Driving

Epilepsy and driving
You must tell DVLA if you’ve had any epileptic seizures or blackouts.

You must stop driving straight away.

You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.

Car or motorbike licence
Report your condition online

You can also fill in form FEP1 and send it to DVLA. The address is on the form.

Your licence may be taken away. When you can reapply for it depends on the type of seizure you had.

You’ve had epileptic seizures while awake and lost consciousness
Your licence will be taken away. You can reapply if you haven’t had a seizure for at least a year.

If you had a seizure because your doctor changed or reduced your anti-epilepsy medicine, you can reapply when:

the seizure was more than 6 months ago

you’ve been back on your previous medication for 6 months

you haven’t had another seizure in that time

You’ve had your first-ever seizure while awake and lost consciousness
Your licence will be taken away. You can reapply when both the following are true:

you haven’t had a seizure for 6 months

DVLA’s medical advisers decide there isn’t a high risk you’ll have another seizure

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they’ll let you know.

Otherwise you can reapply after a year.

You’ve had seizures while asleep and awake
You may still qualify for a licence if the only seizures you’ve had in the past 3 years have been while you were asleep. DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

You’ve only had seizures while asleep
You may still qualify for a licence if it’s been 12 months or more since your first seizure. DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

You’ve had seizures that don’t affect your consciousness
You may still qualify for a licence if the only type of seizure you’ve ever had is one where:

you were fully conscious and aware of what was happening around you
you were able to move and did not lose control of your movements
Your first seizure must have been 12 months ago or more.

DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

Bus, coach or lorry licence
Fill in form FEP1V and send it to DVLA. The address is on the form.

How long you will lose your licence for depends on what type of seizure you have.

You’ve had more than one seizure
Before you reapply for your licence, you must show you haven’t:

had an epileptic seizure for 10 years

taken any anti-epileptic medication for 10 years

got a 2% or higher risk of another seizure, according to DVLA’s medical advisers

You must also have a car and motorbike licence.

You’ve had a one-off seizure
Before you reapply for your licence, you must show:

you haven’t had an epileptic seizure for 5 years

you haven’t taken any anti-epileptic medication for 5 years

You must also have:

a car and motorbike licence

been assessed in the past 12 months by a neurologist

results from medical investigations for epilepsy that are satisfactory to DVLA’s medical advisers

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they’ll let you know.
Source Gov.UK

Move Forward

Two new anti-seizure medicines with novel mechanisms move forward

Two new anti-seizure drugs have moved forward in the testing and approval process. Potiva, known generically as ezogabine or retigabine was recommended for approval by an FDA advisory panel, although with cautions to monitor for bladder retention as a side effect. Retigabine acts on a potassium channel in brain cells. Excitability of brain cells is controlled by ion channels, which are proteins that act as passageways for sodium, potassium, calcium and chloride ions into and out of the cells. Existing anti-seizure drugs work on sodium, calcium and chloride channels. Retigabine is the first clinically available drug to affect potassium channels. Potiva, sponsored jointly by Valeant and Glaxo Pharmaceuticals, will presumably be available soon after FDA final approval.

A second drug, called perampanel, works by blocking the excitatory neurotransmitter glutamate at the so-called AMPA receptor site. No currently available anti-seizure drug uses this mechanism. The drug’s sponsor, Eisai, reported favorable results from a mainly European and Asian trial in 706 patients who received 2, 4 or 8 mg of perampanel. Seizures were reduced when the drug was added to existing drug regimens. Side effects typically included dizziness, sleepiness or headache, but the medication usually was well-tolerated. The sponsor plans to submit the drug for FDA approval.
Source Epilepsy Foundation

Now and in the Future

Treating Epilepsy: Now and In the Future
Nov. 16, 2019
Here is what you need to know about epilepsy and the types of treatments that are available for it.

