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Sleep and Epilepsy

Sleep and epilepsy
Having a good night’s sleep helps our brains to recover from the day’s events, so that we can function well the next day. For some people with epilepsy a lack of sleep can make seizures more likely to happen, for others having seizures at night can make them feel tired during the day.

Are there links between epilepsy and sleep?
The links between epilepsy and sleep are very complex. During sleep the brain is active, processing information to help us learn. Brain activity changes during the different stages of sleep.

Different stages of sleep
Sleep happens in an alternating pattern, and is divided into two different, alternating categories of sleep type.

non-rapid eye movement (NREM), light and deep sleep split into stages
rapid eye movement (REM) sleep
Non-rapid eye movement sleep
Light sleep
Stage one – during this first stage of NREM sleep, our muscles start to relax, we are half awake and half asleep and can easily be woken up.
Stage two – during this second stage, our heart rate and breathing slow down and seizures can be more likely to happen for some people with epilepsy as we go from this stage to stage three, deep sleep.
Deep sleep
Stage three is deep sleep (sometimes called slow-wave sleep). Our breathing and heart rate slows and our brain begins to produce ‘delta waves’, a type of brainwave associated with deep sleep. Delta waves increase as sleep gets deeper and it is difficult to be woken. If we are woken during this stage we will often be confused. Sleep walking and night terrors are more likely to happen during deep sleep than during light sleep.
Scientists believe that NREM sleep is important for strengthening connections between our brain cells and stabilising long-term memories. Deep sleep also helps the brain to recover from the day’s events so that it can function well the next day.

Rapid eye movement sleep
The next stage of deep sleep is when most dreaming occurs. During REM sleep the brain tries to organise the information we have received throughout the day.

The purpose of REM sleep and dreaming is unclear. However some theories suggest it may be important for making sense of our thoughts, ideas and experiences, and the emotions and memories attached to them.

A lack of sleep can affect our memories and judgement. It can also affect our mood and how well our immune system works.

Are there links between seizures and sleep?
Some people have specific triggers for their seizures, for example a lack of sleep. In some types of epilepsy seizures can happen as someone is waking up and within the next few hours. People with epilepsy may have an irregular sleep pattern, as seizures at any time of the night can disrupt sleep and seizures during the day can affect the next night’s sleep. For some people the effects of having a seizure can upset their sleep pattern for several days afterwards.

Do anti-epileptic drugs affect sleep?
As with all medications, anti-epileptic drugs (AEDs) can cause side effects for some people. AEDs may have different effects on sleep, and this can vary from person to person, depending on the dose. Some AEDs are classed as sedatives and can cause tiredness. Some can cause insomnia or disrupted sleep. However some AEDs can help to improve the quality of sleep by increasing the length of deep sleep.

Seizures that start during sleep
Some people with epilepsy have ‘asleep seizures’ (sometimes called ‘nocturnal seizures’), that happen when they are asleep, as they are falling asleep or as they are waking up. Frontal lobe epilepsy is a type of epilepsy where seizures can commonly happen during periods of NREM sleep as well as when awake. Frontal lobe seizures often happen in ‘clusters’ (many happening close together in time), but are usually brief. They can include sudden jerking movements, strange postures or movements of the arms or legs, loud cries or screams and wandering about during sleep.

Sleep disorders
Some sleep disorders are called ‘parasomnias’: unusual events that are linked to sleep. These can include confused behaviour during sleep, sleepwalking or night terrors (where a person suddenly wakes from sleep in a state of panic or fright). This may happen when some parts of the brain are awake and others are asleep. Some parasomnias include making unusual movements or sounds. Sometimes it can be difficult to tell whether someone is having seizures or if what happens to them is part of a parasomnia. It can be helpful to keep a record or video recording of what happens during the event to help with diagnosis. Seizures often follow a similar pattern each time they happen and it may be clear to see when a seizure starts and when it stops. However, parasomnias do not necessarily follow a pattern and often have no clear end. Some symptoms of narcolepsy (a rare condition causing uncontrollable urges to fall asleep, at any time of the day) are sometimes mistaken for epilepsy.For example, some people with narcolepsy develop cataplexy, a loss of muscle tone often affecting the jaw, neck and limbs. Symptoms can also include slurred speech or blurred vision and some people may collapse. An episode of cataplexy may be triggered by emotions such as laughter, anger or surprise.

Epilepsy and sleep disorders
Some people with epilepsy also have sleep disorders that are not related to their epilepsy, and some medical conditions can be confused with epilepsy. Obstructive sleep apnoea (OSA), where a person snores and then stops breathing for short periods during sleep, can be more common in people with epilepsy. It is sometimes caused by low muscle tone around the airway. This may happen as a result of weight gain, which can be a side effect of some AEDs. As well as disrupting sleep, obstructive sleep apnoea can trigger seizures for some people. If you snore and are told that you stop breathing during sleep, your GP can arrange for you to have a simple, pain free test to monitor oxygen levels in your blood overnight, to help diagnose obstructive sleep apnoea. Visit sleep-apnoea-trust.org for more information and a list of NHS sleep clinics in the UK.

Tips for getting good sleep
There may be some simple things you can do to help you to get a good night’s sleep.

• If you usually have a hot drink before bedtime, try a milky drink rather than one that contains caffeine (research suggests that reducing caffeine up to six hours before bed can increase the quality of sleep).

• Try to avoid eating meals or drinking alcohol late at night.

• Try to wake up at the same time every day, and set a regular bedtime.

• Try to reduce distraction and avoid disturbance during the night by keeping mobile devices such as phones and tablets out of the bedroom.

• Try to relax before going to bed and avoid watching television or using a computer just before bedtime.

• Create a calm environment by keeping your room at a comfortable temperature and as dark as possible.

• Make sure your bed is comfortable, and that your pillow gives you enough support.

• If you have a nap during the day, try to restrict yourself to 15 minutes or less. This can help to maintain a regular sleep pattern during the night.

