Masking the Secret q     The mask of invisibility   q     The mask of frail health   q     The mask of helplessness   q     The mask of not caring   q     The mask of the victim   q     The mask of contempt   q     The mask of being bad   q     The mask of the con   q       The mask of vulnerability   q     The mask of super competence   q     The mask of the good Samaritan   q       The mask of the strong silent type
SOCIAL / EMOTIONAL PROBLEMS q       Being isolated from others, lonely   q       Nobody understands   q       Depression, anxiety   q       Fear of being ill in a public place   q       Being rejected by family, and peers   q       Unable to participate in certain activities (not feeling equal to others)   q       Always having to hide illness (i.e. school, job Interviews)   q       Feeling embarrassed, frustrated   q       Fearing rejection by opposite sex   q       Fearing failure, or being denied opportunities   Epilepsy   Career / Vocational Problems   q       Lack of social skills, due to previous experiences   q       Lack of basic skills, due to illness (i.e. high school drop-out)   q       Always being told to be careful, being watched   q       It may get better, but it never goes away   q       Having to lie in interviews and on job applications   q       Never feeling adequate
Epilepsy and Leisure Using your common sense   Few things we do are entirely without risk. When thinking about suitable activities it’s a question of weighing the dangers against the benefits and using common sense to decide what’s right for you. You’ll need to take into account the following: - The sort of epilepsy you have, how severe it is, how often you have seizures. The drugs you take and any side effects you experience. The type of sport, exercise or leisure activity and what risks it involves. What sort of supervision is available.   It often helps to be accompanied by a friend or "buddy", who knows what to do if you have a seizure, when you take part in leisure activities. If you have regular seizures: - You should avoid: scuba diving, parachuting, mountaineering, gliding, hang gliding, aviation, motor racing, boxing, karate. You need to take precautions or supervision is needed: water-skiing; swimming, canoeing, wind surfing, surfing, sailing. Consider the type of seizures you have and what the activity requires beforehand: cycling racing, skating, horse-riding, gymnastics.   In general - Try not to get over-tired - fatigue can trigger seizures. Avoid overdoing it - getting too hot, too cold, stress and lack of oxygen may trigger seizures. Don’t go for long periods without food and drink. Always tell the leader or supervisor of any activity that you have epilepsy.   Swimming, water sports, fishing   The risk of drowning through having a seizure in the water is obvious, however following basic water safety rules such as wearing a lifebelt or buoyancy aid can help to reduce the risks. Let the pool attendant, lifeguard or whoever is in charge know you have epilepsy. It’s a very good idea to take along a companion or "buddy" for any activities involving water.   At the swimming pool - Stay within arms reach of your buddy or companion Try to ensure that a qualified life guard is present (perhaps a friend or relative could learn) Stick to the shallow water (no deeper than your companion’s shoulder height) Avoid overcrowded pools where it may be difficult to see or rescue you if you have a seizure Don’t swim if you feel unwell for any reason Avoid swimming in rough or very cold water   How to deal with a seizure in water - In general follow the usual procedure for dealing with seizures. The following steps should also be taken: Hold the person’s head above the water from behind, and if you can, tow him or her to shallow water. Once the seizure has stopped move the person to dry land and place him or her on his or her side. If the person has swallowed water you may need to resuscitate him or her.   Stay calm, the seizure probably won’t last long.   Only call an ambulance if: One seizure follows another without the person gaining consciousness. A seizure lasts longer than usual. The person has swallowed a lot of water.     Climbing and Mountaineering Heights can be a danger to people with epilepsy. However, the increased risk of injury while climbing or mountaineering is small if your epilepsy is well controlled. Draw up safety plans with other members of the team beforehand. High altitude climbing and mountaineering are not advisable if you have uncontrolled seizures. If there is any significant increase in danger to you or others do not continue. Hiking and rambling If you are going on a long hike it’s better to go with a group or someone who knows about your epilepsy. Tell someone where you are going and what time you expect to arrive at your destination, especially in remote areas. Make sure you have a good map, proper clothing and equipment and know the nearest place to get help.   Riding Always wear a riding helmet and avoid riding alone. Join a cycling club or ride with a friend.   