Epilepsy Stories

Allie has drug resistant focal impaired epilepsy.

She was diagnosed when she was around 14, and she is now 20 years old. She has had an unsuccessful lobectomy and two SEEG's. During her lobectomy she had a piece of her left temporal lobe removed in Jan/Feb of 2022. Unfortunately, as stated before it was unsuccessful, she does recall her experience in the hospital being amazing. After the surgery she was able to truly say "I had and survived a brain surgery and no matter how many times I think or say that it amazes me. I think you have to think positively about the surgery". She has been having seizures since she was around 10 and since then she had difficulty getting diagnosed as she went through various testing at different hospitals. Until she was finally diagnosed a few years later. She at present has a good few days with no seizures but will then have a few days with multiple seizures a day and she does occasionally have grand mal seizures.

Naresh's story

This is Naresh, he is and IT engineer and from India. He receives his treatment for his epilepsy at the niraj clinic in his home town. His last seizure was in 2019 but he suffers daily with headaches,brain fog and body pain. He is currently taking Torleva 750 MG, Torpenle 4 Mg at night only, his dose of torleva was increased and he was prescribed the torpenle after experiencing his last seizure in 2019. He gets anxious at the thought of travelling outside of india due to the possibility of having a seizure. He struggles to make connections due to his epilepsy, but he enjoys daily exercise and trying herbal remedies which he has found helps him with his symptoms on a day to day basis. He has only had one seizure in the past 4-5 years and is regular contact with his doctor; he feels hopeful that he will remain seizure free.

Caleb's story

Caleb is an eight year old boy who suffers with so many seizures each day that doctors have said he is at high risk of SUDEP, his parents made a plea to help to prolong his life. Caleb McCarthy was a perfectly normal little boy living a very normal life until he began having seizures overnight on August 2,2019. Caleb was invited to the US where he was diagnosed with focal cortical dysplasia - a type of epilepsy that occurs in the frontal lobe following an abnormality in the brain. According to medical experts it is the most common reason for drug-resistant epilepsy. Caleb remained in hospital in the US for three weeks while he underwent two operations to remove damaged brain tissue. He needed to have further surgery so his parents started a go fund me and tried desperately to raise the funds that Caleb needed for his surgery and like a Christmas miracle on the 14th of December 2023 they reached their goal and Caleb received his surgery in February 2024.

There is still a long path to take for Caleb and his family but they are hopeful that this brain surgery will help Caleb.

Jo's story 

birth Jo was diagnosed with west syndrome and that lasted about 2 years. Because Jo had strokes from an infant she didn't start walking until much later than usual. When Jo was 13 years old she had the HPV vaccine at school which triggered a seizure she says " I Hit my head on the lockers, went down and don't know the rest." From then she had more had tonic clonic seizures and then started having daily focal seizures along side generalised seizures. Jo's triggers are sudden noises and movement, sleep disturbances, stress and sometimes spontaneous seizures.

She says that her local gp told her "there are people worse off" so she decided that because her seizures were so easily triggered she was able to film them and send them to a private health care facility which she says was difficult financially.

She managed to see a Doctor in Birmingham and he told her about the Epilepsy Society and she says "they changed my life, they offered me treatments and support like I'd never had before." Because Jo has drug resistant epilepsy it became apparent that surgery was her only option left. However last year a new drug became available which she started in march 2023 and she has felt the benefits. In fact she had a major milestone of being 12 days seizure free, this was short lived has she sadly has cluster seizures in the evening of her 12th day seizure free. Jo says "I have life long friends during my epilepsy journey and have been able to run marathons, attend patrons lunch, board meetings, become an advocate and even attend a parliament event for epilepsy with my friend Teni who also has epilepsy.

Mabel's story

Mabel was 9 weeks old when she had a spontaneous seizure, whilst herself and her family were out at a soft play area. Her mother says "It was overwhelming seeing her tiny body seize." An ambulance was called and Mabel was taken to hospital, where she proceeded to have further cluster seizures. Once at hospital Mabel had a CT, lumbar puncture, MRI, blood tests and an EEG and was diagnosed with focal epilepsy. Mabel was started on Keppra and 2 weeks later, had further cluster seizures, which resulted in a trip to rhesus. After a change in her medication and the addition of rescue medication, mabel was discharged. Mabel's mother says "When the neurologist said The results show she has epilepsy" my heart sank and I felt sick. 'What does this mean for Mabel? Will she have more seizures?', 'do other children get epilepsy this young?"', 'what has caused this? - is it something we've done?' what support is available? we don't know enough', 'will her learning be impacted?' We had so many questions. As a parent of a child with epilepsy, my world has been flipped. The anxiety that comes alongside diagnosis can be almost debilitating. But with the knowledge and correct support, it is achievable."

Harry's story