures in the morning, generally at the weekend. Occasionally someone will point these out to me, but it doesn’t affect my activities. It’s more of a concern for me that people think I’m being rude and rolling my eyes. In contrast, if I had a tonic-clonic seizure, I would need some time to go and sleep it off. It would be a lot more concerning. If someone called an ambulance because I had an absence seizure, I would be quite annoyed because it was a waste of time. On the other hand, if I had a tonic-clonic seizure, it could be an appropriate step.
There are lots of different seizure types and it is important to appreciate factors like:
- Different seizure presentations
- Their varied impacts on the individual
- The kind of assistance the person would require during and after the seizure.
Seizure types are classified according to where they arise from in the brain. They can start from:
- A single location (focal)
- Both hemispheres (generalised)
- An unknown location in the brain
The presentation of that seizure will then relate to its origin. For example, the seizures I experience both have a generalised onset.
Another important area of variation is the individual’s level of awareness during seizures. For example, in a tonic-clonic seizure someone will lose consciousness, but in a focal aware seizure an individual would not lose awareness. It is important to appreciate that, for someone who experiences seizures in only part of their brain, the symptoms can be very different.
For example, in the case of a focal seizure, someone may experience:
- Sensory symptoms (like unusual smells or tastes, a tingling)
- Emotional symptoms like a feeling of dread or déjà vu
- Involuntary motor movements (like lip smacking, wandering around)
- Being vacant
- Automatic body functions (such as swallowing).
These visual resources, created by the Epilepsy Society may be helpful in understanding seizure classifications:
Whilst I think it is important to appreciate the differences between seizures, I am by no means saying that you need to know your ‘tonic’ from your ‘hyperkinetic’. That would be a difficult task as there are 40 seizure types! Most individuals with epilepsy (or someone close to them) will know what symptoms they experience, what triggers them, how often they have them, and what, if any, help they need. I particularly appreciate resources such as the first aid information on the Epilepsy Action website which highlight that what you should do in the case of a seizure is likely to vary a lot.
Important questions to ask someone about their seizures could be:
- How long are your seizures?
- What happens when you have a seizure?
- Do you get a warning before you have a seizure?
- How long does it take to recover?
- Do you need any first aid after a seizure?
- Do you need any help after a seizure?
- Do you take any medication?
(Epilepsy Action 2023)
IMPORTANT: Whilst the first aid required for people experiencing seizures may vary, it is important that if someone experiences a seizure that is over five minutes long, an ambulance should be called. The name for this is Status Epilepticus, which carries a risk of mortality and can lead to medical and neurological complications.
Perception and comorbidities
In court, I once worked with a service user who had epilepsy. She had an epilepsy alert bracelet that would often go off and sent an alert to her phone to let her know that she had a seizure. Often, she did not notice herself that she had them, but it didn’t phase her, it wasn’t dramatic, and we didn’t have to adjourn when the alert sounded.
This presentation and impact differs from the wider perception of epilepsy, as many may misperceive seizures as dramatic and debilitating. Alongside misperceptions about the symptoms of epilepsy, there are also seem to be many stereotypes about the lives people with epilepsy lead. In literature around epilepsy, descriptors such as ‘socially isolated’ often crop up. As with so many of the things I have discussed here, I think this is, at best, a generalisation – something that a brief caveat could dispel…
For some people with epilepsy, certain activities are restricted, but I don’t think there is anything inherent in people with epilepsy that means they would have difficulty interacting or forming relationships. I particularly wouldn’t want a panicked parent reading that on Google while waiting in A&E after their child has had their first fit. I’d choose to believe that, where people with epilepsy are socially isolated, this is because of the barriers in society rather than there being an aspect of epileptic people that means they are ostracised. However, I know this is perhaps my own cross to bear. At least society has stopped believing that people with epilepsy are possessed by evil spirits (Kaculini et al. 2021)!
Of course, I know that these misconceptions about epilepsy arise because some people lead very different lives to me. People with epilepsy experience higher rates of certain comorbidities. For example, around 1 in 5 people with epilepsy have a learning disability (Epilepsy Society, 2019). Additionally, the cause of some epilepsies may affect the individual in its own right (for example in the case on head injury or stroke). Epilepsy often co-occurs with Cerebral Palsy, with studies giving incidence figures of Epilepsy in Cerebral Palsy as between 15 to 60% and higher (Sadowska et al. 2020)  . Further, the relationship between Epilepsy and different conditions can be complex. The risk for autistic children having epilepsy without a learning disability is 8% and the risk of epilepsy for autistic people who have a severe learning disability is 20% (National Autistic Society 2017). Thus, for these groups, epilepsy may be just one factor that makes up their presentation or need.
Whilst I was researching this blog, I read that in the UK 70% of people with epilepsy could be seizure free and only 52% are actually seizure free. That’s quite a stark thing to read, but it does make me wonder whether that is because there are people who don’t have the ability to advocate for themselves like I do. Other people that may not have had the same impetus to control their seizures as I did, such as living independently, or going to university.
I’m never quite sure how epileptic I am. I don’t have tonic-clonic seizures anymore because of my medication, so, theoretically, I could never tell anyone and be ‘normal’. I don’t tend to believe that epilepsy impacts my life, but, at the same time, I’ve never had a burning urge to be an HGV driver or a DJ in Ibiza. I am lucky to have found a job where it is the norm to travel on public transport and I do not need to drive. Things like that make me feel that I’m making choices and my path in life hasn’t been determined because of my epilepsy. But that might not always be the same and, at some point, I’ll have to change my medication and I may feel a lot less ‘normal’ again.
For about 10 years of my life, I’ve been taking Sodium Valporate (Epilim). This successfully controls my seizures, and felt a bit like a magic pill when other medications weren’t 100% effective. However, Sodium Valporate has become a lot more (in)famous recently for causing birth defects, which means that I’m continually telling health professionals that I won’t be becoming pregnant, and being offered other, less preferable, medications. Thinking about changing my medication is a big, ominous unknown. It’s hard to think about giving up my ‘normal’.
I described this predicament to an advocate and service user once, as the service user had children who were epileptic. The advocate took a breath and then responded, “You could get a dog”. I laughed and responded that you can’t get dogs for epilepsy like you do guide dogs. She replied, “You could get a dog instead”.
I’m a little more reticent now about talking to service users with epilepsy about my epilepsy. I used to think that it’s useful to share experiences as a way to relate and form rapport. Now I think that there are so many differences in what that actually means, that it’s not fair to compare. I think you have to give people space to feel what they want about it because, even if nothing disastrous is happening at the moment with your health condition, it’s still always there in the background. And I start and end every day by taking my pills.
For National Epilepsy Week, the charity Epilepsy Action is encouraging people to watch and share the video below, which explains how to help someone who is having a tonic-clonic siezure. You can learn more about epilepsy, donate and get involved in National Epilepsy Week by following and exploring organisations like Epilepsy Action, Epilepsy Society and Young Epilepsy.
 Kaculini CM, Tate-Looney AJ, Seifi A. The History of Epilepsy: From Ancient Mystery to Modern Misconception. Cureus. 2021 Mar 17;13(3):e13953. doi: 10.7759/cureus.13953. PMID: 33880289; PMCID: PMC8051941.
 Małgorzata Sadowska, Beata Sarecka-Hujar & Ilona Kopyta (2020) Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options, Neuropsychiatric Disease and Treatment, , 1505-1518, DOI: 10.2147/NDT.S235165