Treating Epilepsy

Epilepsy is a common neurological issue that affects millions of people worldwide. It causes bursts of electricity in the brain which can cause seizures.

Epilepsy is usually a lifelong condition, although it can often be controlled using medical interventions and other strategies. 

In this article, we will explore the role of medication and therapy in treating epilepsy, how symptoms can be improved and how quality of life for epileptics can be increased through various medical and therapeutic interventions.

Understanding Epilepsy and its Challenges 

Epilepsy is one of the most common neurological conditions that affects people across the world. According to World Health Organization (WHO) estimates, around 50 million people are affected by epilepsy worldwide. Epilepsy can affect people of all ages, with around 80 new cases diagnosed each day in the UK.

The most common symptom of epilepsy is seizures, which affect people in different ways depending on which part of the brain is involved. Some seizures can cause the body to jerk (sometimes called a ‘fit’) while others cause absences where people seem to zone out or lose awareness of their surroundings. 

Types of epileptic seizures

• Simple partial (focal) seizures or ‘auras’ – these seizures are sometimes a warning that another type of seizure is going to happen. They can cause strange and uncanny feelings, tingling sensations and a sense of déjà vu. 
• Complex partial (focal) seizures – these types of seizures cause a lack of awareness and cause people to make random bodily movements (such as lip smacking, chewing, swallowing or rubbing the hands together).
• Tonic-clonic seizures – formerly referred to as the grand mal, tonic-clonic seizures are what we typically think of as an epileptic fit. During the tonic stage a person loses consciousness and their body goes stiff. They may fall to the floor. During the clonic stage people’s limbs jerk around, and they may lose control of bodily functions.
• Absences – absences used to be called a petit mal. They are characterised by a person appearing absent and gazing into space. They may flutter their eyes or make slight jerking movements. They only last around 15 seconds and can occur multiple times each day.
• Myoclonic seizures – these seizures usually occur soon after waking. They are very brief and cause the whole body to jerk as if they have had an electric shock. 
• Clonic seizures – these seizures appear similar to tonic-clonic seizures except the body does not go stiff at the start.
• Tonic seizures – these cause the body to go stiff, often causing falls.
• Atonic seizures – during an atonic seizure the body becomes soft and people often fall over. Usually, they will be able to get straight back up.
• Status epilepticus – this is a medical emergency. Status epilepticus refers to any seizure that lasts a long time or when the person is not regaining consciousness between a series of seizures. If someone is having a seizure for more than five minutes it is important to call 999 for emergency assistance. 

Often, seizures happen randomly; however, some people may find their seizures are brought on by certain triggers. In these cases, learning to identify and avoid these triggers can help to manage seizure frequency. 

If you have a seizure, you may be referred for an EEG or brain scan (such as an MRI) to look for problems and anomalies. 

Common triggers include:

• Stress
• Lack of sleep
• Waking up 
• Alcohol or illegal drug use 
• Certain medicine 
• Menstruation 
• Flashing lights 

There are a number of different treatment options available for epilepsy. 

Treatments for epilepsy include: 

• Medication 
• Surgery to remove a small section of the brain that is causing the seizures 
• A procedure to place a small device inside the body that helps to control seizures
• A special diet (ketogenic diet) that can help to control seizures 

There are also several different therapy options available that can help to manage other issues that may occur due to having epilepsy which can improve wellbeing; therapy may also be used for people who do not respond well to traditional treatments. 

Types of Epilepsy medications

Anti-epileptic drugs (AEDs) are the most commonly used type of medication used to treat epilepsy. They help to control seizures in around 70% of people with epilepsy. 

AEDs work by changing the levels of chemicals in the brain that control electrical impulses. Although AEDs will not cure epilepsy, they can stop seizures from happening, or make them less frequent and less severe.

The type of medication you are prescribed will depend on your age and the type of seizures you have. As some AEDs are not safe to take during pregnancy as they can harm an unborn baby, if you take epilepsy medication and are planning on starting a family this is something to keep in mind.  