Cycling Try to avoid cycling in heavy traffic. It is advisable for everyone - whether they have epilepsy or not - to wear a safety helmet. If your seizures are not well controlled you should avoid cycling on public roads.   Contact sports Rugby, hockey, football and other contact sports should be safe, so long as you take the normal safety measures. This may include wearing the head protection recommended by the sport’s governing body. If your epilepsy was caused by a head injury your doctor may advise you to avoid contact sports.   TV, video games and VDU’s Three to five out of every hundred people with epilepsy have photosensitive epilepsy, which is triggered by flickering or changing patterns of light. If this applies to you, you may have seizures while watching TV, especially if you get too close to the screen. Seizures are caused by flickering light from the screen. Modern screens (of 100Hz) and TV’s with small screens are less troublesome because they flicker less. Like everyone else you should make sure you get regular breaks away from the screen. If your eyes get tired you may be more likely to have a seizure, especially if there is fluorescent lighting. Nearly everyone with epilepsy can use a computer or VDU safely. Watching TV - Watch TV well away from the set. Use a remote control to change channels. If you do have to get close to the screen cover one eye with your hand.   Video games - Follow the instructions on the pack. Avoid playing if you are tired. Take frequent breaks and rest between games. Play in a well lit room to reduce flicker. Stop the game at once if a player with epilepsy experiences any dizziness, blurred vision, loss of awareness or muscle twitching. Night clubs & alcohol Ordinary flashing club lights do not usually bring on a seizure. However, if you have photosensitive epilepsy you may find flashing lights uncomfortable and strobe lights that flash at a rate of 15-25 flashes per second can bring on seizures. If you are affected turn away from the light and cover one eye with your hand until the lights stop flashing.
Epilepsy and Nutrition Do people with epilepsy require a special diet?            It is important that people with epilepsy follow a nutritious, well balanced diet. Good nutritional habits and a healthy lifestyle are important in obtaining optimal seizure control. However, no special diet is prescribed for epilepsy itself. To avoid dietary deficiencies, ensure proper intake of nutrients through a diet containing adequate folic acid (commonly found in raw and slightly cooked fruits and vegetables), calcium and magnesium (dairy products are the richest source). Vitamin B12 (animal and diary sources), and vitamin K (leafy green vegetables and cereal grains). Vitamin D is found in fish oils/flesh, supplemented milk, and is made in the body in response to sunlight. Rules for a healthy diet are outlined in "Canada's Food Guide" If you have some other condition in addition to epilepsy, that requires a special diet (diabetes, for example), it is important that you follow the diet needed for that disorder.   Can high or low blood sugar lead to seizures?    In extreme cases. Nevertheless, blood sugar level should be steady and moderate for people with epilepsy. Sweets, caffeine and alcohol all cause blood sugar levels to fluctuate and should be avoided. High fibre‑whole wheat toast or a bran muffin‑helps control fluctuations of blood sugar. Protein is also important in the metabolism of certain brain chemicals and hormones.   Do anticonvulsant medications for epilepsy effect nutrients in the body?    The medicines that control seizures may interfere with the body's ability to use certain nutrients including vitamin D, vitamin K, calcium, magnesium, manganese and folic acid. While this problem is present in most people who take medications, it is usually mild and causes no harm. Those most vulnerable to vitamin deficiencies include: people on large doses of medication or multiple drugs; the elderly; growing children; pregnant women; alcohol abusers; and those who follow poor dietary habits.   What about calcium and magnesium to control epilepsy?    It is true that if the body is depleted of these substances convulsions may occur. However, unless you have some other disease that affects these substances, you will not have problems with them if you eat a balanced, general diet.  What about other vitamins and minerals?  As stated above, the use of anticonvulsants may have an adverse effect on vitamins. Problems can generally be avoided with a proper diet. However, in rare cases, more serious problems may arise. For example, anemia can result from severe folic acid deficiency. Weak bones are related to inadequate amounts of vitamin D. Vitamin deficiencies can be discovered by medical examination and laboratory screening. Vitamin supplements can be prescribed as necessary. Please note that self diagnosis is discouraged. Self‑prescribed "megavitamin" therapy will do no good and could be harmful. For example, excessive folic acid intake may actually decrease seizure control.   Is it important to eat regularly?    