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The Autistic Spectrum

Many people have asked about info on epilepsy and seizures, so I'll be putting what I have up on this page. There is some other info located on the Info page, but the bulk of what I've gathered over the last few years will be located here.

E Fact A Day is a website created by two young women to raise public awareness on Epilepsy. Please click on the text here to learn about them and to view their wonderful site!

Some Facts About Epilepsy

  • Epilepsy is the tendency to have recurrent seizures.
  • There are over 40 different types of seizure and a person may have more than one type.
  • Epilepsy can affect anyone, at any age and from any walk of life.
  • 440,000 or 1 in every 133 people in the UK has epilepsy.
  • On average 81 people every day are diagnosed with epilepsy.
  • Epilepsy is a neurological condition.
  • 1 in 20 people will have a single seizure at some time in their life.
  • Many people who develop epilepsy below the age of 20 will 'grow out of it' in adult life.
  • Many people with epilepsy are still discriminated against due to ignorance about the condition.
  • The vast majority of people with epilepsy can take part in the same activities as everyone else, with the help of simple safety measures.

Terminology To Avoid

  • Illness: epilepsy is a condition, not an illness.
  • Fit: an ambiguous word which conjures up pictures of insanity or rage. The term 'seizure' or 'epileptic seizure' is preferred as people with epilepsy do not always experience convulsions.
  • An epileptic: it is important to look at the person before the medical condition, therefore it is more appropriate to say 'a person with epilepsy'.
  • A victim, sufferer (or similar word depicting a poor, pathetic creature).
  • Grand Mal or Petit Mal: terms previously used to describe types of seizure. In fact, there are many types of seizures so these terms are now considered outdated.

Seizures Explained

I. Partial (focal, local) seizures

A. Simple partial seizures (consciousness is not impaired)

1. With motor symptoms
2. With somatosensory (1) or special sensory symptoms
3. With autonomic (2) symptoms
4. With psychic (3) symptoms

B. Complex partial seizures (with impairment of consciousness)

1. Beginning as simple partial seizures and progressing to impairment of consciousness
    a. With no other features
    b. With features as in I.A.1 - 4
    c. With automatisms (4)

2. With impairment of consciousness at the start
    a. With no other features
    b. With features as in I.A.1 - 4
    c. With automatisms

C. Partial seizures evolving to secondarily generalized seizures

1. Simple partial seizures evolving to generalized seizures
2. Complex partial seizures evolving to generalized seizures
3. Simple partial seizures evolving to complex partial seizures to generalized seizures.

 II. Generalized seizures (convulsive or non-convulsive)

A. Absence seizures

1. Absence seizures
2. Atypical absence seizures

B. Myoclonic seizures
C. Clonic seizures
D. Tonic seizures
E. Tonic-clonic seizures
F. Atonic seizures

 III. Unclassified epileptic seizures

Includes all seizures that cannot be classified because of inadequate or incomplete data and some that defy classification in any of the above categories. This includes some neonatal seizures eg. rhythmic eye movements, chewing and swimming movements.

* * * * * * * * * *

(1.)  somato = body; sensory = relating to the senses or the power of sensation.
(2.)  relating to the involuntary actions such as heart rate, sweating etc.
(3.)  affecting the mind as well as the body.
(4.)  actions which the person has no knowledge of and no control over. Examples are plucking at clothes, smacking of lips or wandering around as if drunk.


What is epilepsy?
Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.
The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.
What is a seizure?
A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.
The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word "epilepsy" does not indicate anything about the cause or severity of the person's seizures.
If I have one seizure, does that mean I will get epilepsy?
About half of the people who have one seizure without a clear cause will have another one, usually within 6 months. You are twice as likely to have another seizure if you have a known brain injury or other type of brain abnormality. If you do have two seizures, there's about an 80% chance that you'll have more.
If your first seizure occurred at the time of an injury or infection in the brain, you are more likely to develop epilepsy than if you had not had a seizure in that situation.
Seizures are also likely if your doctor finds abnormalities on a neurological examination; a set of tests of the functioning of your nervous system that is performed in the doctor's office.
Another thing that can help your doctor predict whether you will have more seizures is an EEG, electroencephalogram (e-LEK-tro-en-SEF-uh-LOG-ram), a test in which wires attached to your scalp record your brain waves. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy as someone who does not have those patterns.
Symptoms of a seizure
A seizure is usually defined as a sudden alteration of behavior due to a temporary change in the electrical functioning of the brain, in particular the outside rim of the brain called the cortex. Below you will find some of the symptoms people with epilepsy may experience before, during and after a seizure. Seizures can take on many different forms and seizures affect different people in different ways. It is not implied that every person with seizures will experience every symptom described below.
Seizures have a beginning, middle, and end.
When an individual is aware of the beginning, it may be thought of as a warning or aura. On the other hand, an individual may not be aware of the beginning and therefore have no warning.
Sometimes, the warning or aura is not followed by any other symptoms. It may be considered a simple partial seizure by the doctor.
The middle of the seizure may take several different forms. For people who have warnings, the aura may simply continue or it may turn into a complex partial seizure or a convulsion. For those who do not have a warning, the seizure may continue as a complex partial seizure or it may evolve into a convulsion.
The end to a seizure represents a transition from the seizure back to the individual’s normal state. This period is referred to as the “post-ictal period” (an ictus is a seizure) and signifies the recovery period for the brain. It may last from seconds to minutes to hours, depending on several factors including which part(s) of the brain were affected by the seizure and whether the individual was on anti-seizure medication. If a person has a complex partial seizure or a convulsion, their level of awareness gradually improves during the post-ictal period, much like a person waking up from anesthesia after an operation. There are other symptoms that occur during the post-ictal period and are detailed below.
Please note: Below is only a partial list, some people may experience other symptoms not listed below. These lists are meant to help patients communicate with their physicians.
 Early seizure symptoms (warnings)
Sensory/Thought: Emotional: Physical: No warning:
  • Deja vu
  • Jamais vu
  • Smell
  • Sound
  • Taste
  • Visual loss or blurring
  • Racing thoughts
  • Stomach feelings
  • Strange feelings
  • Tingling feeling
  • Fear/Panic
  • Pleasant feeling
  • Dizziness
  • Headache
  • Lightheadedness
  • Nausea
  • Numbness
  • Sometimes seizures come with no warning

Seizure symptoms
Sensory/Thought: Emotional: Physical:
  • Black out
  • Confusion
  • Deafness/Sounds
  • Electric Shock Feeling
  • Loss of consciousness
  • Smell
  • Spacing out
  • Out of body experience
  • Visual loss or blurring
  • Fear/Panic
  • Chewing movements
  • Convulsion
  • Difficulty talking
  • Drooling
  • Eyelid fluttering
  • Eyes rolling up
  • Falling down
  • Foot stomping
  • Hand waving
  • Inability to move
  • Incontinence
  • Lip smacking
  • Making sounds
  • Shaking
  • Staring
  • Stiffening
  • Swallowing
  • Sweating
  • Teeth clenching/grinding
  • Tongue biting
  • Tremors
  • Twitching movements
  • Breathing difficulty
  • Heart racing

After-seizure symptoms (post-ictal)
Thought: Emotional: Physical:
  • Memory loss
  • Writing difficulty
  • Confusion
  • Depression and sadness
  • Fear
  • Frustration
  • Shame/Embarrassment
  • Bruising
  • Difficulty talking
  • Injuries
  • Sleeping
  • Exhaustion
  • Headache
  • Nausea
  • Pain
  • Thirst
  • Weakness
  • Urge to urinate/defecate

If you or someone you know has the symptoms listed above -- you are not alone. Below are personal stories by people who have either experienced or witnessed seizure symptoms.



Epilepsy - A Parents' Guide

Many people with epilepsy experience their first seizure before the age of 20. So, if your child has developed epilepsy, you are not alone and, these days, there's a good chance that her/his condition can be kept well under control.

Childhood epilepsy varies enormously in type, degree or severity and can be linked with other problems. Most children with straightforward epilepsy have a perfectly normal, active childhood and, with a few sensible safety precautions, are able to enjoy doing all the things their friends do, like swimming, sports and games and so on. Sometimes, however, the condition is more serious, and children need long-term treatment and support.

Hopefully this guide will help you, as a parent or carer, to understand your child's condition so you can encourage her/him to grow into a happy, independent individual who is confident about the future.

Describing childhood epilepsy

Epilepsy can begin at any age but it often starts early in life. Although some people believe it is linked with physical disability or mental handicap, in fact most children with epilepsy have exactly the same range of intelligence and abilities as unaffected children.

Some do have physical or mental problems as well as seizures, which may be linked to brain damage or disease. It's usually these underlying problems which have caused epilepsy, however, rather than the other way round.

Is it my fault?

Like many parents you may wonder whether something you did or failed to do sparked off your child's epilepsy, and searching for a cause is part of your attempt to come to terms with your child's condition. However, it's highly unlikely that anything you did is responsible for your child's seizures and, in many cases, the cause of epilepsy is a mystery.

Spotting epilepsy in childhood

It can be very frightening to see your child having what appears to be a seizure. However, it's important to keep calm so you can describe exactly what happened to the doctor. Epilepsy is often difficult to diagnose, and it is not always clear whether a child has had a seizure. If your child collapses for any reason at all contact your doctor. Children, like adults, can have either generalized or partial seizures. Other conditions can sometimes be mistaken for epilepsy and it's important for the doctor to exclude these. They include febrile convulsions and breath-holding attacks.

Febrile convulsions

These convulsive seizures are caused by a rapid rise in temperature and linked to childhood illnesses such as tonsillitis and teething. Fortunately, most children grow out of them by the time they start school. Also see Febrile Seizures down below.

Breath-holding attacks

These are an extreme reaction to shock or frustration. Instead of screaming with fear, pain or anger, the child screams once, draws a huge breath as if to carry on and then holds it for so long she/he passes out. This causes the child to stop holding her/his breath. Although alarming to witness, your child can't do himself lasting physical harm during such an attack.

Difficult to control epilepsy (epilepsy 'plus')

Although the outlook is good for most children with epilepsy, some children have severe forms of the condition which are difficult to control with drugs and continue having seizures. They can include various 'syndromes'. A syndrome is a group of symptoms. The medical specialist can identify an epilepsy syndrome by the type of seizures your child has, when she/he develops them and other identifying signs and symptoms. Children with difficult to control epilepsy may have other problems, such as delayed development and learning difficulties and for this reason doctors often use the term 'epilepsy plus'.

It's always a blow to learn that your child has a condition that may not go away and it's common to go through a period of grieving as you get used to the idea.


Your observations and knowledge of your child are vital in helping the doctor reach a diagnosis. As well as the usual diagnostic tests, such as blood tests, EEG and brain scans, your child may also be referred for development and behavioral checks to assess her/his overall progress.

Talking it over

You will need plenty of time to ask questions and voice any worries you may have about your child's diagnosis. Your doctor can give you information, advice and reassurance, but in a busy surgery there is not always time for long discussion. Ask whether you can arrange a special appointment or, alternatively, there may be a counselor at the surgery or a special epilepsy liaison nurse at the hospital clinic. You may be shocked to discover your child has epilepsy, but remember - eight out of ten children who have the condition lead trouble-free, enjoyable lives.

Treatment and management ~ Medical treatment

The aim of medical treatment is to control your child's tendency to have seizures, so she/he can get on with life with as little disruption from epilepsy as possible. Avoiding the things which may trigger seizures and taking anti-epileptic drugs are the main ways to achieve this.

Your child will usually need to stay on anti-epileptic drugs until she/he has been free from seizures for at least two years, and in certain cases she/he may need to continue taking anti-epileptic drugs indefinitely. Usually your child will move from the pediatrician (children's specialist) to adult care at around 16 years of age, but this may vary.


Surgery is another option which is becoming more widely available for a few children with certain types of epilepsy.

Also see Surgery down below.


Some children with certain difficult to treat forms of epilepsy may be helped by going on a high-fat diet called a ketogenic diet. Unfortunately it's often difficult to follow and can make your child feel unwell, but it can be worth trying if your doctor recommends it. Always check with your doctor before placing your child on a special diet.

See Ketogenic Diet below.

The family

When you first learn that your child has epilepsy you may be frightened and panicky. You may worry about how her/his epilepsy will effect her/his childhood and be concerned that the anti-epileptic drugs may have side effects, all of which is perfectly understandable. The problems you encounter are unique to your family, and realistically you may have to be prepared for some difficult times. However, most families cope well once they understand what epilepsy involves and learn how to manage it.

Staying positive

Your own common sense, experience and intuition will guide you as to how best to care for your child. Finding out as much as you can about the condition will help you build up confidence in yourself and your ability to respond to her/his needs. Try not to be overprotective or concentrate all your attention on the child with epilepsy.

Other people

You may fear that friends, neighbors and relatives will react badly to the news that your child has epilepsy. Negative reactions are most likely when people are afraid or don't know what epilepsy involves. Openness and honesty are the best ways to combat any stigma surrounding epilepsy and you will probably find that most people are sympathetic and supportive if they know how they can help.

Epilepsy & behavior

Few families - whether they have a child with epilepsy or not - escape behavioral problems at some stage. It's rare for these to be a direct result of epilepsy and it's a myth that there is an 'epileptic personality'. Some children's seizures are made worse by stress, emotional upset or boredom, and in some cases difficult behavior can sometimes be caused by certain anti-epileptic drugs. Sometime, simply missing out on information during an absence seizure or having to miss an outing because of an attack can leave the child feeling frustrated or confused, leading to behavior problems.

If your child does develop a problem, try to find out what is causing it if you can. The professionals who are involved with your child can help too so don't be afraid to talk to them and ask for help.

Bullying & teasing

Some children with epilepsy are picked on at school. This may be because they lack confidence and don't feel able to assert themselves. Signs can include temper tantrums, violence, or sudden misbehavior like playing truant, or nervousness. Talk to your child's teacher if you are worried and make sure your child knows she/he has your support and encouragement to stand up for her/himself.

Helping your child live with epilepsy

Accurate information combined with a positive outlook will help you and your child to enjoy her/his childhood. Tell her/him as much as you think she/he can understand about epilepsy and start showing her/him simple ways to manage the condition. As she/he gets older you can encourage her/him to take increasing responsibility for her/him self. The following guidelines may be useful:

DO -

  • accept your child for what she/he is - a unique individual who happens to have a tendency to have seizures - and encourage her/him to do the same support your child and help her/him develop confidence to deal with different situations
  • make sure each of your children has a fair share of your time, interest and energy
  • concentrate on what your child with epilepsy can do, rather than what she/he can't do
  • bear in mind that it's perfectly normal to feel angry and resentful with your children from time to time - however much you love and care for them
  • have fun together as a family


  • rush in to help unless your child obviously needs it
  • restrict your family life because of your child's epilepsy
  • treat your child with epilepsy differently from your other children
  • allow your child to think of her/himself as 'sick' or use epilepsy as an excuse
  • be afraid to ask others to help out occasionally to allow you to regain your emotional and physical energy

Managing a young child

Young children learn by doing so it's up to you to encourage her/his natural urge to explore. Your child will benefit from going to mother and toddler group and, later, playgroup or nursery, but make sure the staff and any volunteer helpers know she she/he has epilepsy and what to do if she/he has a seizure.

Education - 3 to 16

See Teacher's Guide and more down below. 

Most children and young people with epilepsy attend ordinary schools, colleges and universities. School is a central part of your child's life and fortunately she/he should be able to take part in most activities just like any other child. You will probably find that most teachers and helpers are accepting and helpful once they know what is involved in your child's condition. For example they need to know that she/he doesn't have to be sent home every time she/he has a seizure, but can return to class after a suitable rest period. Some schools have a written policy on epilepsy - the school nurse will be able to help you.

Epilepsy & learning

Most children with epilepsy are just as capable of learning as other children, and many do very well indeed. However, it's a sad fact that some don't achieve as much as they could at school. Your child's lack of attainment may not be directly linked to epilepsy at all, so if you suspect that she/he is not progressing as well as she/he could, have a word with the teacher and the doctor to try and pinpoint the problems.

Learning difficulty

Some children with epilepsy do have learning difficulty (the term used to describe a child who finds it harder to learn than most children of the same age, or who has a disability which makes it difficult to make use of the school's facilities). In this case your child will need special help to reach her/his full potential.

Fortunately, most learning difficulties are mild and overcome quite quickly, but sometimes they last longer and are more serious. Your child is most likely to experience serious learning difficulty if she/he has severe, uncontrolled seizures and/or physical and mental problems as well as epilepsy, in other words 'epilepsy plus'.

Special educational needs

If your child is falling seriously behind other children of the same age, or if you think she/he isn't getting all the help she/he needs at school she/he may have special educational needs. This involves collecting information about your child's progress from you, your child's teacher, an educational psychologist and anyone else who can help give a picture of your child's needs.

Should my child go to a special school?

Most children with special educational needs can be educated in an ordinary school, perhaps with the help of outside specialists, but sometimes a child with severe learning difficulties may do better at a special school, where her/his needs can be met more easily.

Adolescence to adulthood

All adolescents need help in learning to accept and like themselves as they are. It's very common for teenagers with epilepsy to use their condition as a peg on which to hang their anxieties and discontents, for example by rebelling over taking their tablets. Worrying though this is, try not to make it into a big issue. The more your teenager understands about her/his medication the better able she/he will be to make responsible decisions.

With your love and support your teenager can learn that epilepsy doesn't have to rule her/his life. Provided they are sensible there's no reason why young people with epilepsy shouldn't take part in sports, traveling, going to discos and having boyfriends or girlfriends.

As a parent it can be hard to acknowledge that your children have adult desires. However, at some stage you will need to discuss sex and relationships. Boys and girls need to know that epilepsy won't stop them enjoying sex. Girls should be aware that medication can affect absorption of the contraceptive Pill and may need to talk this over with the doctor. And both sexes need to know that there's absolutely no reason why they can't have a partner or children.

