Balancing life’s risks against its rewards: some say it’s the key to living well.
Having epilepsy may increase life’s risks, at least for some. Should you be taking special safety precautions? A lot depends on the kind of seizure you have, how often they happen, and the kinds of things that are important in your life.
When you have the tendency to have seizures, you have to strike a balance between the way you want to live your life — your personal freedom — and your personal safety.
If you have very brief staring episodes, or only have seizures while asleep, your chance of being injured is probably low. People with frequent seizures that affect consciousness and happen without warning (especially convulsions and drop seizures) are the most likely to be at risk of injury.
Studies show that only about 1% of seizures actually result in injuries. Accidents are not evenly distributed among epilepsy patients; those with accidents have usually had more than one. Overall, the annual chance that a person with epilepsy will visit an emergency department because of an injury as a result of a seizure is estimated to be 5%.
Certainly, activities taking place at heights, near water or some other hazard increase your risk of being hurt if you are prone to having seizures. So ask yourself: Can this activity be made safer? Is this activity important enough to me to take the risk involved?
Each of us—and our families—has to weigh how much we value an activity against any risks of injury it may carry. Sometimes the answer depends on individual health, preferences and lifestyle. Make decisions that will have a positive effect on your life!
People with epilepsy should not be overprotected. Remember, restrictions will not ensure that accidents will not happen. When some risk is unavoidable, it is important not to over-react, since unnecessary restrictions on one’s independence (especially on children with epilepsy) may cause greater harm that the potential accident.
The information below will help you think about any risks you may face and offer ways to help you live a safe and active life. Take some time to set up those basic safety procedures that directly apply to your seizure pattern. Then concentrate on all the things you can do. The goal is to balance safety concerns with the way you want to live your life— well.
Do the people around you know how to help if you have a seizure?
- Make sure your family, friends, teachers or coworkers know seizure first aid. Hang up a first aid poster in a prominent place.
- You and your family should know first aid for choking.
- Wear a medical identification bracelet or necklace (available from Medic Alert by phoning 1-800-668-1507).
- Avoid things that trigger seizures, like forgetting to take your medication, not getting enough sleep, or drinking alcohol.
- Carry a small, portable, pre-programmed phone or beeper in case you have to call for help and you are away from a telephone.
- Have you ever fallen or been burned during a seizure at home? Making specific changes around the home can significantly reduce such injuries.
Tips for ensuring safety around the home
- Carpet the floors, including entranceways and bathrooms, using dense-pile carpet with thick underpadding.
- Pad sharp edges of tables and other furniture. Don’t leave drawers open.
- Avoid free-standing or table lamps and glass decorations.
- Whenever possible, sit down when doing household chores or using tools.
- Place non-flammable secure barriers in front of hot radiators, heaters and fireplaces.
- Avoid smoking, lighting fires or candles when you’re by yourself.
- Keep floors clear of clutter and tie up dangling electrical cords.
- Avoid climbing up on chairs or ladders, especially when alone. Put safety gates at the top of steep stairs.
- Use “automatic shut off” appliances, power tools, etc. whenever possible.
- Be careful of irons, hair dryers, lawn mowers, saws, sewing machines, etc.
- Securely lock outside doors if you tend to wander during a seizure. Consider placing an alarm on an outside door to alert others.
- If your seizures are very frequent and sudden, consider wearing a helmet with faceguard and/or knee or elbow pads, at least when you’re at home alone.
Taking some simple but important precautious at home can save your life.
If you live alone, have a “buddy system” if you need to be checked on. Pre program your phone to your emergency contact numbers. A subscription to a Lifeline® Personal Help Button (1-800-387-1215) gives you push button contact with a “responder” from your home.
Have you ever had a seizure in the bathtub? Here’s what you can do to reduce your risk of injury or drowning:
- Take showers rather than baths.
- Routinely check that the bathroom drain works. Don’t let face cloths or sponges block the drain, allowing the tub to fill with water.
- Put non-skid strips or a rubber bath mat on the floor of the shower.
- Shower only when someone else is at home. (Singing in the shower will reassure others that you’re doing fine.) Otherwise, take a sponge bath using the sink.
- Set water thermostat low to prevent scalding. Turn on the cold water first and turn off the hot water first.
- Be wary of a very hot shower—some people find heat to be a seizure trigger. Keep your bathroom well-ventilated.
- If you fall frequently during seizures, using a shower/tub seat with a safety strap, a hand-held shower nozzle, and padding the edges of the tub with a folded towel may be helpful.
- Avoid glass shower doors. Use shatterproof glass for mirrors.
- Leave the bathroom door unlocked. An “Occupied” sign will do the trick.
