Anna is in her thirties, is a qualified sports coach and currently works at a primary school taking PE lessons and after school sports clubs. She is a keen hockey player and plays for the first team at her local club. Anna also has epilepsy.
At the age of 24 she was involved in a head on collision when a 21-year-old ploughed into her car at 70 mph when overtaking on the wrong side of the road. Anna’s epilepsy resulted from the head injury.
Her first seizure was witnessed by her then boyfriend. Within a few days she saw her doctor who sent her away, telling her to come back only if she experienced another seizure. Following her second seizure she returned to her doctor but this time she asked to be referred to a specialist as she knew that something was wrong.
Anna had a number of investigations done: MRI scans, ECGs and EEGs. At this point she was informed that they could find no reason to explain her epilepsy as she ‘had not had a substantial head injury at the time of the accident so the epilepsy could not have been caused by the car accident’. With her mother’s support and through her own dogged determination Anna asked for a second opinion. Two years later her second specialist concluded that the only explanation for the epilepsy was the accident as there is no family history and it had never happened to her before. It was a further ten years after this that Anna found some early notes on her medical file which confirmed the cause: she did in fact have lesions on her brain.
Anna experienced nocturnal seizures for which she started medication. Her first drug made her feel unwell and caused her to feel ‘spaced out’. Lamotrigine was fairly new at the time but this suited her better. She says “It took a year to get things under control with the meds. My job was stressful and so I needed to be put on a higher dose. Under supervision from my specialist we tried reducing the dose but I had two nocturnal seizures in one night. I was then told that basically the epilepsy was with me for life.” Anna continues: “I have now been two years seizure free but I have still got all the emotional and memory issues. For Anna the most frustrating part was “not getting help with dealing with the condition. Not knowing you can get free prescriptions, disabled railcards and so on.” Anna feels that there is not enough information about the condition or support for those newly diagnosed, and their families.
As with so many other people with epilepsy Anna experiences emotional highs and lows; her memory and ability to concentrate are affected. She was however helped by reading about Dave Hellings’ story on our website. It showed her that she is not alone in her experiences; which is one of the reasons that Anna has been happy to share her story too.
Anna is a positive, upbeat person, with huge amounts of energy but she freely admits that her life has been negatively impacted by her diagnosis in several ways. “It has stopped me getting the job I wanted in the RAF. It has affected my relationships as I am so emotional and stressed out. I have depression and I am on medication which has actually normalised my moods. I still have to push myself to go out and do the things that I enjoy. I get tired a lot and very forgetful which I try and hide at work. I write lists everywhere, set reminders on my phone, write on my hand, write in my diary, and leave post-it notes. I put my clothes out the night before; then as soon as I wake up I know what is happening that day. I have days where I have no idea what I am doing that day and get disorientated. For a few months following the accident I had to have my mum waking me up and telling me what was going on that day. Scary really.”
Looking to the future Anna feels that “Research is the most most most important thing ever! I hope for doctors to know more about the various causes of epilepsy and if there are any ways of reversing the cause and problems. My specialist said that it is still an area of medicine in which we are still finding out the answers.”