The Future of Treating Epilepsy
What is epilepsy?
Epilepsy is a disorder characterized by recurrent, unprovoked seizures. A seizure occurs when there is a surge of electricity in nerve cells in the brain that results in clinical symptoms. Those symptoms may include movements, jerking, unusual sensations or simply a loss of awareness. The terms epilepsy and seizure disorder mean the same thing. More than three million people in the United States have epilepsy. Studies show that in about half of people with epilepsy, medications do not completely control seizures. This is referred to as medication-resistant or refractory epilepsy.

What are the treatment options for epilepsy?
When someone has two unprovoked seizures, or a single seizure with a high risk of having another seizure, treatment with anti-seizure medications is usually started. There are many different anti-seizure medications that can be used as a first treatment. Anti-seizure medications differ by mechanism of action, potential drug interactions and side effect profile. There is not a single drug that is right for everyone. About half of the people treated with epilepsy will respond well to the first medication. A smaller percentage will have complete seizure control on the second medication. Once a person has failed to get complete seizure control on two different medications, the likelihood that additional medications will stop the seizures is usually less than 10%.

Do seizure medications have many side effects?
The most common side effects with anti-seizure medications are drowsiness, dizziness, nausea or unsteady gait. However, with adjustments in dosage and carefully matching the medications with patient characteristics, most patients tolerate anti-seizure medications quite well. There are other rare but dangerous side effects like liver or bone marrow damage, or severe rashes.

What is medication-resistant or refractory epilepsy?
If a patient fails to get complete control of seizures after trials of two appropriately chosen medications, it’s referred to as medication resistant or refractory epilepsy. In several studies, up to 50% of people with epilepsy did not get full control of seizures with medication. It’s been recommended that all patients with medication-resistant epilepsy should get advanced evaluation at an epilepsy center.

If the patient is already seeing a neurologist, why would they need to go to an epilepsy center?
The key element of an epilepsy center is usually an inpatient epilepsy monitoring unit, or EMU. In these units, patients are monitored continuously with video and EEG. Medications are often reduced to bring seizures on. That way a seizure can be studied second by second for behavior and EEG. This allows precise mapping of the part of the brain where seizures start as well as the patterns that seizures spread throughout the brain. Most importantly, for people with epilepsy, the EMU can determine whether their seizures are focal (start in a particular part of the brain and then spread), or generalized (start in the whole brain at once). Whether the seizures are focal or generalized determines which medications may work the best. Many people who come in to an EMU may have episodes that look like seizures, but do not have seizures or have epilepsy. Attacks that mimic seizures may be caused by heart problems, sleep problems or psychological problems. This is very important to determine because anti-seizure medications do not work in these non-epilepsy conditions, and can have unwanted side effects. In some people with epilepsy who have not responded to medication, surgical treatment can provide a very effective and safe option.

Who is a candidate for epilepsy surgery? What surgical options are available?
Traditional epilepsy surgery involves precise mapping of the area of the brain where seizures start, and then additional mapping to be sure that removing that portion of the brain would not adversely affect speech, memory, movement, sensation or other critical brain functions. Several different studies including brain imaging with advanced MRI, brain blood flow tracers, brain metabolic tracers and sometimes seizure recording and mapping with intracranial electrodes are needed. This type of advanced surgical planning is best accomplished by an experienced and comprehensive team at an epilepsy center. The team at the UC Gardner Neuroscience Institute Epilepsy Center has more than 30 years of experience in these advanced evaluations and surgical treatments. Our multidisciplinary team has over a dozen physicians with advanced training in epilepsy treatment. Over the last several decades, epilepsy surgery has become more effective and safer than ever before. In many cases, a patient who has little or no chance of ever becoming seizure free with additional trials of medication may have a 70% or better chance of becoming seizure-free with surgery. More recently, several different devices have become available for treatment of epilepsy when medications have been ineffective. These include vagus nerve stimulation, responsive neuro stimulation and deep brain stimulation.

What are the most important issues affecting people with epilepsy?
Surveys of people with epilepsy show that seizures can have a wide range of effects on their lives. Patients strive to feel normal because of the ever-present fear of having a seizure. Seizures are almost always unpredictable, so having seizures often limits the kinds of jobs people with epilepsy can have and often limits their ability to drive. Even activities like taking a bath or climbing up on a ladder can be dangerous. Many people with epilepsy find it difficult to hold a steady job and may miss days of work. Having epilepsy increases the risk of depression and anxiety. It is important for patients to report symptoms of depression and anxiety to their health care providers so that they can be treated appropriately.

