Living with Epilepsy

• Provide your child with a quiet area to do their homework.
• Reduce visual and noise distractions while your child works on a task.
• Alternate recreation and work.
• Use a blank sheet to cover the working sheet and move it to reveal one question at a time. This helps reduce visual distractions.
• When your child engages in an activity for a longer period of time, encourage them.
• If your child is hyperactive as well, integrate movement (eg. jumping, drawing) into learning.

• Create a school intervention plan to inform teachers and school management about the child’s needs. Revisit the plan after six months. Contact teachers, school staff, and parents monthly to discuss the child’s progress.
• Cut back on optional courses or coursework to provide the student with more time to work on essential course material. Stay close to the child while providing explanations and use their material to give examples.
• Remove class distractions whenever possible.
• Encourage the student to actively participate in the class. This will help maintain their attention.
• Establish a signal with the student so you can alert each other when the child is unfocused or is having difficulty in the class.
• Use the student’s first name in examples.
• Keep instructions short.
• Break long instructions into shorter segments. Present the segments one at a time for each step in the activity instead of all together at the beginning.
• Evaluate the child using a series of short tests over several days instead of one long test.
• Place the child’s desk at the front of the class, close to the teacher and far from distracting windows and doors.
• Pair the student with a partner who could help, with whom they have a good relationship.
• If the student struggles with hyperactivity as well as attention deficit, assign the student tasks that will get them moving around (eg. bring items to the teacher’s desk, take messages to the office).

As with many other prescription drugs, alcohol increases the sedative effect of many anti-seizure medications while also significantly lowering one’s tolerance to alcohol. Rapid intoxication can be very harmful, as many of the side effects can be made worse by these medications. The rate of absorption of anti-seizure medication in a person with epilepsy has been shown to differ quite substantially, depending on the drug type.

• The effects of carbamazepine and phenobarbital are reduced when alcohol is ingested.
• The mixture of divalproex sodium with alcohol causes severe depression of the central nervous system.
• Alcohol will upset the blood serum level of phenytoin: acute alcohol intake will increase the blood serum level, while chronic alcohol intake will decrease blood serum levels.

Anxiety

Everyone experiences feelings of anxiety such as worry, stress, and nervousness from time to time. For people with epilepsy, it’s normal to worry about the possibility of having a seizure or to find it stressful coping with the impact of epilepsy. These experiences become problematic when the feelings are frequent or intense, are produced by trivial things or nothing at all, and interfere with our functioning. Anxiety disorders are more common among people with epilepsy than in the general population, and anxiety can have an enormous impact on the quality of life for someone with epilepsy. Anxiety can also affect memory, the experience of medication side effects, and seizure control. Despite this impact, anxiety is often under-recognized and under-treated in people with epilepsy. It’s important to talk to your healthcare provider if feelings of anxiety or stress are interfering with your ability to work, study, socialize, or manage daily tasks.

• Cognitive: Anxious thoughts, predictions, and beliefs (eg. “I’m going to have a seizure at the party, everyone will laugh at me, so I won’t attend”).
• Physical: Pounding heart, sweating, nausea, dizziness, muscle tension, shortness of breath. It’s possible for these physical symptoms to be mistaken for a seizure, or for a seizure to be incorrectly identified as anxiety.
• Emotional: Feelings of fear, stress, nervousness.

• It isn’t well understood why anxiety is more common in people with epilepsy, who can experience a complicated mix of anxiety symptoms. Anxiety-related to epilepsy may be caused by a variety of factors:
  • Anxiety can be a part of seizures themselves. This may occur at the start of a seizure, during a seizure, or immediately afterward. For example, some people who have focal seizures feel sudden fear at the start of a seizure.
  • Anxiety may result from the psychosocial impacts of having epilepsy, including the stress of an epilepsy diagnosis or the worry or fear of having a seizure.
  • There may be associated neurological or psychiatric disorders.
  • Genetics may play a role.
  • Underlying brain mechanisms related to epilepsy may also influence anxiety.
  • Effects of medication.

There hasn’t been a lot of research showing what treatments are most effective for people with epilepsy and anxiety. Generally, many psychological treatments, such as relaxation training, meditation, biofeedback, and stress management, can help with anxiety disorders. Many people also benefit from supportive counseling or couples or family therapy. One of the most common forms of treatment for anxiety disorders is cognitive-behavioural therapy (CBT). Medications may also help, and many people receive CBT and medication in combination.

STRATEGIES FOR COPING WITH ANXIETY:

There are many strategies to try when you are feeling anxious or stressed. These ideas may work best if you do them regularly.

• • Try relaxation techniques such as muscle relaxation or breathing exercises. Try taking steady breaths that are not too deep or too fast. Do this several times to feel calmer.
  • Focus on something enjoyable that distracts you: music, a picture, an activity.

Regular exercise helps keep you fit and can improve sleep. It can contribute to a sense of well-being by providing a break from day-to-day worries and by giving a sense of control and achievement. Gentle movement, such as simple stretching, can relax and calm the body.

• • Eat a healthy, well-balanced diet. Limit caffeine, alcohol, and nicotine.
  • Plan small, achievable tasks for each day.
  • Talk to someone. Tell friends and family how you’re feeling, and let them know how they can help you. Talk to a social worker or counsellor.
  • Learn what triggers your anxiety. Write in a journal when you’re feeling stressed or anxious, and look for a pattern.