AEDs need to be taken at regular intervals (usually daily) and are available in a number of different forms, for example tablets, capsules, liquids and syrups. 

There are several different types of AED medication. Common types include:

• Sodium valproate
• Carbamazepine
• Lamotrigine
• Levetiracetam
• Topiramate

Sodium valproate

Format: This medicine is only available on prescription and comes in capsule, tablet and liquid forms. It can sometimes be prescribed as granules that may be mixed with food or administered by injection at the hospital. 

Precautions: If you are taking sodium valproate and are a female of childbearing age, your GP will enrol you on the Prevent programme, which requires you to take reliable contraception. This drug can cause serious problems in unborn children and is not recommended if you may become pregnant. Males who are taking sodium valproate should also take precautions not to get anyone pregnant. 

Dosage: Adults and older children (aged 12 years and over) – 600mg to 2,000mg a day, as one dose or split into two doses. Some people take a higher dose of 2,500mg a day. Dosage for younger children will depend on their weight.

Side effects: Common side effects include stomach pain, nausea, headaches, weight gain, thinning hair and changes in menstrual cycle. Rare side effects include suicidal thoughts, pancreatitis and liver problems.

Carbamazepine

Format: Carbamazepine is a prescription-only medicine used to treat epilepsy. It comes as standard and slow-release tablets, a drinkable liquid and suppositories. 

Precautions: Avoid drinking grapefruit juice while taking carbamazepine as it can interfere with the levels of the drug in the body. This medicine is not recommended during pregnancy. 

Dosage: The usual daily dose for adults is 800mg to 1200mg. You may start on a low dose one to four times per day which will be increased over several weeks.

Side effects: Common side effects include feeling dizzy, sleepy or tired, nausea, headaches, dry mouth and weight gain. It is not uncommon to get a skin rash when taking carbamazepine. Rashes are usually not serious; however, some people develop a condition called Steven-Johnson syndrome which is characterised by a rash and flu-like symptoms. 

Lamotrigine

Format: Lamotrigine is a prescription medication used to treat epilepsy. It comes as a tablet that can be swallowed, chewed or dissolved in water to make a drink.

Precautions: It can take up to 6 weeks for lamotrigine to work. During this time, seizures may persist. 

Dosage: Adults and older children (aged 12 years and over) – 100mg to 700mg a day, taken as one or two doses. Younger children’s dosage will depend on their weight.

Side effects: Common side effects include headaches, sleeping problems, dizziness, irritability, diarrhoea, nausea and a mild rash. Lamotrigine also carries a risk of developing Steven-Johnson syndrome, although this is rare.

Levetiracetam

Format: Levetiracetam is available on prescription. It can be taken as a tablet, a liquid or granules.

Precautions: If you are pregnant or planning to get pregnant while taking levetiracetam it is recommended that you take a high dose of folic acid (5mg per day). 

Dosage: Adults and older children (aged 12 years and over) – 250mg to 3,000mg a day, taken as one or two doses (the exact dose may depend on your weight).

Side effects: Common side effects (affecting more than one in ten patients) include a blocked nose or itchy throat, feeling dizzy/tired, headaches, nausea and irritability. 

Serious side effects with levetiracetam are rare; however, if your seizures are getting worse despite taking the medicine as prescribed, you experience mental confusion or have signs of kidney problems, you should get medical advice immediately. 

Topiramate

Format: Topiramate is an anti-epilepsy medicine. It is only available on prescription and comes as a tablet, capsule and liquid.

Precautions: This medicine is not recommended during pregnancy as it increases the risks of birth defects and learning/behavioural difficulties in children. Women of childbearing age who take topiramate should be enrolled in the Prevent programme and take steps to avoid becoming pregnant.

Dosage: You will usually start topiramate on a low dose of 25mg to 50mg a day.

This will be increased over several weeks to the usual doses for:

• Epilepsy – 100mg to 200mg a day (taken as two doses)
• Epilepsy (if you take another epilepsy medicine with topiramate) – 200mg to 400mg a day, taken as two doses

Side effects: Common side effects (that happen in more than 1 in 100 people) are usually mild and will go away on their own. They include nausea, sleepiness, dizziness, feeling depressed, appetite suppression and diarrhoea.  