If you have problems with sleep your GP or consultant can refer you to a specialist sleep clinic.

Epilepsy Society is grateful to Dr Hugh Selsick, Royal London Hospital for Integrated Medicine, for his guidance on this information.

Information produced: June 2019
Source Epilepsy Society

Complementary Therapies

Complementary therapies
Complementary therapies such as homeopathy, herbal remedies, massage, aromatherapy, acupuncture and training therapies can help to promote wellbeing and underlying health, as well as reduce stress and may be used alongside any anti-seizure medication (ASM) you are taking.

It is important not to change or stop your medication without consulting the doctor who treats your epilepsy, because this could increase the number or frequency of your seizures, or cause unwanted side effects.

Some complementary therapies may help improve epilepsy indirectly because they make you feel better generally. If stress is a trigger for your seizures, a therapy that helps you to feel less stressed may help you to have fewer seizures. People respond differently, and some therapies may help reduce seizures for some people, and not others.

Some complementary therapies can increase the risk of seizures, so it is important to know as much as possible about your own epilepsy, and the therapies you are interested in. To help make sure treatments are suitable for you, always use a qualified therapist and tell them about your epilepsy, your seizures, any other conditions you have and any medication that you take.

Accessing therapies
Some therapists are covered by statutory regulation, such as chiropractors and osteopaths. Some therapies, such as homeopathy, are long-established and have their own professional councils that hold their members to published standards of training, practice and ethics.

Some therapies are less well-established in the UK and have little or no regulation. It is not always easy to work out the qualifications and experience of a complementary therapist as regulation is not as well developed as in other areas of healthcare. This makes it hard to distinguish between an experienced practitioner and someone who has had little training.

You can see whether the complementary therapy you are interested in has a professional body, and if so, you can check their standards and register of members. A personal recommendation of a highly regarded practitioner can be reassuring. But it is also a good idea to do your own research to help you make your choice.

You can search for a local regulated therapist through the Complementary and Natural Healthcare Council (CNHC) or Therapy Directory

Relaxation therapies
Massage and aromatherapy
Types of massage include:

Indian head massage (massage of the head shoulders and arms);
Holistic massage (massage of the whole body);
Swedish massage (massage from the neck down): and
Shiatsu (using acupressure which is pressure on acupuncture points).
Massage is often used to reduce tension and pain in muscles, help with poor sleep patterns, improve relaxation and reduce stress. All types of massage can be carried out with or without oil, and can involve the use of aromatherapy oils.

For more information visit the General Council for Soft Tissue Therapies (GCMT) or the Shiatsu Society

What are essential oils and how do they work?
Aromatherapy uses pure essential oils: oils that are extracted from plants. Some oils have a relaxing effect on the body and the brain, for example lavender. Some oils have a stimulating effect on the body and brain, for example bergamot. Essential oils are diluted in a ‘base’ oil (a plain oil such as a vegetable or nut oil) and used for massage, or they can be diluted and used in a burner to produce an aroma that is inhaled.

Many essential oils are freely available to buy, but this does not necessarily mean that they are all safe to use. Ask your doctor, pharmacist or qualified aromatherapist before you use essential oils bought over the counter or on the internet.

Are any essential oils not recommended for use in epilepsy?
It is thought that some essential oils may trigger seizures, and so are not recommended for use by people with epilepsy. Essential oils that are not recommended include:

Rosemary, fennel, sage, eucalyptus, hyssop, wormwood, camphor and spike lavender are not recommended as essential oils if you have epilepsy. For pregnant women there are also a number of other essential oils to avoid.

For more information visit the Federation of Holistic Therapists

Can any essential oils help my epilepsy?
There are a number of essential oils that are known to have a calming and relaxing effect. If someone’s seizures are triggered by stress, then using these oils to relax may help to reduce their seizures. Calming oils include: jasmine, ylang ylang, camomile, and lavender (not spike lavender which is not recommended).

Research was carried out at the University of Birmingham’s seizure clinic which involved using essential oils with individuals who had epilepsy. The studies used aromatherapy massage to allow individuals to associate the smell of an essential oil with a state of relaxation. Then, when the person was stressed or felt a seizure was about to start, they were encouraged to smell the essential oil they had previously associated with a calm state. This triggers the limbic system, a part of the brain involved in smell, which appeared to divert a seizure for some people. Results showed that, with practice, a person may be able to prevent a seizure by simply smelling the particular oil which could then lead to fewer seizures. This research indicated that jasmine oil was the most effective, although this may not be the case for everyone with epilepsy.

For more information about aromatherapy contact the Aromatherapy Council (AC)

Reflexology
Reflexology is based on the idea that certain points on the feet and hands (reflex points) relate to other parts of the body. The therapist uses pressure on these points to release tension and encourage the body’s natural healing processes. Reflexology can be helpful in reducing stress and making you feel relaxed, and can support wellbeing and underlying health.

For more information about reflexology visit the British Reflexology Association or nhs.uk

Relaxation techniques
Relaxing activities such as meditation, visualisation or slow, focused breathing can help reduce stress and so help to reduce seizures for some people.

Meditation can be a very good way of relaxing, releasing you from stress or anxiety and coping with fatigue and mental tiredness. Over time a meditation practice can help to clear the mind and to focus. It can also help with headaches and can promote wellbeing. The benefits of meditation may not be obvious at first, and a beginner can get disheartened. It can be best to start with a very simple meditation technique for just a few minutes a day, and gradually build up.

Both meditation and deep breathing can impact electrical activity in the brain and central nervous system, and can be powerful. An experienced instructor who fully understands these techniques can guide you.

If your seizures tend to happen when you are very relaxed, or during sleep, then deeply relaxing activities such as meditation and hypnotherapy may increase your risk of having seizures. For more information about meditation visit the British Meditation Society

Holistic therapies
Holistic therapies aim to treat the whole person, rather than an individual condition or specific symptoms.