Anxiety and depression can also happen together. For more information about depression and epilepsy, see our resource sheet Epilepsy and Depression. For help in finding mental health services in your community, call the Mental Health Helpline at 1-866-531-2600 or visit www.mentalhealthhelpline.ca

• Work with your healthcare provider to get your seizures under control

Be straightforward about epilepsy with your child. A diagnosis of epilepsy may result in your child experiencing low self-esteem, anxiety, anger, or a feeling of powerlessness. In some cases, a child may even develop a fear of dying. Encouraging openness and discussing these reactions with your child may help to build your child’s self-esteem. Parents may also help to alleviate some of the child’s concerns by assuring that the child knows the seizures are not anyone’s fault and it is extremely rare for a child to die of epilepsy.

There is an increased risk of depression in people with epilepsy. Depression may be a side effect of medication, or it may occur just before, just after, or between seizures. Depression may also be a reaction to the insensitivity of others or of living with the constant fear of having a seizure.

Even if their seizures are effectively controlled by medication, children may be concerned about having a seizure in public. Children are often afraid of being different. They may be reluctant to take medication while with others.

Explaining to your child that other children may also have conditions (e.g. food allergies or asthma) that could require medication and/or lifestyle changes may help your child to understand.

Talking with your child about his or her feelings is important. If depression is ongoing or is hindering your child’s enjoyment of life, discuss this with your child’s doctor.

Being too overprotective can hinder your child’s emotional development. If a child learns to be fearful or is continually being restricted, he or she may develop a dependency that will continue into adulthood. By encouraging a child to view seizures as a temporary inconvenience and, by encouraging participation in activities, you may help your child to develop the confidence to become an independent adult.

Depending on the type and frequency of your child’s seizures, it may be important to inform others about your child’s condition.

We advise that you inform caregivers, teachers, or neighbors who are responsible for your child as it is essential that they know how to help should your child have a seizure.

Parents should also tell people who are often with their child such as relatives, good friends, and their parents.

Older children and adolescents should be allowed to be involved in decisions regarding who should be told and how.

As with any child, try not to use labels when talking about your child (e.g. epileptic). Your child has epilepsy but the condition is only one facet of your child’s life.

Discuss epilepsy with the members of your family. Siblings may have fears such as whether or not they will get epilepsy or they may feel jealous or resentful because of the extra time or attention given to the child with epilepsy. These concerns should be addressed and discussed.

Treating the child with epilepsy like other members of the family with respect to responsibilities may be helpful in creating a positive family environment. Siblings should not be expected to be constant caregivers of a child with epilepsy but they should know what to do should a seizure occur.

In some families, older relatives misunderstand the condition partly due to historical misconceptions. Sharing information on the condition with family members will help them to better understand epilepsy.

• Paying attention and concentrating
• Understanding instructions
• Using information
• Describing things to other people
• Remembering things
• Working out how to do something new
• Organizing thoughts or tasks
• Feeling you have no energy to do things
• Feeling muddled or confused
• Feeling sad or tearful
• Feeling short-tempered or grumpy
• Working out sums
• Writing or copying figures
• Developmental delays

Frequency of seizures

• A child who is experiencing frequent seizures, may not fully recover between seizures.

Location of seizure activity in the brain

• When seizures are focused in a particular area of the brain, they may also affect functions controlled in that part of the brain.

Type of seizures

• When a child loses consciousness during a seizure, their mental functioning can be disrupted for up to several days.
• Absence seizures appear to disrupt short-term memory for information presented immediately before the seizure.
• Tonic-clonic seizures are followed by a period of drowsiness or inattentiveness.
• Research has shown a correlation between cognitive/behavioural problems and complex partial seizures.

Medication side effects

• Some anti-seizure medications may make some children tired, less alert, or hyperactive.
• Someone taking more than one anti-seizure medication is more likely to experience negative side effects than someone taking a single antiseizure medication.
• Herbal remedies can interact with prescribed medications in ways that will disrupt learning.

Age of onset

• Some anti-seizure medications may make some children tired, less alert, or hyperactive.

Type of epilepsy syndrome

• Some epilepsy syndromes (e.g. Lennox-Gastaut Syndrome) involve learning and thinking difficulties.

Epileptic (interictal) discharges

• Some children appear to be seizure-free but may be experiencing epileptic discharges in the brain; this is called interictal discharges or sub-clinical seizures.
• Interictal discharges may produce restlessness, distractibility, inability to focus, decreased capacity for taking in new information, and behavioural disturbances.
• The underlying neurological problem causing the seizures can also impact learning and behaviour.

Other related conditions

• There are a number of other conditions that are more likely to occur in people with epilepsy than the general population, including Attention-Deficit Hyperactivity Disorder (ADHD), Learning Disabilities, and Autism Spectrum Disorders.

• Establish a routine.
• Teach your child to use a calendar and a diary.
• Develop time management strategies.
• Teach your child to use an alarm to help them remember when it’s time to start a task.
• Write down the steps to complete tasks, review it with your child, and make it available for your child when they complete the tasks.
• Encourage your child to initiate tasks on their own.
• Teach your child to break down tasks into a series of steps before they begin.
• Help your child gather the things needed to complete a task before they begin the first step.

• Keep instructions short.
• Break long instructions into shorter segments. Present the segments one at a time for each step in the activity instead of all together at the beginning.
• Highlight the most important instructions in tests.
• Provide your student with more time to complete tests and other evaluations.
• Read test questions aloud or allow your student to read the questions to you.
• Teach your student exam strategies (e.g. leaving tougher questions for the end of the exam, highlighting important information, using process of elimination for multiple choice questions).

• Please visit our Student Support Program Page for more information on services offered in schools
• For more info on children with ADHD who have epilepsy, check out or ADHD tab.
• For more information on memory in children with epilepsy check out our memory (children) tab.