Children taking topiramate may stop sweating which can cause their core temperature to rise, making them overheat. If you or your child experience serious side effects, including anaphylaxis, after taking topiramate you should seek medical attention immediately. 

It may take some time for your body to get used to taking AEDs and for them to have the desired effect. During this time, you may get mild, unpleasant side effects and continue to have seizures. 

Medication non-adherence is risky with epilepsy. Not taking the correct dosage or stopping taking medicine suddenly, without medical advice, can lead to dangerous consequences including seizures getting worse. Epilepsy medicine should always be taken as prescribed. If you struggle with medication adherence, consider using assistive technology such as:

• Setting alarms and reminders on your phone
• Using an automatic pill dispenser 
• Using a mobile app to track medication use, set reminders and contact healthcare providers
• Using a wearable device to monitor your health and wellbeing

If you experience mild side effects after taking epilepsy medicine, it is recommended that you continue to take it as prescribed but contact your GP or call 111 for advice.

If your side effects are serious, for example a severe rash with flushing, blisters or ulcers, difficulty breathing or having suicidal thoughts, call 999 or go to A&E as soon as possible. 

You can report side effects using the Yellow Card safety scheme. 

Using therapy to treat Epilepsy

Some of the different types of therapy that may complement the use of medication in epilepsy management include:

• Cognitive behavioural therapy
• Occupational therapy
• Physical therapy
• Ketogenic diet 
• Vagus nerve stimulation (VNS)

Cognitive behavioural therapy (CBT) – having epilepsy can have an impact on people’s levels of confidence and can lead to them experiencing low self-esteem and high levels of anxiety and stress. CBT helps us to break down our thoughts and understand how they impact our feelings and behaviours.

When patients engage with cognitive behavioural therapy, they can learn long-term coping mechanisms to deal with negative self-talk, destructive behaviour and anxious feelings. 

CBT is an effective tool in dealing with symptoms of depression. Some research suggests that one in three people with epilepsy has depression, compared to one in six in the general population. Although attending CBT sessions is not going to stop seizures, it is a useful tool to gain resilience, improve self-esteem and increase mental toughness which can help you to tackle depressive symptoms head-on. 

Occupational therapy – an occupational therapist can offer helpful tips and advice regarding adaptations and lifestyle adjustments that can help people with epilepsy to stay safe and maintain their full independence. 

This may include practical tips such as:

• Adaptations to the home (such as covering corners, using the shower rather than a bath)
• How to manage medication 
• Protective equipment for playing sport 
• Avoiding triggers 

Occupational therapists can also discuss coping skills that can help people to deal with the emotional and psychological stress of having seizures or needing daily medication. 

Physical therapy – physical therapy can help to improve mobility, coordination, balance and strength which can be affected by seizures or the side effects from taking regular medication. Regular physical activity and exercise can help people with epilepsy to increase their fitness levels, boost their mood and improve their overall health and wellbeing.

For some people, overexertion can trigger seizures, therefore it is important to take precautions when exercising:

• Avoid lone exercise (especially in water) 
• Ensure those around you know about your condition 
• Avoid over-exerting yourself, getting dehydrated or overheating 
• Consider exercises such as walking, jogging, yoga, stretching or Pilates 

Ketogenic diet – a ketogenic diet is a high fat, low carb, low protein diet. Before the development of AEDs, a ketogenic diet was prescribed as a key treatment for epilepsy. It is thought to help with seizures as it changes the levels of chemicals in the brain. 

The ketogenic diet is sometimes recommended for children to try to help control their seizures, especially if they have reacted poorly to AEDs. Due to the high fat content of the ketogenic diet, adults should proceed with caution as too much fat and a lack of balance can result in health complications such as heart disease or high cholesterol.  

Vagus nerve stimulation (VNS) – this requires a small medical device (similar to a pacemaker) to be placed beneath the skin in a patient’s chest. The device is attached to a wire that runs beneath the skin and connects to the vagus nerve (located in the neck). The device sends small bursts of electricity to the nerve which may help to control seizures by changing the electrical signals in the brain. 

