FACT: The social psychological consequences of epilepsy can be more debilitating for some than the seizures themselves.

Studies have found that people with epilepsy rely heavily on family, neighbours and health-care providers and to a lesser extent draw upon friends, work associates and ministers of religion for support. Therefore, people with epilepsy appear to draw their support from sources that do not require them to go far away from home to use. Thus their social support network is primarily restricted to their own home.

A social support network is extremely important, especially for people with epilepsy. People with epilepsy are more likely to experience low social support, and people with low social support are more likely to experience various psychological and physical ailments. For these reasons, people with epilepsy are encouraged to form solid social relationships.

Self-help/Support Groups

Self-help/support groups consist of people who have come together to share the common experiences and problems unique to their condition. There is an ever increasing number of self-help groups available that deal with a variety of conditions including epilepsy. Group members are empowered to take control of their lives, support others, and develop positive attitudes about themselves and their condition.

Studies have shown that these groups provide a cost-effective complement to professional health care services. They have been shown to decrease the need for hospitalization, increase positive feelings about conditions and illnesses, and enhance skills that enable individuals to enjoy a greater quality of life in their communities.

By connecting with a self-help group, the group member begins to take an active role in his/her own health care, which is often accompanied by a positive change in attitude and behaviour. The new group member may be reassured of the normality of his or her reactions, feel less isolated after hearing how others have coped and are continuing to maintain quality of life. Becoming a member of a self-help group or organization may fill some of the many needs a member might require.

Self-help groups may differ in their structure, model or philosophy, but all share some basic characteristics:

• non-profit with minimal fees or dues
• run by and for group members
• focus on mutual support
• membership is voluntary
• members share a common experience or situation
• equal rights within the group

One of the greatest problems in the area of self-help is maintaining membership. People will attend while they are in crisis, or worried about their epilepsy, but once they have their problem under control, they may not come again.

However, research shows that social support helps healthy people stay well and thus, maintaining membership can help one maintain a positive state of health. In addition to being a place to meet people who share a common bond, self-help/support groups also help members in other ways. Through newsletters and regular contact with other people in similar situations, members receive up-to-date information regarding their disability and treatments that are available. Along with this sharing comes understanding and a sense of belonging. Research confirms that the coming together of people in trouble serves to increase self esteem, decrease anxiety and depression, and raise levels of overall well being.

Self-help groups can also help increase public awareness about epilepsy through community education which may help erase the stigma associated with the disorder.

Social Support for Adolescents

Adolescence is a time of tremendous physical, emotional and social change. The impact of a diagnosis of epilepsy on a teenager during this critical time can present additional stress on the already existing strain of adolescent maturation. The developmental tasks of independence and identity formation become much more complex as adolescent and family attempt to cope with an unpredictable disorder like epilepsy.

Support groups for adolescents are one aspect of the total care which can be given to an adolescent who has epilepsy. A group of peers can assist the teenager in gaining emotional controls, accepting the physical changes of growing up and developing social maturity and intellectual sophistication. Social support systems such as self-help and support networks can buffer the effects of stigma, discrimination, and the sense of lack of control sometimes associated with the condition.

Peer alliance and a subsequent decreased reliance on parents and family begin even before early adolescence. The association with peers allows for increasing autonomy. Because epilepsy may alter “normal” adolescent behaviours such as dating and driving, a support group can offer an opportunity to form relationships. This is where sharing feelings can take place and the adolescent can become comfortable relating to others. The support group also offers a “safe place” to discuss disclosure issues: some adolescents may want to conceal their epilepsy from their classmates or friends. Fellow group members may often offer helpful advice and encouragement to one another about how to handle situations involving disclosure of their epilepsy. The advice and skills developed in the group setting can then be taken outside the group and used in everyday situations.

Support group meetings for adolescents should incorporate fun, fellowship, discussion and education. Adolescents need to socialize and have a good time. For continuity and friendship formation, the group needs to meet on a regular basis.

For more information on how to join a self-help/support group for people with epilepsy, contact your local epilepsy chapter.