Herbal medicine
Herbal medicine uses extracts from plants to restore the natural balance of the body and encourage healing. Herbs have been used for thousands of years across the world by many different cultures to treat different health problems, including epilepsy.

There is a lack of evidence for their benefit, but that does not mean that some herbal medicine may not benefit some people. Some plants have been known for centuries for their medicinal properties, but some are poisonous, and ‘natural’ medicines may have adverse side effects in the same way as man-made medications do.

Medicines containing herbs such as schizandra, kava kava and comfrey may increase the number of seizures for some people. Some remedies may contain unlisted ingredients, which could affect someone’s epilepsy or their existing treatment. Also some herbal remedies may affect the way ASMs work, which can reduce the effectiveness of an ASM or cause harmful side effects.

St Johns Wort
St Johns Wort is a herbal treatment used for depression and other conditions. The Medicines and Healthcare products Regulatory Agency (MHRA) recommends that people taking ASMs do not take St Johns Wort because it can affect the way ASMs work. Anyone already taking St Johns Wort and ASMs is advised to talk to their doctor about the risks and benefits. It is important to speak to your doctor before stopping St Johns Wort or making any changes to your current treatment, as this may affect the balance of the treatment that is working for you.

Evening Primrose Oil
Evening primrose oil is a herbal extract used for various conditions, including pre-menstrual symptoms. Past reports have warned that evening primrose oil may trigger seizures for people with epilepsy, but other researchers say there is no evidence for this risk.

The doctor who treats your epilepsy can advise you about the possible effects of a herbal medicine on your epilepsy and your current treatment.

Homeopathy
Homeopathy is a holistic therapy which treats a person’s individual situation. Homeopathic doctors investigate a person’s health, life, and feelings in great detail. They may prescribe small doses of individually prepared natural substances to encourage the body to heal naturally. Although there is no evidence that homeopathic treatments directly help epilepsy, such an individual approach may help people feel better generally, and more in control of their epilepsy.

For more information visit the Royal London Hospital for Integrated Medicine or the British Homeopathic Association.

Ayurvedic medicine
Ayurveda is an ancient Indian health care system that has become very popular in the West in recent years. It covers all aspects of health and uses a combination of herbal medicine, diet, massage, yoga and meditation to treat conditions. Ayurveda aims to deal with underlying health imbalances and promote wellbeing. As with any treatments of this kind, especially medicines and meditation, it is important to think about your epilepsy.

A key part of ayurvedic treatment includes purging (cleansing) of the digestive system by using a substance to cause vomiting or diarrhoea. This can affect the blood levels of epilepsy medications, which could trigger seizures in some people.

As with other medicines that have not gone through clinical trials, some may be safe and others harmful. Case studies have been reported of some ayurvedic medicines containing poisons such as arsenic, mercury or lead. Because of the great popularity of Ayurveda in the west, ayurvedic treatments are easy to buy online or over the counter. Find out about the ingredients of any Ayurvedic medications you are thinking of taking and ask your own doctor about these substances before you take them.

Traditional Chinese medicine
Traditional Chinese medicine is an ancient holistic system based on the idea of a life force (qi or chi) and of balance (yin and yang). Treatment for epilepsy may include three main approaches: herbal medicines, acupuncture and Tui Na (massage using acupressure, focusing on the unblocking of ‘qi’ points).

Chinese herbal medicines tend to be compounds of different substances, and you won’t necessarily know what is in them. Cases have been reported of Chinese herbal medicines for epilepsy containing anti-seizure medication such as phenobarbital. Apart from potential interactions with any other ASMs a person may be on, any ASM needs to be prescribed carefully to ensure the correct dose and type of drug for that person. Other ethical concerns include the use of animal products in some herbal medicines. Always consult your current doctor before taking herbal medicines, whether prescribed or ‘over the counter’.

Acupuncture
Acupuncture is one part of traditional Chinese medicine. It involves inserting very fine pins or needles into specific points on a person’s body to stimulate energy pathways and natural healing processes. The needles may be left inserted for a few seconds, but are more commonly left in place for 30-40 minutes. Although there has been no evidence that acupuncture can directly improve a person’s epilepsy, it has been found to be effective in reducing stress and anxiety, which may then result in fewer seizures for some people with epilepsy. It can also improve wellbeing and underlying health. Many GP surgeries are now making acupuncture available to patients through the NHS.

For more information about acupuncture contact the British Acupuncture Council (BAcC) or nhs.uk

Training and psychological therapies
Autogenic training
Autogenic training is a series of mental exercises which brings about relaxation similar to certain meditative states. The exercises aim to help the person become calm.

Some people who have this therapy report having better emotional balance, coping ability, wellbeing, quality of sleep, ability to relax, confidence and energy. They also report decreased anxiety, irritability and reactions to stress.

Autogenic therapists work in the NHS with several based at the Autogenic training clinic at the Royal London Hospital for Integrated Medicine

You can ask to be referred to the RLHIM by your GP or consultant.

You can also find more information from the British Autogenic Society

Neurofeedback (biofeedback)
Neurofeedback is a technique that may help you if your seizures start with a ‘warning’ or ‘aura’. The idea is that you can learn to control your brain activity, and level of relaxation, by watching a display on a computer screen. With practice and support from a trained therapist, some people may be able to limit the length of their focal (partial) seizures or prevent these spreading to become a generalised seizure. Neurofeedback training can be effective in some people, but it requires a lot of dedication, time and hard work from both the therapist and the person with epilepsy.

Neurofeedback is not currently available through the NHS. If you are looking for private treatment, it is important to find a practitioner with knowledge of epilepsy and neurofeedback research.

Psychological therapies
Psychological therapies may include relaxation techniques to release the tension in your body and relax your muscles. Behaviour modification therapy is another psychological approach.

Relaxation therapy combined with behaviour modification therapy is used for both children and adults. There is evidence that they may help some people feel less anxious and can also help them to adjust to having epilepsy.