Most people feel sad or down from time to time. Although we may casually refer to this as “being depressed”, it is not clinical depression. When someone experiences certain symptoms almost every day for at least two weeks, they may be clinically depressed. These symptoms include:

• Depressed mood
• Weight gain or loss
• Insomnia or hypersomnia
• Restlessness or lethargy
• Worthlessness or feeling guilty
• Decreased interest or pleasure
• Difficulty concentrating or making decisions
• Recurrent thoughts of death and suicide

These symptoms may be so debilitating that they interfere with a person’s quality of life. Being depressed can impact a person’s ability to care for themselves, perform their job, and maintain healthy relationships. They often experience feelings of deep gloom and hopelessness. When experiencing depression, some people with epilepsy will have difficulty coping, feeling motivated to get out of bed, remembering things, concentrating or taking anti-seizure medications.

When receiving treatment for depression in people with epilepsy, initial steps should involve the optimization of seizure control. People who are known to have controlled or fewer seizures are less likely to be depressed. Depression is best dealt with when detected and treated early on.

• Therapy: There are a number of forms of therapy that can help people with mild depression, including psychotherapy, supportive therapy, cognitive therapy, interpersonal therapy, group therapy, or family therapy. A health care provider can help a person with epilepsy and depression decide which form of therapy best suits them.

We recommend that you visit this link for Community Mental Health Programs in Southwestern Ontario: http://www.southwesthealthline.ca/listServices.aspx?id=10237.

• Medication: People with epilepsy and depression may benefit from a combination of therapy and antidepressants. Some newer antidepressants are even associated with increased seizure control. Several factors must be considered when contemplating anti-depressants for treating depression, including the effects of medication on the seizures and the interaction between antidepressants and the anti-epileptic drugs. People who have epilepsy should consult with their neurologist to discover the most effective forms of treatment.
• Lifestyle changes and support team: Along with therapy and medication, doing things you enjoy, eating well, exercising, and avoiding alcohol and non-prescription drugs can help improve your mood. Developing a support team is a very important part of treating depression in people who have epilepsy. This may include a counselor, social worker, or epilepsy nurse. These individuals may be able to aid in teaching coping skills that can help to improve mild depression or anxiety. Coping skills may help some people reduce the number of seizures that they have. Support groups, where people can meet and share their experiences, also help people manage their depression.

• Some people experience depression after a seizure. This is called post-ictal depression.
• Seizure-related factors:
  • People who have epilepsy are more likely to suffer from depression if their seizures originate in the frontal and temporal lobes of their brain. People with temporal lobe epilepsy may be more likely to experience depression because the seizures begin in the area that primarily regulates mood. People who have generalized seizures are less prone to suffer from depression. Occurrence of seizures is also a risk factor, as people who have seizures frequently are more at risk of depression than people who have well-controlled seizures
• Psychosocial factors:
  • People who suffer from epilepsy are prone to discrimination within society. People who have epilepsy may feel depressed due to the stigma associated with the disorder, lack of social support, and certain lifestyle adjustments that interfere with a person’s independence. This includes: suspended driving privileges, restricted educational or employment opportunities, or having to change careers or jobs. Sexual dysfunction is also a prevalent problem for people who have epilepsy. All these factors diminish an individual’s sense of control and independence, resulting in a decreased self-esteem and the development of depression.
• Latrogenic factors:
  • Depression can be a side effect of some anti-seizure medications (Phenobarbital, Vigabatrin, Lamotrigine, and Phenytoin). However, other anti-seizure drugs such as Carbamazepine and Valproic Acid can improve one’s mood. The cognitive side effects associated with anti-epileptic drugs are closely associated with depression.

• Talk to a health care provider about your depression. They may refer you to a psychiatrist, neuropsychiatrist or a psychologist with experience treating depression.
• Seek support from friends, family, and health care workers such as nurses, social workers, and counsellors.
• Avoid isolation.
• If you are in crisis, contact your health care provider and go to your nearest hospital emergency room.

• If anti-epileptic drugs appear to prevent your seizures
• You have had no seizures for the past 12 months
• Your medication does not cause drowsiness or poor coordination
• You are under medical supervision; your neurologist believes that you have been taking your medications regularly and that you will report any new seizures to him/her
• You have had only 1 seizure medically proven (through a full neurological examination) unrelated to epilepsy
• You have only had seizures while sleeping or directly after waking for over 5 years
• After being seizure-free for one year, your medication dosage (under the supervision of your neurologist) is reduced and a seizure occurs. You may continue to drive only after your prescribed dosage is elevated back to its original level.

• Anyone who has had a seizure within the past 12 months
• If you are taking anti-epileptic drugs which have side effects of drowsiness or poor muscle control
• If you persistently drink excessive amounts of alcohol and do not fully comply with your physicians prescribed treatment

If your job requires you to drive a commercial vehicle, you must be seizure free for 12 months and not be prescribed any anti-seizure medications.

You are required by law to immediately report to your neurologist and the Ministry of Transportation any changes in physical or mental health that could impair you while driving.

Section 203 of the Highway Traffic Act states that “every legally qualified medical practitioner shall report to the Registrar the name, address and clinical condition of every person sixteen years of age or over attending upon the medical practitioner for medical services, who in the opinion of such medical practitioner is suffering from a condition that may make it dangerous for such a person to operate a motor vehicle". This statute overrides the normal rule of patient/physician confidentiality.

If your neurologist decides that you are no longer fit for driving and sends in a report to the Ministry of Transportation, you will either receive a letter asking you to provide detailed medical information or receive a notice of a suspended license and a letter explaining the reasons behind the suspension.

It is important to note that many hospital/clinic physicians may call for a suspended license on initial observations (for safety measures) but after a thorough investigation, a suspension may not be justified. The reports from hospital/clinical physicians are treated with the same level of importance as a report from your own doctor.