Above all your teenager needs your understanding. The strong need to belong, which she/he shares with all teenagers, may make it especially hard when she/he can't be like her/his friends because of problems linked to epilepsy. For instance, she/he will only be able to learn to drive if she/he has been seizure-free for a year - this can be very isolating when all your friends are learning to drive. Learning to deal with such issues - with your support - is all part of learning to be independent and manager her/his own epilepsy and to recognize that epilepsy doesn't have to rule her/his life.

Preparing for adulthood

Use the following checklist to make sure your teenager has all the information she/he needs:

  • Does she/he know what services can help and how to find them?
  • Does she/he understand why she/he needs medication and what to do if her/his seizures get out of control?
  • Does she/he have responsibility for her/his own tablets? She/he needs to carry a spare supply in case she/he doesn't get home.
  • Does she/he know how to organize her/his own medical care?

See contraception, pregnancy and self management down below. 

Education - 16 plus

Later on your child will need to decide whether to go on to further or higher education. It's a good idea to encourage her/him to aim as high as possible in order to compete in the job market when the time comes - an important factor for people with epilepsy.

Many further and higher education institutions today make a real effort to cater for their students with special needs of any kind, giving them priority for a place in a hall of residence, for example.

There's no reason why your child shouldn't enjoy every aspect of student life. She/he will need to decide who to tell about her/his epilepsy and what to tell them. Epilepsy Action believes that honesty is the best policy. Being open avoids embarrassment and enables her/him to get any help she/he needs if the occasion arises; it can also help quash some of the unhelpful myths about epilepsy.

Like all students, your child will need to decide for her/himself where she/he stands on matters such as alcohol, street drugs and how she/he conducts her/his social life. In making such choices, she/he will, of course, need to take into account how these are likely to affect her/his epilepsy.

If she/he encounters particular problems linked to epilepsy, she/he can discuss them with a personal tutor or student counselor. And, of course, Epilepsy Action is always on hand to provide information on all aspects of epilepsy.

Febrile Seizures

Febrile seizures, also known as febrile convulsions, are the immature brains response to a rapid rise in body temperature. In medical circles, the term febrile is used to define a body temperature of 38 degrees C or above.

Who do they affect?

Seizures triggered by febrile illnesses are common in children between the ages of 6 months and five years.

What causes them?

For many children the fever will be caused by a minor infection such as a sore throat or ear infection, but sometimes more serious conditions such as meningitis or encephalitis can also cause a rapid rise in temperature and trigger a febrile seizure.

Who is at risk?

Generally, children under the age of 5 years. It is estimated that between 2-4 per cent of all children under the age of 5 will experience at least one febrile seizure. Children of parents with a history of febrile seizure are four times more likely than children in general to have febrile seizures themselves. Brothers and sisters of children with febrile convulsions have an 8 per cent risk of seizures when experiencing a febrile illness. While febrile convulsions are not considered to be epilepsy, children of parents with epilepsy have a 5 per cent chance of developing febrile seizures. Boys appear more vulnerable than girls.

Are there different types?

Over 75 per cent of febrile seizures are said to be simple, that is, lasting less than 15 minutes and generalized which means that a large part, or even the whole of the brain, is involved. The remaining 25 per cent are termed complex. This means they involve only a small part of the brain or they are repeated in the same period of acute illness, or prolonged, (lasting more than about 15 or 20 minutes). This type may occasionally cause some temporary paralysis, known as Todds Paresis, afterwards.

How are febrile seizures managed?

Witnessing any convulsion can be a frightening event. They usually happen very suddenly, often when a child has seemed only slightly under the weather. As most people do not know how to cope with the initial seizure it is not uncommon for medical advice to be sought. For the first seizure this is often from paramedics, who generally take the child to hospital for assessment. Tests will be carried out to determine the cause of the rise in temperature and treatment, if any is needed, will be started. Once serious illness has been ruled out the child may be discharged and the parents given advice on temperature reducing strategies for future illnesses. This information may also be given by the family GP or Health Visitor.

As febrile convulsions are not usually considered to be epilepsy, the use of long-term anti-epileptic medication is not seen to be beneficial. However, for children who have prolonged febrile convulsions, rectal diazepam may be given. This drug is designed to terminate prolonged seizures and may be administered by parents and other care-givers. If this is the case, it is important that the prescribing doctor issues clear guidelines about how and when it should be used. General information about the administration of rectal diazepam is also available from Epilepsy Action.

Do febrile convulsions cause epilepsy?

While febrile convulsions are not considered to be epilepsy, they are associated with a 2-5 per cent chance of developing epilepsy at a later date. For complex febrile convulsions that figure rises to around 10 per cent .

It must also be considered that some young children who already have a predisposition to epileptic seizures will have seizures when ill, even with minor colds and infections. These seizures need to be differentiated from the seizures purely triggered by a high temperature. For this reason, a careful assessment is needed, as children with epilepsy are more likely to be given anti-epileptic medication than children with febrile seizures only.

Will a febrile seizure affect a childs development?

The development after a febrile seizure will closely reflect what it was before the attack. This means that a child who was not developmentally delayed before a simple febrile convulsion is unlikely to develop problems after the seizure. Occasionally, a febrile seizure is the first sign of some other illness or condition. For these children the outlook will obviously depend on the nature of that illness or condition.

Epilepsy Surgery

Surgery for epilepsy is advancing all the time, with new techniques, new equipment and an increasing number of surgeons interested in this area of epilepsy treatment. The result has been a steadily growing number of people undergoing this surgery and many of those people going on to enjoy a much better quality of life.

The success of modern surgery for epilepsy has caused a widespread interest in this type of treatment, with people seeing an operation as preferable to a lifetime on medication. However, only a small number of people with epilepsy are suitable for surgery and, even for those that are, there are no guarantees of success.

This page looks briefly at some aspects of surgery as a possible treatment for epilepsy.


The first thing a doctor has to establish when considering surgery as an option is to establish the patients suitability. Will surgery be possible and, if so, will it be beneficial?

There are a number of different types of surgery for epilepsy but the most common is the removal of a small part of the brain which is the underlying cause of the epilepsy; the focus. During this type of surgery, the more tissue that is removed  the higher the risk to the patient. Therefore, only those patients whose seizures consistently begin in one small area of the brain are suitable for surgery. Sadly, this means that for the many people with epilepsy whose condition cannot be traced to a specific area of damaged tissue, surgery is not currently an option.

Another consideration is the nature of the persons epilepsy. Surgery is always a risk so the benefits have to be significant. For this reason, doctors tend to only recommend those patients whose epilepsy has a very negative impact on their lives. These tend to be people who still have regular seizures despite trying a variety of medication. The doctor will want to know that surgery will greatly improve seizure control.

It is the quality of a persons life that will be a main factor in the decision. In some people, a relatively small number of seizures can have a dramatic impact on their lives while others can tolerate a much higher number of seizures without it significantly affecting their well being.

This decision is only the first step in what can be a long and frustrating journey.

Pre-surgery tests

Because the surgeon will be removing a part of the brain, it is vital that as much as possible is known about the patients brain and their epilepsy before surgery takes place. After many tests the patient needs to be aware that they could then be told that surgery is not possible - not an easy thing to accept after hoping for change.

While most people with epilepsy will have had a standard EEG test, they will be asked to go into hospital for a much more detailed version. The aim is to study the person having several seizures while the EEG is connected. This usually involves coming off medication and having the EEG continually recorded, sometimes for several days. In some instances, the surgeon may have to insert special electrodes onto the surface of the brain itself, although this is only done in a small number of cases. This involves using natural holes in the skull or having to create them. Throughout this type of test the patient receives a great deal of support and help from the hospital staff.

The surgeon will also want to have an up-to-date image of the patients brain and this means having an MRI scan (magnetic resonance imaging -- see below). This machine creates a picture of the brain which put together with the results from the EEG often enables the surgeon to pinpoint the exact part of the brain which is causing the epilepsy.

These tests will need to show that a single area of only one side of the brain is causing seizures. Some functions of the brain are shared by both sides of the brain, so removing one part on one side does not usually lead to a loss of that function. However, other functions are controlled only by one side of the brain, and the surgeon will need to be confident that these areas are not going to be damaged during any operation.

A new test, recently developed is DTI (diffusion tensor imaging - see below). This measures the actual movement of water in the brain, detecting areas where the flow of water is disrupted. DTI is in very early stages of development but offers an alternative investigatory method in cases where an MRI scan does not detect any abnormalities.

Other tests include PET (positron emission tomography) and SPET (single positron emission tomography), which involve injecting tiny traces of radio active substances into the body and watching which part of the brain they reach.

Other tests are undertaken, for example functions like memory are tested. This can involve the Wada Test or the Carotid Amytal Test and involves anaesthetizing half of the brain and can be quite an ordeal for the patient.

All of these tests can be worrying or distressing for the patient, but the medical teams offer a great deal of help and support throughout.

After the tests the doctors will know whether an operation is the right way forward, offering the patient the best option for the future.

The assessment of any risks will be undertaken extremely carefully and will be discussed with the patient.

The operation

The type of surgery that a patient undergoes will depend greatly on what the surgeon hopes to achieve. The following is a list of some operations:

  1. Selective amygdalo hippocampectomy - the removal of two structures in the temporal lobe which are commonly the site of seizure activity. Sometimes just the hippocampus part of the structure is removed.
  2. Temporal lobectomy - a larger part of the temporal lobe is removed. This tends to be mainly the right side as the left side of the temporal lobe controls speech.
  3. Sub-pial resection - fine cuts are made in the motor areas of the brain that do not affect the motor function but do prevent the spread of seizures.
  4. Hemispherectomy - sometimes used to treat very severe epilepsy in children with damage to one whole side of the brain. The damaged side of the brain is removed.
  5. Corpus callosotomy - again sometimes used to treat children with very severe epilepsy, this operation involves cutting the fibers that connect the two halves of the brain.
  6. Removal of a lesion such as a tumor or a cyst.

After surgery

Despite the lengthy and very difficult nature of brain surgery, most patients make a rapid recovery and are usually up and about within a couple of days. Between eight and fifteen weeks later, most people are able to return to work. Some aspects, like waiting for the nerves that supply sensation to the skull, may take some time to recover.

The results

Some people may experience seizures just after the operation due to temporary swelling. This does not mean that the operation has failed.

Depending on the persons own doctor, it may be some time before the patient can start reducing their medication. However, many patients notice a dramatic reduction in the number of seizures, many finding that their seizures appear to have stopped. They can then look at reducing or stopping their medication in consultation with their doctor.

One consequence of successful surgery that may surprise some people is the difficulty in coming to terms with life without seizures. Emotional reactions to this life change are common and can include quite severe temporary depression. Friends and family can also find it difficult to adjust to the persons new found independence. This type of reaction will depend on how long the person has had epilepsy prior to having surgery.

As with most surgical techniques, there are no guarantees. Epilepsy surgery is no exception and a small number of people will find that surgery has not helped.

Magnetic Resonance Imaging (MRI)

Magnetic Resonance Imaging is a test which can be used to establish whether there is an underlying cause for a persons epilepsy.

Explained briefly, the test involves the person lying within a large powerful circular magnet. Images are produced by changes in the magnetic field, which are then analyzed by computer. These very high quality computer pictures may highlight any lesions, scars, tumors or malformations which may be the underlying cause (focus) of the epilepsy.

The first MRI scanner became available in the UK in the early 1980s. The machines are costly and therefore tend to be located in the larger hospitals. Some of the scanners are much more powerful than others - the more powerful the machine, the better the quality of the image.

Not everyone has an underlying cause for their epilepsy, so carrying out an MRI scan may be irrelevant in many people with the condition and of little benefit to their ongoing treatment. Should anyone with epilepsy be concerned that there may be an underlying cause for their epilepsy and wish to have an MRI scan, they should discuss it initially with their GP. If necessary, the GP can arrange for a referral to a specialist in epilepsy for an assessment. MRI's are used to investigate many medical conditions other than epilepsy and the waiting lists can be very long. Specialists are only likely to refer those who, in their medical opinion, would benefit from an MRI scan.

Further research on the causes of epilepsy is vital in order to improve the treatment and quality of life for people with epilepsy. The MRI scanner is one of the tools in research development and Epilepsy Action supports the promotion of investigatory methods for epilepsy. We continue to lobby the Department of Health to improve the medical services for people with epilepsy including increased funding of research and resources.

EEG (Electroencephalogram)

EEG is short for electroencephalogram, and is the name of an important investigation carried out on most patients suspected of having epilepsy. It tells us about the activity of the brain at any given time. It may show abnormal activity of the sort most commonly found in epilepsy and may show that part of the brain is working abnormally. The EEG records the ever changing but tiny electrical signals coming from the brain which are picked up by electrodes placed on the scalp. These electrodes are either small silver discs or padded silver rods, attached to the scalp using a harmless glue, sticky tape, or held in place by a rubber cap.

Some people confuse ECT with EEG. ECT is a form of treatment in which an electric current is applied to the head, but in an EEG there is no current passing into the head, merely tiny electrical signals coming out of the head. ECT is a form of treatment used by psychiatrists. An EEG is a harmless investigation.

How it works

About 20 electrodes are placed over the scalp and connected by wires to the EEG machine. The original signals from the brain are very small (measured in millionths of a volt), and the EEG machine increases the size of these electrical signals so that they can be recorded on paper or computer, and this produces a permanent record which can be interpreted by the EEG Consultant.

During the EEG recording the patient sits or lies down on a couch, and is asked to relax and keep still because movements of the muscles or eyes can cause large signals which may obscure the signals coming from the brain. During the test, which usually lasts less than an hour from start to finish, the patient will be asked to open or close their eyes and, at one point, to breathe deeply for some minutes, because this may increase or reveal abnormalities. They will also be asked to look at a flashing light, because some people's brains are sensitive to flickering light and this may be a reason for their having had a seizure (photosensitive epilepsy ).

In most people it is usual for the flashing light to produce activity at the back of the brain at the same rate as the flash. If the flashing light produces an abnormal discharge in the EEG, the light is immediately switched off, so there is no risk of a seizure occurring.

Some patients, especially those whose seizures have occurred during sleep or just after waking, may have a longer recording during natural sleep or during sleep induced by a sleeping tablet.

The ambulatory EEG

The diagnosis of epilepsy is made from an account of the seizures given to the doctor by the patient and by someone who has actually seen a seizure. Sometimes there is doubt about the nature of the seizure, in which case it is possible to record the EEG over a period of one or more days, using a small portable EEG recorder which the patient wears on a waistbelt. Recording can thereby be made while the patient carries on normal daytime activities, and during sleep.

When an attack occurs the EEG tape recording of the event can be viewed later on a special machine in the EEG laboratory. The patient keeps an account of daily activities, so that it is possible to time all events accurately and relate them to the EEG recording made at the time. This special investigation is called ambulatory EEG monitoring, and is useful in diagnosis, in relating EEG abnormality to the patient's daily activities and also in monitoring the effect of drugs, as well as providing a complete recording of EEG activity during sleep.

Other special EEG techniques may be used in investigating patients referred for possible brain surgery in specialized units.

Interpretation of the EEG

The diagnosis of epilepsy is made from the history and not from the EEG. Further tests may help in confirming a diagnosis, may be a guide to treatment, and have sometimes provided information as to the possible cause of the epilepsy. The EEG gives information about the working of the brain, but not its structure. The CT and MRI scans give information about structure.

A normal EEG does not exclude epilepsy, and an abnormal EEG does not necessarily indicate epilepsy. Certain patterns are commonly associated with epilepsy, especially spike and wave, but since this EEG pattern is inherited it may be found in people who do not themselves have epilepsy, if they have a near relative with epilepsy.

A single EEG records brain activity for only a short period of time, and during this time there may be no abnormality. Thus, several EEGs may be needed and it may be necessary to record the EEG at times (such as before a period) when the patient is known to be liable to have seizures. Repeated EEGs may also be made to check progress in response to treatment.

In patients with generalized seizures (absences, primary tonic-clonic seizures, myoclonic jerks) EEG abnormality is usually seen on both sides of the brain. In partial (focal) epilepsy, abnormality may be seen in a local area and there may also be some abnormality of the background rhythms. Interpretation of children's EEG records is more difficult than adults, because the EEG alters with age, an adult pattern being usually found by the age of 15 years.

There is no need to stop medication before having an EEG, but one group of drugs, the benzodiazepines (Valium, Mogadon etc) affect the EEG and may prevent the appearance of bilateral abnormalities (they do not affect focal abnormalities). This group of drugs should therefore not be taken for two weeks before an EEG, but the decision about stopping drugs must only be made by a doctor.

The Ketogenic Diet

The ketogenic diet is a high fat, adequate protein, low carbohydrate diet designed to mimic many of the biochemical changes associated with prolonged starvation. First developed in the early 1900s, and successfully used for the treatment of seizures in children during the 20s and 30s, the ketogenic diet was then gradually forgotten as new anticonvulsant medications were developed. The ketogenic diet has recently been rediscovered and is achieving increasingly widespread use. Its modern day role as alternative management for children with difficult-to-control epilepsy is currently being re-defined.

The ketogenic diet is not a fad or a quack diet, but rather is an alternative medical treatment for children with difficult-to-control epilepsy. The ketogenic diet should only be used under the supervision of a physician and a dietician.


Fasting to achieve control of seizures was described in both the Bible and during the Middle Ages, but it was only during the early 1920s that scientific papers first appeared describing the beneficial effects of prolonged fasting for children whose epilepsy could not be controlled by the few medications then available. These papers claimed that starvation, drinking only water for 10 to 20 or more days, could result in control of seizures for prolonged periods of time.

During this era, when the metabolic effects of diabetes were also being studied, it was noted that the biochemical effects of fasting could be mimicked by eating a diet high in fat, but with insufficient carbohydrate to completely burn the fats. The resulting ash from the incompletely burned fat consisted of ketones in the blood. Multiple clinical papers during the 1920s and 30s reported that approximately a third of children taking this ketogenic diet had their seizures largely controlled, a third had a substantial improvement in seizure control and a third received no substantial benefit. The mechanism(s) by which these ketone bodies, principally beta hydroxybutyric acid, decrease, or even, completely control, seizures in children remain(s) unknown even today.

After the discovery of phenytoin in 1938, attention turned from the ketogenic diet to the development of new anticonvulsant drugs. As new drugs were developed, the ketogenic diet was used less frequently, and since fewer dieticians were trained in the subtleties of the diet, it was used less frequently and often less successfully.