These therapies may be offered by some psychologists with an interest in epilepsy. There is current research looking into how effective such treatments are for epilepsy.

Information produced: February
Source Epilepsy Society

Diet and Nutrition

Diet and nutrition
Eating a healthy, balanced diet is an important part of maintaining good health and can help you feel your best. This may reduce the risk of seizures for some people with epilepsy.

How does diet affect epilepsy?
Although there is little evidence that your diet has a direct effect on seizures, a balanced diet provides essential nutrients and keeps our energy levels steady, helping us to stay healthy. This may help reduce the risk of seizures for some people with epilepsy. A balanced diet may also help you to keep a regular sleep pattern and keep active, both of which are good for overall health. Getting enough sleep may help to reduce the risk of seizures for some people. A diet that suits you may help you to feel positive, more able to focus and more in control of your life and decisions about managing your epilepsy.

What is a balanced diet?
A balanced diet is generally made up of carbohydrates, fats, proteins, vegetables, and fruit, and drinking plenty of fluids. Research continues into what makes a healthy diet, but the NHS advise that, for the general population, people should try to:

Eat at least 5 portions of fruits and vegetables every day;
Base meals on potatoes, bread, rice, pasta, or other starchy carbohydrates;
Eat some beans, pulses, fish (including one portion of oily fish a week), eggs, meat and other protein foods;
Have some dairy or dairy alternatives (such as soya drinks or yoghurts);
Choose unsaturated oils and spreads, and eat in small amounts;
Eat foods high in fat, salt, and sugar less often and in small amounts; and
Drink plenty of fluids – the government recommends 6 to 8 glasses a day.
There is also NHS information for those who follow a vegetarian or vegan diet.

Knowing what we eat
Media reports and recommendations about what to eat can be confusing or contradictory. Also it can be hard to know what our food contains.

‘Traffic light’ labelling on supermarket food is one way to help you see what is in food. This uses red, amber and green labels for high to low levels of our recommended daily amount of calories, sugar, fats and salt. Seeing at a glance the foods with more green labels than red can help you make your own choices about following a balanced diet.

The NHS publishes The Eatwell Guide which shows how much of what we eat overall should come from each food group to achieve a healthy, balanced diet.

Preparing food
Making your own meals gives you more control over what you are eating. If you have seizures, some things may help make cooking safer. These include:

using a kettle tipper, and wire baskets inside saucepans, to avoid lifting containers of hot water;
using hob rings at the back of the hob, and turning pan handles to the side; and
using a microwave rather than an oven.
Vitamin and mineral supplements
Vitamins and minerals are nutrients your body needs in small amounts to work properly and stay healthy. For most people, a varied, healthy diet will provide most of the vitamins and minerals they need, and taking unnecessary supplements can be harmful.

However, government advice is that children over four years old and adults (including pregnant and breastfeeding women) should consider taking a daily vitamin D supplement during the autumn and winter.

Vitamin D helps regulate the amount of calcium and phosphate in the body and helps the immune system. These nutrients are needed to keep the bones, teeth, and muscles healthy.

Sunlight is the main source of vitamin D, and most people should be able to make all the Vitamin D they need from sunlight until about late March/early April. Vitamin D is also found in a small number of foods including egg yolks, red meat, liver, oily fish such as salmon, sardines, herring, and mackerel, and fortified foods such as some breakfast cereals and some fat spreads.

Some anti-seizure medications (ASMs) can reduce bone density, making bones weaker and more likely to break. To help prevent this, doctors may suggest a bone density scan, and prescribe vitamin D. You can ask your doctor for more information about osteoporosis.

Pregnant, planning a pregnancy, or breastfeeding?
Women who are pregnant or planning a pregnancy need to avoid taking too much vitamin A, (found in liver and fish oil supplements like cod liver oil), as large amounts of vitamin A can harm an unborn baby. Your midwife or GP can give you more information about this.

The Department of Health recommends that pregnant or breastfeeding women take a daily supplement of vitamin D.

All pregnant women or those planning to get pregnant, are advised to take a daily supplement of folic acid (a type of vitamin B). For women with epilepsy, a higher dose of 5mg daily is recommended, as soon as they start trying for a baby and for at least the first 12 weeks of pregnancy and for the whole pregnancy, if their doctor feels this is necessary.

This strength of folic acid is only available on prescription but it will be free of charge.

See NHS Choices information on vitamins and pregnancy.

Can any special diets help prevent seizures?
Dietary treatments can help some people with poorly controlled seizures by using specific levels of fat, carbohydrate and protein to affect how the brain works.

The ketogenic diet is a medical treatment carried out under the supervision of a dietitian and an epilepsy specialist. It is a diet that should not be started unsupervised. At present the ketogenic diet is mostly used with children whose epilepsy is not responding to ASMs. However, adults may also benefit from dietary treatments.

Can any foods trigger seizures?
There is currently no evidence that any type of food consistently triggers (sets off) seizures in people with epilepsy (except for rare types of ‘reflex epilepsy’ where seizures are triggered by eating very specific foods).

Although there are some common triggers for seizures, such as lack of sleep, stress and alcohol, everyone’s epilepsy is different. Some people feel that some colourings and preservatives, such as monosodium glutamate (MSG) or artificial sweeteners can trigger their seizures, but there is no high quality evidence that this is the case in humans. Many foods labelled ‘low-fat’ contain these artificial ingredients.

Grapefruit juice and pomegranate juice do not trigger seizures, but they can make the side effects of some epilepsy medications more likely, including carbamazepine, diazepam and midazolam. The patient information leaflet for your medication will say whether you need to avoid drinking these juices. Patient information about different medications is also available at emc Medicine Guides.

Caffeine, found in coffee, tea, cola and some energy drinks has a stimulating effect on the central nervous system (CNS). The relationship between caffeine, seizure control and anti-seizure medication is complex and not fully understood. However, some reports suggest that caffeine may increase the likelihood of seizures happening for some people. Caffeine may also affect how well ASMs work in controlling seizures.