Yes! At any time during the process, you can appeal the decision. You have several options:

• The first step is to respond to the letter from the Ministry of Transportation with further medical information. In the letter containing the suspension, a detailed explanation will be provided, along with information about what is required for reconsideration. Speak with your neurologist to decide whether submitting further medical information will help further your case. Note: When submitting further medical information be sure to provide all the details of your condition (history, treatment, compliance with doctors’ orders, control, and results from any tests). The ministry will not reinstate a license without complete disclosure of your condition and its stability.
• If you are not comfortable working with your neurologist, and would like to have the chance to discuss your case face to face with the ministry, you may set up an appointment for an administrative review. This is your chance to provide any information you feel was not considered or was not known during the original decision on your case. Another option is to put your case on paper and send it directly to the Ministry of Transportation for review.
• If all of the above steps have failed, you may proceed to a more formal hearing in front of the “License Suspension Board". At this hearing you may want formal representation (e.g. a lawyer), or you can submit the case in written form or represent yourself.
• If you are still unsatisfied with the outcome, you may take your case to the local county or district court.

Driving without a license is a criminal offense and carries a hefty fine of $2000, an extended suspension, and sometimes even jail time. Keep in mind that once your license is suspended, your license plates are kept on police record. If you do get into an accident, whether or not caused by epilepsy, your insurance company will no longer cover the costs and you will most likely end up in a civil lawsuit, perhaps facing financial ruin.

Unfortunately, ESWO is not equipped financially or with the personnel (lawyers) to help people appeal for their licenses. What we can do is help you understand the appeal process and how and when to approach the ministry. We can also connect you with people who have had similar experiences and have gone through the process.

The majority of people with epilepsy find their seizures do not prevent them from having fulfilling jobs and promising careers. Unfortunately, some have a much harder time gaining seizure control and face many more challenges in the workplace.

For people who find it difficult to gain seizure control, finding and keeping a job can be one of the toughest challenges they face. Having a job is important for financial independence, raising self-esteem, and supporting a family. Unfortunately, up to 50% of people with epilepsy experience difficulty finding and keeping a job. Of those who find a job, 30% are under-employed or unemployed. Underemployment and unemployment are far higher among those with epilepsy than the general population for several reasons, including:

• Lack of training, skills, or experience
• Lack of transportation
• Negative attitudes of employers towards people with epilepsy
• Negative attitudes of co-workers towards people with epilepsy
• Safety concerns within the workplace

In 1993, Ontario passed the Employment Equity Act to protect the rights of, and provide equal employment opportunities to, those with disabilities. The Act covers all areas of the workplace including recruitment, selection, retention, treatment, and promotion.

According to the Employment Equity Act, a person with a disability is:

• A person who has a persistent physical, mental, psychiatric, sensory or learning impairment and who considers him/herself to be disadvantaged in employment because of that impairment, or
• Someone who believes that an employer is likely to consider them to be disadvantaged because of that impairment.

To view the act in detail, visit http://laws-lois.justice.gc.ca/eng/acts/e-5.401/index.html. All people, including those with disabilities have a right to equal treatment in the workplace without barriers whether they are systemic or deliberate. Many people with epilepsy who bring strong assets or skills to the workforce may feel they are often denied job opportunities simply because they have epilepsy.

If you believe you have been discriminated against or harassed on any grounds covered by the Human Rights Code, you may make a formal complaint to the Ontario Human Rights Commission.

Human Rights Officers are available to discuss the problem. They are required to accept the complaint of any person who believes that their rights (under the Code) have been infringed. Once the complainant completes, signs, and registers a complaint, it becomes official and Officers will investigate.

A Fact Finding Conference may be held after the complaint has been served, and the respondent has had an opportunity to reply. Following this conference, there may be an opportunity for a settlement discussion if the complainant, respondent, and OHRC representative feel it is appropriate. In many instances, they can agree on a settlement.

A case that cannot be settled may be referred to a Human Rights Tribunal. The Tribunal reviews the complaint, makes a decision, and orders a settlement. Both parties may either accept that decision or appeal it.

If they choose to appeal, the Federal Court hears the appeal and makes a decision. If both parties do not accept this decision, they may choose to appeal to the Supreme Court, which makes the final decision.

Call the Ontario Human Rights Commission’s centralized Inquiry Services Unit. You will reach an automated phone answering system that will connect you to an Inquiry Service Representative. This representative will tell you if your concerns or inquiries are within the mandate of the Code, or whether a referral to another organization or agency of the government may be more appropriate.

If the representative believes you have the right to file a complaint, you will be sent an Intake Questionnaire and package within 48 hours. You must complete the questionnaire and return it within 21 days. The questionnaire asks questions about the discrimination you faced.

When a Commission officer receives your questionnaire, they will assess whether the particular issues are within the mandate of the OHRC. If necessary, they will interview you and draft legally sound complaints.

You must sign the document before it can hold the parties responsible for the alleged discrimination. These parties, referred to as the respondents, are asked to formally respond to the allegations within 21 days.

The Commission offers mediation services on a voluntary basis, meaning both parties must agree to the service. This allows both parties to discuss the issues at hand, thereby empowering them to come to their own agreement as quickly as possible.

Mediation is usually available within 90 days from the date the complaint was received and signed. The Commission’s mediation process has a settlement success rate of 75 to 85 per cent.

The OHRC has the power and authority to investigate complaints when necessary. The Commission often initiates an investigation if:

• the parties do not agree to participate in mediation services;
• mediation does not result in settlement; or
• mediation is not appropriate due to considerable public interest issues evident in the case.