Lifestyle is a very important component of one’s wellness.

This topic includes exercise, smoking, sleep, diet and many other components which we can control based on the various choices we make everyday.

Exercise

FACT: Studies show that people with epilepsy are only half as active when compared with age- and gender-matched populations, and objective aerobic measurements confirm the poorer physical fitness of individuals with epilepsy.

People with chronic conditions (such as epilepsy) are often overprotected. This may lead to isolation, loneliness and physical inactivity of the affected individual. Regular physical training has been found to contribute to the resocialization of many people who have epilepsy. It is crucial, therefore, that people with epilepsy become involved in a variety of activities including those that promote physical activity. Exercise contributes to both mental and physical health. It can improve heart functioning and provide psychological benefits of enhanced self esteem and increased social interaction.

Benefits of Regular Exercise

• feelings of being more alert
• post-exercise feelings of well-being
• decreases in body fat, which result in people looking and feeling better.

While there has been some concern that exercise may trigger epileptic seizures, various studies have found that this is not generally true (although for some people exercise may be a trigger for seizures). One study was performed on a number of adults with uncontrolled epilepsy who underwent an intensive exercise program of 45 minutes of exercise 3 times per week. It was found that physical activity did not represent an important seizure-inducing factor in general, and in most people physical training appeared to have a favourable influence.

However, always consult your physician before beginning any exercise program. Personal restrictions on physical activity will depend on both the level of seizure control you’ve achieved and the type(s) of seizures you experience. Keep in mind that researchers have found that even people who have not achieved seizure control can also benefit from physical activity but need to carefully select their exercise activities and follow precautionary measures.

There are some restrictions on the types of activities which should be avoided by people who have epilepsy.

In most cases, the following should be avoided:

• mountain climbing
• sky diving
• parachuting
• hand-gliding
• high tower diving
• scuba diving
• boxing.

As well, if your seizures are uncontrolled, you should not participate in sports likely to cause head injury:

• horseback riding
• boxing
• bike riding.

Participation in extremely physical sports

• hockey
• lacrosse
• football
• gymnastics
• soccer

or recreational water sports

• water polo
• boating

will depend on how well your seizures are controlled.

Participation in many other activities, such as swimming, is generally acceptable

FACT: Not all seizures are due to epilepsy.

Common Causes of Nonepileptic Seizures

• various diseases (multiple sclerosis, Alzheimer’s disease, tuberculosis, parasitic infections, rabies, viral infection, herpes simplex, encephalitis and Pick disease)
• head trauma
• drug or alcohol use
• emotional origin

FACT: Anyone can undergo a seizure given the right set of conditions. People who have seizures sooner have a lower seizure threshold. About 10% of the general population will have a seizure during their lifetime.

What is a Seizure Threshold?

A seizure threshold is the level at which the brain will begin to have a seizure. Everyone has a seizure threshold: anyone can have a seizure if the excitation in the brain is strong enough. A high seizure threshold means that a seizure is less likely to occur, while a low seizure threshold means that a seizure is more likely to occur. Antiepileptic drugs (AEDs) attempt to raise the seizure threshold, whereas other medications may lower the seizure threshold.

Factors which may change the seizure threshold or act as triggers (prompt a seizure to occur) include:

• lack of adequate, regular sleep
• missed medication
• drug toxicity (too much medication)
• poor nutrition (eating junk food or meals that are not nutritionally balanced)
• caffeine
• boredom, lack of activity or interest
• extreme fatigue
• drug abuse
• consumption of alcohol
• bladder too full (putting off urinating)
• fever, colds, infections
• constipation
• menstrual cycle
• heat and/or humidity
• consumption of large amounts of food or drink at one time
• emotional stress (divorce, death, anxiety, embarrassment, fear, feeling bad about oneself)

As well, the seizure threshold can be lowered suddenly when a person who has been taking anti-epileptic medication suddenly stops taking the medication. This can lead to life-threatening non-stop seizures, status epilepticus. People with epilepsy should never stop taking medications without their doctor’s consent, so that a safe schedule for the withdrawal of AEDs can be established, when and if this becomes advisable.

