Safety and Seizures - Page - printer friendly version

When people are told they have epilepsy (often called a seizure disorder), they often think the worst. They feel somehow "different" and think their lives must change.

They may be told a lot more about what they cannot do than what they can do. They (or their loved ones) may worry about the risk of injuries from seizures, brain damage, or even death.

We all live with risks in our daily lives, and having epilepsy may increase those risks, at least for some.

However, epilepsy and seizures affect people in different ways. Some people may have to make several changes in their lives to live more safely. For others, very few changes will be needed.

A lot depends on the kind of seizure each person has, how often they happen, and the kinds of things that are important in that person's life.

If you have a seizure disorder, this information is to help you think about any risks you may face and to offer ways to help you live a safe and active life.

Seizure Safety

An important part of safety for people with seizures is how well prepared others are to respond correctly and to keep them safe until the seizure ends.

Seizure First Aid - Convulsions

Ease the person to the floor
Place something soft and flat under the head
Lloosen tight clothing around the neck
Turn gently on one side to prevent choking
Move sharp objects out of the way
Don't restrain, and don't put anything in the mouth
Time the seizure if possible
Speak calmly and reassuringly as he or she regains consciousness

First Aid for Partial Seizures

Recognize common signs: blank staring, loss of awareness, chewing or other facial movements, blinking, confusion, inability to respond to directions
Stay calm. Speak reassuringly
Block access to hazards, but don't grab hold
If person is agitated, stay back
Stay nearby until full awareness has returned

Calling the Rescue Squad

Most seizures due to epilepsy are not medical emergencies. They end naturally after a minute or two. There is usually no need to call for emergency help, unless, of course, the physician has advised it.

However, an ambulance should be called if:

It's the first seizure a person has ever had
Normal breathing does not start again after the shaking stops
There are injuries or the seizure happened in water
Other medical conditions, like diabetes, pregnancy or heart disease are involved
The seizure is prolonged (goes on for more than five minutes without any sign of stopping)
Another seizure starts soon after the first one
You are concerned that something else may be wrong

Taking an Inventory of Personal Risk

One way to start thinking about safety is to ask yourself the following questions:

What type of seizure do I have? If you have drop attacks or convulsions, you have an increased risk of injury. Your risk is probably lower if you have brief staring episodes, or remain awake and aware during seizures, or have seizures only at night.

Do I fall during a seizure? Loss of balance and falling increases the risk of fractures, cuts and bruises.

Do I know where I am and what I'm doing during a seizure? A "no" answer increases risk from things around you - especially from machinery, fire, water, or from wandering into harm's way.

Do I do the same thing each time I have a seizure? If you do and what you do (like staring, mumbling, or picking at clothes) is low risk, your risk of injury is lower, too. If you usually run or walk without knowing where you are, the risk is high.

Have I been injured in the past as a result of a seizure? If you have, think about where you were and what happened. Can you do anything to reduce or prevent the injury next time?

Do I know when I'm more likely to have a seizure? If so, you may reduce your risk quite a lot by planning higher risk activities at times when seizures are less likely.

Do I know what triggers my seizures? If you do, changing activities to avoid the trigger as much as you can reduces the risk of related injury.

Do I have a warning (aura)? A warning may give you enough time to get out of harm's way when you feel a seizure approaching.

Do I have seizures every day? Every week? More often? The more often you have seizures, the greater the risk of having one near something that could hurt you. If you've had no seizures for several months or even years, your level of risk is probably no higher than it would be if you didn't have epilepsy. However, basic safety measures -- like not swimming alone -- should be part of your life, whether you have seizures or not.

Taking an Inventory of Activity Risk

Some activities are more risky than others. If you have seizures, think about the things you like to do and the way you like to live now (or in the future) and ask yourself the following questions:

Could I be injured if I had a seizure during this activity? If the activity takes place at heights, near water, or near some other hazard, the risk of being hurt during a seizure goes up.