Usually, an investigation includes a review of all documentation relevant to the complaint, interviews of witnesses who have relevant information, and any other evidence.

Following a thorough investigation, a Commission officer may attempt to resolve the issue through conciliation, proceeding with disclosure of the investigative findings with the parties involved.

If the complaint between both parties is still not resolved, officers will make a case analysis. They will produce a summary of evidence including an interpretation of the case based on human rights legislation in Ontario, and a recommendation of whether to refer the case to a Board of Inquiry.

The Commission, under careful discretion, does not deal with complaints if:

• another legislative act can deal with the issues raised in the complaint more appropriately;
• the complaint is trivial, frivolous, vexatious or made in bad faith;
• the complaint is not in the jurisdiction of the Commission; or
• the complaint is filed more than six months from the last alleged incident of discrimination, and it appears that the delay was not incurred in good faith.

• Immediate Memory – Memory of the past/recent few seconds. This memory can fade very quickly if you are distracted.
• Recent Memory (Short-term Memory) – Memory of the last few minutes, maybe hours. Like immediate memory, recent memory fades away after that.
• Prospective Memory – Remembering to do something in the future (For example, remembering to pick up milk on the way home).
• Long-Term Memory – ‘Permanent’ memories of things you have learned or memorized. There may be no real time limit or maximum amount of information you can store.
• Procedural Memory – Long-term memory for how to do things that may be hard to put into words such as tying shoelaces or riding a bicycle. Similar to ‘muscle memory’.
• Declarative Memory – Long-term memory you can put into words.
• Semantic Memory – Long-term memory for facts and information.
• Episodic (autobiographical) – Memories tied to a person’s life at a specific time and place.
• Remote Memory – Memories from the distant past.

Most of our memories are distributed around the brain. Damaging one part of our brain doesn’t mean we lose one specific memory. Exception: The hippocampus is important in creating new memories. If the hippocampus is damaged, a person may have difficulty building new memories.

• If someone loses consciousness during a seizure, they won’t be able to form new memories based on what is going on around them.
• Some people will be conscious during a seizure, but can’t really pay attention to their surroundings and they will probably be unable to form memories during that seizure.
• If the seizure is in the hippocampus (the part of the brain that helps form new memories), the person may be unable to create new memories during that seizure.
• Unusual brain activity between seizures can disrupt thinking and memory making.
• Damage to the brain (particularly the hippocampus) is often connected to problems with memory. In some cases it is unclear if the damage is due to epilepsy or if the epilepsy was triggered by the damage.

Surgery can result in memory changes in some people, but not everyone. In fact, many people can have surgery and experience no noticeable change in their memory. There are many factors that help determine if surgery will lead to memory challenges, including:

• How memory was functioning before surgery
• Where in the brain surgery will take place

Even if it is likely that there will be memory change due to surgery, there is no guarantee that a person’s memory will be affected when they have surgery.

When surgery does affect someone’s memory, the person does not experience complete memory loss. Their ability to form new memories may become worse, but it is not gone. They may become more forgetful in day-to-day life (e.g. forget appointments), but they won’t forget who they are.

Memory problems can be more frequent with older anti-seizure medications like Phenobarbital or Tegretol. Many of the newer medications tend to have fewer side effects. One exception is that some people taking Topamax have trouble with concentration and attention, which can affect memory.

When anti-seizure medications affect memory, it is often related to the dosage. In those cases, the memory problems are likely reversible if a doctor reduces the prescribed dosage or prescribes another medication. Of course, controlling seizures with the right medication is important too.

• People who eat a balanced diet full of vitamins and minerals and lower in fat and cholesterol tend to have better thinking and memory abilities.
• After light to moderate exercise, people have a period of improved memory right after the exercise.
• Going for a walk once in a while can help with memory. People who maintain a semi-regular exercise routine where they get up and move around may have better memory function than those who don’t have some regular activity.

High levels of stress cause an increase in the hormone cortisol. Small amounts of cortisol for a brief period of time can be helpful. High levels of cortisol over a long time can worsen memories.

FACT: Stress can be negative (e.g. anxiety about a health concern) or positive (e.g. planning a birthday party). Both negative and positive stress increases the level of cortisol.

Luckily the effects of increased cortisol tend to be reversible once stress is reduced. Stress reduction can sometimes help improve memory. Try activities that relax you and make you feel better. You could try meditation, yoga, and other relaxing activities.

Brain-Activating Activities

Do things you enjoy to stimulate thinking, including reading, socializing, doing puzzles and games.

• Focus on the information you want to remember.
• Be choosy about what you want to pay attention to.
• Reduce distractions. Work in a quiet place. Clear your desk except for the material you need.
• Reduce multi-tasking. Do one thing at a time.

• Picture yourself doing the activity you want to remember, such as turning off the stove or locking the door.
• Say what you’re trying to remember out loud. (e.g. “I’ve turned off the stove”). It’s a form of repeating it and this makes the brain think about it in a different way.

• Put the information in a context that helps explain why it’s important.
• Add unusual meaning like a visual image. The more unusual or odd the meaning, the better. This is very good for names.
• Use rhymes or sayings to remember things. (e.g. In the year 1492, Columbus sailed the ocean blue.)
• Look for patterns. Break a long series of numbers into chunks (e.g. phone numbers).

• Instead of going over and over the information, review the information in smaller chunks spread out over time.
• Start with a very short space between repetitions. Then repeat the information at gradually increasing intervals (e.g. immediately, 5 sec, 10 sec…5 min, 15 min).
• Do something else during that time.
• If you forget the information, go back to shorter intervals.