In 1994, the successful treatment of a child with difficult-to-control seizures led to widespread media attention and a re-awakening of interest in the diet in the United States.

What is the ketogenic diet?

The ketogenic diet is a high fat, adequate protein, very low carbohydrate diet which is carefully and individually calculated for each child. Calories are restricted and depend on the age and activity of the child. If properly calculated, the child should neither gain nor lose significant weight, but should grow normally for his/her stature and the weight should remain close to the ideal weight for height. If the child is overweight, calories are limited until the ideal body weight is approached. Fluids are also restricted, although for reasons which are less clear. The diet provides approximately 90 per cent of the childs caloric requirement as fat (cream, butter, mayonnaise), one gram per kilogram of body weight as protein, and minimal carbohydrate intake. The diet must be supplemented with vitamins and calcium.

What does the diet do ?

The diet was designed to simulate many of the metabolic effects of starvation. During starvation, the body first uses its store of glucose and glycogen, then begins to burn the stored body fat. When there is not sufficient glucose available, the fats cannot be completely burned and ketone bodies (acetoacetate and beta hydroxy butyrate) are left as the residue of incompletely burned fat. The ketogenic diet provides exogenous fats (fat from outside the body) for the body to burn, but limits the available carbohydrate so that ketone bodies build up. It is the high level of these ketones which appear to suppress seizures.

So what do these children eat?

The children are only permitted to eat the prescribed, carefully calculated meals. While the portions are small, the ketosis suppresses appetite and thirst and after a short period of adjustment children are rarely hungry. While a common reaction to the concept of such a high fat diet both from physicians and others is "Yuck", well prepared ketogenic meals can be both tasty and appealing.

A typical breakfast might include a mushroom omelet with several slices of bacon and hot chocolate made with 36 per cent cream. Lunch might include celery stalks filled with peanut butter or cream cheese, lettuce with mayonnaise and a slice of tomato, and a caffeine-free diet soda. Dinner might include a weighed portion of hot dog with ketchup or mustard, lettuce and mayonnaise, a whipped cream sundae with a strawberry and a diet soda.

How effective is the diet?

While the effectives of the diet has been documented in many older studies, it remains equally effective today in children with difficult-to-control seizures, despite the introduction of many new anticonvulsants. A current study from Johns Hopkins (published in Pediatrics, December 1998) evaluated the effectiveness and tolerability of the diet in 150 consecutive children.

These children averaged more than 400 seizures per month before the diet and had been tried on an average of more than six different anticonvulsants. The outcomes are shown below:


Seizure control

at 6 months

at 12 months

Number initiating the diet: 150

over 90%

48 (31%)

41 (27%)


29 (19%)

30 (20%)

under 50%

29 (19%)

8 (5%)

Number continuing the diet


106 (71%)

83 (55%)

It should be noted that 71 per cent of those starting the diet remained on it for more than six months and more than half remained on the diet for one year. If the diet was effective in decreasing the seizures it was, in general, well tolerated, and the most frequent reason for discontinuing the diet was that it was insufficiently effective to warrant the dietary restrictions. The diet was equally effective at different ages and in children with varying seizure types.

Frequently asked questions about the diet

Who should try the diet?

The ketogenic diet is an alternative therapy for children who have difficult-to-control epilepsy. We have defined difficult-to-control epilepsy as having more than two seizures per week despite the appropriate use of more than two anticonvulsant medications. The diet has not been adequately studied in adults or in children under one year of age. Parents who think that the diet may be appropriate for their child should consult with their physician. The diet should never be attempted without medical supervision.

Will my child be able to stop taking anticonvulsant medications?

Our goal is to make all children on the diet both seizure-free and medication-free. Unfortunately this is often not possible. While some patients are able to gradually discontinue medications while on the diet, many do not become seizure-free, and many require some continued medication.

Can my child have any other medications while on the diet? What about antibiotics?

Many childrens medications are compounded in sugary syrups. We teach parents to be vigilant in reading labels of all medications, and to avoid all preparations which contain carbohydrates. Carbohydrates include all substances which end in -ol or -ose. The diet is often very sensitive to even small amounts of these carbohydrates. For example, we have found that suntan lotion, which contains sorbitol as its base (note the ...ol) can be absorbed through the skin and lower the ketone level resulting in seizures.

What does the child do on birthdays? On holidays? For snacks at school?

Parents become quite creative. Birthday cakes can be cheese cake. At Halloween one family allowed the child to trick-or-treat and then purchased the candy from the child who used the money to buy a toy. This can also work well for parties and for school. Children as young as four have been taught to say, "No thank you, Im on a magic diet".

Does this high fat diet cause arteriosclerosis? (Hardening of the arteries)

Studies in progress suggest that only a small percentage of children on the diet have a substantial increase in their cholesterol and triglycerides. The long term effects of the diet on heart disease and stroke are unknown, but few children remain on the diet long enough for this to become a problem.

Dont children gain weight on the diet?

No, they should not gain significant weight. The number of calories is carefully tailored to the needs of the child. If the child is gaining too much weight, then we decrease calories. Children appear to grow normally and should only gain weight in proportion to the increase in height.

How long must children remain on the diet?

Children whose seizures are completely controlled on this diet often discontinue it after being seizure-free for two years. Others continue the diet as long as they find it useful. If the diet is stopped, or the ratio decreased, and the seizures return, then the diet can either be re-instituted or the person can re-start medications.

How does the diet work?

It appears that the high fat intake combined with carbohydrate and caloric restriction result in ketosis. The current standard of care requires that the urine remains 4+ (160-180mml) for ketones. Recent evidence suggests that the serum ketone levels may be far more critical than those in the urine. While 4+ urine may be necessary for seizure control it may be insufficient for optimum control and calories may need to be further restricted or the ratio of fat to protein and carbohydrate may need to be increased. Studies of serum levels of ketones and their correlation with seizure control are in progress.

How the ketone bodies suppress seizures is unknown, but currently an area of investigations. However, suppression of ketosis by the administration of carbohydrates may quickly result in a recurrence of seizures.

Future areas of research

The success of the diet in decreasing, and sometimes controlling, difficult-to-control seizures has re-awakened interest in how the diet works, and has started researchers looking at animal models by which it can be studied. With animal models it will be possible to study how the ketone bodies modify seizure thresholds, and the mechanisms by which the diet controls seizures. Perhaps eventually, when we understand the mechanisms, we can develop a medication which will simulate the effects of the diet.

Clinical research may also alter how the diet is administered. When we are able to monitor blood levels of the ketones rather than just the urine, we may be able to better adjust the diet to achieve maximal ketosis. We may understand that higher levels of ketosis give better seizure control. We may learn how to modify the diet so that we decrease the incidence of kidney stones. We may also learn more about the effects of the diet on serum lipids, and about the long term effects of the diet. Hopefully all of these efforts over the coming years will result in better seizure control for those children with difficult-to-control epilepsy.

The full results of the Johns Hopkins study can be found in the December 1998 issue of Pediatrics.

No attempt should be made to change a childs diet without medical supervision.

Epilepsy - A Teacher's Guide

Epilepsy is the second most common neurological disorder after migraine. 75% of people with epilepsy have their first seizure before the age of 20.

It is likely that most teachers, during their careers, will have several children with epilepsy in their classes. The role of the teacher is crucial. If epilepsy is dealt with calmly and reassuringly, the child will benefit and their classmates will develop a healthy and accepting attitude towards epilepsy.

What epilepsy is and the different types of seizure are covered elsewhere on this site. It must always be remembered that there are some 40 different types of seizure and being able to recognize the basic types may be vital in helping a child fulfill his or her potential and be given appropriate treatment. For example, absence seizures can look as if a child is simply day-dreaming when in reality they are having a seizure, missing out on learning and possibly becoming the victim of mockery from their classmates.

One type of seizure which teachers may help detect first are sub-clinical seizures, which cannot be seen. However, they may be indicated if a child's attainment drops significantly or the standard of work is unaccountably below expectation.

Where seizures are suspected, the matter should immediately be brought to the attention of the child's parents.

The teacher's role

The teacher can be a great help in the diagnosis of the type of epilepsy a child may have, through an accurate written description of the seizures. Communication between teacher, parents and doctor cannot be stressed strongly enough. This aids not only diagnosis but also prevents the child becoming inhibited or withdrawn or experiencing unnecessary learning problems.

Classroom first aid

In the case of absence seizures, understanding and a matter-of-fact approach are really all that are needed. It helps to be aware of the possibility of mockery when the seizure has passed and the need for the child to catch up on any information missed during the seizure.

If a child has a tonic-clonic seizure, classmates will look to the teacher for guidance. Calmly reassure the other children and ensure that the child having the seizure cannot harm themselves. Only move the child if there is danger of sharp or hot objects or electrical appliances. Then follow these simple guidelines:

  1. Cushion the head with something soft e.g. a folded jacket, but do not try to restrain movements. 
  2. Do not put anything at all between the teeth or in the mouth. 
  3. Do not give anything to drink until the seizure is over. 
  4. Loosen tight clothing around the neck but remember to do this with care as it may frighten a semi-conscious child. 
  5. Do not call for an ambulance or doctor unless the seizure lasts more than a few minutes (status epilepticus)
  6.  As soon as possible, turn the child onto their side in the semi-prone (recovery/unconscious) position, to aid breathing. Wipe away saliva from around the mouth. 
  7. Be reassuring and supportive during the confused period which often follows this type of seizure. The child may need to rest quietly or sleep for a while, preferably somewhere private. 
  8. If there has been incontinence cover the child with a blanket to prevent embarrassment.

Arrange to keep spare clothes at school if this is a regular occurrence. It is not usually necessary to send a child home after a seizure, but each child is different. If the teacher feels that the period of disorientation is prolonged, it might be wise to contact the parents. Ideally, a decision will be taken in consultation with the parents when the child's condition is first discussed and a procedure established.

Emergency care

Although the average convulsive seizure is not a medical emergency there are two exceptions of which a teacher should be aware.

  1. When a seizure shows no sign of stopping after a few minutes OR 
  2. A series of seizures take place without the child properly regaining consciousness in between.

If this happens it is called Status Epilepticus - one of the rare medical emergencies associated with epilepsy which requires immediate medical attention. A five minute seizure does not itself constitute an episode of status epilepticus and it may stop naturally without treatment. However, emergency precautions after the five minute mark has passed will ensure that prompt attention will be available if a seizure does continue. Such precautions are especially important if the child's medical history shows a previous episode of status epilepticus.

Emergency care IS appropriate if a child who is not known to have epilepsy experiences a convulsive seizure - even if the seizure stops naturally after a few minutes. In such a case, the condition may be caused by some underlying infection or metabolic problem.

Both medical staff and parents need to be informed of any events of this nature.


Fortunately, anti-epileptic medication gives most children the chance to lead normal lives. There are many different drugs but they all take the form of tablets, capsules or, in the case of small children, syrup. This is usually only taken night and morning, avoiding the inconvenience of taking pills during school hours. Whatever the prescription, it is essential that the child takes the correct dosage at the right time. If medication has to be administered during the day, the support of the school and teacher are most important.

If a child starts having an increased number of seizures or appears drowsy, over-active or inattentive, it may be that the medication needs adjusting. A teacher recognising such behavior is advised to discuss the matter with the parents so that they, in turn, can discuss it with the child's doctor.

Teachers, nurses, special education teachers and support personnel also need to be aware of the learning disorders sometimes associated with epilepsy. Only then can they work effectively with these children and enable them to fulfill their potential.

School activities

Placing restrictions on children with epilepsy will only serve to make them feel and appear different. With adequate supervision no activity need be barred, although it is unwise to allow a child to climb ropes and wall bars if he has a history of frequent, unpredictable seizures.

Swimming is to be encouraged and should cause no problems provided there is a qualified and informed life-guard in, or adjacent to, the water to affect an immediate rescue should it be necessary. Many schools adopt the 'buddy' system for all children, which means that special attention need not be drawn to the child with epilepsy.


With the right approach, qualifications and skills, epilepsy is not a major barrier to employment. Teachers offering careers guidance to young people with epilepsy need to be familiar not only with their academic and social abilities, but also with the type and frequency of their seizures.

Essential information

Epilepsy Action recommends that teachers find out as much as possible about a child's epilepsy from the parents. Some questions to ask could include:

  • what type of seizures a child has
  • how long they last and what they look like
  • what first aid is appropriate and how long a rest the child may need
  • any particular conditions or events that might trigger a seizure
  • how often medication is taken and what side-effects may be experienced
  • whether the child has a warning (aura) before the seizure
  • what activities, if any, the parents or doctor require limiting
  • whether the child has any other medical conditions.

Finally, it can be helpful to know how much understanding the child themselves has of their condition and its treatment.





Epilepsy and Women

Epilepsy and your hormones

Some women with epilepsy do notice a link between their menstrual cycle and their tendency to have seizures. For example, your epilepsy may have started when you first began to have periods and you may have noticed that seizures happen more often before or during a period, or at ovulation (egg release), about halfway through your menstrual cycle.

If you suspect that your seizures are associated with your menstrual cycle make an appointment to talk to your doctor, as there are treatments which can help.

Epilepsy and the Menstrual Cycle

Some women find that their seizures follow a pattern which coincides with their pattern of menstruation. When this is significant the term "catamenial epilepsy" applies.

The type of correlation can be one of several:

  • The number of seizures increases during the few days before and the couple of days immediately before and after menstruation.
  • Seizures occur mainly in the middle of the cycle, before ovulation.
  • Seizures occur mainly between the middle of the cycle and the first couple of days of the next.

Recent research points to the fluctuations in endocrine secretion through the menstrual cycle as being a significant cause of catamenial epilepsy. This occurs alongside variations in the plasma levels of anti-epileptic medication. These generally decrease several days before menstruation.

Modern treatment for catamenial epilepsy usually includes the drug clobazam. This drug is taken at specific times during the cycle, unlike usual anti-epileptic medication which has to be taken continuously.

Women who think their menstrual cycle may be affecting their seizures should speak to their doctor. It may be useful to keep a diary in order to establish any patterns.  

Epilepsy and contraception

Like any other woman you can choose from a wide range of methods of contraception. Your precise choice will depend on your individual needs but there are a few points you should bear in mind with regard to your epilepsy:

  • Some anti-epileptic drugs speed up the way the liver breaks down the Pill, which may reduce its effectiveness. If you are especially keen not to get pregnant you may be advised to use a barrier method such as a condom or the cap as well as the Pill.

Epilepsy drugs which do not impair contraceptive efficacy:
lamotrigine, vigabatrin, gabapentin, tiagabine, sodium valproate, clobazam, clonazepam

Epilepsy drugs which do impair contraceptive efficacy:
phenytoin, carbamazepine, oxcarbazepine, phenobarbitone, primidone, topirimate, ethosuximide (possibly)

  • If you choose to use an IUD (intra uterine device or "coil") there is a small risk that you may have a reflex seizure (one that is triggered by something specific) when it is inserted. Make sure that the person fitting the device knows that you have epilepsy.

Mirena Intrauterine Systems (IUS)
The progesterone used in this devise is delivered to such a local (bodily) area that it is unlikely to be a problem for women with epilepsy. It should not be affected by enzyme-inducing anti-epileptic medication.

Progestogen Injections
Depo-Provera injections are contraceptive injections, which may be considered by women with epilepsy. However, as with the Pill, if you are taking enzyme-inducing drugs as described previously, it is suggested that the injection be repeated every ten weeks as opposed to the usual 12 weeks.

Persona and Rhythm methods
Persona is a recently introduced method of contraception that relies on testing urine for hormonal changes relating to ovulation. As the hormone levels in urine may be affected by both epilepsy itself and by anti-epileptic drugs, this is not a method of contraception that is recommended for women with epilepsy. Similarly, as the rhythm method depends on hormonal changes, this is not a reliable method of birth control for women with epilepsy.

Morning After Pill
People taking enzyme-inducing antiepileptic medications will need a higher dose of Morning After Pill than people who do not take enzyme-inducing drugs. Women with epilepsy need to tell their GP or pharmacist (if over-the-counter) about their antiepileptic drugs. Otherwise, there is no evidence to suggest that these drugs should not be used by women with epilepsy.

Epilepsy and fertility

One in six couples in the general population experience difficulty in conceiving. Very rarely epilepsy and, possibly, some of the drugs used to treat it may contribute to such difficulty. Fortunately epilepsy and anti-epileptic drugs are no bar to receiving fertility treatment. A few women may experience a small increase in the number of seizures when taking certain hormone-based fertility drugs.

Starting a family

If you are thinking of starting a family the main question to consider is whether - apart from your epilepsy - you are healthy. If your epilepsy has been recently diagnosed or your drugs have been changed it is worth discussing with the doctor whether you should wait until your body has adjusted to the drugs before trying for a baby. Both of these issues should be covered by pre-conception counseling.

Planning a baby

It is essential to make an appointment with your doctor before you get pregnant for pre-conception counseling - to discuss your health and lifestyle and how your epilepsy may be managed during pregnancy. The aim is to achieve the best control of your seizures at the same time as keeping any risk to your baby as low as possible.

You and your doctor need to discuss the following:

Should you continue taking drugs for your epilepsy during pregnancy? If so which drug and what dosage? Whenever possible the doctor should try to prescribe the lowest dose possible of one anti-epileptic drug. Some women can withdraw completely, but others will have to continue with drugs. Any change must be overseen by the doctor.

What sort of diet, including vitamin supplements, will best meet your needs? A daily intake of folic acid, a vitamin found in leafy green vegetables, which is now known to reduce the risk of conditions like spina bifida is usually recommended. The dose is usually higher for women with epilepsy than for those without. Always discuss this type of supplement with your doctor or midwife before taking it.

A Healthy Pregnancy

See Epilepsy and Pregnancy: The Facts down below.

It used to be thought that pregnancy and birth posed special hazards for women with epilepsy. It is now recognized that in most cases they are just as safe for most women with epilepsy as they are for other women. Some people may voice misgivings about epilepsy and your pregnancy. Try to find out if epilepsy really is the reason for their worries and if it is, encourage the person to contact Epilepsy Action.