Can this activity be made safer for someone with seizures? For example, protective helmets and elbow/knee pads can reduce the risk of injury during bike riding or other sports. Similarly, cooking can be made safer by using a microwave oven.

Is this activity important enough to me to take the risks involved? Each of us -- and our families -- has to weigh how much we value an activity against any risks of injury it may carry. In some situations, the answers are obvious. In others, they depend on individual health, preferences and lifestyle.

Safety Tips -- Daily Living

The following text offers a menu of safety tips that may reduce the risk of injury during or following a seizure.

As you go through the menu, remember that people with frequent seizures that affect consciousness and happen without warning are most likely to find these suggestions helpful.

Some people with epilepsy will not need (or want) to make any of these modifications to their lives.

We hope you will select from the menu only those tips that seem to balance your safety concerns with the way you want to live your life.

Personal Safety

Right from the beginning we taught our kids what to do "if Mommy falls and shakes and doesn't wake up." I'd tell them I was going to pretend to have a seizure and they would practice calling the special numbers by the phone. When they were older, we practiced first aid steps as well. They only had to do it for real a couple of times, but they did a great job -- and they were very proud of themselves.

Make sure everyone in the family knows what to expect when you have a seizure, knows correct seizure first aid and knows when it is (or isn't) necessary to call for emergency help.
Know first aid for choking. Make sure your family and friends do, too.
Help young children in your family learn what to do by having "seizure drills" that review first aid steps and how to call for help.
Wear a medical identification bracelet or necklace.
Avoid things which are known to increase the risk of a seizure -- for example, forgetting to take medication; not getting enough sleep; drinking a lot of alcohol; or using illegal drugs.
Try using a pillbox to help you remember your medicines. Store all medicines safely away from children.
If you have an aura (warning) before a seizure, lie down on your side on a carpeted or other soft surface.
Carry a small portable phone or beeper in case you have to call for help and cannot get to a regular phone.
If your seizures are very frequent and sudden, consider wearing a helmet or other protective clothing, such as knee or elbow pads, at least when you're at home alone.

Our kitchen needed painting and I was the only person around to do it. I didn't want to use a ladder, but there was no other way to reach the ceiling. So I put a bike helmet on my head. I guess I looked kind of strange, but I felt better. And I got a bonus -- it kept the paint out of my hair.

Bathroom Safety

Hang the bathroom doors so they open outwards instead of inwards. If someone has a seizure and falls against a closed door, the door can still be opened from the other side.
Leave bathroom doors unlocked (also a good tip for everyone). Hang an "Occupied" sign on the outside handle, instead of locking the door.
Singing in the shower or tub will reassure others that you're doing fine.
Routinely check that the bathroom drain works properly before taking a bath or shower.
If you fall frequently during seizures, consider using a shower or tub seat with a safety strap.
Consider using a hand held shower nozzle while seated in tub or shower.
Put non-skid strips in the tub.
Set water temperature low so that you won't be scalded if you lose consciousness while hot water is running. If you have difficulty judging the temperature of water, turn the cold water on first and have someone else check the water temperature for you.

My daughter had drop seizures without any warning and I always had to be extra careful when she was in the tub. As she got to be a teenager she didn't want me in the bathroom with her. So we got a special plastic tub seat for her, with a strap, so she could still take a bath by herself but wouldn't fall or slump forward into the water if she had a seizure.

Keep the bathroom well ventilated so that it doesn't get too hot.
Avoid using electrical appliances, such as a hair dryer or electric razor, in the bathroom or near water.
Use shatterproof glass for mirrors in the bathroom.

Kitchen Safety

As much as possible, cook and use electrical appliances when someone else is in the house.
Serve hot food and liquids directly from the stove or countertop onto plates.
Slide containers of hot food along the counter instead of picking them up, or use a cart when taking hot foods or liquids from one room to another.
Use plastic dishes and cups with lids (commuter cups) to prevent cuts or burns from spills.
Use a microwave oven for cooking.
When you use the stove, try to use the back burners as much as possible.
Remove burner controls from gas or electric stoves when not in use.
Use long, heavy duty oven mitts or holders when reaching into a hot oven.
Use pre-cut or already prepared foods as much as possible; use a blender or food processor to limit the need to cut with sharp knives.
Wear rubber gloves when handling knives or washing dishes and glassware in the sink.
Use plastic rather than glass containers as much as possible.
If coordination is a problem, use scoop spoons and dishes with high sides.