In some cases it appears that caffeine can protect against seizures. You may want to speak to your specialist if you have any concerns about the effect caffeine may have on your seizure control. Read more about caffeine and seizures.

Information produced: February 2023
Source Epilepsy Society

School Education and Epilepsy

School, education and epilepsy
A guide for parents on managing seizures at school and special educational needs or disabilities (SEND).

Epilepsy is a very individual condition so how it affects a child’s education can vary. Knowing as much as possible about your child’s epilepsy can help you to make decisions with them about their education.

Seizures at school
Telling staff at school about your child’s epilepsy means they will know what to do if a seizure happens. It is important that the staff are aware of what is best for your child, so they don’t assume that epilepsy affects everyone in the same way.

For some children, having epilepsy will not affect their ability to learn or achieve academically but others may need extra time or support in class. For example, a child who has absence seizures may miss key points during lessons. Having a chance to catch up on what they have missed in class can be helpful if seizures happen frequently. Sometimes a child may need time to recover after a seizure, and may need to sleep. Seizures at night can disrupt sleep patterns and affect memory for some time afterwards. Anti-epileptic drugs (AEDs) can also cause side effects that include tiredness and problems with memory or concentration.

If you feel that your child needs support at school you can talk to their teachers. Sometimes a teacher may approach you if they notice areas where your child needs extra help.

Special educational needs or disabilities
A child has special educational needs (SEN) if they have learning difficulties or disabilities that make it harder for them to learn than other children of the same age. Every school has a special educational needs co-ordinator (SENCO) who can look at your child’s needs with you and with people who work with your child, such as their teacher. The school will usually provide SEN support.

If your child needs extra help, you, or your child’s school, can ask the local authority for an Education, Health and Care (EHC) needs assessment. The assessment incluydes talking to you and your child about what support you think your child needs. It will also include asking for information and views from people who work with your child, such as teachers, doctors or educational psychologists. This may produce an EHC plan, a document that brings together your child’s education, health and social care needs. Your child must have special educational needs to be eligible for a plan.

The Information Advice and Support Services Network (IASSN) is funded by the Department for Education (DfE) and gives information, advice and support to parents and carers of children and young people with special educational needs. They also provide information on how individual needs are identified by schools and the local authority.

More information on education and special needs from GOV.UK

Educational support and other organisations

Advisory Centre for Education – an independent advice centre for parents.
Contact a Family – support and information for families of children with disabilities or medical conditions.
Equality and Human Rights Commission – an independent body, which aims to eliminate discrimination against people with disabilities and promote equality. Has information on education and the Equality Act.
IPSEA (Independent Parental Special Education Advice) – free independent educational advice for parents of children in England and Wales.
Staying Positive Programme – free courses for young people with any long-term health condition.

Source Epilepsy Society

Epilepsy Society is grateful to Christine Bennett, Senior Children’s Epilepsy Nurse, for her guidance on this information.

Information updated: May 2021

Teaching Children

Information to help teachers who have a child with epilepsy in their class. Find out about adjustments you may need to make, how their epilepsy might affect their learning and what you may need to do if they have a seizure.

Because epilepsy varies so much from person to person, it can be helpful to find out as much as possible about a child’s epilepsy to avoid making assumptions about how their condition might affect their learning.

If parents feel supported by the school, they may be more likely to give information about their child’s epilepsy.

Equality Act 2010
The Equality Act aims to protect people against discrimination. Epilepsy is a condition that is covered by the Equality Act, even if a person’s seizures are controlled with medication.

This means it is against the law for education and training providers to discriminate against people with epilepsy. This includes nurseries and playgroups, primary and secondary schools, and further and higher education.

The Equality Act covers extra curricular activities. It also covers how the curriculum is delivered and so methods of teaching need to treat all pupils fairly and not put any pupils with epilepsy at a disadvantage. However, the Equality Act does not cover the content of the curriculum.

Computers and lights
For most people with epilepsy, using a computer will not trigger a seizure. Up to 5% of children and young people with epilepsy have photosensitive epilepsy, where seizures are triggered by flashing or flickering lights or by geometric patterns such as checks or stripes.

Computers and TVs with a flat screen do not flicker and so are less likely to trigger seizures than screens that flicker. However, fast-moving or flashing images on the screen could be a trigger. Other photosensitive triggers include flickering overhead lights and sunlight creating patterns through blinds.

Exams and tests
Whether a child’s epilepsy affects their ability to do exams or tests depends on their individual epilepsy. If they are likely to have seizures in stressful situations or at certain times of the day, this may affect their performance in exams or tests. Tiredness, or memory or concentration problems may also affect exams. Discussing concerns with the child and their parents may help to decide whether they need any special arrangements for exams.

Practical activities and lessons
Safety is important for all children, especially during practical activities and lessons, such as science or PE. Epilepsy does not need to stop a child from doing an activity, as long as they are safe. Those responsible for their care need to know how their epilepsy affects them, what to do if a seizure happens and when to call an ambulance. This also applies to extra curricular activities.

If a child has seizures, you can discuss any concerns about activities with them and their parents. Doing a risk assessment is also important. Useful questions to ask include the following.

What are the risks to safety for any child involved in this activity?
What happens to the child during their seizures?
Do they have a warning (know that a seizure is going to happen)?
What would help make the activity safer for them?
Swimming
It is essential that the swimming teacher and lifeguards fully understand a child’s epilepsy so they can quickly see if the child is having a seizure in the water.

Some schools use a ‘buddy system’ which pairs up pupils so that everyone has someone to look out for them in the water. This may help a child feel they are being treated the same as the other children, as well as increasing everyone’s safety in the water.

See more about water sports and epilepsy.

Medication at school
Most children with epilepsy take anti-epileptic drugs (AEDs) to prevent seizures. AEDs are usually taken once a day, or twice a day with a 12 hour interval, which usually means this happens outside school hours.

