Courtesy of the CEA, 2019
A special thank you to the Canadian Epilepsy Alliance for sharing their up to date and correct epilepsy information
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.
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 significant heights, near water or some other hazard increase risk of being hurt if the individual is prone to having seizures. Can this activity be made safer? Is this activity important enough 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 smother proof’ (‘egg carton’ foam) pillow.
- A monitor in your bedroom may alert others to the sound of a typical seizure.
- High tech, seizure-specific alarms (e.g. triggered by seizure movements in bed and wired to a telephone auto-dial) 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.
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. 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.
Photosensitivity describes a sensitivity to flashing or flickering lights, usually of high intensity, which are pulsating in a regular pattern. Many people are uncomfortable when exposed to such lights, but people with photosensitive epilepsy can be triggered into seizures by them. When given an electroencephalogram (EEG test), the majority of such patients will show epileptiform brain discharges when exposed to flashing lights.
Photosensitive epilepsy most commonly affects children, and usually appears between the ages of 8 and 20 years. The incidence is highest around ages 12 and 13, suggesting a link with early puberty, and girls are affected more often than boys. There is some evidence to suggest that photosensitivity can disappear with age.
It is estimated that fewer than 5% of people with epilepsy are photosensitive. In addition, there is an unknown number of photosensitive persons who have as yet not had a seizure. Photosensitive epilepsy is largely a genetically determined, although its inheritance is complex.
Not all flashing lights or visual patterns will trigger a seizure, even in individuals who are photosensitive. The rate of the flashing light, the duration of the flashing, and the intensity of the light all play a part. A flash at a frequency of between 15 and 20 flashes per second is most likely to cause a seizure, whereas very few people are sensitive to a rate of 3 flashes per second.
Recent advances in the electronics industry exposes many people to a wide range of equipment with flickering or variable light conditions. These may cause problems for the person with photosensitive epilepsy. But natural sources, like the effect of sunlight through trees or dazzling reflections off water, are also known seizure triggers.
The mechanism by which rhythmic light stimulation can cause a seizure is not well understood. Apparently, it can cause nerve cells in those parts of the brain that process visual stimuli to all fire at once in a synchronized fashion, and this causes a seizure. According to neurologist Jerome Engel, “Instead of [the nerve cells] firing individually, like fingers playing notes on the piano, many fire at once-like the banging of dissonant chords”. This only happens when the flashing light or pattern is in the central area of vision and is seen by both eyes.
The seizures that are produced may take various forms, usually tonic-clonic, absence, myoclonic, or, less often, simple or complex partial seizures.
Watch for brief episodes of blank staring in which the individual seems momentarily frozen in place, episodes of rapid blinking or twitching of the mouth or face, jerking movements in other parts of the body, loss of attention, brief inability to talk or respond, or reports from the individual about changes in the way things look, sound, smell or feel.
Besides flickering light, there are also specific spatial-contrast patterns which can be seizure-provoking. In general, high contrast light and dark bars are provocative (if there are between one and four black and white bars in each degree of the person’s vision). The light-dark contrast is critical to abnormal brain response; red-green bars, stripes or patterns are non-provocative. Bars or gratings that oscillate (white to black and vice versa) are more provocative than static patterns, especially if the patterns oscillate in the “dangerous” frequency of 15 – 20 Hz.
“Dartboard”, sectored or “whirling wheel” type patterns maximally stimulate the visual cortex and are therefore more provocative, especially when they cover a large proportion of the picture area.
Television is by nature a flickering medium, and can pose a risk to viewers with photosensitive epilepsy. The most important criterion is the nearness of the TV screen to the viewer. The closer the set, the more the screen fills their entire field of vision and the greater the effect of the flicker frequency of the picture. Tiredness may be an associated factor.
The further provocative factor is the material itself. Music videos and high-tech promotional materials are known for their quick-cut editing and high-contrast lighting patterns that often prove problematic for people with photosensitive epilepsy. Highly detailed computer-generated images can also be provocative.
A few simple steps can be taken to help avoid seizures triggered by watching TV. The person should sit at least 3 metres from the set, and should be level with the screen rather than below it. A small, subdued light placed on top of the TV may help counteract the brightness of the screen. A hand placed over one eye if walking towards the TV will also lessen the effects, since images have to be viewed through both eyes in order to be provocative.
The strobe or flashing lights, which may be part of the entertainment in nightclubs, can trigger seizures in people who are photosensitive. It should also be noted that people with epilepsy who are not photosensitive may also find the excessive heat and/or noise in clubs to be seizure triggers.
Seizures may be triggered in individuals with epilepsy who are sensitive to the flickering of the computer screen, although the flicker rate is not thought to be very provocative. Anti-reflective screens are easily available and may lessen this effect for some people.
Natural light sources are just as likely to trigger seizures in a photosensitive individual as artificial ones. For example, sunlight shining off water or through the leaves of trees, or rapidly flickering as a person travels past railings, can trigger seizures. A good pair of polarized blue sunglasses (preferably with side shades) can help to reduce the effects of flickering light both indoors and outside.
If you have photosensitive epilepsy, taking a few simple steps can be helpful:
- Sitting at least 2.5 metres away from the television set and 30 cm. back from a computer monitor.
- Not increasing the contrast and brightness of a screen. Using a high-quality computer monitor, with a refresh rate of at least 60 Hz (VGA quality or better).
- Viewing in a well-lit room to help counteract the brightness of the screen. Eliminating reflected ambient light on the screen.
- Minimizing exposure to fluorescent lighting.
- Placing a hand over one eye or wearing an eyepatch when approaching the TV picture will also help, since images have to be viewed through both eyes in order to provoke photosensitive seizures.
- Wearing a good pair of polarized blue sunglasses (preferably with side shades) of tinted lenses when exposed to flickering light both indoors and outside.
- Calling ahead when planning on attending a movie, theatrical or other event which may contain strobing or provocative stimuli can reduce surprises.
- Sodium valproate (valproic acid) is the drug of choice for controlling photosensitive seizures.
- If something on television or elsewhere causes you to have a photosensitive seizure, bring it to the attention of the station or company responsible and/or to the Epilepsy Association of the Maritimes