When I had a seizure in the kitchen, I would always hit my head on the kitchen counter on the way down. Finally, we got a new TV and as I was unpacking it, I noticed the shape of the molded packing materials inside. They looked a lot like my counter edges. I found it I cut them a bit I could fit them on the counter edges. It doesn't solve the problem completely, but it helps.

Household Safety

Carpet the floors in your house or apartment with heavy pile and thick under padding. Put extra padding under carpeting in the bathroom.
Pad sharp corners of tables and other furniture; look for rounded corners when you shop.
Keep toys and other clutter off the floor to avoid tripping.
Put guards around the fireplace or, preferably, close fireplace screens while a fire is burning.
Avoid smoking or lighting fires when you're by yourself.
Don't carry hot fireplace ashes or lighted candles through the house.
Avoid space heaters that can tip over.
Place non-flammable barriers in front of heaters and hot radiators.
Use curling irons or clothing irons with automatic shut off switches to prevent burns.
Try to avoid climbing up on chairs or ladders, especially when alone.
Make sure any motor-driven equipment, such as a lawn mower, has a "dead man's" handle that will stop the machine if your hand releases normal pressure.

My father has seizures and twice he had them while sitting at the table having dinner. Both times he fell to the ground and once he broke his arm. My mom decided the answer was some new dining room chairs -- including one with arms. They look great; my father uses the one with the arms, and now, if he has a seizure, he doesn't fall.

Take a careful look at power tools in your home workshop - do they have an automatic shut off? Would you be hurt if you had a seizure while using them? Be especially careful of circular saws, drills, and sewing machines.
If you tend to wander during a seizure, make sure outside doors are securely locked. Consider placing an alarm on an outside door that will alert others in the house if you try to open it during a seizure.
Put safety gates at the top of steep stairs.

Workplace Safety

The people at my office knew I had the kind of seizures where I'd get up and wander around. They were very understanding and protective of me. Too protective. Every time I was away from my desk they'd sort of send out search parties to find me in case I was having a seizure. So I made a personal sign out sheet so they could check the sheet and know I was away on purpose and not because of a seizure.

Most people with epilepsy can work without worrying about safety issues. However, some jobs are more risky if seizures are frequent, involve loss of consciousness, and happen without warning.

Jobs can often be made safer with a few changes. Employers are, in many cases, required by law to make such changes or accommodations

Review any job-related risks that apply to you. Can something be charged to improve safety?
Consider telling your co-workers you have epilepsy and the correct first aid for the type of seizure you have. This often helps calm fears and corrects any strange ideas they may have about seizure first aid.
Let the local rescue squad and fire department know, too. If they are ever called to help, they will know in advance what you want them to do and how you want your seizure to be handled.
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 guards.
Try to keep consistent work hours so you don't have to go a long time without sleep.
If you are sensitive to flashing lights, try to limit your exposure. Look away if you can. Use dark glasses. Some people think blue lenses work best.
Does stress make your seizures worse? Is your job a very stressful one? If so, look at ways to reduce stress on the job.
Depending on your job and demands of the work site, consider wearing protective clothing if you have frequent seizures.
Keep a small pillow tucked away in a drawer so a co-worker (who knows where it is and what to do with it) can place it under your head if you have a generalized tonic clonic (grand mal) seizure.
Keep a change of clothes at work in case your clothes get soiled during a seizure.

