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.