- Hang your bathroom door so it opens outwards instead of inwards if you might fall against a closed door.
- Avoid using hair dryers, electric razors, or other electrical appliances in the bathroom, or near water, or when you’re alone.
- Consider using a padded toilet seat.
Do you get seizures at night? Here are some helpful tips on avoiding injury:
- Avoid using hard-edged bed frames or sharp-cornered bedside tables.
- Avoid top bunks.
- Avoid potentially suffocating sleeping surfaces, like waterbeds.
- If a pillow causes concern, discard it or use a smotherproof’ (‘egg carton’ foam) pillow.
- A monitor in your bedroom may alert others to the sound of a typical seizure.
- High tech, seizure-specific alarms (eg. triggered by seizure movements in bed and wired to a telephone autodialler) are now available (from the British company Aremco at phone number 011 44 1622 858502).
Interested in investigating more ‘high tech’ safety devices (like an electronic tracking device to find a person who tends to wander off, or an adapted shower that uses infra-red technology to shut the water supply off when a person falls)? You can also find “adaptive technology” through the disability website www.indie.ca.
Have you ever had a seizure while cooking? Avoid burns, cuts and other injuries by taking these steps:
- Use a microwave oven for boiling water and cooking.
When using a stove:
- Use the back burners as much as possible.
- Saucepan handles should face the side or back of the stove.
- Use a stove guard that fits around the side or front of the stove.
- Use long, heavy duty oven mitts when reaching into a hot oven.
- Cook when someone else is at home whenever possible.
- Buy a kettle and iron with an automatic shut off.
- Avoid knives, slicers, etc. Use a blender or food processor, or foods that are pre-cut or already prepared.
- Consider a wall-mounted or table-top ironing board.
- Use unbreakable dishes to prevent cuts, and cups with lids to prevent burns.
- Avoid carrying hot food or liquids.
- When using a dishwasher, ensure that knives and other sharp utensils have their blades pointed downwards and are placed safely out of the way.
- Wear rubber gloves when washing glassware or handling knives.
Sports and Recreation
People with epilepsy can still enjoy an active lifestyle.
Most sports and recreational activities are both safe and beneficial for people with epilepsy, promoting fitness and stress reduction, as well as maintaining bone mass. Here are some safety tips:
- Wear the appropriate safety gear, such as helmets, flotation devices, elbow and kneepads.
- Exercise on soft surfaces like grass or mats whenever possible.
- Stay cool when exercising by taking frequent breaks.
- Swimming can be safe and enjoyable, but always with a buddy who is an experienced swimmer. Inform the lifeguard about your seizures, and consider wearing an easily identifiable bathing cap or flotation device.
- Consider avoiding or modifying sports with increased risk of a head injury. For example, touch football is safer than tackle (for anybody).
- When bicycling or rollerblading, wear a helmet, knee pads and elbow pads. If the helmet liner is damaged in an accident the entire helmet must be replaced.
- Avoid busy roads and solo trips.
- Avoid boating, snowmobiling or skiing alone. Consider the use of a safety strap and hook when riding the ski lift.
- Skydiving, deep-sea diving, or hang-gliding are not recommended.
- Before taking up sports that would put you in danger if you were suddenly unaware of what you were doing, review the risks and benefits.
Thanks to the information provided by the Epilepsy Foundation of America in its brochure Safety and Seizures.
Are you someone who is likely to have a seizure while travelling?
- Don’t drive a car unless you have a valid license and are not having seizures.
- If you can’t drive because of epilepsy, explore local “Dial-a-Ride” services, paratransit and public transportation options. People with a disability are sometimes eligible for local discounts on transportation.
- If you have frequent seizures, the added safety of a taxicab may be worth the extra cost.
- If you wander during a seizure, consider taking a friend along when you travel.
- When taking a train, bus or airplane trip, if you need to travel with an attendant for your seizures, they may be eligible for a discount. Contact the Canadian Epilepsy Alliance in your area for more information.
- If escalators or stairs are unusually steep, consider using the elevator instead.
- On vacation, take enough medication along for the entire trip, and carry a copy of your prescription and doctor’s phone number with you.
- If your seizures have made you housebound, consider getting a seizure dog.
Jobs can often be made safer with a few changes, and in most jurisdiction employers are required to make reasonable accommodations for their employees with disabilities. Here are some useful tips:
- Review any job-related risks to you. Can something be changed to improve safety? Helpful advice is available from the Job Accommodation Specialist at the CCRW by phoning 1-800-664-0925 or 416-260-3060.
- Consider telling your co-workers that you have epilepsy and about correct seizure first aid. This often helps calm fears and corrects misconceptions. The Canadian Epilepsy Alliance in your area can help.