• Always put important things in the same place (e.g. keys, phone, etc.).
• Use logical locations (e.g. place your keys on a hook and your phone on the counter).
• Don’t use this for everything; just for a few important things.
• Organize lists by categories.
• On your shopping list put meat items together and dairy items together in separate sections.
• Organize To-Do list by the order of tasks, their importance, or some other logical order.
• You may have to recopy your list to do this, but it will help.

• Post-It notes are great if you carry them with you.
• A notebook is good, but a planner or organizer is better.
• If you use a paper organizer, you can carry post it notes with you to add little items to remember for short periods of time (e.g. where you parked).
• The organizer should be small enough that it’s easy to carry it with you.
• Determine a set place for it when you have it at home.
• Check the organizer regularly at set times (e.g. morning and night or at meal times).

Pros

• It’s easy to learn how to use
• They’re inexpensive
• It’s ok to drop it
• They’re easy to replace

Cons

• They can fill up
• You need a new one every year

Pros

• They have “unlimited” space.
• You can use them for years.
• They come with many extra features (e.g. alarms/reminders, telephone).
• Many people can use the cell phone they already own for all their reminders, appointments, phone numbers, and alarms.

Cons

• It can be hard to learn how to use.
• They may be expensive.
• They are breakable.
• They can be expensive to replace.

• Ketogenic diet is one of the oldest forms of medical treatment for epilepsy. It is a high fat, adequate protein, low carbohydrate diet. There are different versions of the ketogenic diet available but the basic principles are the same. Ketogenic diet therapy may be adapted for cultural diversity, allergies and tube feeding.
• This diet is not without its side effects, so it is very important to become well informed when considering ketogenic diet therapy. Do not attempt the ketogenic diet without medical supervision from a properly trained ketogenic diet team especially if you are taking anti-seizure medications.
• Ketogenic diet therapy can be a difficult treatment choice for families from a practical and emotional standpoint. The first few weeks of starting ketogenic diet therapy can be stressful, and it is important that your family has a good support network.
• You will need to learn how to prepare meals differently, which takes time and effort. There also may be some difficulty adapting to the new meals. However, with creative meal planning and sensitivity to your difficulties, some of these obstacles can be overcome. Many families cope well with the challenges and would agree that the hard-work is worth it if the diet gets rid of or significantly reduces the seizures.

Fasting has long been associated with reduced seizure frequency. Ketones are produced during extended periods of fasting. When a fast is broken with foods that contain carbohydrates or protein, seizures return. Of course, fasting is not sustainable.

The ketogenic diet that is consistently reduced in carbohydrates, adequate in protein, and high in fat will mimic this fasting state and also produce ketones. Ketones are an indicator of an important metabolic change but alone cannot explain the anti-seizure effect. Researchers are studying additional mechanisms of action to better explain why this diet reduces seizures.

Yes, this is an evolving area. Classical (traditional) ketogenic diet, MCT oil based ketogenic diet, modified Atkins diet, low glycemic index diet and modified ketogenic diet are currently used worldwide. The amount and type of fat, protein, and carbohydrate characterizes the difference between these diet types. Your ketogenic diet trained medical team will help you determine which type of diet is best suited for you or your child. Each patient should be treated as an individual and every ketogenic diet should be tailored to meet their particular needs.

The ketogenic diet has been described to be effective for different types of seizures.

• The ketogenic diet can be effective in treating individuals with drug resistant epilepsy from infancy to adulthood.
• Up to 60% of children who try a supervised ketogenic diet experience 50% greater reduction in seizure frequency.
• In 40-50% of adults who try a supervised ketogenic diet, a 50% or greater reduction in seizure frequency can be experienced.

• Under trained medical supervision, the ketogenic diet will be initiated by removing the regular diet and replacing with the higher fat, adequate protein, lower carbohydrate diet.
• The ketogenic diet can be initiated from your home (outpatient) or in the hospital (inpatient).
• Institutions will differ in how to begin the ketogenic diet.
• The initiation can also differ in how quickly the ketogenic diet is phased in and adjusted.

• Seizure reduction can occur very soon after the ketogenic diet is initiated or it may take several months. Commitment to consistency in diet intake is important to determine effectiveness of the therapy in controlling seizures.

• There are 3 food groups that are required:
  • Fats such as cream, butter, margarine, oils, mayonnaise, salad dressings, nuts, nut butters, avocado
  • Protein such as poultry, red meat, fish, cheese, eggs, milk, nuts
  • Carbohydrates such as bread, pasta, rice, potato, fruit, vegetables, juice
• In a regular diet, we eat primarily carbohydrates and protein with small amount of fat. In a ketogenic diet, you will eat more fat, enough protein to grow and/or maintain your muscle stores and reduce the carbohydrates significantly from what is usual.
• The amount of fat, protein and carbohydrate adjustment should be fine tuned for the person. Some people will achieve acceptable seizure control on a more liberal ketogenic diet whereas others will require something more restrictive.

• The diet is low in some vitamins and minerals. Your team will recommend particular vitamin and mineral supplements that you will be required to take routinely.

• Consistency of meal preparation and consumption is necessary to see optimal effective seizure control. You should receive training on the proper principles of ketogenic meal preparation. Your medical team may require that you weigh foods on a scale. Portioning foods using household measures can also be effective.
• Ketogenic diet menus can be calculated by your registered dietitian or your team may train you to calculate your own menus. It is important to discuss with your team your food preferences and new meal ideas to support acceptability of this new lifestyle.

This is always the hope. Once the diet is well established, your ketogenic diet medical team may suggest to begin the weaning of a seizure medication.

The most common side effect is constipation, which can be supported with some dietary adjustments and laxatives. Other side effects that may occur that are relatively minor and transient include: kidney stones, low sugars, vomiting, diarrhea, sleepiness. There are some reports of longer term side effects that may include higher cholesterol, reduced bone health, slower linear growth velocity, and abnormal heart rhythm.