If a child needs to take AEDs at school, having their own health care plan means that their medication can be managed and given effectively. This plan needs to be arranged by the school and agreed with the school’s governing body and the child’s family.

Sample health care plans and other forms relating to giving medication at school can be downloaded for free as part of the Department for Education (DfE) guidance on ‘Supporting pupils at school with medical conditions’ (September 2014).

Status epilepticus or ‘status’
If a seizure continues for more than five minutes and this is not usual, (or one seizure follows another with no recovery in between), this is known as status epilepticus or ‘status’. Status during a tonic clonic (convulsive) seizure is a medical emergency and needs urgent treatment.

Children who have gone into status before may be prescribed emergency medication to help stop prolonged or repeated seizures. There are two emergency medications used to treat status. Both these drugs are sedatives, which have a calming effect on the brain. Although it is rare, they can cause breathing difficulties so a child must be closely watched until they have fully recovered.

Buccal midazolam – given into the buccal cavity (side of the mouth between the cheek and gum).
Rectal diazepam – given rectally (into the bottom)
If a child has emergency medication there should be a care plan (protocol) in place for giving them emergency medication at school.

Anyone giving these drugs needs specialist training to learn how to do this. Training may be arranged by the local authority or the child’s medical professionals.

How will other pupils feel about epilepsy?
Generally, people feel more confident about epilepsy when they understand it and know what to do if someone has a seizure. Learning about epilepsy in the classroom can be good way to introduce information about the condition, without any children with epilepsy feeling that they are singled out.

Epilepsy Society is grateful to Christine Bennett, Senior Children’s Epilepsy Nurse, for her guidance on this information.

Information updated in May 2021

Source Epilepsy Society

Third of women unaware of meds risk to newborn babies

Third of women unaware of meds risk to unborn babies
A third of women taking some of the most commonly prescribed anti-seizure medications are unaware of the risks they pose to unborn babies, according to a new survey.

The results of the Epilepsy Medication in Pregnancy Survey, published today, show that 33 per cent of women taking anti-seizure medication did not know of the increased risk of physical birth abnormalities when taken in pregnancy. This figure rises to over half of women under 24. Medications covered in the survey include topiramate, carbamazepine, phenobarbital, phenytoin and pregabalin.

IMPORTANT: No woman should stop taking her epilepsy medication without consulting her doctor. If you are worried about your medication, please speak to your GP, neurologist or epilepsy specialist nurse.

33 per cent

These figures demonstrate the importance of Epilepsy Society’s Safe Mum, Safe Baby campaign which seeks to raise awareness around the risks posed by these medications when taken during pregnancy.

Safe Mum, Safe Baby is calling on the Government and private sector to fund vital research into safer epilepsy treatments during pregnancy, so women no longer have to make the impossible choice between taking their life-saving drugs and the health of their baby. As part of this campaign, we have presented a petition to the Patient Safety Commissioner, Dr Henrietta Hughes, and have been backed by a number of leading MPs.

Commenting on the results, Nicola Swanborough, Head of External Affairs at the Epilepsy Society, said: “It is extremely concerning that, two years after the Commission on Human Medicine’s landmark report, there is still such lack of awareness about the risks to unborn babies associated with many epilepsy medicines. Knowledge is power. It is clear that there is insufficient knowledge among women with epilepsy about these risks.”

“And even when women are aware, they often have to make an impossible choice between their life-saving medication and the health of their baby. This is devastating, but the solution is simple: more research. Our Safe Mum, Safe Baby research project has the answer. By studying the genes of father, mother and child, scientists have the expertise to determine the most effective, personalised treatments. The science exists; what is needed is investment. With the right funding, we believe that future generations will not have to face the heart-breaking choices highlighted in this survey.”

The survey also found that almost a third – 31 per cent – of women have never spoken with a healthcare professional about the risks of taking anti-seizure medication while pregnant. Again, this figure was higher for women under 24, at 39 per cent.

And, even when information was available, over a third (36 per cent) were not satisfied with the information they had received from healthcare professionals.

36 per cent

However, the survey did indicate that women are increasingly aware of the risks of taking sodium valproate during pregnancy. Only 9 per cent of respondents were unaware of the risks associated with valproate, compared with 18 per cent in a previous 2017 survey, and 17 per cent in 2019.

The Epilepsy Medication in Pregnancy Survey was conducted in November 2022 by Epilepsy Action, Epilepsy Society and Young Epilepsy.

This follows a 2021 Commission on Human Medicines report which showed that a number of epilepsy medicines were linked with an increased risk of birth abnormalities if taken during pregnancy, including carbamazepine, phenobarbital, phenytoin and topiramate.

Source Epilepsy Society

Government rolls out emergency alerts

Government rolls out emergency alerts
The Government is to roll out a new emergency alerts message system for mobile phones. We have been assured there will be no flashing images included with these alerts.

The UK’s new Emergency Alerts system is now live, and you should expect to receive a test message on 23 April. The system will enable people to be contacted via their mobile phone when lives are in danger.

** The Government have assured the Epilepsy Society that none of these alerts will include flashing images.**
It will be used to warn you in the event of emergencies, such as severe flooding.

Emergency Alerts are sent to all compatible mobile phones within an area of risk. They don’t track your location, need your phone number, or collect personal data. Only the Government and the emergency services will be able to send them. If you don’t have a mobile phone, you’ll still be kept informed through other channels.

If you get an Emergency Alert on your phone, you’ll hear a loud, siren-like sound. A message on your screen will tell you about the emergency and how best to respond. You’ll be able to check an alert is genuine at gov.uk/alerts

If you receive an alert, read the alert carefully and follow the instructions.