How might epilepsy affect my pregnancy?

Some women have no seizures at all during pregnancy, while a few may find that they increase, possibly as a result of hormonal changes or changes in medication. Some types of seizure during pregnancy may increase the potential for harm to your baby, and you will need to discuss this with the doctor. You obviously need to steer clear of situations which could put you at risk if you do have a seizure.

Also see the section on Safety down below.

Medical care during pregnancy

Ideally a team of three doctors - your GP, your epilepsy specialist and the obstetrician (a doctor who specializes in pregnancy and birth) - should be involved with your pregnancy. They will need to get together as early as possible to discuss your condition, your medication and any changes that may be made during pregnancy.

Will my baby be alright?

All mothers-to-be worry about the health and safety of their babies. Most - 97 per cent in the UK - have a perfectly healthy, happy pregnancy, a normal delivery and give birth to a bouncing baby.

The chances of giving birth to a healthy baby are still over 90 per cent if you have epilepsy. The difference is mainly a result of possible problems caused by anti-epileptic drugs. This may seem worrying, however its important to bear in mind that many of the problems encountered are minor ones such as small nails. Other more serious problems such as spina bifida or heart defects may occur in rare instances.

It is important to keep a sense of perspective when thinking about the chances of problems occurring. True, the likelihood is slightly higher than if you didnt have epilepsy. However, it is still low and most women with epilepsy conceive, carry and give birth to a healthy baby.

If the doctors do suspect a problem with your baby, ultrasound scans and other methods of prenatal diagnosis techniques can help identify them before birth.

Coping with labor

Providing you and your baby are well your epilepsy should not prevent you having a normal labor and delivery. You will generally be advised to have your baby in hospital where the doctors and midwife will do all they can to ensure that you are well looked after and your baby has a safe and happy entry into the world. A couple of points to bear in mind are:

  • Make sure that you take your medication during labor. Ask your companion or a nurse to keep a check on this for you, as your concentration will be elsewhere.
  • Remind the doctor/midwife and other staff on the ward that you have epilepsy. The set times at which you have to take your medication may differ from the normal ward rounds.

Epilepsy and breast-feeding

There's no reason why epilepsy should prevent you from breast-feeding. Any anti-epileptic drug you take will, of course, be present in small quantities in your milk, but this is not harmful (the baby will have been subjected to the drug already, while in the womb). Breast-feeding can sometimes take a little while to establish as your medication may cause your baby to be somewhat drowsy in the early days. If this continues see the doctor. Otherwise, have patience and persevere and your epilepsy should not cause any further difficulty.

The only other problem that may be linked to breast-feeding is that your nights will regularly be broken. If lack of sleep tends to bring on a seizure you may want to arrange for someone else to give some night feeds by bottle. Alternatively a friend or family member may be able to give you a daytime break to allow you to catch up on your sleep.

Caring for your baby

Its reassuring to know that many people with epilepsy have babies and children and cope very well indeed. These few simple guidelines will help you feel more confident and reduce the risk of accidents to your baby:

  • Feed and change the baby on the floor leaning against a wall to avoid falling on to the child if you have a seizure.
  • Surround yourself with cushions and beanbags when you are holding your baby.
  • Make sure someone is around when you bath your baby - hopefully there will be no shortage of willing volunteers! On other occasions you can simply wash him or her with a flannel or a sponge.
  • Try to make sure you get enough rest and sleep.
  • Dont be afraid to accept help especially while your baby is small.

Could my child inherit epilepsy?

Epilepsy itself is only inherited in a few very rare instances. However, people with a low seizure threshold may be more susceptible to epilepsy and this threshold may be passed down in the genes. Even if your child does inherit a low seizure threshold however, it is by no means certain that s/he will develop epilepsy.

See Inheritance down below.

The menopause and HRT

The menopause is a time of hormonal upheaval and physical change. Some women develop epilepsy at this time, while others see the end of a history of seizures.

The big question most women have is whether HRT - hormone replacement therapy - could help. HRT can help with short term symptoms of the menopause such as hot flushes, sweats and dry vagina. It also helps protect against heart disease and the brittle bone disease osteoporosis. This is especially important as some anti-epilepsy drugs affect the bodys calcium balance and therefore increase the risk of osteoporosis.

However, HRT is not suitable for every woman and some people consider it a controversial treatment with risks of its own. It is well worth finding out as much as you can about the various forms of HRT in order to help you make the right decision for you.

Some HRT preparations are not recommended for women on anti-epileptic drugs and, as with the Pill, a higher dose may be needed. You may have to persevere until you find a type that suits you.

The Last Word

As with many other aspects of life with epilepsy you may find that your GP or local health clinic is not able to answer all your questions. If possible ask them to arrange for you to see a specialist or, at the very least, to find out more on your behalf.

Epilepsy and Pregnancy
The Facts

If you have epilepsy and are thinking about becoming pregnant the answers to the questions listed below will give you the basic facts that you need to make your decisions, in consultation with your medical advisor, about preparing yourself for pregnancy, becoming pregnant, going through labor and delivery and the early days after childbirth. The facts presented here must be discussed with your medical advisor, because, obviously, they have to be interpreted in the light of your own particular circumstances: information and knowledge in this area is changing rapidly. These are guidelines available for your medical advisor if he/she wants them. Some clinics, like ours, run a specific pre-conception counseling service which your doctor might feel would be of benefit to you.

It is important to remember:

Most women with epilepsy should have no problems with pregnancy. However, all pregnancies in women with epilepsy should be planned, if at all possible, since most potential complications are avoidable: women with epilepsy should have talked through these issues with an appropriate health professional. There is evidence from Epilepsy Action that many women, however, do not get the advice that they need.

Q1 What is preconception counseling for women with epilepsy?

The definition varies from merely giving advice about risks, to complete re-assessment of the womans epilepsy, withdrawing and/or modifying drug treatment where possible and using folic acid before conception (so called pro-active preconception counseling). Audited experience of proactive counseling in our own clinic suggests that it may be advantageous for many women with epilepsy and we continue to practice it, but some doctors believe it to be unnecessary and that an explanation of the potential risks is all that is needed.

Reassessment of the epilepsy may show that the woman does not have epilepsy at all, may reveal a cause for the epilepsy that needs treatment before she becomes pregnant (like a blood vessel abnormality in the brain) and will give some guide as to whether she might be able to withdraw from medication before becoming pregnant. For some women investigation may show that surgery would be a treatment option which might be better carried out before she gets pregnant. At the same time a full medical screen can be done (in case other illnesses are present) advice given about preconception lifestyle and a plan developed for slow withdrawal or modification of medication if needed and folic acid 5 mg daily started: genetic advice can also be given where necessary.

If preconception counseling involves a withdrawal of medication or substitution of other drugs, then it is a slow process and the woman must use reliable contraception until it is achieved as becoming pregnant during a complicated drug change is not a good idea (because taking more than one drug increases the risk). In some women preconception assessment may involve fertility assessment.

Q2 If I have epilepsy, am I more likely to have problems conceiving?

Women with epilepsy are slightly less fertile than women who do not have epilepsy - but if a woman with epilepsy does have a fertility problem related to her epilepsy, then it is treatable. Women with epilepsy who need fertility treatment (often for reasons unconnected with their epilepsy) should make sure that they have had any necessary drug withdrawal or change before they start fertility treatment. If given drugs to stimulate egg production women with epilepsy should remember that there may be a brief increase in seizure frequency during this time (or the return of previously controlled seizures). This tendency usually settles very quickly.

Q3 Why does having epilepsy sometimes make conception more difficult?

Women with epilepsy are more likely to have irregular periods than women who do not have epilepsy: irregular periods render women slightly less fertile. This is partly due to epilepsy itself which can upset the delicate balance of hormone release in the brain that controls the monthly cycle. It may also be partly due to the effect of anti-epileptic medication on the way the ovaries work.

Many women with epilepsy have polycystic ovaries (or polyfollicular ovaries) - when egg carrying cysts (or follicles) in the ovary fail to rupture at the right time of the month (thus releasing the egg). Some, but not all, women with this condition (itself so frequent that it can hardly be thought of as abnormal) develop hormonal changes as well that can lead to irregular periods and relative (but treatable) infertility. This condition -polycystic ovary syndrome - may, in itself, be commoner in women with epilepsy and there is some evidence that one particular anti-epileptic drug (sodium valproate) may also induce the syndrome: this effect (if it is true - not all experts thinks so) is, from our own experience reversible: indeed we warn women coming off sodium valproate that they may get pregnant rather quickly when they have done so and should use contraception if they do not then wish to become immediately pregnant. Our present policy is to screen all adolescent girls with epilepsy and women seeking preconception counseling for the presence of polycystic ovaries and the hormonal changes and advise accordingly.

Epilepsy and Safety

Many people with epilepsy and their families may have concerns about safety. Included on this page are some of the aspects of everyday life, both at home and in a wider setting, where precautions may need to be taken to minimize risks. These are suggestions only, and it is important to remember that they will not be relevant or necessary for everybody with epilepsy. For example, a person who is seizure free or perhaps only has sleep seizures, may not need to take any further precautions than people in general, whereas someone who has fairly frequent seizures without warning may need to take extra care. Each case should be considered individually with the aim being to achieve as full and active a life as possible.


Whenever possible, a shower rather than a bath is considered to be the safest option for people with epilepsy. Neither a bath or shower is entirely risk free and in either case there are precautions which can be taken to minimize risks.

Where a shower is used, it should ideally be based in a free-standing cubicle, preferably with a flat floor rather than a shower tray in which water can be trapped. Taking a shower while sitting (whenever possible) will minimize risks of injury. Consideration should be given to bathroom fittings which need to be as flush to the wall as possible. Where fittings do protrude, or where a shower is being used over a bath, fittings could be lagged with protective material to prevent injury (even a towel can be effective). It is important that the temperature control works well (with a safety 'cut-off') in order to avoid scalding.

Where a bath rather than a shower is used, it is recommended that the depth of the water is kept to just a few inches and that the taps be turned off before getting into the bath. Some people prefer to sit in the bath (without putting the plug in the plug hole), and have a wash using a sponge/flannel.

It is advisable not to bathe when alone and to let someone else in the home know that a bath or shower is being taken, although the presence of people in the same house who are not directly supervising the person in the bathroom does not protect against drowning. It also recommended that the bathroom door should not be locked and, wherever possible, that the door should be hinged outwards. It is important however, to take into account the personal wishes and need for privacy of the individual concerned.


Both gas and electric cookers can be hazardous in the event of a seizure and a cooker guard* can help to minimize danger. Saucepan handles should be turned away from the edge so the saucepan cannot easily be knocked over. Taking the plates or serving dishes to the cooker rather than carrying hot pans can minimize the risks of scalding. A microwave oven may be a safer alternative to gas and electric cookers. A toaster can avoid the danger of a grill being left on. Kettle tippers and teapot pourers are available to avoid carrying containers of hot liquid about. It is possible to obtain a number of safety aids from relevant shops - such as DIY stores - which although primarily intended for child safety can be useful for the whole family.

Electric flexes

Avoid trailing flexes, particularly those attached to appliances which could cause a fire or burns if pulled over.


Avoid free-standing heaters which could be knocked over. Open fires should be protected with substantial fixed fire guards. Radiator guards are an added precaution.


Avoid very hard surfaces which may cause injury in a seizure. Carpets with a high wool content are less likely to cause friction burns than those with a high synthetic content. Sealed cork tiles or vinyl cushion floor can be used in wet areas (such as bathrooms and kitchens).

Stairs & lifts

For those who have frequent and unpredictable seizures stairs can be a major hazard. It is difficult to avoid using the stairs although with planning it can perhaps be kept to a minimum number of occasions.

Some people with epilepsy also have mobility difficulties and need the assistance of a stair lift or vertical lift. Neither of these options is risk-free. Where a vertical lift is used it should, if possible, have a padded interior as the confined space could be hazardous in the event of a seizure. Safety straps used in a stair lift should be kept to simple lap straps as a full harness could cause injury during a seizure.

There is no perfect solution where stairs/lifts are concerned and to a certain extent it is a matter of arriving at a compromise between the different needs of the person and what is practicable in their home.


Accidents caused by broken glass can be avoided by the use of safety glass or by covering ordinary glass with safety film. Glass panels in doors can be replaced with perspex or wooden ones. Contact the local glass merchant or DIY store.

Sharp edges

It may be appropriate to cover protruding sharp edges. Possible 'padding' materials are pieces of foam rubber either in sheets, or tubes as used for lagging pipes. Toweling can be a useful stand-by.

Protective headgear

For those who have frequent, unpredictable seizures with the possibility of injury to the head and/or face, protective helmets are available. In the UK the hospital consultant can prescribe such equipment where s/he feels it is appropriate.


There are a number of different types of alarm available and before investing in any of them it should be considered whether they are necessary and effective for the individual concerned:

  • Personal alarms - suitable for alerting another person within close proximity
  • Telephone alarms which can be operated by remote control
  • Fall alarms sensitive to a person falling to the ground
  • Bed alarms which can pick up unusual sound or movement during sleep

An alarm may not be necessary and in some instances may not be helpful. For example, there must be somebody else available to hear a fall alarm and generally a person needs to have a warning of a seizure in order for a telephone alarm to be useful.


For people who have seizures during sleep a bed placed against a wall or with protective cushions around it can help to minimize injury which could be caused by falling out of bed. Sharp objects such as bedside tables/cabinets should, whenever possible be kept away from the bed.

Carrying identification

Many people with epilepsy feel reassured by carrying some form of identification with them. Cards can be carried in a pocket or wallet/handbag or special jeweler is available.


Some people have epilepsy as a result of damage to the brain through, for example, injury, infection, birth trauma, stroke (symptomatic epilepsy). Others, however, have no known or identifiable cause, but have epilepsy as a result of being born with a low epileptic seizure threshold (idiopathic epilepsy). Everyone has a seizure threshold: having a low seizure threshold means that a person has a lower resistance to seizures than people in general. The factors influencing the probability of a person developing epilepsy are the level of the seizure threshold and the severity of any damage to the brain.

There are three different ways in which epilepsy can be inherited:

  1. The low epileptic seizure threshold is passed to the next generation through the genes;
  2. There are a number of medical conditions where the incidence of epilepsy is higher than in the general population;
  3. There are certain types of epilepsy where a family history has been identified. These include:
    • Benign Rolandic Epilepsy (see below)
    • Some partial epilepsies (see below)
    • Infantile convulsions (see below)
    • Juvenile myoclonic epilepsy (see below)
    • Temporal lob epilepsy (see below)
  4. As the subject of whether epilepsy can be inherited is so complex, anyone with concerns should seek advice from their GP or consultant who may be able to arrange a referral to a genetic counselor. The genetic counselor will collate and consider information such as who in the family has epilepsy or a history of the condition, the seizure type, age of onset, EEG results, and any other medical conditions there may be in the family.

What is the chance that my offspring will have seizures?
For each class of seizure disorder (unprovoked seizures, febrile convulsions, and any seizure), risk is substantially higher in offspring of affected mothers than in those of affected fathers. Risk is either the same or slightly higher in offspring of affected fathers than in the general population...

Why is the risk higher in offspring of affected mothers?
The answer to this question is unknown. The higher seizure risk in offspring of affected mothers is not consistent with any conventional genetic model and it does not appear to be caused by seizure occurrence during pregnancy, use of AEDs [anti-epileptic drugs] during pregnancy, or complications of pregnancy in women with epilepsy.

Does the risk in offspring depend on the type of epilepsy in the parent?
Certain clinical features of epilepsy do appear to be associated with differences in the risk for seizures in offspring. Risk for unprovoked seizures is higher in offspring of parents with onset of epilepsy before 20 years of age than in offspring of those with later ages of onset (9 per cent vs. 3 per cent). Risk is also higher in offspring of parents with a history of absence seizures (9 per cent) than in offspring of those with other generalized (3 per cent) or partial (5 per cent) seizures. Finally, higher risks have been reported in offspring of a proband with idiopathic epilepsy, or of a proband with an effected parent or sibling.

Despite the increased risk for seizures in offspring of parents with epilepsy, patients may be reassured to find that the probability that a child will be unaffected is much higher than the probability that the child will have seizures. Even for patients in the highest risk categories (e.g., women with epilepsy, individuals with absence seizures, or individuals with early age of onset), the probability that an offspring will be completely seizure-free is greater than 80 per cent, the probability that the child will escape having epilepsy is greater than 90 per cent.

Benign Rolandic Epilepsy

Benign Rolandic Epilepsy is an epilepsy syndrome. It is called 'benign' because it has a good outcome - nearly all children with it will outgrow it during puberty - and 'rolandic' because it is in the part of the brain called the rolandic area that the seizures begin. It is classified as a partial seizure because only this one part of the brain is involved.

Benign Rolandic Epilepsy is one of the most common types of epilepsy in children.  It affects almost one quarter of all the children who have epilepsy.  It affects boys and girls equally.  It usually starts between the ages of 3 and 12 years, and often stops around puberty (aged 14-18 years).  Children who have this type of epilepsy are usually well otherwise and do not have overall learning difficulties, although some have specific difficulties with reading and language. 


Seizures often start as the child is waking up in the morning. There is a feeling of tingling (like pins and needles) on one side of the mouth involving the tongue, lips, gum and inner side of the cheek.  The seizure may also involve the throat which may cause speech to be unclear and therefore difficult to understand.  The child may make strange throaty or gurgling noises and it is often this which alerts parents that something may be wrong.  The child often knows what they want to say but cannot speak properly.

The seizure may also cause twitching movements (called clonic movements) or a stiffness (called a tonic movement) of one side of the face.  These movements may then spread to the arm and/or the leg, usually on the same side as the movements in the face.  Occasionally, both sides of the body are affected.  When this happens, the child loses consciousness, becomes stiff and has regular, jerking movements of the arms and legs.  The child may also be incontinent.  This is called a tonic-clonic seizure. A tonic-clonic seizure is a generalized seizure.  After this seizure, the child will be sleepy and some children may sleep for a few hours.