It may be necessary to continue to take AEDs as VNS is not always enough to completely stop seizures from occurring. 

Deep brain stimulation (DBS) – DBS works in a similar way to VNS; however, the device connects to electrodes in the brain rather than the vagus nerve. The electrodes deliver electrical stimulation to the brain which can change the brain’s electrical signals which may help prevent seizures.

DBS is not a well-established procedure and does come with some risks, including brain bleeds, depression and memory issues. 

Stress reduction – Stress is a common seizure trigger. Relaxation techniques such as meditation, yoga, tai chi and deep breathing may help if stress is a trigger for your epilepsy. 

Some people with epilepsy say that using complementary therapies can help them to relax and improve their wellbeing. There is no scientific evidence that complementary or alternative therapies reduce seizures; however, they can help to reduce stress, which is a frequent trigger for seizures, as well as help people to feel more in control. 

Complementary therapies include:

• Acupuncture
• Aromatherapy 
• Biofeedback
• Massage
• Music/art therapy
• Reflexology 

You can find more information about epilepsy and complementary therapies on the Epilepsy Action website here.

The Integration of Medication and Therapy 

Integrated care for people with epilepsy is a person-centred approach that combines medication and therapy for comprehensive epilepsy management. It requires the coordination of multidisciplinary teams to work together to create and implement a personalised treatment plan. 

An integrated approach to epilepsy care may require the collaboration of multiple services, including:

• Neurologists
• Psychologists
• GPs
• Epilepsy specialist nurses 
• Occupational therapists 
• Dieticians 

Integrating medication and therapy can improve outcomes for people with epilepsy, leading to increased control of their seizures and improving their overall quality of life. Having access to multiple services can reduce the number of emergency hospital admissions a person requires, improve knowledge, enhance levels of self-care and improve the overall wellbeing of epilepsy sufferers. 

We know that epilepsy is a risk factor for depression. Starting in 2023, NHS England began a pilot scheme which involved integrating mental health care within epilepsy services aimed at children and young people. The results of this pilot will form an evidence base for improving standards of mental health care for young people living with epilepsy, providing a more holistic approach that acknowledges and treats both the mental and physical aspects of epilepsy. 

Case Studies and Success Stories 

Each year, Epilepsy Awareness Day is hosted by Disneyland Resort, created by the family of a girl named Sophie who was diagnosed with epilepsy as a child. After many failed attempts to control her seizures, some misdiagnoses and a close call that required emergency services to attend, the family were told that Sophie was a candidate for surgery. 

At the Paediatric Epilepsy Surgery program at UCLA Mattel Children’s Hospital in 2009, Sophie had a left temporal medial lobectomy which removed the lesion that was causing her seizures, allowing her to go on to live a full life free from seizures.

Not all people with epilepsy are suitable for this type of surgery and it only works in certain cases. Recognising that so many people were living with the nasty side effects of AEDs, getting misdiagnosed or having their lives ruled by seizures, Sophie’s family created Sophie’s Journey in an effort to address the unmet needs of people with epilepsy and their families. 

They began planning the Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland, which was so well received it is now in its 12^th year! The expo is the biggest gathering of epilepsy physicians and patients on earth – set against the backdrop of Disneyland, a poignant choice given the tragic passing of Disney Channel star Cameron Boyce who died due to sudden unexpected death in epilepsy (SUDEP) in 2019 at the age of 20. 

The aim of bringing together so many people at the event is to improve education and understanding of epilepsy and to connect more people to the treatments that will potentially change their lives. 

The 12^th annual expo is happening this month on the 18^th and 19^th November 2024, details can be found here. 

Conclusion 

Epilepsy is a neurological condition that can significantly impact a person’s life. Both medication and therapy have a role to play in controlling the seizures that are symptomatic of having epilepsy. Medication adherence and a collaborative approach between patients and healthcare providers play a crucial role in improving outcomes and optimising treatment options.