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According to Epilepsy Action an estimated 633,000 people are living with epilepsy in the UK. Recent studies indicate that the prevalence of epilepsy in the UK has slightly decreased over the past decade. A study analysing data from 2013 to 2018 estimated that approximately 9.37 per 1,000 people in the UK have epilepsy, equating to about one in every 107 individuals. This reflects a slight decline from 2011, when the prevalence was approximately 1 in 103 people.
Additionally, the research found that epilepsy prevalence is higher in more deprived areas across the UK. People in the most deprived regions are more than a third more likely to have epilepsy compared to those in the least deprived areas. While the overall prevalence of epilepsy in the UK has seen a slight decrease, certain regions and socio-economic groups have experienced increases, highlighting the need for targeted public health interventions.
While seizures are a defining feature of epilepsy, their frequency can vary greatly among individuals. Effective management and treatment can significantly reduce the occurrence of seizures for many people with epilepsy. The frequency of seizures in people with epilepsy can vary widely. Some individuals may experience seizures very rarely, perhaps once a year or even less frequently, while others may have multiple seizures per day. The frequency can depend on the type of epilepsy, the effectiveness of treatment, and individual factors.
What is an epileptic seizure?
An epileptic seizure is a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in behaviour, movements, feelings, and levels of consciousness. Seizures can vary widely in severity, duration, and manifestation depending on which part of the brain is affected and how much of the brain is involved.
Seizures are broadly categorised into two main types, focal (partial) seizures and generalised seizures.
Focal seizures originate in one area of the brain. They can be further divided into:
- Focal Aware Seizures (Simple Partial Seizures) – the person remains conscious and aware during the seizure.
- Focal Impaired Awareness Seizures (Complex Partial Seizures) – the person experiences altered consciousness or awareness.
Generalised seizures, involve both hemispheres of the brain from the onset. Types include:
- Absence seizures (Petit Mal) – brief lapses in consciousness, often seen in children.
- Tonic-Clonic Seizures (Grand Mal) – characterised by muscle stiffening (tonic phase) followed by jerking movements (clonic phase).
- Atonic seizures (Drop Attacks) – sudden loss of muscle tone, causing the person to fall.
- Myoclonic seizures – sudden, brief jerks of a muscle or group of muscles.
Causes of an epileptic seizure
The causes of epileptic seizures can be diverse and are often categorised as either genetic, structural, metabolic, immune, infectious, or unknown.
- Genetic factors – some forms of epilepsy are inherited. Mutations in specific genes can predispose individuals to seizures.
- Structural causes – brain abnormalities such as tumours, strokes, traumatic brain injury, congenital malformations, or scarring from previous injuries can lead to seizures.
- Metabolic disorders – imbalances in electrolytes, glucose, or other metabolic processes can trigger seizures. Conditions like hypoglycaemia, hyponatremia, or uraemia are examples.
- Infections – central nervous system infections such as meningitis, encephalitis, or brain abscesses can cause seizures.
- Immune disorders – autoimmune conditions that affect the brain, such as lupus or anti-NMDA receptor encephalitis, can lead to seizures.
- Unknown causes – in many cases, the exact cause of epilepsy remains unidentified, a condition referred to as idiopathic epilepsy.
Epileptic seizure symptoms
Epileptic seizures can manifest in various ways, depending on the type of seizure and the area of the brain affected. Symptoms can range from mild to severe. Generalised seizures, affecting both sides of the brain and Tonic-Clonic Seizures, formerly called Grand Mal Seizures share symptoms which include:
- Loss of consciousness.
- Stiffening of the body (tonic phase).
- Jerking or rhythmic movements (clonic phase).
- Biting the tongue or cheek.
- Loss of bladder or bowel control.
- Confusion or fatigue after the seizure (postictal state).
- Absence Seizures (formerly called petit mal seizures):
- Brief loss of awareness or staring spells.
- May involve subtle body movements like eye blinking or lip smacking.
- No memory of the episode afterwards.
These symptoms typically last a few seconds.
Focal Seizures, originating in one area of the brain and Focal Aware Seizures which are simple partial seizures involve symptoms that include:
- No loss of consciousness.
- Altered emotions or sensations, for example, déjà vu, fear, or joy.
- Unusual movements, such as twitching or stiffening in one part of the body.