A full and accurate history of the seizure(s) and an EEG test (electroencephalogram). The EEG records the electrical activity in the brain. In Benign Rolandic Epilepsy, the EEG will pick up epileptic activity in the rolandic area of the brain


Treatment with anti-epileptic drugs is not always considered necessary since it is known that the seizures will tend to disappear when the child gets to puberty.  In addition, many children will only have one or two seizures and therefore will not need any treatment.  However, most parents and most doctors feel reassured by treatment.  Either carbamazepine in a tablet or syrup form or sodium valproate are almost certain to be effective in controlling seizures.

The medicine is taken, every day, usually for 2 years.


The fact that this type of epilepsy is called benign means that it has a very good outcome.  Nearly all children with this type of epilepsy will outgrow the tendency to have seizures during puberty.

Children who have benign rolandic epilepsy do not usually have learning difficulties.  Some may have some problems with reading, but most cope well with school work.

Infantile Spasms

Infantile spasms are a type of epilepsy with a characteristic age of onset, pattern of seizures and EEG - that is to say, it is an electroclinical epileptic syndrome. They can also be called salaam spasms, because the appearance of the seizures is like a bowing movement, or Wests Syndrome after Dr West who first described the condition in his own 4 month old son in 1841. This type of epilepsy occurs in about 1 in 2-4,000 children.


In 90 per cent of children with the condition, infantile spasms occur in the first year of life, typically between 3 - 6 months old. Often, to begin with, the attacks are brief, infrequent and not typical, so it is quite common for the diagnosis to be made late. Frequently, because of the pattern of attacks and the cry that a child gives during or after an attack, they are initially thought to be colic.

The typical pattern is of a sudden flexion (bending forward) in a tonic (stiffening) fashion of the body, arms and legs. Sometimes, however, the episodes are extensor (arching). Usually, they are symmetrical but sometimes one side is affected more than the other.

Typically, each episode lasts a few seconds; there is then a pause for a few seconds followed by a further spasm. While single spasms may occur, infantile spasms usually occur in runs of several in a row. It is common for babies who have infantile spasms to become irritable and for their development to slow up or even to go backwards until the spasms are controlled.


The diagnosis of infantile spasms is made by a combination of the typical features with a typical EEG which shows a very disorganized pattern termed hypsarrhythmia. Infantile spasms, like many other electroclinical syndromes, have lots of different causes though a particular cause cannot be identified in each case.

Most children with infantile spasms will need a number of tests (EEG, brain scans, blood tests, urine tests and, sometimes, spinal fluid tests) in order to try to identify the underlying cause.


In some children, infantile spasms respond easily to treatment, whereas in others they remain very resistant. Many children unfortunately go on to have other kinds of seizure in later childhood and many have learning difficulties. The prognosis for infantile spasms in both these respects is largely dependent on the underlying cause of the condition.


The main treatments used are steroids, sodium valproate, nitrazepam, clonazepam and vigabatrin. In the first instance, steroids are most commonly used.

Juvenile Myoclonic Epilepsy
also known as Janz Syndrome

Juvenile Myoclonic Epilepsy can develop between 8 and 26 years of age, but occurs mainly between 12 and 16.


It is characterized by myoclonic episodes, or jerking motions, which mainly affect the upper limbs. Consciousness is not lost.

The myoclonic episodes tend to occur in runs on awakening, or following sleep deprivation, and may not be recognized. In 90 per cent of patients generalized seizures are associated with, and may follow, the myoclonic jerks. In 25 per cent of patients typical absence seizures (of adolescence) may also occur.

Clinical attacks of myoclonus are associated with polyspike-wave discharges on a normal EEG background. The gene for this syndrome is believed to lie on chromosome 6.

Photosensitivity is common in those with Juvenile Myoclonic Epilepsy.


Most patients respond very well to the drug sodium valproate, but relapses occur if the drug is withdrawn.

Simple Partial Seizures

The difference between complex partial and simple partial seizures is that, during simple partial seizures, the person remains conscious and fully aware. However this does not mean that the person experiencing this type of seizure is able to stop or control the symptoms.

The electrical activity which causes a simple partial seizure is confined to one small part of the brain. What a person experiences during one of these seizures depends on which part of the brain is affected.

  • The temporal lobe (see below)
  • The frontal lobe (see below)
  • The parietal lobe (see below)
  • The occipital lobe (see below)
  • What to do (see below) 
  • Secondary generalization (see below)

The temporal lobe

If a simple seizure originates in the temporal lobe, quite a wide variety of symptoms can occur. This is because the functions of the temporal lobe are quite varied. As with all types of epilepsy, each person is different and straightforward comparisons are not always possible.

Usually, someone having a simple partial seizure originating in the temporal lobe will experience an intense feeling, for example, sudden fear or happiness. They may have an extremely vivid memory flashback or strong sense of déja vu. Unpleasant smells or tastes and an unpleasant sensation in the stomach are also possible symptoms.

These symptoms are often called an aura and can act as a warning for people with complex partial seizures. During simple partial seizures, the person remains fully conscious and the seizure is usually very brief. Often it is only the intensity and suddenness of these feelings that differentiates between someone having a usual déja vu experience, for example, and someone having a simple partial seizure.

The frontal lobe

If a seizure originates in the frontal lobe, the person will experience a totally different set of symptoms. Because this area of the brain deals primarily with movement, the symptoms are sometimes called motor seizures.

The person may feel their head drawn to one side. Sometimes their arm or hand becomes stiff and is drawn upwards. Some people then experience some jerking movements in that limb. If this symptom spreads to other parts of the body it may be what is called a Jacksonian seizure, a very rare type of seizure named after British neurologist, Hughlings Jackson. Sometimes this can spread to the rest of the brain and become a tonic-clonic seizure.

If a persons head is drawn to the left or it is the left hand or arm affected by the seizure, this means that the epileptic activity is occurring in the right frontal lobe and vice versa. Because this lobe also controls part of our speech, some people experience speech arrest, resulting in an inability to talk or not being able to be understood.

After this type of seizure, which again is usually only brief, the person can experience a short period of weakness. In rare instances people can be briefly paralyzed and this is known as Todds paralysis.

The parietal lobe

The parietal lobe deals with our bodily sensations and simple partial seizures beginning in this part of the brain cause strange physical sensations. A tingling or warmth down one side of the body is typical. Because the parietal lobe is closely associated with the frontal lobe, people sometimes experience movement too. Known as sensory seizures the after effect can be a period of numbness which wears off after a while.

The occipital lobe

The fourth area of the brain which can be the source of a simple partial seizure is the occipital lobe, responsible for our vision. It follows, therefore, that the symptoms of these seizures are to do with the way we see things. Flashing lights, balls of light or strange colours are typical symptoms, affecting half of the vision. Again, this occurs in the opposite side of the body to the lobe where the seizure originates.

The brain is a very complicated mechanism, and it is not always as simple as it seems to decide which area of the brain is the origin of someones seizures.

What to do

Because people experiencing simple partial seizures remain conscious, they can find the experience distressing or upsetting. Children, particularly, can be worried about what is happening to them.

As with all seizures, it is important not to restrain the person, but reassurance that all will soon be well can be very important. They can hear you and respond to you. Stay with the person and remember that they may need a period to fully recover. If the person has not had this experience before they should make an appointment with their doctor.

Secondary generalization

Sometimes, the activity that starts a simple partial seizure can spread to the whole brain and result in a tonic-clonic seizure. This is known as a secondary generalized seizure.

Often the person will experience the simple partial seizure as an aura or warning, but sometimes the spread of epileptic activity can be so quick that the person appears to move straight into a tonic-clonic seizure. This can cause problems with diagnosis, until the necessary scans are done and the specialist can see where the activity first occurs.

Photosensitive Epilepsy

Photosensitive epilepsy is the name given to that form of epilepsy in which seizures are provoked by flickering light encountered in everyday life. Both natural and artificial light sources may precipitate seizures, but the commonest precipitant appears to be television.

It is often assumed that everybody with epilepsy is photosensitive, but only 5 per cent of people with epilepsy are. This sensitivity occurs at a rate of approximately 1:4000 of a young (20 or under) population. The onset of photosensitive epilepsy occurs below the age of 20 years and the condition appears to be most common between the ages of 9 and 15. Females are more affected by photosensitivity than males. There is evidence, too, of a genetic factor in this condition.

Various types of seizure may be induced by flickering light, but a tonic-clonic (grand mal) seizure is certainly the most frequent type induced by television, perhaps preceded by myoclonic jerking (brief jerking of the limbs).

The arrival of television

The first report of epileptic seizure being provoked by watching television was made in the early 1950s. Seizures documented at this stage were said to have been provoked by television sets which were defective and therefore flickered, or in which the vertical hold was faulty, causing the picture to roll. Further clinical investigation, however, has indicated that seizures may also be provoked by a normally functioning television, particularly when the subject is viewing near the set.

The important factor here is the larger area of the eye's retina which is stimulated by the flicker frequency of the picture on a television that is, in fact, functioning normally. The nearer the subject is to the set, the more the picture is filling the whole field of vision and so the more likely is an abnormal response in the brain and, therefore, a seizure. In addition, subjects sitting close to the set can see the 25Hz flicker of the lines as well as the 50Hz mains flicker on the screen as a whole. Only 50 per cent of photosensitive people are sensitive to 50Hz but 75 per cent are sensitive to 25Hz.

Seizures may occur, therefore, when the viewer is watching a faulty set or adjusting the set, or is very near to the set. Associated factors include the angle from which the set is being viewed, sensitivity to geometric patterns and the effect of tiredness and alcohol.

Precautions and other causes

Simple measures may be taken to avoid having a seizure while watching television. The set should always be viewed in a well lit room, from a distance of 2.5 meters or more, with a small illuminated table lamp placed on top of the set.

The person should avoid approaching the television, adjusting it and switching channels. Covering one eye with the palm of the hand so as to cut down the number of brain cells that are stimulated by the flicker should be practiced if the person has to go near the television set. Television sets with remote control enable people to adjust their set from a distance and are therefore useful. 100Hz television sets will almost entirely solve the problem, or alternatively, sets with small screens (less than 14") will help.

Factors precipitating seizures in photosensitive epilepsy apart from television flicker include sunlight reflected off wet surfaces or through leaves of trees, or seen when the person is moving rapidly past trees or railings illuminated by sunlight shining from the side. Flashing lights such as those used in discotheques and the flickering of fluorescent lighting may also induce seizures.

People with photosensitive epilepsy are generally encouraged to avoid discotheques or places where flashing lights are likely to be encountered. It should be bore in mind that people with photosensitive epilepsy are unlikely to be troubled by a flicker rate of under five per second, but using photochromic (light responsive) glasses with one lens totally darkened will render 95 per cent of sensitive people safe. While wearing such glasses in darkness, the untreated photochromic lens will be clear, enabling you to see - as far an anyone can in the average disco. Should any flashing light come on without warning and protective glasses are not being worn, immediately cover one eye with the palm of the hand.

The wearing of polarized sunglasses out of doors on sunny days is of assistance in removing flickering reflections (from water, etc). Non-polarized sunglasses are of no value in this condition.

Visual display units (VDUs)

Contrary to public belief, the use of VDUs rarely presents any risk to the person with epilepsy. To ensure that any risk is kept to an absolute minimum, it is important to consider both the type of software and the display screen you intend to use it on.

  • Computer display screens

Most current computer displays (CRT or Cathode Ray Tube) have scan frequencies of 70 per second and above. These are unlikely to provoke seizures.

Computer displays with active matrix liquid crystal displays (LCDs), also known as Thin Film Transistors (TFTs), are flicker free. On a standard laptop/notebook screen they have 786,432 pixels at 1024 x 768 resolution. Images are sharper, brighter and distortion free compared to CRTs. The brightness and sharpness, however, may increase the risk to people with photosensitive epilepsy, if high contrast patterns are presented.

  • Software packages

When you use software packages on an LCD or TFT, the screen responds by only changing those pixels affected. On a CRT monitor the whole screen is constantly refreshed. On LCDs/TFTs, standard software packages, such as Office, produce very tiny changes to the screen. Full motion video (such as DVDs), when viewed at full screen on LCDs/TFTs, produce many changes to the screen. These changes can be reduced by running the video image within a window, thereby minimizing the number of pixels changing at any given time. For watching full motion video (where there is a great deal of action on the screen) CRTs may be preferable. This is because CRTs refresh quicker than LCDs/TFTs.

Where the material being displayed contains flicker or repetitive patterns, it will carry the same risk whether it is viewed on CRTs, LCDs/TFTs or conventional television.

In summary:

  • The high flicker rate of CRTs means they present a very small risk to people with photosensitive epilepsy.
  • LCD and TFT screens do not flicker at all.
  • Increased brightness and sharpness of LCD and TFT screens may increase the risk to people with photosensitive epilepsy. This risk can be minimized by reducing the brightness of the screen.
  • Any material being displayed that contains flicker or repetitive patterns on any type of screen poses a risk to people with photosensitive epilepsy.
  • If you primarily use Office or similar packages, an LCD/TFT screen is the better medium.
  • For watching DVDs at full screen, a CRT is the better medium.

Anti-glare screens are frequently recommended for eyestrain. While these can be of help in reducing glare, they do not reduce the flicker rate and are therefore of no specific benefit to people with photosensitive epilepsy.

Caring For Young Children

Many mothers and fathers with active epilepsy successfully care for their young children but it may be helpful to consider the following guidelines:

  • Feed the baby while sitting on the floor surrounded by cushions. When the baby is slightly older and is taking solids it may be preferable to put him/her in a bouncing cradle or car seat on the floor and sit next to him/her while feeding.
  • Do not bath your baby while alone. Instead you could put the baby on a changing mat on the floor or in the cot and sponge him/her down.
  • If you always fall in a particular direction at the onset of a seizure always place yourself on the correct side of your baby while feeding and washing so that you avoid falling on him/her.
  • Avoid carrying your baby around the house, especially up and down stairs. 
  • Avoid hot drinks and cigarettes near your baby. Safety gates at top and/or bottom of stairs may be a sensible precaution.
  • Always keep front/back doors and garden gates securely shut.
  • Women taking anti-epileptic medication can usually breast feed without any problems. You should discuss what is best for you with your neurologist.
  • Fitting safety brakes to the babys buggy/stroller will avoid the pram rolling away if you have a seizure while out for a walk.
  • Avoid toddlers wondering off when away from home by using reins or one of the simple straps available. For extra peace of mind it may be useful to make sure your toddler has an identity tag of some kind. 

Telling Your Child

As a parent or carer protecting a child from harm is a natural instinct. When a child has a medical condition this need to protect becomes even more acute, sometimes to the point of being over-protective. However, unless a child understands their own condition they are likely to come to all kinds of wrong conclusions as they try to work it all out.

The childs view

Small children have very vivid imaginations. Although most childhood fantasies are a lot of fun, and quite harmless, it is possible for a child to frighten himself with what he makes up. Scary fantasies often arise when a child is anxious about something he doesnt understand, but luckily they tend to disappear when a proper explanation of the situation is given.

We often overlook the fact that a child with epilepsy is likely to make up fantasies about his seizures unless they are properly explained to him. Cases have been reported in which children associated seizures with death, or with broken or missing brains, and with punishment for being bad. These may be extreme cases, but they do demonstrate how a child can misunderstand his condition and become very anxious about himself.

Explaining seizures

It is important that children with epilepsy should be given factual information about seizures so that they can understand. This will help to prevent undue anxiety, and will lead to a better acceptance of the condition and of its treatment.

Parents should themselves insist on a full explanation from the doctor of the type of epilepsy and details of the treatment. They should also ask the doctor to explain the condition in simple terms to the child, even when he is very young, and to stress the need to take the medication every day.

At home the child will probably ask questions about his seizures and treatment. parents need to make sure they have a good understanding of epilepsy, so that they can provide correct answers and reassurance. Adequate information about their childs epilepsy will also help parents to cope better with their own anxiety and concern.

Explaining seizures to a very young child who doesnt know much about his own body or how it works can be quite difficult. We think the description given by a seven year old named Peter of his own seizures would be helpful even for very young children.

"Its like when youre watching TV and the picture gets blurry and fuzzy for a minute and then goes back on again OK. Thats what it seems like with me."

You can add that this happens to lots of people, children and grown ups, and the medicine you take helps to keep the picture clear.

An older child can be given a more detailed explanation along the following lines of:

"Our brain, which is inside our head, controls everything we do: walking, talking, seeing, hearing, even sleeping. Everyone has a little bit of electricity in their brain, and this electricity helps the brain send messages to our body to tell it what to do. Sometimes people make too much electricity in their brain and the messages get all mixed up. Thats what is happening when you have a seizure. its a bit like the way static can make the picture on the TV set go all fuzzy or disappear for a minute. The tablets you take help to stop the electricity increasing so that you wont have a seizure so often. Lots of people, both children and grown ups, have this problem with too much electricity, and they all take tablets to keep it in order."

Epilepsy and Employment

Most people with epilepsy today manage to hold down a job successfully. True, epilepsy can sometimes pose problems at work and some people with epilepsy may find it hard to obtain a job that uses their skills and experience to the full. However, very few jobs are barred by law to people whose seizures are under control and with patience, perseverance and a positive outlook, you should be able to find work that you enjoy and that uses your skills and talents.

Looking for a job

Your options will depend on your skills and talents as well as the nature of your epilepsy. If your seizures are well controlled with medicine or if you only experience sleep seizures, your choice will be wider.

Where to search for a job:

  • Advertisements
  • Recruitment agencies
  • Personal or official contacts
  • Approaching individual companies

Some practicalities

  • Insurance: Your employers Liability Policy should cover you as long as s/he took your epilepsy into account when allocating work.
  • Pensions: As long as you are fit to work you should be eligible for a pension scheme if one is available.
  • Unions: If you believe you are being discriminated against because of your epilepsy contact your union. Most are committed to equal opportunities for people with disabilities. 

Applying for a job

Once you have found something suitable, send a letter and resume, or a neatly filled-in application form supplying the information asked for.

