CLAIRE

Believe in your strength; you can get through it in time. Listen to your body, don’t put too much pressure on yourself and rest when you need to.

Claire is a long-term ERUK supporter who lives with epilepsy. She is the owner of a vegan and cruelty-free boutique called The Healing Hut and kindly makes regular donations to our work from sales through her business.

How did you find out you had epilepsy?  

In 2007 I was driving my car in the fast lane on the M3 motorway. I was taking my husband to Southampton airport; it was around 8.30 am and everything was fine. I then had a sudden strange, empty feeling come across me. A sensation rising from my legs up to my stomach. I told my husband I did not feel well and within seconds I went into grand mal seizure. It all happened so quickly.

The next thing I remembered I was in an ambulance being taken to the hospital. If it wasn’t for the quick actions of my husband who steered the car I was driving into the hard shoulder, and the fast actions of the paramedics, I may not be here now. Between them, they saved my life. I had further seizures in the ambulance and the hospital. It was a very scary time as I had never had a seizure before. I was 27 years old at the time.

When were you first diagnosed? What tests were given? 

I was given an MRI scan and diagnosed with epilepsy, before being put on an antiepileptic medication called Phenytoin. When I came around after my seizures, I was very emotional, tired, and I had lost parts of my memory. There were things I couldn’t remember, mainly from my childhood, and I still can’t remember now. I was on a dose of Phenytoin in the hospital that made me feel dazed and groggy. I remember feeling so scared. To this day I don’t know how my husband coped, but he did. The paramedics were also amazing.

If it wasn’t for the quick actions of my husband, who steered the car I was driving into the hard shoulder, and the fast actions of the paramedics, I may not be here now.

What was your immediate reaction to the news? And your family and friends?  

About six months before the seizure I had given birth to my first child, a baby girl, and my mum was also extremely poorly with terminal cancer. I was worried about my mum a lot and was also finding it hard being a new mum myself. A neurologist I saw in London believes that the stress and upset over my mum being poorly, combined with the hormonal imbalance, sleepless nights, and possible mild postnatal depression, had triggered my seizures. I just remember feeling grateful that my daughter wasn’t with us in the car that morning.

Unfortunately, I found it hard to understand and cope with the diagnosis at first. My world had been turned upside down. I was so scared to be alone and about being a new mum. I was sad that I couldn’t hold my baby without someone else around, because I was worried I would drop her. I couldn’t take my daughter out for a walk in case I had a seizure while I was outside or crossing the road. I couldn’t even bath my daughter on my own and I was scared all the time in case a seizure would happen again. I suffered bad anxiety for several years. My husband was amazing, but I also felt I was putting pressure on him as he had to take more time off to be with me. He has been my rock and I have been very lucky.

My epilepsy was such a grey area and it was frustrating to have no idea why it started. The MRI scan and other tests revealed no cause. I was put on different medications, but it was a trial and error process. Everyone’s brain works differently, and certain medicines brought on auras. I had further seizures and further tests. I had lost my driving licence immediately after the first seizure, and then again after others. I found this hard as I used to drive regularly, and I was very independent. I felt like a completely different person; a shell of who I was before.

In which other ways has epilepsy interrupted your life?  

My last seizure was when I was on holiday in America. I had a grand mal seizure, then another when I was taken to hospital. I had to stay there until I was well enough to fly home.

When I returned home, I decided I could no longer cope with what was happening and not knowing how to feel OK again. I did some research and I was lucky to find a great private neurologist in London, who put me on new medication and helped with my understanding of epilepsy. It wasn’t cheap, but I have never looked back as he has helped me so much over the years.

My seizure in America was put down to jetlag. I found epilepsy hard as everyday things could set it off like fragrances, food, lack of sleep, or stress. After consultation with my neurologist, I was weaned off Phenytoin and put on Lamotrigine, and I have been on this ever since. I have a small dosage of Cipralex too, which is used to control my anxiety. I have another medicine called Clobazam which I call my “emergency medicine” in case I feel like a seizure is coming or I feel unwell; it’s hardly used but I have it for peace of mind.