- Sensory changes, for example, tingling, visual disturbances, strange smells or tastes.
- Focal Impaired Awareness Seizures (complex partial seizures):
- Altered consciousness or confusion.
- Repetitive, involuntary movements, for example hand rubbing, chewing, or walking in circles.
- No memory of the episode afterwards.
Other symptoms include:
- Sudden falls or loss of muscle control (atonic seizures).
- Brief, sudden muscle jerks (myoclonic seizures).
- Staring into space with no response to stimuli.
- Rapid blinking or eye movements.
- Temporary confusion or difficulty speaking after the seizure.
Treatment of epileptic seizure
The treatment for epileptic seizures aims to control or reduce the frequency and severity of seizures, improve quality of life, and minimise side effects. The approach depends on the type of seizures, their cause, the patient’s age, overall health, and other factors.
Medications (Antiepileptic Drugs or AEDs) are the first line of treatment for most people with epilepsy. Common AEDs include:
- Sodium Valproate – used for generalised and focal seizures.
- Levetiracetam – broad-spectrum AED for various seizure types.
- Carbamazepine – this is effective for focal seizures.
- Lamotrigine – used for both generalised and focal seizures.
- Phenytoin – often used for tonic-clonic and focal seizures.
- Topiramate – used for multiple seizure types.
- Others include Gabapentin, Oxcarbazepine, Ethosuximide (for absence seizures), etc.
AEDs stabilize electrical activity in the brain by targeting ion channels, neurotransmitters, or other mechanisms. Side effects can include dizziness, fatigue, weight changes, mood changes, or more serious effects like liver damage or skin rashes. Regular blood tests may be needed to check drug levels and monitor for side effects.
Surgery may be considered if seizures are not controlled with medications (drug-resistant epilepsy) and the seizure focus is identifiable and removable.
Types of surgery include:
- Resective surgery – removal of the part of the brain where seizures originate, for example, temporal lobectomy.
- Laser Ablation – this is a minimally invasive procedure using laser heat to destroy seizure-causing tissue.
- Corpus Callosotomy – this involves cutting the corpus callosum to prevent seizures from spreading between brain hemispheres. This is used for severe cases.
- Hemispherectomy – this is the removal or disconnection of one hemisphere of the brain. This is used in severe cases, often in children.
Surgery carries risks like infection, bleeding, or neurological deficits.
Neurostimulation devices are used for drug-resistant epilepsy and work by modulating brain activity. There are various types, including:
- Vagus Nerve Stimulation (VNS) – a device implanted in the chest sends electrical impulses to the vagus nerve, which connects to the brain. It works by reducing seizure frequency and severity over time.
- Responsive Neurostimulation (RNS) – this is a device implanted in the skull that detects abnormal brain activity and delivers electrical stimulation to stop seizures.
- Deep Brain Stimulation (DBS) – electrodes are implanted in specific brain areas to regulate abnormal electrical activity.
Some dietary therapies include:
- Ketogenic diet – this is a high-fat, low-carbohydrate diet that induces ketosis, which can reduce seizures, especially in children.
- Modified Atkins Diet (MAD) – this is a less restrictive alternative to the ketogenic diet.
- Low Glycaemic Index Treatment (LGIT) – this focuses on foods with a low glycaemic index to stabilise blood sugar levels.
Lifestyle and self-management options can also be very helpful. Some things that may help include:
- Maintaining a consistent sleep schedule.
- Stress management.
- Techniques like yoga, meditation, or counselling.
- Avoiding activities like swimming or driving until seizures are controlled.
A medical emergency where seizures last more than 5 minutes or occur in rapid succession requires immediate hospitalisation and treatment with intravenous medications like Lorazepam or Phenytoin.
Regular visits to a neurologist or epileptologist to monitor treatment effectiveness, adjust medications, and address side effects is important.
Experimental and emerging treatments include:
- Gene therapy – research is ongoing to target genetic causes of epilepsy.
- Stem cell therapy – investigational approach to repair or replace damaged brain cells.
- New medications – ongoing development of AEDs with fewer side effects and broader efficacy.
Treatment is highly individualised and adherence to the prescribed treatment plan is crucial.