- Try to keep consistent work hours so you don’t go too long without sleep.
- Climb only as high as you can safely fall, especially on a concrete floor, unless you are protected by a reliable safety harness and wearing a secure hard hat or helmet.
- When working around machinery, check for safety features, such as automatic shut offs or safety guards.
- Depending on your job and demands of the work site, consider wearing protective clothing if you have frequent seizures.
- Keep a change of clothes at work in case your clothes get soiled during a seizure.
A small percentage of people with epilepsy (usually children) are “photosensitive,” meaning that for them, strong, extremely rapid flashes or strobing effects are seizure triggers. If you are photosensitive, try to limit your exposure to flickering lights (such as strobe lights or highly animated computer games) and use dark glasses. When exposure is unavoidable, covering one eye will reduce the photosensitive effect. Watching TV or using a computer is not usually a problem for people with epilepsy.
Medical Safety Issues
Most seizures end naturally within one or two minutes, and do not pose serious health risks. However, in some cases a seizure will continue for a prolonged period, or repeat without the person regaining awareness. This is a medical emergency called status epilepticus. “Status” should always be treated by a physician.
Virtually any seizure type can occur as status. It is believed that a tonic-clonic (grand mal) seizure lasting over an hour can cause brain damage. So if a seizure goes on for more than five minutes without stopping, or repeats before the person regains full awareness, call for medical attention immediately.
More than 15% of patients with epilepsy have at least one episode of status epilepticus. One common cause is low levels of medication in the blood. That is why taking your medication is so important. (The safety of the medications themselves will be discussed in an upcoming issue of Epilepsy Matters.)
Some people are especially prone to status, or to acute repetitive seizures, also called cluster seizures (i.e. two or more seizures separated by periods of consciousness).
Sometimes care-givers can help by administering emergency medications such as diazepam (Valium) or lorazepam (Ativan). A new home therapy, fast-acting diazepam rectal gel (Diastat), is now available to stop repetitive seizures. This may also reduce risks for people who live in rural areas, long distances from emergency medical services. If you think you may need a preparation such as Diastat, consult with your physician.
Sudden Unexplained Death in Epilepsy or SUDEP refers to the sudden death of a person with epilepsy without determinable cause. The rate of SUDEP is estimated to be around 1 in 1,000 people with epilepsy a year, typically a young person 20 to 40 years old with poorly controlled tonic-clonic seizures. Although most SUDEP deaths are not witnessed, there is evidence that SUDEP may often be preceded by a seizure.
Because the exact cause of SUDEP is so far unknown, it is still impossible to prevent. Here are some suggested ways to perhaps reduce the risk:
- Take your anticonvulsant medications as directed.
- Try to achieve the best seizure control. Live a healthy lifestyle, learn stress management and adopt a regular sleep pattern.
- Avoid the use of drugs, excessive use of alcohol and your seizure triggers.
- Family members can learn CPR.
For more information, contact the SUDEP Awareness and Support Association (SASA) via e-mail at email@example.com.
Remember, it is important for people with uncontrolled epilepsy to balance the awareness of their slightly increased risk of death with the need to live as normal a life as possible. There are usually very few things that people with epilepsy cannot do.
Seizure Service Dogs
Seizure service dogs are becoming increasingly popular as a way to give people with epilepsy who are afraid of having a seizure when alone, a greater sense of security, confidence and mobility.
A ‘seizure dog’ has been specially trained to respond once a seizure has commenced by getting help, protecting the person during the seizure, or leading the person to safety during a complex partial seizure.
What about seizure-alert dogs? These are the seizure dogs that some claim can somehow predict the onset of a seizure and alert their master well before the seizure actually occurs. Is this fact or fiction?
According to a British study published in the journal Seizure, six pre-selected dogs were successfully trained by the Support Dogs Training Centre in Sheffield England to pick up on subtle changes in their masters’ body language or behaviour 15-45 minutes before the onset of a seizure, and to provide alerting signals to warn that a seizure was about to occur.
In Canada, seizure dog trainers do not promise that the dogs they train will be able to detect seizures in advance.
A word of caution. Seizure Dogs are expensive to train and still difficult to acquire. You may need to be on a waiting list, and asked to help cover costs by fundraising.
Seizure Service Dog contacts include:
- The Lions Foundation of Canada Dog Guide Training Centre, which takes people who qualify from all across Canada at no fee. Phone: (905) 842-2891 or e-mail: firstname.lastname@example.org
- Key Companions Service Dogs. Phone: (905) 857-9547 or e-mail: email@example.com
- West Coast Access. Phone (604) 485-6062
- The U.S. Company Paws with a Cause Phone (616) 877-7297.