You may need to tell any future employer about your epilepsy, depending on the job you are applying for and the nature of your epilepsy. Should you feel you need to inform a prospective employer of your epilepsy, there's no need to reveal this when you apply for a job unless a question on the form specifically asks you to do so. In this case, a letter from you doctor may help to clarify how your epilepsy would or would not affect you. Unfortunately, some employers will have mistaken ideas about the nature of epilepsy, so it's often more helpful to broach the subject face to face if you are called for an interview. It is vital, however, to be honest with yourself about the nature of the seizures and to be realistic about how they might affect your ability to do the job now. Don't base your application on how you hope things might be in the future.

Dealing with rejection

In these days of fierce competition on the job market everyone encounters some rejections. Dont automatically assume you have been turned down because you have epilepsy - it could be that your qualifications and abilities dont fit the job you applied for, or you may simply have been unlucky. Before applying for any job consider the following:

  • Do you have the right sort of practical experience?
  • Are your qualifications suited to this job?
  • Do you have the right personal qualities for the job?
  • Is your epilepsy likely to affect your ability to do the job?

Remember: being seizure-free is not as important as being well qualified for the job.

Getting an interview

Some things you can do to prepare for an interview:

  • Find out as much as you can about the job and the firm offering it
  • Think about the qualities needed and how you can show that you possess them
  • Practice the interview with a friend
  • Try to anticipate the sort of questions you may be asked about your epilepsy and think about how you will answer them.

At the interview

First and foremost your aim is to convey a good impression of yourself and convince the interviewer that you are capable of doing the job.

In general:

  • Dress neatly
  • Arrive promptly
  • Try to establish a good relationship with the interviewer(s)
  • Be polite
  • Try to appear relaxed and natural

Talking about your epilepsy

The choice is yours whether you want to tell any prospective employer about your epilepsy. You could wait until the interview or once the position has been offered before telling an employer. However, if your epilepsy may affect you during your working hours, it would be helpful for you to talk to your employer about it at some stage before starting work. You should also bear in mind that under the Health and Safety at Work Act it is necessary to declare your epilepsy if the job you are to do is a health and safety risk. For example, if the job could be potentially dangerous and you experience a seizure would you be a danger to yourself or your colleagues? You should also realize that in order to be sure you are covered by an employer's insurance, the employer should be aware of your epilepsy when allocating work. It may be, however, that you feel it is not necessary to declare your epilepsy at the onset because your epilepsy is well controlled and will in no way affect your ability to do your job safely and effectively. However, should your seizures become more frequent or severe, and you feel you need a reasonable adjustment to help you, you can change your mind and tell your employer as a later date.

Think about the following (if it is relevant to talk about your epilepsy):

  • Pick your moment carefully.  Some people with epilepsy have found it best to leave it to the end of the interview. This gives you time to impress the interviewer with your suitability for the job before raising the matter of your epilepsy.
  • It may be useful to take along a doctors letter with which explains the nature of your epilepsy and how it may affect your employment.

What to tell your employer:

  • The type of epilepsy you have and how it affects you. Include how often and when you have seizures
  • Whether you have a warning or aura before having a seizure
  • How long your seizures normally last
  • What should be done if you have a seizure

Some employers know very little about epilepsy. For example they may assume - wrongly - that you cannot use a computer because of photosensitivity (abnormal sensitivity to flickering light). Its up to you to get the facts across in an accurate and matter of fact way.

Telling people you work with

Once you have found a job its up to you to decide what to tell your fellow employees. This can be tricky, but it is best to be honest. If other people know about your epilepsy and what to expect if you have a seizure there is less likelihood of embarrassment and anxiety all around.

Presenting the facts about your epilepsy in a positive way will help dispel any fear and misunderstanding on the part of your employer or fellow employees.

Epilepsy Later In life

Epilepsy can affect anyone at any time of life. It is more commonly diagnosed in people under the age of 20 or those aged over 60.

Most of the aspects of epilepsy discussed apply whatever age you are. If you have had epilepsy for a long time you will already be used to living with it. However, if you have been diagnosed later in life it can come as a complete shock, and it can be especially hard to make the necessary adjustments. For instance, having to give up driving can be a real blow, especially if public transport is poor where you live, or your partner depends on you being able to drive.

Why now ?

Epilepsy can strike us at any age, but some aspects of the ageing process can make us more prone to develop it in later life. Hardening and narrowing of the blood vessels in the brain (cerebrovascular disease) is a common cause as we get older. Strokes - interruption of the brain's blood supply or leakage of blood through the vessel walls - are another. Other medical problems may play a part too. Some of us are not as good as others at looking after ourselves as we get older and anemia and shortages of nutrients may also increase our tendency to develop seizures.

Simplifying Treatment

Most doctors today prefer to control epilepsy using just one drug rather than several. This makes life a good deal easier for those of us who are older, who may have more trouble remembering to take our medicine than when we were younger. And anti-epilepsy drugs have to be taken correctly if they are to control our seizures.

Taking several drugs increases the risk of side effects such as drowsiness. It can also be confusing if we have to take drugs for other medical problems. For this reason the doctor will try to keep your treatment as simple as possible.

Special Considerations

The principles of care are exactly the same when we are older as they are in younger people. However, there are various special factors we need to take into account with regard to epilepsy in later life.

Side effects can be more troublesome. Drugs often produce more effects as we get older because our bodies take longer to process them. Then again, because we are more frail, we may be more likely to sustain injury during a seizure. And because our bones tend to be more brittle we are more likely to suffer fractures if we fall or knock ourselves.

Seizures too may become more difficult to deal with. Elderly people sometimes feel confused for longer and fail to recognize where they are when they come round after a seizure.

If you care for an elderly person with epilepsy, keep an eye open for any deterioration in his or her mental state or alertness. Such changes may or may not be linked to epilepsy. It is a good idea to tell the doctor who may want to adjust the patient's medication.

Staying Independent

It's natural to want to stay independent for as long as we can as we get older. And an important part of such independence is being able to live in our own home. Sadly, the loss of those close to us means many of us are forced to live alone in later life. Most elderly people with epilepsy can manage to do so with a little extra support from those around them.

It can be particularly important to make adjustments to our living arrangements to make our homes safer as we get older.

There are various services in the UK to help older people. For example, the doctor may be able to arrange for a community nurse to visit. It may be possible to get some home help or meals on wheels, and there may also be day care centers which older people with epilepsy can visit. Further information on these types of services is available from your doctor, community nurse or local social services departments.

Miscellaneous Information

Evening Primrose Oil
(and Gamolenic Acid)

Many doctors advise caution in prescribing this treatment to people with a history of epilepsy. Anecdotal evidence from callers some people also indicates that taking Evening Primrose Oil (EPO) may make someone with a low epileptic threshold more likely to experience seizures.

The potential risks of taking EPO for people with a susceptibility to epileptic seizures were brought to light during studies on patients with schizophrenia in the 1980s. The patients did not have a diagnosis of epilepsy but when treated with EPO for general therapeutic reasons began experiencing seizures. It is not known whether this was an effect of the EPO alone or whether it was because the patients were also taking anti-schizophrenic drugs.

EPO may lower the seizure threshold and consequently increase the likelihood of seizures. EPO is absorbed by the brain and produces protaglandin (found naturally in the brain) which, in turn, can affect the seizure threshold. Prostaglandin is one of several hormone-like unsaturated fatty acids that act in exceedingly low concentrations on local target organs such as the autonomic and central nervous system.

Caution is advised in the use of Evening Primrose Oil in people with a predisposition to epileptic seizures.

Sudden Unexpected Death in Epilepsy

Receiving a diagnosis of epilepsy affects everyone differently but most people require some time to come to terms with the news and so may their families and friends. The information received at the time from the doctor and other sources may include basic medical facts and the practical aspects of living with the condition. Advice is likely to be generally positive suggesting a good prognosis (outcome) with the aid of anti-epileptic medication.

Around the time of diagnosis the person concerned and his/her family need to be told about the potential risks of having epilepsy, but this does not always happen. Most people with epilepsy live full and active lives. There is, however, an increased risk of death due to accidents, suicide and other medical conditions. There are also cases where the death appears to be directly related to epilepsy itself, usually referred to as Sudden Unexpected Death in Epilepsy (SUDEP). This information is not always passed from doctor to patient. This may be due to fear of speaking about a difficult subject or because the doctor is not fully aware of the risks. Perhaps the doctor feels their patient has enough to deal with and it is not the right time to mention anything negative associated with the condition. Whatever the reason few patients and their families are informed of the risk of death in epilepsy. Although some may prefer not to know and take every day as it comes, others would prefer to know but are not being given that chance.

Feedback shows that the relatives and friends of those who have died unexpectedly would also have preferred to have been told about SUDEP. To lose someone is hard. To discover that such important information has not been passed on can make the loss even harder to accept.

Epilepsy Action is promoting awareness of SUDEP to people with epilepsy and their families. We are campaigning to support further research and to increase understanding and knowledge about SUDEP amongst health professionals. The ultimate aim is to prevent people with epilepsy dying unnecessarily.

What is Sudden Unexpected Death in Epilepsy (SUDEP)?
"SUDEP is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death."1

How common is it?
Until relatively recently there was little known about this subject and it was believed to be rare. However, research now indicates that it is not that rare. There are fewer deaths from SUDEP than asthma but, taking into account that more people have asthma than epilepsy, epilepsy carries a relatively much higher risk.

Many studies on SUDEP have researched the changes to breathing and heartbeat. These appear to be the most likely causes but further research is needed. It is, for example, unclear whether there is already an existing weakness to the heart and lungs and, if so, how this may be related to epilepsy. One theory is that epilepsy itself, and/or the medication taken, may weaken some people's major organs.

The research on heart and respiratory function during seizures has identified the following as possible causes of SUDEP:

Sometimes people stop breathing during a tonic-clonic seizure. Usually the breathing returns as the seizure ends but it seems that in some cases this natural recovery may not happen.

During a seizure, part of the brain which controls the heartbeat may be affected. It is possible that this could cause an abnormal heart rhythm to develop and in some cases this could be unstable enough to cause the heart to stop beating.

Risk factors
There is still a great need for further research into SUDEP to ensure it becomes a rare occurrence. Research to date has not managed to identify the exact cause of SUDEP. What has come to light is that there are certain common factors that link many of the cases:

  • Forgetting to take some dosages or not taking the medication at all
  • Taking more than one type of anti-epileptic drug
  • Having frequent changes of anti-epileptic drug dosage
  • Poor seizure control
  • Having seizures during sleep
  • Being alone at the time of the seizure
  • Experiencing tonic-clonic seizures
  • Having brain damage
  • Being a young adult, particularly male

When considering the risk factors remember that just because some or more of these may apply it does not mean that someone will die from SUDEP.

Research into SUDEP has increased significantly over the last few years and pressure groups have lobbied strongly for this. Although this research has given us new information it is not clear enough to ensure that SUDEP can be prevented completely. Further studies are urgently needed. In the meantime we can use the information available to give us some ideas of ways of preventing SUDEP:

  • People whose seizures are not well controlled would benefit from regular assessment by an epilepsy specialist in order to ensure optimum seizure control.
  • If anti-epileptic drug treatment has proved unsuccessful treatments such as surgery or vagal nerve stimulation could be explored.
  • There is now a range of newer anti-epileptic drugs available on prescription and it is also possible, at some epilepsy clinics, to participate in trials of new drugs that are not yet licensed.
  • For those whose epilepsy is well controlled, it would be advisable to be monitored by a medical professional and to take the medication regularly as prescribed.
  • Medication should never be abruptly withdrawn as this could cause seizures to occur. This may also increase the risk of death.
  • If anyone has particular health concerns which they believe may put them more at risk, it would be advisable to discuss these with their doctor.
  • There is evidence that the part of the brain which controls breathing can be stimulated to start working again if the person's body or limbs are moved. This needs to be no more than what happens in normal first aid for a seizure, when the person is placed in the recovery position.
  • In many cases of SUDEP the person was alone. It would make sense, therefore, if possible, to stay with someone throughout a seizure and for 15 - 20 minutes or so afterwards to ensure breathing is normal. However this has to be balanced with issues such as the individual's wishes regarding independence and the practicalities of having a companion available whenever needed.

For anyone considering the possible risks of SUDEP, as in every other area of life, a balance has to be struck between living a full and active life and taking precautions to reduce risks. People with epilepsy are individuals and as such have the right to chose how they lead their lives.

The Mozart Effect

There has been controversy about the benefits ever since researchers claimed that listening to the K448 piano sonata improved spatial reasoning skills. Later research suggested that K448 can reduce the number of seizures in people with epilepsy.

Professor John Jenkins assesses international evidence on the effect of music on the brain, and calls for more work to be done to discover the key ingredient in the "Mozart Effect".

The original Mozart effect study in 1993 assessed volunteers spatial reasoning after listening to sonata K448, relaxation tapes or silence. Results suggested that just 10 minutes of Mozarts music improved their performance of tasks such as paper-cutting and folding. Later studies found that rats negotiated a maze faster after hearing K448 than rats who were played white noise, silence, or minimalist music. Elsewhere, children taught a keyboard instrument for six months, learning simple melodies (including Mozart), did better on spatial-temporal tests than children who spent the time working with computers.

Controversy arose when other researchers could not reproduce the positive results.

Scans have shown that the human brain uses a wide distribution of areas to listen to music. Rhythm and pitch tend to be processed in the left side, timbre and melody on the right. Those parts of the brain which we use for spatial/temporal tasks actually overlap with the music processing parts. Professor Jenkins suggests that listening to music would prime the activation of those areas of the brain which are concerned with spatial reasoning.

More recent work with epilepsy patients has indicated what Professor Jenkins calls a more impressive indication of a Mozart effect. Once again, sonata K448 was played to participants, most of whom showed a decrease in their epileptiform activity - the patterns in the brain that produce epileptic seizures.

Computer analysis of pieces by various composers showed that the music of Mozart and Bach shared a common factor, a high degree of long-term periodicity, in other words, wave forms repeated regularly, but not very close together, throughout the piece of music. By contrast, music which had no effect on either spatial reasoning or on epileptic seizures did not have this factor. Professor Jenkins commented:

"It is suggested that music with a high degree of long-term periodicity... would resonate within the brain to decrease seizure activity and to enhance spatial-temporal performance.

Professor Jenkins concludes that any health benefits of listening to music are not specific to Mozarts compositions, and calls for more research to be done on music other than K448, with longer listening times. For the benefits to be of real use, we need to discover exactly what musical criteria have to be present for the Mozart effect to take place.

Apart from another Mozart Concerto, K488, only one other piece of music has been found to have a similar effect, a song by the Greek-American singer Yanni.  Entitled 'Acroyali/Standing In Motion', it is featured on his album "Live At The Acropolis".  This composition was chosen by researchers because it was similar to Mozart's K448 in tempo, structure, melodic and harmonic consonance and predictability.

Epilepsy and Depression

Depression is a common experience for many people, but it is known to occur more often in those of us with epilepsy.

What is depression?

Most people feel sad from time to time. The difference between sadness and depression is not clear but, at some point, when sadness is prolonged and impairs a person's ability to enjoy life, that person may be considered to be depressed.

Depression can cause feelings of deep gloom and hopelessness. Other problems include difficulty in concentrating, in sleeping (either not being able to sleep or sleeping too much), decreased sexual desire and appetite disturbances such as overeating or loss of appetite.

Psychological/social factors

In people with epilepsy, depression can be a psychological reaction to having the condition or to being treated differently because of it. Symptoms of depression can also be triggered by the social problems related to a diagnosis of epilepsy (such as losing one's driving license) or to an increase in the number of seizures being experienced. And of course depression can be triggered in those of us with epilepsy by all the same things as for other people, such as the death of someone close, divorce or redundancy.

Drug related factors

Depression can also be a side effect of medication such as some barbiturates. The depression associated with barbiturates such as phenobarbital and primidone is often dose-related, which means that the higher the dose of the drug, the greater the risk of depression. Taking one or more other anti-epileptic drugs in combination with a barbiturate can also increase the risk of developing depression.

Factors related to the underlying cause of the epilepsy

Depression can also be related to the cause of the epilepsy. Injury to the brain can occur for many reasons, including stroke, oxygen deprivation, head trauma or a past infection such as meningitis or encephalitis. Because the brain controls our emotions and moods, it is not surprising that any disruption to normal brain functions can cause depression. Studies suggest that people with damage to the frontal and temporal lobes of the brain are more prone to depression than those with damage to other parts of the brain. However, many people with brain damage do not become depressed.

Seizures causing depression

Although it is unclear exactly how epilepsy as a condition can directly cause depression, it is known that some people have changes in mood or behavior in the period before a seizure occurs. This is known as the "prodromal" stage. Mood changes at this time are usually relieved by the seizure. Depression may occur as part of a warning or "aura" before a more recognizable seizure. Equally, depression and confusion are very common following a seizure. This is known as a "postictal" state. Usually, postictal states are brief.

Treatment options - benefits and risks

When deciding which treatment to use for depression, it is necessary to balance any benefits and risks to the person concerned. As the most serious complication of depression is suicide, this issue of risk versus benefit needs careful consideration. Apart from antidepressant drugs and counseling, in very severe cases, electroconvulsive therapy may be needed. Depression related to seizure activity needs treating by dealing with the seizures themselves, most usually with anti-epileptic medication.

Alternative/complementary therapies

As depression can be related to conditions other than epilepsy, it is important to seek medical advice before starting any treatment such as counseling, over-the-counter or herbal remedies. This is equally important even if the depression is related to epilepsy as some herbal treatments and remedies, such as St. John's Wort can interact with anti-epileptic medication.

Sleep and Epilepsy

Some people with epilepsy have their seizures only while awake, some while asleep and some have a mixture of both. The following information looks at different states of sleep and may be useful when considering why peoples seizures may occur at different times.

The sleep/waking cycle

There are three basic states of existence: wakefulness, non-rapid eye movement (also called quiet, orthodox or synchronized) and rapid eye movement (active, desynchronized, paradoxical sleep). Each part of the sleep-waking cycle is related to a particular type of epileptic phenomena.