What research is on the horizon to help people with epilepsy?
New anti-seizure medications are constantly being developed and tested. As we learn more about chemicals in the brain that control the behavior of nerve cells, medications that modulate these chemicals may be able to stabilize nerve cells and prevent seizures. Cannabidiol (CBD) is a component of marijuana that has been proven to reduce the frequency of seizures in many cases. The UC Gardner Neuroscience Institute was instrumental in many of the studies leading the FDA to approve cannabidiol as a seizure treatment. Our team at the UC Gardner Neuroscience Institute Epilepsy Center has been involved in more than 40 studies of new epilepsy treatments. Our team is evaluating and using new and better surgery methods. We are using precisely-focused, laser-induced heat to ablate a seizure focus, which may lead to fewer complications from epilepsy surgery. The success of stimulation devices in epilepsy is leading to more research in this area. Our team has been working for several decades on studies to determine which anti-seizure medications are safest in pregnancy, and how seizures change during and after pregnancy.

What about research to predict when seizures might happen?
Our team at the UC Gardner Neuroscience Institute has invested several years of research into seizure prediction. In a study using daily diaries from people with epilepsy, our team found that some patients may be able to predict when the risk of a seizure is higher. We are currently planning several large scale studies using diaries along with information provided from wearable devices to identify times of high seizure risk. If a person with epilepsy knew that the risk of seizures was high, they might be able to avoid risky activities, make sure they are not left alone or alter medication dosage with guidance from their healthcare provider.

Can someone die from seizures?
A rare but devastating effect of seizures can be sudden death. This is known as sudden unexpected death in epilepsy (SUDEP). It is estimated that about one in 1000 people with seizures that are not controlled with medication may die from SUDEP. The biggest risk factors are having generalized tonic-clonic seizures, having seizures at night and not being compliant with medication. A major area of research at the UC Gardner Neuroscience Institute Epilepsy Center is to identify and reduce the risk factors for SUDEP.

Epilepsy can affect people’s lives in many ways. At the UC Gardner Neuroscience Institute Epilepsy Center, we are constantly working to improve the lives of people with epilepsy. We provide expert and compassionate care, match treatments to an individual’s needs and are constantly striving to discover new, more effective treatments for epilepsy.

Source U C Health

Terminology

Epilepsy terminology
There are a number of common misconceptions surrounding epilepsy and epilepsy terminology.

Saying it right
Some terms used in association with the condition are becoming less appropriate, due to their negative connotations or inaccuracy. While seizures may be referred to as ‘epileptic’, this is not an appropriate term for a person with the condition. The correct term is ‘person with epilepsy’.

Seizure, fit, attack?
The word for an epileptic event is ‘seizure’. This most accurately describes the wide-ranging experiences of people with epilepsy. The words ‘attack’, ‘fit’ and ‘turn’ are still used, but decreasingly. The word ‘fit’, for example, implies a convulsive seizure but not all seizures will be convulsive.

In the interests of accuracy, the terms ‘grand mal’ and ‘petit mal’ should not be used to describe seizure types, as epilepsy is a very complex condition with many different seizure types. These terms have been replaced by a range of classifications which more accurately describe how different seizures manifest themselves.

There has been criticism that the word ‘brainstorming’ is offensive to people with epilepsy. Epilepsy Society recently conducted a small survey among people with the condition and the overwhelming response was that the term is not offensive when used in its correct context, defining a session amassing spontaneous ideas as potential solutions to a problem.

Epilepsy and associated disabilities
Epilepsy is not a disease or an illness and it is not catching. It is the most common serious neurological condition. There is no causal link between epilepsy and learning disabilities, however both are outward symptoms of underlying brain dysfunction or damage and sometimes their cause is the same. 30% of people with learning disabilities have epilepsy; 15% of people with epilepsy have learning disabilities.