Long term issues
The long-term effects of having epileptic seizures can vary widely depending on the type, frequency, and severity of the seizures, as well as how well the condition is managed. Some potential long-term issues for people with epilepsy include:
- Cognitive and memory problems – frequent seizures, especially if they are severe or prolonged, can lead to cognitive decline and memory issues over time. This can affect learning, attention, and executive functioning.
- Psychological and emotional impact – living with epilepsy can lead to psychological issues such as depression, anxiety, and social isolation. The unpredictability of seizures can cause significant stress and impact quality of life.
- Physical injuries – seizures can result in physical injuries such as fractures, bruises, and head injuries. Repeated injuries can have cumulative long-term effects.
- Medication side effects – many anti-epileptic drugs (AEDs) have side effects that can impact long-term health, including bone density loss, liver damage, and cognitive effects. Managing these side effects is an ongoing challenge.
- Social and occupational challenges – epilepsy can affect a person’s ability to drive, work, and engage in social activities. This can lead to difficulties in maintaining employment and relationships, contributing to long-term socioeconomic challenges.
- Status epilepticus – this is a medical emergency where seizures last longer than five minutes or occur close together without recovery in between. It can cause brain damage and has a high mortality rate if not treated promptly.
- Sudden Unexpected Death in Epilepsy (SUDEP) – although rare, SUDEP is a significant concern for people with epilepsy, particularly those with uncontrolled seizures. The exact cause is unknown, but it is believed to be related to respiratory or cardiac issues during or after a seizure.
- Developmental and behavioural issues in children – children with epilepsy may experience developmental delays, learning disabilities, and behavioural problems. Early intervention and appropriate educational support are crucial.
- Chronic health conditions – people with epilepsy may be at higher risk for other chronic health conditions, such as cardiovascular disease, due to a combination of factors including medication side effects, lifestyle, and the stress of managing a chronic illness.
- Quality of life – overall, the impact of epilepsy on quality of life can be significant. This includes limitations on daily activities, reduced independence, and the constant need for medical management.
Supporting someone who is living with epilepsy
Supporting someone living with epilepsy involves a combination of emotional, practical, and educational support. Here are some ways you can help:
- Be understanding – show empathy and understanding. Living with epilepsy can be challenging, and having a supportive network can make a significant difference.
- Listen – be a good listener. Allow them to express their feelings and concerns without judgment.
- Encourage – offer encouragement and positive reinforcement, especially if they are managing their condition well or making progress in their treatment.
- Learn about epilepsy and epileptic seizures – educate yourself about epilepsy, including the types of seizures, triggers, and first aid. This knowledge can help you provide better support.
- Assist with medication – help them remember to take their medication on time, if needed. Consistent medication is crucial for managing epilepsy.
- Accompany to appointments – offer to accompany them to medical appointments for moral support and to help them remember any important information discussed.
- Create a safe environment – help make their living environment safer by removing potential hazards that could cause injury during a seizure.
During a seizure:
- Stay calm – keep calm and reassure others around you.
- Protect them – gently guide them to the floor if they are not already there, and place something soft under their head.
- Clear the area – remove any nearby objects that could cause injury.
- Do not restrain – do not try to hold them down or stop their movements.
- Time the seizure – note the duration of the seizure. If it lasts more than 5 minutes, or if they have multiple seizures without regaining consciousness, seek emergency medical help.
- After the seizure – once the seizure ends, turn them onto their side to help keep their airway clear. Stay with them until they are fully alert and oriented.
Long-term support:
- Encourage independence – support their independence and encourage them to engage in activities they enjoy, while being mindful of safety.
- Help with lifestyle adjustments – assist them in making lifestyle changes that can help manage their condition, such as maintaining a regular sleep schedule, managing stress, and avoiding known triggers.
- Advocate – be an advocate for them in social, educational, or workplace settings to ensure they receive the accommodations and understanding they need.
- Share information – help educate others about epilepsy to reduce stigma and misconceptions.
- Support groups – encourage them to join support groups where they can connect with others who have similar experiences. Epilepsy Society provide information about support groups in your area.
- Emergency plan – help them develop an emergency plan, including important contacts and medical information.
- Wearable ID – encourage them to wear a medical ID bracelet or necklace that indicates they have epilepsy.
By providing a supportive and understanding environment, you can help someone with epilepsy manage their condition more effectively and improve their quality of life.
The NHS offer a helpful guide about living with epilepsy with information about where to access support.