There will be blood tests and other suggested tests that your ketogenic medical team will suggest for you. These tests are needed to determine if it is safe for you to start the diet and also used to monitor tolerance to this treatment.

This will need to be discussed with your medical team. Routine monitoring tests will be requested by your team while you are on the ketogenic diet. The results of these tests will also help guide how long this therapy should be required.

• The ketogenic diet should never be attempted on your own. It should only be attempted with the support of a trained medical team.
• If you are interested in trying this treatment option, ask for a referral to a neurologist that works within a centre offering ketogenic diet treatment.
• There are pediatric ketogenic diet programs at the following hospitals in Ontario: Children’s Hospital London Health Sciences Centre (London), McMaster Children’s Hospital (Hamilton), Hospital for Sick Children (Toronto), Children’s Hospital of Eastern Ontario (Ottawa), and Hotel Dieu Hospital (Kingston).
• There is an adult ketogenic diet program at Toronto Western Hospital (Toronto).
• Discuss this treatment option with your neurologist. If your neurologist feels that the ketogenic diet is a possible option, then bloodwork tests and other investigations may be required to determine if the ketogenic diet can be safely implemented. You may then meet members of the ketogenic diet team such as a registered dietitian, nurse, nurse practitioner, social worker, child life specialist and pharmacist who may offer their assessment on how best to plan for the ketogenic diet.
• If you or your child is considered to be a possible candidate, you may be added to the wait list.
• Establishing regular meal and snack times while reducing candies, chocolates and sweets is the best way to prepare for starting the ketogenic diet.

Websites

• Matthew’s Friends Website: matthewsfriends.org
  
• Charlie Foundation Website: charliefoundation.org

Books

• Ketogenic Diets: Treatments for Epilepsy and Other Disorders. 5th Edition (2011)
  Authors: Eric Kossoff, John M Freeman, Zahava Turner, James E. Rubenstein
• The Keto Cookbook: Innovative Delicious Meals for Staying on The Ketogenic Diet (2011).
  Authors: Dawn Martenz

• Consult your doctor if starting a new exercise program
• Always take your medication as prescribed
• Always wear your medical alert bracelet
• Contact sports and activities like boxing, bungee jumping, and scuba diving are not safe and should be avoided.
• Avoid solo aerial sports
• Avoid high altitude sports like rock climbing or mountain climbing
• If walking or jogging, inform family or friends of your route and how long you will be gone.

Avoid the following activities if diagnosed with uncontrolled seizures:

• Motor sports
• Horseback riding
• Gymnastics
• Skiing
• Certain water sports

• Never swim alone
• Swim with a person who is aware of your condition
• The swimmer accompanying you should be physically strong enough to keep you above water and should know the first aid procedures to take
• Swim in supervised areas such as the community pool or in range of lifeguard on the beach
• Tell the pool or beach life guard that you have epilepsy and be ready to brief them of first aid procedures
• Consider wearing a life jacket in the water

Inform your coach and teammates if you experience uncontrolled seizures and instruct them on first aid response. They can keep you safe during a seizure and avoid unnecessary calls for an ambulance. Remember to pace yourself and wear protective gear appropriate to your sport.

Exercising wisely is key to eliminating seizures triggered by exercise. A seizure may be triggered minutes or hours after exercise if you unnecessarily overwork or strain your body. Exercise related risk factors include:

• Extreme fatigue
• Lack of sleep
• Dehydration
• Electrolyte loss (due to severe dehydration)
• Hyperthermia (elevated body temperature)
• Hypoglycaemia (low blood sugar levels)

• Tennis
• Basketball
• Volleyball
• Hiking
• Track and Field
• Baseball
• Jogging
• Golfing
• Cross-Country Skiing

• Hockey
• Football
• Soccer
• Boxing
• Karate

• Scuba Diving
• Parachuting
• Rock Climbing

Trainers cannot teach a dog to detect seizures, though some dogs may have this intuition. Instead, seizure alert dogs can protect the person having a seizure by helping them to avoid injury when wandering. This can be immensely reassuring for people who avoid activities because they fear having a seizure in public. Service dogs can help by keeping their handlers safe during and after a seizure. For this reason, some trainers prefer to call these dogs seizure assist dogs.

• staying close to the person with epilepsy to prevent injury
• fetching medication or a telephone
• alerting a caretaker
• activating an emergency call system (e.g. pushing a Lifeline button)
• “blocking" a wandering person (usually during absence seizures and complex partial seizures) from walking into dangerous areas (Keep in mind that dogs cannot tell whether an action, like walking onto a street or down the stairs, is intentional or not.)

One third to one half of women with epilepsy will notice a pattern between their seizure frequency and their menstrual cycle. This may well be attributed to changes in hormone levels. Estrogen and Progesterone are two hormones produced in a woman’s body. Among their many affects, these hormones speed up and slow down brain cell activity which, in turn, changes the number of seizures some women experience. When estrogen levels are high and progesterone levels are low, the chances of having a seizure greatly increase.

Some women only experience seizures, or experience an increase in seizure activity, during certain points in their menstrual cycle. They may find that their seizures tend to happen just before or during their period, and some may experience a higher rate of seizures after menstruation. This is called Catamenial Epilepsy. These seizures can be hard to control, but your family doctor or neurologist can help. Seizure activity in Catamenial Epilepsy can be exacerbated by factors such as alcohol, stress, and lack of sleep.

Women have a larger selection of birth control methods than ever before. As a woman living with epilepsy, it is important to choose a birth control method that does not interact with your anti-seizure medication(s).