Yes, some individuals are sensitive to missing meals. If meals are missed or delayed, seizure frequency may increase. Therefore, regular meals and balanced diets are recommended.   Can caffeine, alcohol or smoking cause problems?    These substances are best considered drugs rather than part of the diet. Like other drugs they can do harm, particularly if taken too often or in large amounts. Alcohol is of special concern. When used frequently or in large amounts, alcohol may interfere with the anticonvulsant medication and may lower seizure threshold. Having a seizure while smoking could lead to fire.   Do food allergies cause epilepsy?    Allergies do not cause epilepsy. However, they may aggravate a pre‑existing seizure problem.   What is the "Ketogenic Diet"?    This special, high fat diet approximates the metabolic circumstances of starvation. This state (in which the excessive fats produce chemicals called ketones) has been effective in controlling seizures in young children when anticonvulsants proved ineffective. The diet seldom works in children over 16 years of age and is not effective for all seizure types. The majority of caloric intake is obtained from fatty foods. It is quite unpalatable and difficult to maintain. Overall, it is reserved for children with epilepsy who are unresponsive to anticonvulsants. Another version of the diet has recently been developed ‑ the medical chain triglyceride (MCT) diet.   Who should I speak to about nutrition and epilepsy?    You and your physician are most familiar with your particular condition. Please consult him/her for more advice on epilepsy and diet, or to be referred to a nutritionist.
Taking Control There are several important things people with epilepsy can do to give their treatment the best chance of success. Do take your medication regularly. Do learn about your medication. Ask your doctor or pharmacist for information about the medication and possible side effects. If you obtain information from other sources, such as friends or the Internet, that causes you concern, check with your doctor or pharmacist. Don't change the dose without consulting your doctor. Too much medication may lead to side effects. Too little medication may increase your seizures. Be honest. If you have been missing doses or having side effects, say so. If you are not honest with your doctor, he or she cannot properly help you. Don't ever stop your medication abruptly. This can result in a dramatic increase in your seizures, which can be dangerous to you. Do ask your doctor what to do if you miss a dose of medication. Don't assume if you miss a few doses that you can make them up by taking them all at once, or when you feel a seizure coming on. What you need is a certain amount of medication, taken regularly, to keep a constant level of medication in your blood. Don't try other people's pills, even if a friend says they are working well for her. Instead, get the name of the medication and ask your doctor if it might be right for you. Never mix large amounts of alcohol with medication. Ask your doctor if it would be safe for you to consume small amounts of alcoholic beverages. Be cautious when starting a new medication or making a major change in dose. Don't drive until you know how the new drug or different dose will affect you. It may make you drowsy. Give your memory some help if you have trouble remembering to take your medication. Reminders include daily or weekly pill boxes, watches with alarms, notes where you can see them, and computer calendar reminders. It may be helpful to take your medication at the same time you regularly perform other daily tasks, such as brushing your teeth, after meals or before bedtime. Do not run out of medication. Set up a schedule for re-ordering so it becomes automatic. Request refills several days in advance. If ordering medication by mail, leave enough time for delays in delivery. Take enough medication with you when going on vacation to last until you return. Carry a separate copy of your prescription and the phone number of your doctor so you can easily replace any medicine that gets lost. Don't keep pills in checked baggage when traveling by plane. Take them with you. Keep all medications out of reach of young children. Keep medication in the drug store bottle with a childproof cap and label on it. If using a pill box, keep it in a safe place if there are children around. Grandparents and others should remember that toddlers can be very curious. Know the name, strength of pills and dosage of your medication. Write it down so you can refer to it. Keep all epilepsy medications away from direct sunlight, dampness and high humidity. A bathroom cabinet or windowsill over the kitchen sink are usually not good places to keep medicines. Remember to tell all your doctors, as well as dentists and pharmacists, that you are taking antiepileptic medication. It is a good idea to bring all your medication bottles with you to doctor visits. If you are unhappy with your level of seizure control or are having unpleasant side effects from the medication, don't assume you have to put up with it. Tell your doctor. Ask about other medications or treatments which may be appropriate for you.