Claire was diagnosed with epilepsy four years ago. She shares her feelings when first diagnosed and the challenges she faced and how she has overcome them.
How did you feel when you first knew you had epilepsy?
When I was first diagnosed with epilepsy in July 2018, I was completely stunned. I’d been having what I was calling ‘funny turns’ since April.
I didn’t know anyone with epilepsy and really knew nothing about it.
I had so many questions – How? Why? What do I do now? Having to surrender my driving licence – the barriers this now put in my way – it was horrific.
I felt my life was caving in before my eyes and all that was happening was appointment after appointment, seizure after seizure, feeling completely awful and being overloaded with information that I wasn’t quite willing – nor able – to understand at the time.
What type of seizures do you have? How does it affect you?
I have focal aware seizures. I get a few seconds notice that it’s going to start – a butterfly feeling in my stomach – like you’re on a rollercoaster – my mind starts racing/dreaming.
All these memories flood back into my mind so quickly. I can hear people if they are talking but can’t understand what they are saying and I can’t respond, but I know where I am.
They usually last about 1-2 minutes. It can sometimes take me up to 24 hours to recover.
I started off having lengthy focal aware seizures. A year later in April 2019, I had my first tonic-clonic seizure lasting 20 minutes and this was terrifying.
Not for me – as I really knew nothing about what was going on at the time until I ‘came to’ – but for my family.
My tonic-clonic seizures are controlled but I continue to have focal aware seizures.
They are much more manageable with medication – albeit frustrating, exhausting, and hard to get your head around the ‘why me’?
What challenges have you faced since being diagnosed with epilepsy?
When I was diagnosed with epilepsy in July 2018, I was started on medication the same day at the hospital by my consultant. I attended regular appointments as the seizures continued (I was averaging around eight seizures per day).
I was referred to the Psychiatrist and Neuropsychologist as I was completely devastated that I could no longer drive (one of my favourite things to do!). The waiting times were long, and I felt so isolated and alone.
The medication didn’t work, and I tried various types. I had horrible side effects – nausea, dizziness, mood swings, exhaustion – the list goes on.
As the medication continued not to work, medical staff felt I was having pseudo seizures and told me I was ‘making it up’. As if I didn’t feel bad enough! I felt like I was really losing it.
After a five-day stay in hospital, I didn’t experience a seizure and a nurse told me it was all ‘in my head’.
I went home that day, got showered, all the glue out of my hair from the EEG machine and had a 25-minute tonic-clonic seizure which my then nine-year-old daughter had to video to send to the consultant to prove I did have epilepsy.
After this, it was decided I should attend Quarriers – the specialist epilepsy centre in Glasgow.
I stayed there for just short of two weeks where I had multiple seizures and was diagnosed with two types of epilepsy – temporal lobe and catamenial.
The relief I felt from being believed more than anything was quite unreal.
I continue to battle through seizures. I did get my medication balance right for a while and was seizure free for over 18 months, gaining my driving licence back. However, this was short-lived before seizures began again.
I started volunteering at Citizen’s Advice Bureau (CAB) to prepare for working again and now work in my local Job Centre assisting and supporting the public, working full time and really love it. I consider Quarriers, CAB and my full-time job to have been saviours throughout my journey.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Oh yes – without a doubt. Not only did my world ‘stop’ but so did my children’s. I couldn’t collect them from school anymore or take them to out-of-school classes.
My son was terrified of me – if he saw that ‘look’ on my face he’d disappear as he knew what was about to happen.
That feeling is devastating. My husband not only had to run his own business, but he also now had to drive me around to appointments and ensure the kids were both where they needed to be too.
Some days I’d be too ill to get up, so he’d also be running the house. Not an easy task! Memory loss along with all the other side effects affecting every aspect of your life is tough to handle.
Losing your long-term job, your independence and your confidence is rubbish.
On a positive note, having epilepsy has made me who I am today. Confident – perhaps in a different way than I was before. Full of knowledge and determination.
I want to know everything that affects me – diagnosis, medication, coping mechanisms – and I’m determined to live with this in the best way possible, so I have a good quality of life.
I take care of myself now too. Yoga, mindfulness, and learning to stop when things have become too much.
Do you feel that epilepsy has stopped you from doing what you want to do?
At the beginning yes, but not anymore. I’ll not be ruled by epilepsy. It’s hard not to be stopped by seizures.
How long it takes you to recover from them. The side effects of the medication. How low you feel at times. How isolated you can feel.
Then you realise how far you’ve come. How well you’re doing. How proud you should be of yourself and that everything is still in your grasp.
I’m so proud of now being able to hold down a full-time job and how well I am doing in the workplace.
I couldn’t do this without the support from my employer, colleagues, friends and family and I’m always grateful to be so lucky.
What are your main seizure triggers and how do you manage them?
Lack of sleep – I make sure I go to bed at a reasonable time and switch off by listening to a sleep story. These days I don’t normally get to the end and I’m out like a light.
Stress is another trigger. I try not to get stressed, but we all know it’s easier said than done.
I do try to avoid stressful situations as best I can and make sure I take time out after a stressful day to unwind with candles, music and perhaps a book.
Do you feel there is a stigma surrounding epilepsy?
There is still a stigma surrounding epilepsy, as there is with all disabilities, hidden or not. It’s a lack of knowledge more than anything.
Fear of not knowing what to do to help someone in a difficult situation.
Having worked in a hospital for some time, even I didn’t know what to do to help someone having a seizure until I was diagnosed and started learning more about the condition.
Getting the knowledge out there is so important and why we need charities like Epilepsy Scotland sharing vital information with the wider community.
What would you say to others who have been recently diagnosed with epilepsy?
Don’t be afraid to ask questions. If you don’t understand what you are being told, ask your consultant more about it. Write down things that come to mind in between your appointments too.
It’s so easy to forget when your mind is running ten to the dozen with a new diagnosis and potentially a big life change. Speak – to family, friends, Epilepsy Scotland, and your GP/Nurse/consultant.
Don’t be afraid to let people know how you’re feeling. It’s new, it’s scary, and you’re probably feeling rotten.
Gain that support – everyone just wants to be there for you. Know that there is light at the end of the tunnel. It may be a long road – but you’ll get there.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.