The duration of non-rapid eye movement (NREM)/rapid-eye movement (REM) sleep cycle varies from 45 minutes in infancy to 90 - 110 minutes in adolescence, after which it is relatively stable. These cycles repeat throughout the night. In NREM there is little body movement and regular respiration, while REM is characterized by its ocular (eye) activity, frequent twitching of face and peripheral parts of the limbs, and increased and irregular respiration, therefore called active sleep. The two sleep states are based upon activation of different centers of the brain and different neurochemical mechanisms.

Generalized epileptic events (eg. tonic-clonic seizures) are increased in NREM sleep and decreased or abolished in REM sleep. Partial seizures may also be facilitated by sleep and sleep EEG recordings may show a second independent epileptic focus not present in waking recordings. This is because in REM sleep the generalized discharge may be suppressed, making the focal component evident.

Separate peaks of seizures occur about 1 - 2 hours after falling asleep and at 5 - 6 am. These can be understood as representing the most probable time of occurrence of the two most frequent seizure types i.e. generalized (eg tonic-clonic) and temporal lobe seizures of hippocampal origins respectively.

Particular forms of epilepsy are especially activated by sleep. For example, in Lennox Gastaut Syndrome in children, seizures are markedly increased in NREM sleep. These may occur 50 - 200 times per night but may be interpreted as simple body movements, when in fact they are seizures.

It is important to know which sleep state produces a persons seizures, as this would enable the correct treatment to be prescribed. However, increases in seizures in the second half of the night may be due to lowered serum levels of anti-epileptic drugs.

Nocturnal attacks of non-epileptic mechanism

Episodes involving sleep-walking, sleep terrors and urinary incontinence can be confused with epilepsy. Bed-wetting in people with epilepsy should be carefully investigated as, though it may be related to seizures, this should not be assumed. A sleep EEG could clarify whether epileptic activity is occurring.

Sleep deprivation

Sleep deprivation appears to be a precipitating factor for seizures in some people with epilepsy. The reason why this should be so is unclear. It may be due to neurochemical or hormonal changes or it is possible that the normal increase in protein synthesis that occurs in sleep may be impeded, thereby diminishing cellular repair mechanisms and rendering brain cells more open to epileptic activity. However, sleep deprivation may also be used by doctors to activate EEG abnormalities in patients when a diagnosis of epilepsy is unclear.

In conclusion, people whose seizures are triggered by changes in sleep patterns should be advised to maintain reasonably regular hours of retiring and awakening, to obtain sufficient sleep, and to avoid shift work or other causes of disrupted sleep-waking rhythms. There is not need to exceed average hours of sleep to reduce the chances of seizures occurring.

Sleep and Epilepsy

Some people with epilepsy have their seizures only while awake, some while asleep and some have a mixture of both. The following information looks at different states of sleep and may be useful when considering why peoples seizures may occur at different times.

The sleep/waking cycle

There are three basic states of existence: wakefulness, non-rapid eye movement (also called quiet, orthodox or synchronized) and rapid eye movement (active, desynchronized, paradoxical sleep). Each part of the sleep-waking cycle is related to a particular type of epileptic phenomena.

The duration of non-rapid eye movement (NREM)/rapid-eye movement (REM) sleep cycle varies from 45 minutes in infancy to 90 - 110 minutes in adolescence, after which it is relatively stable. These cycles repeat throughout the night. In NREM there is little body movement and regular respiration, while REM is characterized by its ocular (eye) activity, frequent twitching of face and peripheral parts of the limbs, and increased and irregular respiration, therefore called active sleep. The two sleep states are based upon activation of different centers of the brain and different neurochemical mechanisms.

Generalized epileptic events (eg. tonic-clonic seizures) are increased in NREM sleep and decreased or abolished in REM sleep. Partial seizures may also be facilitated by sleep and sleep EEG recordings may show a second independent epileptic focus not present in waking recordings. This is because in REM sleep the generalized discharge may be suppressed, making the focal component evident.

Separate peaks of seizures occur about 1 - 2 hours after falling asleep and at 5 - 6 am. These can be understood as representing the most probable time of occurrence of the two most frequent seizure types i.e. generalized (eg tonic-clonic) and temporal lobe seizures of hippocampal origins respectively.

Particular forms of epilepsy are especially activated by sleep. For example, in Lennox Gastaut Syndrome in children, seizures are markedly increased in NREM sleep. These may occur 50 - 200 times per night but may be interpreted as simple body movements, when in fact they are seizures.

It is important to know which sleep state produces a persons seizures, as this would enable the correct treatment to be prescribed. However, increases in seizures in the second half of the night may be due to lowered serum levels of anti-epileptic drugs.

Nocturnal attacks of non-epileptic mechanism

Episodes involving sleep-walking, sleep terrors and urinary incontinence can be confused with epilepsy. Bed-wetting in people with epilepsy should be carefully investigated as, though it may be related to seizures, this should not be assumed. A sleep EEG could clarify whether epileptic activity is occurring.

Sleep deprivation

Sleep deprivation appears to be a precipitating factor for seizures in some people with epilepsy. The reason why this should be so is unclear. It may be due to neurochemical or hormonal changes or it is possible that the normal increase in protein synthesis that occurs in sleep may be impeded, thereby diminishing cellular repair mechanisms and rendering brain cells more open to epileptic activity. However, sleep deprivation may also be used by doctors to activate EEG abnormalities in patients when a diagnosis of epilepsy is unclear.

In conclusion, people whose seizures are triggered by changes in sleep patterns should be advised to maintain reasonably regular hours of retiring and awakening, to obtain sufficient sleep, and to avoid shift work or other causes of disrupted sleep-waking rhythms. There is not need to exceed average hours of sleep to reduce the chances of seizures occurring.

Epilepsy and Memory

It is not uncommon for people with epilepsy to complain of a poor memory, and the reason for this may vary. Memory problems may, for example, be due to a person experiencing epileptic activity in the part of the brain responsible for memory. Someone who has damage in the part of the brain which registers and recalls information may also experience difficulties with memory.

A person who has frequent seizures, partial seizures for example, occurring several times a day, may find that she/he has difficulty concentrating or remembering things.

It is not unusual for someone who has had a tonic-clonic seizure to experience temporary amnesia immediately after the seizure; in certain individuals complete recovery from a seizure may take days or even weeks and they are unlikely to be able to fully remember the events surrounding the seizure.

One or two of the older anti-epileptic drugs, such as phenobarbitone, may in some people cause a slowing of the mental process and subsequent memory problems. This is more likely to happen if the drug(s) is taken in high dosages and/or over a long period of time.

In a person taking more modern anti-epileptic drugs, memory problems are extremely unlikely to occur as a direct side effect of the drug. it is possible, however, for drowsiness, lethargy and difficulties with concentration to be experienced if someone is taking too high a daily dosage of the drug(s). This may cause some people to experience difficulties in recollecting facts or events.

Some research suggests that people with epilepsy may have poorer memories than people in general because they have more to remember - hospital appointments, anti-epileptic medication, recording seizures etc.

It is also possible for mood to influence memory. For instance, if people are feeling anxious, stressed or depressed their memory is more likely to be unreliable.

* * * * * * * * * * * * * * * * * * * *
What to do when someone has a seizure
With some seizure types very little first aid may be needed. For example, in a partial seizure guiding someone away from danger may be all that is necessary.
  • Protect the person from injury - move any sharp or hard objects.
  • Guide the person away from danger if she/he is having a partial seizure.
  • Cushion the persons head if they fall down.  (Please see correct recovery position down below.)
  • When the convulsive part of the seizure is at an end, place the person in the recovery position. This will help their breathing.
  • Be quietly reassuring.
  • Stay with the person until she/he has regained full consciousness.
  • Go over any missed events.


  • Try to restrain the person having the seizure.
  • Put anything in the persons mouth or force anything between his/her teeth.
  • Try to move the person unless she/he is in danger.
  • Give the person anything to drink until they have fully regained consciousness.
  • It is not usually necessary to call for an ambulance when someone has an epileptic seizure. However, it may be necessary in the following circumstances unless a doctor can attend immediately.

Call for an ambulance if....

  • It is the persons first seizure, the cause of which is uncertain and needs investigation.
  • Injuries have occurred during the seizure, e.g. a cut that needs stitching.
  • A generalized seizure shows no sign of stopping after 5 minutes or 2 minutes longer than is usual for that person.
  • If a second seizure occurs without the person regaining consciousness.

Status epilepticus

A prolonged seizure or series of seizures without regaining consciousness is called status epilepticus and is a medical emergency.

Lack of normal respiratory movements combined with extreme muscular contractions during a seizure throws stress on the cardiovascular system. The continuing lack of oxygen may lead eventually to brain damage.

Status epilepticus is usually convulsive, but sometimes it can be non-convulsive ie. absence or complex partial status. This will need intervention, although the urgency is not as great. Status epilepticus is a  rare occurrence, except in a very few patients with difficult to control epilepsy.


Why is Juvenile Myoclonic Epilepsy so often misdiagnosed?
Juvenile myoclonic epilepsy (JME) is a common epilepsy syndrome, which occurs in 7% of all people with epilepsy. If correctly diagnosed, up to 90% of people with JME become seizure-free on a regimen of medication, usually Depakote (valproate). Unfortunately, JME is often misdiagnosed, delaying the start of effective treatment. Even neurologists in excellent epilepsy centers sometimes misdiagnose JME.
Why does this happen, especially considering that people with JME typically show distinctive symptom patterns associated with their seizures and have typical EEG results? Several diagnostic pitfalls have been identified. To complicate the situation, most cases of misdiagnosis involve more than one of these pitfalls:
Inadequate history:
The patient may not report the myoclonic jerks (perhaps thinking they are insignificant), and the doctor may fail to ask about them. It often helps for the doctor to demonstrate what a myoclonic jerk looks like.
Misinterpretation of history:
Doctors may misinterpret myoclonic jerks that involve only one arm, shoulder, or leg as simple partial seizures. Sometimes they also mistake the staring spells of absence seizures for complex partial seizures.
Not the usual symptoms:
The symptoms of some patients with JME do not strictly follow the usual patterns. For instance, seizures may occur throughout the day instead of just first thing in the morning or after a nap.
Misinterpretation of the EEG:
Typically, the EEG of a patient with JME shows generalized discharges of single or multiple spikes and slow waves with a frequency faster than 3 Hz (cycles per second). Sleep and awakening from sleep typically are major triggers for this syndrome, so EEGs that do not include a sleep section may appear normal and lead to misdiagnosis.
Another EEG procedure that sometimes is omitted is photic stimulation (repeated flashing of bright light during the EEG). Photic stimulation will produce typical abnormalities in 25-30% of people with JME.
One other common reason for misdiagnosis is finding an abnormality on only one side of the brain. In this situation, the EEG is incorrectly interpreted as showing a localized abnormality and a diagnosis is made of a type of partial epilepsy rather than JME.
Confusion with other disorders:
In most patients with JME, the neurological exam (including intelligence testing) and neuroimaging (CT scan and MRI, if performed) yield normal results. If one of these tests reveals a mild abnormality, the doctor may incorrectly rule out JME.
The doctor also may incorrectly rule out JME if the patient reports past head trauma, since such injuries often are followed by other types of epilepsy.
Children with a first diagnosis of childhood absence epilepsy also create a diagnostic problem for doctors if they develop myoclonic jerks many years later. It is estimated that 15% of children with typical childhood absence epilepsy will later develop JME.
What's the key to diagnosis?
A correct and timely diagnosis of JME ultimately depends on a good history from the patient or other observers of the seizures, as well as a strong knowledge of the syndrome by the doctor. Such knowledge leads the doctor to look for and correctly interpret the myoclonic jerks that are the key element in JME diagnosis.
The EEG usually is a secondary diagnostic tool because it is often normal and in a few cases it shows only a localized abnormality.
Treatment for JME
Juvenile myoclonic epilepsy (JME) is a common form of epilepsy that usually is easily controlled by treatment with Depakote (valproate) alone. The syndrome usually requires lifelong treatment but with the right choice of medications, people who have JME can live without seizures and without bothersome medication side effects. The usual effective dose for JME is from 500 to 1000 mg of Depakote per day.
Pitfalls for young adults
Because the seizures generally occur during sleep or within an hour or two of waking up, the Depakote can be given as a single nighttime dose. Teens and young adults, however, often forget to take this dose after being out late at night, or they find themselves away from home without their medication when the time comes. Here are a few tips:
    * Keep a dose in your wallet or purse at all times.
    * If you expect to be out late, take the dose before you leave home—taking it early is better than not taking it at all.
    * Taking a nap before a late night may help to ward off the effects of sleep deprivation, which may bring on seizures, especially when combined with alcohol.
Other problems with Depakote
Most people tolerate this dosage of Depakote quite well, but some suffer from intolerable side effects:
    * tremor
    * weight gain
    * nausea or abdominal discomfort
    * hair loss
    * irregular menstrual periods
For these patients, JME may be effectively controlled with other seizure medicines without causing unacceptable side effects. The choice of medication is very important, however, because several medicines used to prevent the seizures of JME can actually make them more frequent or intense.
What can I use instead of Depakote?
Lamictal: The next medication chosen to treat JME is frequently Lamictal (lamotrigine). It can be used either in combination with Depakote or by itself and is often effective for myoclonus, absences, and tonic-clonic seizures.
There has been no randomized, controlled trial to compare the effectiveness of Lamictal with Depakote, but doctors who see many patients with JME generally report that Lamictal is not as helpful for the tonic-clonic seizures as Depakote. In fact, it has not been specifically approved by the U.S. Food and Drug Administration (FDA) for the treatment of JME because the necessary types of studies have not been performed.
When Lamictal is used alone, the usual successful dose ranges from 100 to 300 mg per day. Unfortunately, it often takes 2 or more months to reach this dosage because the risk of serious rash is higher with rapid introduction. Some patients require higher doses to achieve control of their seizures, or lower doses to avoid side effects. Worsening of myoclonic jerks has been reported in some patients taking only Lamictal. If this happens, the Lamictal should be stopped or taken in combination with Depakote.
Side effects reported with Lamictal include mild anxiety, mild transient rash, and dizziness. (Life-threatening rashes have occurred, but are very uncommon.) Lamictal has been reported to be safer to use in pregnancy than many other medicines and it is now viewed as a useful alternative in the management of JME.
Topamax: Topamax (topiramate) is another seizure medicine sometimes suggested for the treatment of JME. It has broad activity against the various seizure types of JME and has been reported (in a few instances) to be effective when used alone. The recommended daily dose may be as high as 400 mg per day in two divided doses.
Even at lower dosages, however, it has been reported to cause fatigue, sedation, speech difficulties, and significant cognitive slowing. These side effects can be minimized or resolved by starting the medication slowly and not increasing it once seizures are controlled. Other side effects reported are weight loss and a minor risk of kidney stones.
Frisium: Frisium (clobazam) has met with some success in difficult-to-treat JME patients, but it is not approved in the United States. It has been used in combination with other seizure medicines or as a "bridging" medication while Lamictal is slowly introduced.
Felbatol: Felbatol (felbamate) also has been reported to be effective in JME, but it presents a relatively high risk of lethal side effects. As a result, it is prescribed only for patients whose seizures do not respond to safer medications.
Diamox (acetazolamide), Mysoline (primidone), Zarontin (ethosuximide), and Celontin (methsuximide) have also been successfully used as alternative treatments for JME.
Do some medicines make JME worse?
The seizure medicine most likely to aggravate seizures in JME is Tegretol or Carbatrol (carbamazepine). These medications may increase myoclonic jerks. Patients with JME should avoid Tegretol and Carbatrol, or should use them only in very carefully selected situations with proper warning and close monitoring.
Trileptal (oxcarbazepine), which is closely related to carbamazepine, also is not a good choice for JME.
Dilantin and Phenytek (phenytoin) have been found to show little efficacy and may even aggravate the symptoms of JME. Sabril (vigabatrin), one of the newer seizure medicines (not approved in the United States), also appears to aggravate JME.
What causes JME to be drug-resistant?
Juvenile myoclonic epilepsy (JME) is not considered a severe condition. If the seizures are not controlled by medication, the doctor may have doubts about the diagnosis, the adequacy of treatment, or about the patient's lifestyle or compliance with the medication regimen. True resistance to the usual medications does happen, however.
JME is a generalized epilepsy. Myoclonic jerks are the hallmark of the syndrome—they should occur at some time in 100% of people with JME. In addition, generalized tonic-clonic seizures are found in 80%, and absence seizures in 25%.
Patients with JME often find that seizures are triggered by lifestyle factors or external events:
    * flashing lights (affecting 25-40%)
    * sleep deprivation
    * fatigue
    * alcohol intake
    * stress
What are the risk factors for poor seizure control?
Little is known about the prevalence and risk factors for drug resistance or intractability in JME. Few studies mention the features associated with poor seizure control.
Dasheiff and Ritaccio reported on 12 patients with intractable JME. These patients had epilepsy for an average of 21 years, during which diagnosis and appropriate treatment were delayed. Many of these patients had EEG patterns that were not typical of JME.
Gelisse and colleagues followed 155 patients with JME and found that about 15% could be considered drug-resistant. Another 10% continued to have seizures because of failure to take medication as prescribed, too low a prescribed dosage, or a lifestyle that included too many seizure triggers.
None of the patients with drug-resistant JME in Gelisse's study had only myoclonic jerks or the combination of absence seizures and myoclonic jerks. Instead, 63% of these patients had all three types of seizures. Psychiatric disorders were found in nearly 60% of the patients with poorly controlled seizures but in less than 20% of patients with well controlled seizures. Personality disorders (especially borderline personality responsible for social maladjustment) were the most frequent type of psychiatric problems found, affecting 25% of resistant cases and 10% of nonresistant ones.
Does control change over time?
JME almost always requires lifelong treatment. The frequency of seizures may fluctuate, however. Some patients with a less severe form may have short periods of worsening. Others, whose seizures are more difficult to treat, may later experience spontaneous improvement in seizure control.
For example, one patient experienced his first seizure at age 16. He was started on Depakote and stopped having seizures. But when he was 27, his epilepsy became active again and did not respond to several medications, with no apparent explanation.
Further study is necessary to identify the clinical significance of seizure recurrence in JME.
Find out more
Here are links to two articles on this topic:
Dasheiff RM, Ritaccio AL. Characterization of intractable juvenile myoclonic epilepsy: new perspectives on primarily generalized seizures. Seizure 1993 Mar;2(1):11-9.
A study of 12 patients with intractable juvenile myoclonic epilepsy lasting for many years.
Gelisse P, Genton P, Thomas P, Rey M, Samuelian JC, Dravet C. Clinical factors of drug resistance in juvenile myoclonic epilepsy. J Neurol Neurosurg Psychiatry 2001 Feb;70(2):240-3.
A study from France of 155 newly diagnosed JME patients followed for an average of 13.5 years in the 1980s and 1990s. A significant subgroup presented difficult therapeutic problems.