The Pill

The Combined Oral Contraceptive Pill or “the pill" is commonly used around the world as the most effective form of birth control. There are risk factors for all women, such as age, weight, smoking, etc., but women living with epilepsy face additional, controllable risks. Some anti-seizure medications are enzyme-inducing, meaning they speed up the way the liver breaks down the pill, which may reduce its effectiveness. Therefore, it is imperative to choose a pill that is not enzyme-inducing. Remember: the pill is never 100% effective, so it is always a good idea to use a back-up method of birth control such as a condom. The chart below shows which anti-seizure medications are enzyme-inducing (should be avoided) and non-enzyme-inducing:

Epilepsy drugs which do reduce the effectiveness of the Pill (enzyme-inducing drugs):

• Carbamazepine
• Ethosuximide (there is conflicting information about this )
• Oxcarbazepine
• Phenobarbital
• Phenytoin
• Primidone
• Topirimate

Non-enzyme inducing drug:

• Lamotrigine *

Epilepsy drugs which do not reduce the effectiveness of the Pill:

• Vigabatrin
• Gabapentin
• Tiagabine
• Sodium valproate
• Clobazam
• Clonazepam
• Levetiracetam

* Lamotrigine is a non enzyme-inducing drug. However, unlike other enzyme-inducing drugs, it can affect how well the contraceptive pill works and vice versa. This means both medications are reduced in effectiveness and should not be used together.

Methods not affected by Anti-Seizure Medications

The following methods of contraception do not affect, and are not affected by, anti-seizure medications.

Barrier methods

Barrier methods of contraception create a physical barrier against becoming pregnant. They include condoms, femidoms, caps and diaphragms, and are not affected by anti-seizure medications. However, for any woman, barrier methods on their own may not be effective in preventing pregnancy, and you may be advised to use them along with another contraceptive method.

Intrauterine devices (IUDs)

IUDs are devices that are fitted into the womb. IUDs are not affected by anti-seizure medications because they do not contain hormones.

Intrauterine systems (IUSs)

IUSs are devices fitted into the womb. Unlike IUDs, IUSs contain the hormone progestogen. An example of an IUS is the Mirena coil, which contains a slow-release progestogen called levonorgestrel.

Although IUSs contain progestogen, they are not affected by anti-seizure medications because the hormone is released straight into the womb, rather than travelling around the body where an enzyme-inducing anti-seizure medication can cause it to break down more quickly.

There is a risk that a woman could have a seizure while the IUS is being inserted. This is rare, and the risk is low. If you are concerned about having an IUS fitted, you can discuss this with your doctor.

Contraceptive injections

Contraceptive injections, such as Depo Provera, contain progestogen and are given at regular intervals. Although they contain progestogen, they are not affected by anti-seizure medications because they are broken down in the blood, rather than in the liver where they could be affected by enzyme-inducing anti-seizure medications.

Reprinted in part from Epilepsy Society UK.

Women taking enzyme inducing drugs will need to take a higher dosage (approximately 50%) of the morning after pill when compared to the standard dosage. It is advisable to check with your doctor about appropriate dosage levels to counteract the effect of your anti-seizure medication.

Some studies have shown a slight decrease in fertility found in women who have epilepsy. Fortunately, this effect is most often quite treatable through the use of fertility drugs. Using anti-seizure medications does not prevent a woman from receiving fertility treatment. A few women will notice a marginal increase in the number of seizures they experience while taking fertility drugs.

There is no reason why a person with epilepsy cannot have a healthy and normal pregnancy. It is a good idea to talk to your doctor before conception to plan for the child and discuss your epilepsy and medications. Pre-conception counseling with your doctor and neurologist can be very helpful. Women with epilepsy tend to have a slightly higher incidence of having a baby with a problem, which may be related to either anti-seizure medications or the epilepsy itself.

It is important that you arrange a counseling appointment as soon as you become aware that you are pregnant.

Approximately 50% of pregnant women with epilepsy notice an increase in the frequency and severity of their seizures, the other half notice no apparent change. The reasons cited for these changes are a dramatic shift in hormonal levels, changes in body fluid and salt retention, and changes in the way the body absorbs, distributes, and dilutes anti-convulsant drugs. These bodily changes usually return to normal about 3 months after delivery.

As stated above, these dramatic changes in metabolism have a great impact on the effectiveness of anti-seizure medications; therefore, it is vitally important to visit a physician throughout pregnancy and 3 to 4 months postpartum. Anti-seizure medication dosage levels must be monitored carefully and adjusted when necessary, along with frequent blood level measurements.

Pregnant women with epilepsy are often identified as having “high-risk" pregnancies. Doctors feel that there is a greater chance of complications to both the mother and fetus; therefore, extra precautions should be taken throughout the pregnancy. There are several complications that can arise in some women during pregnancy.

Placental problems figure more prominently in women with epilepsy. Premature separation of the placenta (abruptio placetae) may occur, and the accompanying vaginal hemorrhage may severely inhibit the nutrition of the developing fetus.

Since all drugs present a possible danger to women during pregnancy, women must be aware of the risks posed by anti-seizure medications. If you do become pregnant, it is important not to discontinue your anti-seizure medications; the chances of having a seizure and injuring the baby (perhaps from a fall) will become much higher and out-weigh the risks of the drugs. Pregnant women not taking anti-seizure medications, but who were previously taking anti-seizure medications for childhood epilepsy (but eventually outgrew it), have a 4 in 100 chance of having a child born with birth defects. Pregnant women controlling seizures through the use of anti-seizure medications will have a 6 in 100 chance of having a child with a birth defect. In both cases, women with epilepsy have over a 90% chance of producing a perfectly healthy baby.