Epilepsy is a condition of the central nervous system that impacts more than 50 million people worldwide, causing physical suffering, emotional stress and compromising hopes and dreams.
It has no discrimination, affecting all races, gender and ethnicity and, although more prevalent in children and people over 65-years-old, it can occur at all ages and stay a life-long condition.
There is help – the seizures are stopped or reduced for most people by anti-epileptic drugs (AEDs) which are prescribed by doctors. There is hope – research is decoding the origins and pathways in the brain to stimulate drug development and improve therapies.
What do you know about epilepsy?
Scientific research helped us understand more about the brain’s complex physiology and illuminate some mechanisms involved in epilepsy, and to locate the focal point of seizures in brains. Discoveries have also shown that epilepsy is a diverse group of rare diseases that share a pre-disposition to seizures.
Studies into genetics, metabolism changes, brain structure abnormalities, the immune system and infectious diseases are identifying potential triggers for seizures and methods to calm or neutralise their effects.
The role of genes is clearly influential – 50 genes have been newly linked to epilepsy in the last three years1 but their relationships, combined with changes in brain structure, are complex and difficult to define.
But the good news is that a gathering force of knowledge is accelerating the development of targeted drugs and is increasing the promise of more therapies becoming available. The imperative is to get the right treatment, and develop new therapies, to enable people with epilepsy to live safe, full lives and not have their careers interrupted.
There is much hope. There is much work to be done.
8 things you should know about epilepsy
1. It is a disorder of the central nervous system
Epilepsy is a neurological condition which triggers abnormal brain activity but it is not a mental health condition.The statistics are arresting: more than six million people from a population of 850 million in 53 countries in Europe have epilepsy, according to WHO statistics2, with 300,000 new cases diagnosed each year. Epilepsy Alliance Europe believes that up to 40 per cent of patients receive appropriate treatment3.It states: “The impact of epilepsy goes well beyond the seizures because the treatment gap is high, public understanding is limited, and the social stigma causes people with epilepsy to live in isolation.”
2. Not all seizures involve convulsions; they can present as feelings of detachment or confusion
There are more than 40 different types of seizures4 which are sparked by sudden, intense bursts of electrical activity in the brain that disrupt the signals carrying instructions to the body. These scrambled messages can provoke a wide range of seizure, from convulsions through memory lapses to passing out, that last for varied times. They often come with no or little warning and can feature anything from mild feelings of detachment or confusion, numbness or visual disturbances to stiffness, jerking movements and loss of consciousness.People with epilepsy can experience more than one type of seizure. Epilepsy is different for each person and the underlying causes are complex and difficult to diagnose.Anyone with a high fever, low or high blood sugar levels, alcohol or drug withdrawal or brain trauma may be susceptible to a one-off seizure but this is not epilepsy. It is only diagnosed when two or more unprovoked seizures are experienced and a doctor predicts the likelihood of more.
Getting a diagnosis is the gateway to managing the condition and, for most people, getting on with their lives.
The World Health Organisation estimates that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
3. Some people remain aware through them while others lose consciousness
Clinicians divide seizures into groups to help them prescribe appropriate treatments but they are faced with a huge variety of symptoms. The area where the intense electrical activity occurs will have a bearing on the type of seizure it triggers. Absence seizures cause a person to become blank or unresponsive and may appear to be ‘day dreaming’. They may not even notice that the seizure happened. Tonic Clonic seizures cause a person’s body to go rigid and they become unconscious, often falling backwards and enduring a period where their muscles spasm to cause jerking movements.
Other seizures can involve sudden jerks while for some people, the body goes floppy. Some people suffer a combination of seizures while others experience just one type. Clinicians often ask for a seizure diary so they can track frequency and characteristics to provide a sharper diagnosis and treatment plan.
4. For 50% of patients the cause of their epilepsy is unknown
Clear causes for a seizure are trauma, brain damage at birth, a stroke or infection but in around half of all cases it is difficult to define the source. The brain sends out a bewildering number and array of electrical signals to control the body and this complex circuitry is hard to analyse.MRI scans can identify the source of brain activity and provide more clues to an epilepsy’s origin but the cause of around 50% of cases remains unknown.
5. Epilepsy is not a mental health condition
The vast majority of people living with it have no cognitive or psychological problems. But research has estimated that 35 per cent of people with epilepsy suffer depression because of the difficulty managing seizures and the impact on their personal and professional lives.Having the condition can cause anxiety and a research study concluded that adults with active epilepsy were three times more likely to report depression than those without the condition.5 Additional research has shown that areas of the brain responsible for seizures could have an influence on mood and that enduring the stigma of epilepsy and its negative impact on work and relationships can lead to stress and anxiety.
6. Photosensitivity from exposure to flashing or flickering lights can trigger a seizure in three per cent of people with epilepsy
Photosensitive epilepsy can be triggered by lights flashing or flickering at a frequency between 16 and 25 times a second, although for some people it can be as low as 3 times a second. The flashing imagery and patterns can range from bicycle lights and Christmas lights to TV screens and strobe lights.It is more common in children aged between 7 and 19-years-old with females slightly more likely to have photosensitive epilepsy than males.
7. Strokes and Alzheimer’s Disease are main factors that trigger epilepsy in seniors
People with Alzheimer’s have an elevated risk of epilepsy and most experience them as brief periods of amnesia or unresponsiveness, rather than physically obvious seizures. The onset could be due to changes in the brain structure caused by cell death and brain shrinkage with age.The number of people worldwide aged over 65 is expected to rise from around nine per cent today to 17 per cent (1.6 billion) by 2050.
8. Anti-Epileptic Drugs (AEDs) control the condition in 70 per cent of people by reducing electrical activity in the brain’s neurons
Clinicians have more than 20 AEDs they can prescribe to control epilepsy. They don’t cure the condition but act to control the levels of chemical in the brain that influence electrical activity and potential seizures.For around 60% of people with epilepsy, the first medicine prescribed will stop the seizures relatively quickly but some people take longer to respond and may need another medicine.6
Epilepsy and society
The personal and societal burden are immense but the brain is the least researched and understood element of human biology meaning that progress is hard-won and not as fast-paced as other fields of medicine. It has been a long journey from the Greek philosopher Hippocrates (460-377BC) advancing the theory that epilepsy was linked to the brain to modern technology that employs neuro imaging to open a window into neural function.
Epilepsy is the third most common neurological condition in Europe after Alzheimer’s and Stroke, and it remains a condition that forces uncertainty and disruption into people’s lives, while it is also significant burden on healthcare systems and national economies.
- Hebbar M, Mefford HC. Recent advances in epilepsy genomics and genetic testing. F1000Res. 2020; 9: F1000 Faculty Rev-185. Published 2020 Mar 12. doi:10.12688/f1000research.21366.1
- World Health Organization. Epilepsy. Accessed January 2021.
- Epilepsy Alliance Europe. Background. Accessed January 2021. https://www.epilepsyallianceeurope.org/about/background/
- Epilepsy Society. Epilepsy facts and myths. Accessed January 2021.
- Kobau R, Gilliam F, Thurman DJ. Prevalence of self-reported epilepsy or seizure disorder and its associations with self-reported depression and anxiety: results from the 2004 HealthStyles Survey. Epilepsia. 2006; 47(11): 1915-1921. doi:10.1111/j.1528-1167.2006.00612.x
- Goldenberg MM. Overview of drugs used for epilepsy and seizures: etiology, diagnosis, and treatment. P T. 2010;35(7):392-415.