Complex Partial Seizures
In these types of seizures a person's consciousness is altered. This alteration of consciousness during a complex seizure does not mean the person falls to the floor but it does mean they will not remember the seizure or their memory of it will be distorted. However, to onlookers it may seem that the person is fully aware of what they are doing.
Complex partial seizures can take the form of 'automatisms' such as chewing and swallowing, repeatedly scratching the head or searching for an object. Some people may even undress. Occasionally, a person may wander off, recovering full awareness minutes or even hours later, unable to remember anything.
Complex partial seizures can spread to the rest of the brain. When this happens the resulting seizure is called a secondary generalized tonic-clonic seizure. If the spread of activity happens quickly it may appear to be a straightforward tonic-clonic seizure, all adding to the difficulties the doctor faces when trying to make a diagnosis of the seizure type. The brain is a very complicated mechanism, and it is not always as easy as it seems to decide on which area of the brain is the origin of someone's seizures.
Partial seizures can occur as a result of epileptic activity in any part of the brain but they most commonly originate in the temporal lobes.
The temporal lobes
If you are not sure where you temporal lobes are, place the palms of your hands on your temples with your index fingers and thumbs covering the top of your ears and the hands cupping the skull, pointing towards each other. Your hands are covering the temporal lobes. It is thought that the most common cause of epilepsy originating in this area is scarring on the brain as a result of head injury, infection or oxygen deprivation. This area is also the most common for small malformations which would not be noticed if they did not cause epilepsy. The temporal lobes are responsible for many functions, for example, registering and remembering information, receiving sound and smell, the production of speech and the emotions.
Typical symptoms of epileptic activity in the temporal lobe area are flushing or sweating, going very pale, or a churning feeling in the stomach. People's perceptions can be changed: some think things are smaller or smaller than they really are; others experience hallucinations. This does not only mean seeing things that are not really there, it can also mean smelling nonexistent odors or hearing something that other cannot. Other symptoms can be feelings of fear, panic, sadness or happiness, or feeling detached from one's environment. This can be frightening and difficult to explain. A common symptom is the experience we all know as deja vu, when we are convinced we have been somewhere or witnessed something before. Conversely, some people find very familiar things become unrecognizable - jamais vu. 
Simple Partial Seizures
The difference between complex partial and simple partial seizures is that, during simple partial seizures, the person remains conscious and fully aware. However this does not mean that the person experiencing this type of seizure is able to stop or control the symptoms.

The electrical activity which causes a simple partial seizure is confined to one small part of the brain. What a person experiences during one of these seizures depends on which part of the brain is affected.
  • The temporal lobe
  • The frontal lobe
  • The parietal lobe
  • The occipital lobe

What to do
Secondary generalization
The temporal lobe

If a simple seizure originates in the temporal lobe, quite a wide variety of symptoms can occur. This is because the functions of the temporal lobe are quite varied. As with all types of epilepsy, each person is different and straightforward comparisons are not always possible.
Usually, someone having a simple partial seizure originating in the temporal lobe will experience an intense feeling, for example, sudden fear or happiness. They may have an extremely vivid memory flashback or strong sense of déja vu. Unpleasant smells or tastes and an unpleasant sensation in the stomach are also possible symptoms.
These symptoms are often called an aura and can act as a warning for people with complex partial seizures. During simple partial seizures, the person remains fully conscious and the seizure is usually very brief. Often it is only the intensity and suddenness of these feelings that differentiates between someone having a usual déja vu experience, for example, and someone having a simple partial seizure.
The frontal lobe
If a seizure originates in the frontal lobe, the person will experience a totally different set of symptoms. Because this area of the brain deals primarily with movement, the symptoms are sometimes called motor seizures.
The person may feel their head drawn to one side. Sometimes their arm or hand becomes stiff and is drawn upwards. Some people then experience some jerking movements in that limb. If this symptom spreads to other parts of the body it may be what is called a Jacksonian seizure, a very rare type of seizure named after British neurologist, Hughlings Jackson. Sometimes this can spread to the rest of the brain and become a tonic-clonic seizure.
If a persons head is drawn to the left or it is the left hand or arm affected by the seizure, this means that the epileptic activity is occurring in the right frontal lobe and vice versa. Because this lobe also controls part of our speech, some people experience speech arrest, resulting in an inability to talk or not being able to be understood.
After this type of seizure, which again is usually only brief, the person can experience a short period of weakness. In rare instances people can be briefly paralyzed and this is known as Todds paralysis.
The parietal lobe
The parietal lobe deals with our bodily sensations and simple partial seizures beginning in this part of the brain cause strange physical sensations. A tingling or warmth down one side of the body is typical. Because the parietal lobe is closely associated with the frontal lobe, people sometimes experience movement too. Known as sensory seizures the after effect can be a period of numbness which wears off after a while.
The occipital lobe
The fourth area of the brain which can be the source of a simple partial seizure is the occipital lobe, responsible for our vision. It follows, therefore, that the symptoms of these seizures are to do with the way we see things. Flashing lights, balls of light or strange colors are typical symptoms, affecting half of the vision. Again, this occurs in the opposite side of the body to the lobe where the seizure originates.
The brain is a very complicated mechanism, and it is not always as simple as it seems to decide which area of the brain is the origin of someones seizures.
What to do
Because people experiencing simple partial seizures remain conscious, they can find the experience distressing or upsetting. Children, particularly, can be worried about what is happening to them.
As with all seizures, it is important not to restrain the person, but reassurance that all will soon be well can be very important. They can hear you and respond to you. Stay with the person and remember that they may need a period to fully recover. If the person has not had this experience before they should make an appointment with their doctor.
Secondary generalization
Sometimes, the activity that starts a simple partial seizure can spread to the whole brain and result in a tonic-clonic seizure. This is known as a secondary generalized seizure.
Often the person will experience the simple partial seizure as an aura or warning, but sometimes the spread of epileptic activity can be so quick that the person appears to move straight into a tonic-clonic seizure. This can cause problems with diagnosis, until the necessary scans are done and the specialist can see where the activity first occurs.
Tonic-Clonic Seizures
Generalized seizures involve the whole brain and the most common generalized seizure is called a tonic-clonic seizure. Ask most people to describe an epileptic seizure and you call almost guarantee they will describe a tonic-clonic seizure. Briefly, the person goes stiff, falls to the ground and then they will remain still before slowly coming round.

The apparent violence of movement and the lack of control in these seizures is at the root of much of the myths and stigma that, even today, surround epilepsy. However, tonic-clonic seizures are amongst the easiest to diagnose, can be the easiest to treat and can easily be handled by those witnessing them.
What happens?
The term tonic-clonic seizure is a bit of a mouthful but, in medical terms, accurately describes what happens. The old terminology was grand mal and some doctors still use this term. The tonic part of the seizure is when the person goes stiff. The brain cells are connected to other nerve cells through the spinal cord and when a tonic-clonic seizure begins this communication system triggers all the bodys muscles to contract.
As well as the body going stiff, the result of the muscles in the lungs contracting forces air out, sometimes causing the person to appear to cry out. Breathing may stop for a short while and because the oxygen in the blood then gets used up, the person may go blue - a process called cyanosis. Occasionally, if the persons bladder is full, they may urinate.
After only a minute or so, the clonic phase of the seizure begins. This refers to the jerking movements with which we are familiar. The limbs jerk because now the muscles contract and relax in quick succession. During this period the person may bite their tongue or the inside of their cheek.
After a further minute or so, the muscles relax and the persons body goes limp. At this stage the person is deeply unconscious and no amount of shouting or anything else will rouse them. Slowly they will regain consciousness, but they will be groggy and possibly confused. The persons behavior will gradually return to normal but they may not be able to remember anything for a while. Very often the person remains sleepy, and may have a headache and aching limbs.
The recovery time differs from person to person; some people will want to get back to their daily routine, others will need a short sleep and some will require plenty of rest. The whole seizure usually only lasts a minute or two, but if a seizure lasts more than, say, five minutes or if it is the first time the person has had a seizure, medical assistance should be sought at once.
Tonic-clonic seizures can be distressing to witness, especially in loved ones and children, but understanding what is happening does help and is a useful way to help family and friends learn to handle any initial misgivings.
What about a warning?
One important difference between some partial seizures and this type of seizure is that there is no warning beforehand, known as an aura. This obviously has its drawbacks as the person does not have a chance to ensure their safety beforehand. Unfortunately, it is this lack of warning which can result in some of the more frightening accidents, which is why people who have this type of seizure need to be a little more safety conscious.
Having said there is no warning, many people report a general feeling of not being quite right in themselves. Some report a sense of heaviness or depression, often some hours before they have a seizure. Doctors call this a prodrome and, if a person can learn to recognize it, it can be a useful guide.
To confuse the issue even further, some people who have tonic-clonic seizures do have auras but this is because they have had a partial seizure which has then spread to the whole brain, resulting in a generalized seizure. This is called a secondary generalized seizure. Sometimes the partial seizure spreads so quickly that nobody is aware it is happening and, in this case, it appears that the person is having a primary generalized tonic-clonic seizure. This is one of the reasons why diagnosing the different types of seizure and then effectively treating them is so difficult.
The causes
When giving a diagnosis, the doctor may use one of the following terms: idiopathic, cryptogenic or symptomatic. This provides us with a hint as to the reason a person has epilepsy.
Idiopathic- this means no known cause.
Cryptogenic - this means there is a cause but that cause is not, as yet, known.
Symptomatic - this means that the doctor can identify a cause for the seizures.
In many cases of generalized tonic-clonic seizures, the term idiopathic is used, because there is no obvious damage to the brain causing the epilepsy. This is why, unfortunately, people with this type of seizure are very rarely suitable candidates for epilepsy surgery - there is no damaged area or scar tissue to remove.
While this may be bad news the future is not all gloomy. The vast majority of people who have only generalized tonic-clonic seizures will, with the correct diagnosis and treatment, be able to achieve good levels of seizure control and many will achieve total control.
What to do
According to studies, 35 per cent of people with epilepsy experience generalized tonic-clonic seizures, with a further 27 per cent having secondary generalized tonic-clonic seizures. Thats over 60 per cent of all people with epilepsy. An impartial reader might, therefore, expect that the population as a whole would be used to seeing these seizures and know exactly what to do. Sadly, this is not so.
Another common misconception is that something must be put between the persons teeth to stop them swallowing their tongue. Epilepsy Action has heard of peoples teeth being broken because shoes and other inappropriate things have been forced into their mouths.
It cannot be emphasized too much that you should NEVER put anything in someones mouth if they have a seizure. It is medically impossible to swallow your own tongue and, as long as the person is put into the recovery position when their muscles relax, they will not choke.
Other Generalized Seizures
Primary Generalized Seizures
See tonic-clonic seizures.
Myoclonic seizures or jerks
Most people have experienced a sudden jerk as they are falling asleep or have jumped when someone leaps out as them unexpectedly and this is similar to the jerks experienced by someone who has myoclonic seizures.  The term myoclonic comes from 'myo', meaning muscles, and 'clonus', meaning jerk.  Caused by a sudden contraction of the muscles, it can affect the whole body but it is usually restricted to one or both arms and sometimes the head.  As in absence seizures, the person is not conscious, but the seizure is so brief that the person appears to remain fully conscious.
Myoclonic jerks occur most frequently in the morning.  Although the seizures are brief, they can be extremely frustrating, resulting as they often do in spilt drinks or similar 'accidents'.
Some people who experience these seizures have Juvenile Myoclonic Epilepsy and in these cases there is often a family history of a similar condition.
Tonic and atonic seizures
Tonic seizures result in all the muscles contracting.  The body stiffens and the person will fall over if unsupported.
Atonic seizures (also called 'akinetic' seizures) are, in a way, the opposite of tonic seizures.  Instead of the body going stiff, all muscle tone is lost and the person simply drops to the ground, hence their other name 'drop attacks'.  Although the person falls heavily, they are usually able to get up again straight away.  When the body goes limp it inevitably falls forward and the person's head can get a serious knock if the seizures occur frequently. For those who have frequent tonic or atonic seizures, extra safety precautions - such as protective headgear - make sense. 
Secondary Generalized Seizures
Sometimes, the activity that starts as a simple partial or complex seizure can spread to the whole brain resulting in a tonic-clonic seizure. This is known as a secondary generalized seizure. Often the person will experience the simple partial seizure as an 'aura' or warning but sometimes the spread of epileptic activity can be so quick that the person appears to go straight into a tonic-clonic seizure. This can cause problems with diagnosis of the seizure type until the necessary tests are done and the specialist can see where the activity first occurs.
Non-Epileptic Attack Disorder
Not all seizures are epileptic in origin. This is why, when making an initial diagnosis doctors will conduct various tests to rule out other causes. People with epilepsy can experience non-epileptic seizures as well. This page looks at cases where the non-epileptic seizures appear regularly and similarly to those in a person with epilepsy.
Non-epileptic seizures are also sometimes referred to as non-organic seizures, pseudo-epileptic seizures, pseudoseizures, psychogenic seizures or Non-Epileptic Attack Disorder. These seizures are identical to epileptic seizures, but the difference is that they are not epileptic in nature.
Non-epileptic seizures can be symptoms of various psychological factors, specific to the person concerned. The management of non-epileptic seizures will therefore need to be considered on an individual basis and the options discussed with the epilepsy specialist.
It is important to take notes of all the circumstances surrounding undiagnosed seizures, together with careful descriptions of what happens, how long the seizure lasts, how the person feels etc. Every piece of information can help the doctor make an accurate and informed diagnosis and this, in turn, ensures that the patient receives the correct treatment.
Absence Seizures
Absence seizures belong to a group of seizures called generalized seizures. Generalised seizures affect the whole brain.
Abscence seizures used to be called petit mal, which roughly translated means small illness. This name makes them sound fairly harmless and, for many, they are little more than an occasional nuisance. However, when they occur frequently they can make life very confusing.
During an absence seizure it can appear to onlookers that the person is daydreaming or switching off, something we all do when we are bored or distracted. However, in an absence seizure the person cannot be alerted or woken up; they are momentarily unconscious and therefore totally unaware of what is happening around them.

Absence seizures are rare in adults, most commonly beginning between the ages of six and twelve. Girls are more prone to absences than boys. Most seizures respond well to anti-epileptic drug treatment. Some children may go on to experience tonic-clonic seizures later in life; others 'grow out' of their epilepsy. Like many generalised seizures, doctors can rarely say why a child develops absences, although between 25 and 40 per cent of children with absences have relatives who have experienced similar seizures.
Because most children tend to daydream or wander off into a world of their own, absences can be very hard to spot. Parents and teachers tend to lose patience with children unless it becomes obvious that something more serious is happening. In the worst cases, children can be having hundreds of very brief absence seizures a day. This will prevent them learning and participating in school or family activities. These children are missing out on tiny pieces of information; they might hear the first part of a sentence but not the end; hear the instruction to go out and play but not the instruction to be back in ten minutes. This can be easily misinterpreted as misbehavior.

Seizure Chart

Type of seizure

What might happen

What to do

Generalized seizures

The most common sort of generalized seizure - used to be known as Grand mal.

You lose consciousness.

Tonic phase - The muscles contract, the body stiffens and then - Clonic phase - jerks uncontrollably. You may let out a cry as air is forced out of the lungs and the lips may go blue due to lack of oxygen.

When you come round you cannot remember anything. You will need time to recover - from minutes to, in some, hours.

Do not try to restrain the person. Clear away possible risks - sharp edged furniture etc.

Cushion the persons head when they fall and, when the limbs stop jerking, put the person in the recovery position.

Do not put anything in the persons mouth.

Do not try to give the person anything to drink until they have regained consciousness.

Be quietly reassuring and stay with them until they have recovered.

Do not call for medical help unless the seizure lasts more than 5 minutes or they are injured.

Absence This generalized seizure is literally an absence - a momentary lapse in awareness - used to be called "Petit Mal.

More common in children and teenagers.

You stop what you are doing, stare, blink or look vague for a few seconds before carrying on with what you were doing. Onlookers may think you were just daydreaming or may not notice.

Do not try to wake up the person.

Tell them what has happened while their seizure was happening - particularly important for children during lessons.

Other generalized seizures These include atonic seizures (drop attacks) and myoclonic seizures which cause brief forceful jerks.

Atonic seizures can cause injury - an increased awareness of safety is vital if this type of seizure occurs regularly.

In some instances protective headgear may be appropriate.

Type of seizure

What might happen

What to do

Partial seizures
Simple partial Occurs in just part of the brain - type of symptoms depend on the area of the brain involved.

Symptoms include one or more of the following: twitching, numbness, sweating, dizziness, nausea, disturbances to hearing, vision, smell or taste, strong déja vu etc.

These symptoms last for several seconds and then go away. You remain fully aware.

These seizures often progress to other types of seizure and can therefore act as a warning or aura.

Do not try to restrain the person.

Stay with the person and be reassuring until the symptoms go away.

Be aware that the person may go on to have a complex partial or tonic-clonic seizure - be ready to move any sharp objects, furniture etc, to prevent injury.

Complex partial This common form of seizure includes temporal lobe epilepsy.

You may appear to behave strangely - plucking at your clothes, smacking lips, swallowing repeatedly or wandering around as if drunk - these actions are called automatisms. Other symptoms are similar to simple partial seizures but you will not remember them afterwards.

You are not aware of your surroundings or of what you are doing.

Do not try to restrain the person but gently try to steer them away from any unsafe situations.

Do not try to wake them.

Stay with the person, being gently reassuring, until the person has recovered.

The person may need to rest for a while.