I have now not had a seizure in over 8 years. It’s been a long journey of uncertainty and upset, but I came out on the other side due to finding a wonderful neurologist, then the right medication. Over the years I have grown in confidence again.

I used to worry about leaving the house, driving, and going on a plane. I worried about my daughter as I felt I wasn’t a good enough mum, mainly because I was constantly tired and anxious and my memory was awful. I felt bad as my daughter didn’t have playdates from school as I was worried I would seizure in front of her friends and whether they would cope.

I didn’t want to drive anyone else in the car when I got my licence back. Even now I don’t do long journeys and don’t take motorways unless I feel confident. I was scared to go to the gym at one point in case I had a seizure. I didn’t see many people and couldn’t be in busy spaces and I didn’t have the confidence to chat to people as I would lose my words and train of thought. These anxieties took over my life for so long.

Because you may look fine on the outside people don’t know you have epilepsy unless you tell them, and even that is hard to do. I didn’t have any more children due to my fear, but I feel so blessed with my daughter and the life I have now. My seizures have stopped mainly due to my medicine and I am so happy to now be seizure-free.

Do you have a message for researchers working in the epilepsy field?   

A huge ‘thank you’ and please keep up the hard work as you are changing people’s lives. I realise every case is different and I am grateful to feel better now. I was fortunate to be able to see a private neurologist, however, others aren’t so lucky and they need your help. There is still so much to learn about epilepsy. Your work is helping to raise awareness and save more and more lives. I don’t know what I would do without my medication.

What would you say to anyone newly diagnosed, or their family, as a result of your experience of the condition?   

Believe in your strength; you can get through it in time. Listen to your body, don’t put too much pressure on yourself and rest when you need to. Cry if you need to, but please don’t give up as you are not alone.

I felt lost and insecure and unconfident but now I have been seizure-free for over 8 years. I’m on the lowest dose of epilepsy medication and I haven’t had to see my neurologist in years. I have my licence back and I have recently set up my own business – The Healing Hut – which does holistic therapies and vegan and cruelty-free products.

Although I have days when I’m tired, my memory is awful, and I still lose track of people’s names or stop mid-conversation, I have slowly rebuilt my life. I even have a bizarre twitch that my head does occasionally, but I am happy to say I have been able to drive again, travel on holiday, and work again. My daughter is now 13 and I can be proud that I have worked through it. I try to raise awareness and help people with epilepsy with my holistic work and I support the work of Epilepsy Research UK through the proceeds from sales of my natural products. I am aware of how challenging this illness can be and I realise everyone’s case is different, but please stay strong and just be you. Have patience with yourself; you’ve got this.

What are your hopes for the future regarding epilepsy research or the future of awareness and understanding of the condition?  

I hope that we find a cure and find out the answers we need to help stop seizures. I wish that people with epilepsy didn’t feel so scared or alone as it is a hard illness to explain and understand. Each case is different. I did lots of research, tried different diets and different medications to fix it. I didn’t want to feel so helpless after having a seizure; it scared me so much, as I know it does others.

I think more counselling and support needs to be available for newly diagnosed patients. I wish people with epilepsy and their families were given more advice and guidance on epilepsy and ways to manage the condition in everyday life. Awareness in schools and colleges would be good and educating more people would be great, so they know what to do in the case of a seizure and how to treat people with epilepsy. I love the Epilepsy Research UK website as it is important to read people’s stories and find out information, so you feel like you aren’t alone. I hope there will be more research and support for women who have epilepsy and want children, as I found it hard knowing what to do for the best. There is so much that we need to raise awareness for with epilepsy and SUDEP, but over the years it has got better and that’s amazing. I hope one day we will beat it.

– Claire, July 2020

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