Ancient misconceptions about epilepsy are still in evidence today. There is much stigma attached to having the condition. A study by Epilepsy Society showed that around 2% of people in the UK still believe epilepsy is caused by possession of evil spirits. The study also showed that over 75% of people would call an ambulance if they witnessed a seizure rather than apply some simple first aid.
Source The Epilepsy Society

Work Capability Assessment

Changes to tests for work capability – have your say
The Government has announced plans to introduce new welfare reforms which it says will help give people with disabilities and health conditions more opportunity to benefit from flexible working including working from home.

The reforms will look at the Work Capability Assessment (WCA), a test that looks at how much a disability or illness limits a person’s ability to work.

The Department for Works and Pensions say they want to update the WCA’s categories so that they better reflect the modern world of working which includes working from home and more flexible working patterns.

Earlier this year the Government announced £2 billion investment to support disabled people and people with health conditions into work.

By reviewing the WCA categories, the Government hopes to ensure people have the appropriate work opportunities and tailored support.

It is important that you submit your views to the Government about the welfare reforms and how they will affect you. You will find a two-page guidance document and a link to taking part in the consultation at the end of this article.

Nicola Swanborough, Head of External Affairs at the Epilepsy Society said: “The world of work has changed considerably since the pandemic, and is still evolving. This has opened up opportunities for many people to work from home which could benefit some people whose seizures mean they cannot drive.

“It could also mean more flexible working for those who experience anxiety alongside their epilepsy.

“However, it is critical that those carrying out the assessments have a full understanding of the complexities of epilepsy, its unpredictability and the challenges of a hidden disability.

“Epilepsy often goes hand in hand with anxiety and depression. Asleep seizures can leave people shattered in the morning and while one person may recover quickly from a seizure, others can take a week or more to feel well again.

“Someone with epilepsy may be able to run 10km on a good day, but following a seizure they may struggle to get to the toaster to make breakfast. Epilepsy doesn’t fit neatly into binary categories. It needs to be considered in its full context.

“If someone with epilepsy is returning to the workplace, it will be important for them to feel fully supported and for their employers to understand epilepsy and to make any necessary adjustments.”

The consultation will run until 30 October 2023 and the welfare reforms will come into force in 2025.

How to take part in the consultation

The Government wants to hear from people with disabilities as well as disability organisations. It will be holding a number of virtual events and face-to-face meetings. You can find all the details here: You can submit your views here. We have also prepared a two page guidance document to help you complete the consultation.
For more information about this please go to the Epilepsy Society web site.

Source The Epilepsy Society

Orford Tea Room fundraiser

The Ipswich Epilepsy Support Group would like to thank everyone who helped with the fundraising event on the 1st and 2nd of September at Orford Tea Room. There was homemade sausage rolls, cakes, and cheese straws a galore.
We would like to say a special thank you to Pam, Karen,Stephen and Pam and a thank you to everyone who donated, baked and supported the event in anyway.

Over the two days £395 was raised.

Epilepsy Auras

Epilepsy auras
An ‘aura’ is the term that some people use to describe the warning they feel before they have a tonic clonic seizure. An epilepsy ‘aura’ is in fact a focal aware seizure.

Focal aware seizures (FAS) are sometimes called ‘warnings’ or ‘auras’ because, for some people, a FAS develops into another type of seizure. The FAS is therefore sometimes a warning that another seizure will happen (see focal to bilateral tonic-clonic seizures).

Some people may describe their auras as:

• a ‘rising’ feeling in the stomach or déjà vu (feeling like you’ve ‘been here before’);

• getting an unusual smell or taste;

• a sudden intense feeling of fear or joy;

• a strange feeling like a ‘wave’ going through the head;

• stiffness or twitching in part of the body, (such as an arm or hand);

• a feeling of numbness or tingling;

• a sensation that an arm or leg feels bigger or smaller than it actually is; or

• visual disturbances such as coloured or flashing lights or hallucinations (seeing something that isn’t actually there).

Information produced: November 2017
Source Epilepsy Society

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