You can opt out of receiving emergency alerts; for more information on how to opt out please go to gov.uk/alerts

Source Epilepsy Society

Free NHS Prescriptions

prescriptions
You can get free NHS prescriptions if, at the time the prescription is dispensed, you:

are 60 or over
are under 16
are 16 to 18 and in full-time education
are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate.
have a specified medical condition and have a valid medical exemption certificate.
have a continuing physical disability that prevents you going out without help from another person and have a valid medical exemption certificate.

hold a valid war pension exemption certificate and the prescription is for your accepted disability
are an NHS inpatient
You’re also entitled to free prescriptions if you or your partner (including civil partner) receive, or you’re under the age of 20 and the dependant of someone receiving:

Income Support
income-based Jobseeker’s Allowance
income-related Employment and Support Allowance
Pension Credit Guarantee Credit
Universal Credit and meet the criteria
If you’re entitled to or named on:

a valid NHS tax credit exemption certificate – if you do not have a certificate, you can show your award notice. You qualify if you get Child Tax Credits, Working Tax Credits with a disability element (or both), and have income for tax credit purposes of £15,276 or less
a valid NHS certificate for full help with health costs (HC2)
People named on an NHS certificate for partial help with health costs (HC3) may also get help.

Read more about who can get free NHS prescriptions.

Check you’re eligible for free prescriptions
There’s a simple way to find out if you’re eligible for free NHS prescriptions and any help with other NHS costs.

Free prescriptions for certain medical conditions
People with certain medical conditions can get free NHS prescriptions.

Medical exemption certificates are credit-card-size cards. They are issued if you have:

cancer, including the effects of cancer or the effects of current or previous cancer treatment
a permanent fistula (for example, a laryngostomy, colostomy, ileostomy or some renal dialysis fistulas) requiring continuous surgical dressing or an appliance
a form of hypoadrenalism (for example, Addison’s disease) for which specific substitution therapy is essential
diabetes insipidus or other forms of hypopituitarism
diabetes mellitus, except where treatment is by diet alone
hypoparathyroidism
myasthenia gravis
myxoedema (hypothyroidism requiring thyroid hormone replacement)
epilepsy requiring continuous anticonvulsive therapy
a continuing physical disability that means you cannot go out without the help of another person (temporary disabilities do not count, even if they last for several months)

Find out more about medical exemption certificates.

How to apply for a medical exemption certificate
Ask your doctor for an FP92A form to apply for a medical exemption certificate.

Your GP will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from 1 month before the date the NHS Business Services Authority receives the application form.

The MedEx lasts for 5 years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed.

If you do not receive a reminder, it’s your responsibility to make sure it’s renewed.
Check if your exemption certificate is valid

How to apply for a medical exemption certificate
Ask your doctor for an FP92A form to apply for a medical exemption certificate.

Your GP will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from 1 month before the date the NHS Business Services Authority receives the application form.
The MedEx lasts for 5 years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed.
If you do not receive a reminder, it’s your responsibility to make sure it’s renewed.

Free prescriptions for pregnant women
If you’re pregnant or have had a baby in the past 12 months, you get free prescriptions if you have a valid maternity exemption certificate.

To apply for a maternity exemption certificate, contact your doctor, midwife or health visitor.

Your certificate will be sent to you by email or in the post.
The certificate will last until 12 months after the expected date of birth of your baby.
If your baby’s born early, you can continue to use your certificate until it expires.
If your baby is born late, you can apply for an extension.
If you apply after your baby is born, your certificate will last for 12 months from your baby’s birth.
Free prescriptions if you have a low income.
If you have a low income, you may be eligible to receive financial help through the NHS Low Income Scheme.

To apply for an HC2 certificate, complete form HC1, which is available from Jobcentre Plus offices or most NHS hospitals. You might also be able to get an HC1 form from your doctor, dentist or optician.

You can also get an HC1 form by calling 0300 123 0849.

You qualify for a full help HC2 certificate (which includes free NHS prescriptions) if your income is less than or equal to your requirements, or your income is greater than your requirements by no more than half the current English prescription charge.

You qualify for a limited help HC3 certificate if your income is greater than your requirements by more than half the current English prescription charge.

The HC3 certificate shows how much you have to pay towards your health costs.

Certificates are usually valid for between 6 months and 5 years, depending on your circumstances.

Find out more about the NHS Low Income Scheme and all the other ways to get free prescriptions by going to www.nhs.uk

Cost of Living Payment

You do not need to apply. You’ll be paid automatically.

If you have had a message asking you to apply or contact someone about the payment, this might be a scam.

You could get up to 3 different types of payment depending on your circumstances on a particular date or during a particular period:

The main cost of living payment, worth £650 in total, for those on income-related benefits and tax credits.

The disability payment, worth £150, for those on non-means-tested disability benefits.

The pensioner payment, worth £300, for everyone who receives the winter fuel payment.

For more in depth information go to Cost of living payments gov.uk

Epilepsy treatment and care

Epilepsy treatment and care
This information is for carers of people with epilepsy and a learning disability

Epilepsy medicines
For most people epilepsy medicine is the best and often only option for controlling seizures. For many people, being on the right dose of the right epilepsy medicine or medicines can mean their seizures stop completely.

It can be difficult or upsetting for some people with a learning disability to swallow tablets. There are usually a variety of forms of the medicines, such as liquids and granules, available. So it’s worth getting the one that is most manageable to help the person take their medicine exactly as prescribed.

For someone who is likely to have trouble remembering to take their epilepsy medicine, there are a variety of reminder devices available. For more information on medicine reminders see the Disabled Living Foundation website.

Website: livingmadeeasy.org.uk

There are small differences between versions of epilepsy medicine which can affect the way the medicine works. If you notice a change in seizures following a version change it is important to tell your doctor or pharmacist. Some people may need to stay on the same version of their epilepsy medicine.

For everyone with epilepsy the aim is to get the best possible seizure control with as few side-effects as possible. For a person with a learning disability it’s especially important that seizure control isn’t the only thing the doctor considers when prescribing epilepsy medicine. They should be helping the person reach the best quality of life possible for them.