FACT: Epilepsy is not a disease but rather a disorder.

Possible causes of epilepsy

• perinatal complications (occuring prior to birth or during delivery)
• head injury
• disease and infections
• brain tumors and abnormalities
• metabolic disorders and other conditions affecting the body’s metabolism
• stroke
• drug abuse
• toxins, insecticides, industrial chemicals, etc.

Some Common Triggers of Seizures

• flashing lights
• listening to music
• hyperventilation (common cause of absence seizures)
• insufficient sleep
• irregular meals
• menstrual cycle
• poor nutrition
• particular emotions
• excessive fluids
• environmental stimuli
• overexertion/underexertion
• fever
• migraines
• allergies
• heat and humidity
• stress

Seizure diary

Keeping a seizure diary may help you identify the trigger(s) of your seizures.
You should include:

• Date
• How you feel about yourself; your energy level
• Number of seizures
• Time and duration of seizure
• What proceeded the seizure, what occurred during it and what followed it (Identify possible triggers.)
• Descriptions of the times when you thought a seizure might happen but didn’t
• Did the seizure(s) affect your school or work? family relationships? social life?
• AEDs taken: what and when, and any side effects felt that day
• The date of your last refill
• Changes in your medication
• Any other medication taken that day, (aspirin, hormone replacement therapy, antidepressants, etc.)
• Your menstrual cycle day (day 1 = 1st day of your period) and any spotting occurring between periods
• Alcohol consumption
• Amount of sleep and how well you slept
• What and how much you ate, and when you ate it

What is an Aura?

An aura is a “warning” that immediately proceeds a seizure for some people.
It may be:

• sensory (sound, smell, lights, sparkles, distorted images)
• autonomic (related to the involuntary nervous system, e.g. rapid heartbeat, breathlessness, throat spasms, irregular breathing, blushing)
• related to psychic phenomena (hallucinations, etc.)

Usually, a well defined aura which occurs immediately before a seizure indicates a secondarily generalizing partial seizure (seizures that begin in one area of the brain and then may branch out).

In contrast to an aura, a prodromal warning is a state of mind that indicates the onset of an unhealthy condition. It is a vague feeling of uneasiness or irritability that occurs minutes or hours before a seizure.

Treatment for People with Epilepsy

Antiepileptic drugs (AEDs) successfully control up to 70-80% of epileptic seizures. However, AEDs do not cure epilepsy; they provide control only.

Surgery may be required when:

• seizures are the product of a brain problem (brain tumor)
• seizures are of a particularly dangerous type (“drop attacks” or status epilepticus)
• chronic, generalized seizures occur hundreds of times a day, making normal life impossible.

A combination approach (well-rounded approach) to seizure control includes drug treatment, careful avoidance of personal seizure triggers and the use of alternative therapies to help prevent seizures and reduce stress. While alternative therapies do not necessarily eliminate the need for drug treatment, they may help reduce the dosage of AEDs required. This is important for those who find their seizures are controlled by AEDs only when taken at toxic levels (dangerously high amounts of the medication in the blood) or with bothersome side effects.

Possible Side Effects of AEDs

• drowsiness and lethargy
• difficulty awakening (result of over-medication or toxicity)
• blurred or double vision
• tremors (shaking)
• slurred speech
• hiccups
• vertigo (dizziness)
• nausea
• rash
• stomach upset
• loss of appetite
• weight gain
• clumsiness
• hair loss or new hairiness
• numbness of extremities
• frequent urination
• insomnia
• change in gum/facial features
• psychological changes, including headaches, depression, irritability, confusion, memory loss, learning difficulties or behaviour changes

Be sure to know what side effects you might have with any AED (and other medications) you take. Some reactions to and interactions between medications (including “herbals”) can be dangerous or even life-threatening.

Taking good care of yourself physically is essential to your mental and social well-being as well.
Talk to your doctor and find out which changes will help you to improve your physical health.