Possible seizure triggers
Knowing the possible seizure triggers for the person you look after, can help to limit the number of seizures they have. It can also mean that the dose of their epilepsy medicine isn’t increased unnecessarily. These are the things people say trigger seizures:

Not taking epilepsy medicine as prescribed
Feeling tired
Not getting enough sleep
Stress
Alcohol
Flashing or flickering lights
Menstruation (periods)
Missing meals
Fever can also make it more likely that someone will have a seizure.

Changes in any other medicines they take, especially stopping sedating medicines, can also trigger seizures.

Side-effects of epilepsy medicine
As a carer you are likely to notice changes in emotional and physical health and behaviour of the person you are looking after. This information may help with what to look out for. And what you notice will be important to share with the doctor.

A person with a severe learning disability is more likely to have side-effects than someone with a milder learning disability
Small side-effects may be missed by a doctor who doesn’t know the person you look after very well. They may think that a problem the person has with understanding, co-ordination or behaviour may be because of the learning disability, when it could be a side-effect of an epilepsy medicine
People with epilepsy and a learning disability may well have side-effects that are different from the general population
Side-effects could explain someone’s reluctance to take epilepsy medicine
Side-effects could result in behaviour problems
Having too much of an epilepsy medicine could result in behaviour problems
Taking a number of epilepsy medicines can often result in significant side-effects
Side-effects could reduce the person’s ability to understand things
A number of the older epilepsy medicines can cause osteoporosis. If the person you care for is taking one of the older medicines you may want to ask the GP to give them a bone density test. If necessary the doctor may then give a particular medicine or supplement for the condition.

Epilepsy Action has more information about osteoporosis.

Interactions
Always check with the doctor or pharmacist before giving someone over-the-counter medicines. Some epilepsy medicines will interact with these as well as prescribed medicines.

Other ways of treating epilepsy
For some people who are still having seizures despite trying a number of epilepsy medicines, epilepsy surgery may be an option. The assessment for surgery is complex but it should be offered where it is believed epilepsy is coming from one part of the brain. Even so, not everyone will be suitable for surgery. However when a person with a learning disability is suitable for surgery the results can be very good.

If surgery isn’t a treatment option, the doctor may discuss the possibility of vagus nerve stimulation (VNS) or the ketogenic diet.

VNS is a treatment for epilepsy where a small device is implanted under the skin below the left collar bone. This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.

There are 2 modified ketogenic diets. These are the Modified Atkins diet (MAD) and the low glycemic index treatment (LGIT) diet. The MAD involves restricting carbohydrates and encouraging fat. Protein is not restricted. On the LGIT diet carbohydrates and protein are both restricted and fat is encouraged.

These 2 modified diets are less strict than the ketogenic diet and weighing of food is not needed. The MAD is increasingly being chosen for children.

They are sometimes used to try and help people whose seizures cannot be reduced or stopped with epilepsy medicine or other treatments.

Epilepsy Action has more information about epilepsy medicines, surgery, VNS and the ketogenic diet.

Seizure diaries
Keeping a seizure diary is a good way of having a record of someone’s health day by day. It’s also an efficient way of showing a neurologist possible connections between changes in someone’s seizure control, general health, dose changes and side-effects.

Epilepsy Action has seizure diaries.

You might also want to look at Myhealthguide: myhealthguideapp.com

First aid
Epilepsy Action has information on first aid, including what to do if someone is in a wheelchair.

Care plans
Everyone with epilepsy should have a care plan. This is especially important if the person may need emergency treatment for their seizures. The plan should be drawn up by a medical professional, the person the care plan is about and their carers.

Epilepsy Action has care plans. These are not in Easy Read but you could use one alongside an Easy Read healthcare passport.

Website: ekhuft.nhs.uk/patients-and-visitors/about-us/people-with-learning-disabilities/my-healthcare-passport

Emergency treatment for seizures that last a long time
Many people have seizures that last for less than 5 minutes and stop without any treatment. But some people have seizures that last too long. These are known as status epilepticus and need treating urgently. This is to try and stop them before they cause long-term damage. The sooner the seizure is treated the easier it will be to get it to stop.

By the time a seizure is lasting for 30 minutes or more, it is much more difficult to stop. If a tonic-clonic or cluster of tonic-clonic seizures last longer than 30 minutes, this can cause damage to the brain, or even death.

What type of seizures turn into status epilepticus?
Any type of seizure can become status epilepticus.

Tonic-clonic (convulsive) status epilepticus
During a long convulsive tonic-clonic seizure, the body struggles to circulate oxygen. When this happens, the brain doesn’t get enough oxygen. Over a long period, this can lead to brain damage and death.

Non-convulsive status epilepticus
Some people with epilepsy, particularly people with learning disabilities or an epilepsy syndrome, have a different type of status epilepticus. They may just appear to be vacant. Or they might have some minor twitches in their face or rolling of their eyes. These can be symptoms of non-convulsive status epilepticus. The only clues to this will be changes in their brainwave patterns that can be seen on an electroencephalogram (EEG). It’s important that you are aware of this, as it can last for weeks, if not treated. If you think this may be happening for the person you care for, you may want to speak to your consultant who can arrange for them to have an EEG in hospital. If this process would be too slow, you may want to take the person you care for to A and E.

Rectal diazepam and buccal midazolam are both used as an emergency treatment. Buccal midazolam has the advantage of not causing the person concerned embarrassment. The issue of consent to emergency treatment can be a challenging one for the person involved and their carer. The NHS website has some helpful information on definitions of consent and what to do if that is difficult to get.

Website: nhs.uk/conditions/consent-to-treatment

Epilepsy Action has more information on emergency treatment for seizures that last a long time.

In hospital
The NHS website has a range of useful guidance about getting the person you look after the best care and treatment when they are in hospital.

Website: nhs.uk/nhs-services/hospitals/going-into-hospital/

Epilepsy Action would like to thank Dr Lance Watkins Consultant Psychiatrist, Neath Port Talbot Community Learning Disability Team for his contribution to this information.

Source Epilepsy Action