Transportation Safety

Avoid driving a car unless you have a valid license and are not having seizures.
Always wear a seat belt and insist your passengers do, too.
If you can't drive because of epilepsy, explore local "Dial a Ride" services, paratransit and public transportation options. Your city or state may offer discounts on transportation services, for people with a disability.
When riding a bicycle, wear a helmet, knee pads and elbow pads. Encourage others to do the same.
As much as possible, ride on side roads or bike paths.
Stand well back from the road when waiting for a bus and from the platform edge when taking the subway or train.
If you wander during a seizure, take a friend along when you travel.
If subway or other escalators or stairs are unusually steep, consider using elevators instead.
If you have frequent seizures, the safety of taking a taxi cab instead of public transportation may be worth the extra cost. Again, explore the paratransit options that may be available in your community.
If you're going to be outside in extremely cold weather, go with a friend.

Recreation Safety

For years I didn't go swimming, even though I loved it. But our pool always seemed to be crowded and I was afraid if I had a seizure no one would notice in time to get me out of the water. Then I found out there were "disability swim" times when there were more people watching the swimmers and fewer people in the water. I feel a lot safer -- and I get to swim again.

When exercising, take frequent breaks, stay cool, and save your greatest exertion for the coolest part of the day.
Review the risks carefully before taking up sports which could put you in danger if you were suddenly unaware of what you were doing.
Exercise on soft surfaces, like grass, mats, or wood chips.
Wearing a life vest is a good idea when you are on or close to water.
Swimming can be safe and fun for everyone, but if you have seizures, avoid swimming alone.
Tell lifeguards and friends you swim with what kind of seizures you have, how to recognize them, and what to do if you have one. Make sure they swim well enough to help if you need it.

First Aid for Seizures
in Water

Support the head and keep the face out of the water.
Bring to the shore or side of the pool, place on side.
Check airway.
Perform artificial respiration if breathing does not resume.
Call for emergency assistance.
Get immediate medical treatment for water ingestion even if someone seems to be well afterwards.

Wear head protection when playing contact sports or when there is an added risk of falling or head injuries.
Touch football is probably less risky than tackle football -- for everyone.
If you ski, ski with a buddy; you my need someone to get help if you have a seizure in icy conditions.
Consider use of a safety strap and hook when riding the ski lift.

Children's Safety

If your child has seizures, most of the safety tips for adults are just as useful for keeping your child safe from harm. In addition, parents of children with seizures learn to childproof their homes by doing the same things other parents do, such as placing gates in front of stairs and other dangerous places, locking up household chemicals and cleaning supplies, and covering electrical outlets.

A greater risk to a child's well being may be overprotection if parents try to foresee every risk and head off every injury. It is part of a child's normal development to explore the environment and try new things.

As a parent, you will want to strike a balance between safety and overprotection Some of the following safety tips may help, depending on how old your child is, what type of seizures he or she has, and how often they happen.

A monitor in the child's bedroom may alert you to the sound of a typical seizure.
Avoid top bunks. A lower bunk, a regular bed, a futon or even a mattress on the floor is a safer place to sleep for a child with seizures.
A well-fitting helmet with a face guard may protect against head and facial injuries from severe drop seizures.
Choking is a risk for any child, especially if the child has frequent seizures and other disabilities. Children sometimes retain food in their mouths and it's a good idea to check if this is a problem.
Put a list of first aid steps on the refrigerator or some other place where it's easy to find Write down the phone number where you or a relative can be reached include the doctor's number and the one for the emergency squad on the same sheet.
If your child is going to sleep at a friend's or relative's house overnight, make sure a copy of the list goes with him or her and that an adult in the house knows what to expect and what to do if a seizure happens.
If your child has had an episode of status epilepticus (seizures that won't stop, or a series of seizures), check with the doctor on what to do if he or she has another one. Make sure everyone in the family knows what to do.

Our son had seizures at night. We were terrified he would have one when we slept and we wouldn't be able to make sure he came out of it all right. Our solution was to put a baby monitor in his room (we called it our seizure monitor since he didn't want to be called a baby). It picked up the shaking sound his bed made during a seizure and woke one of us up. Knowing it was there made us all feel better, including him.

Parenting Safety

My neighbors thought putting dead bolts on the backyard gate was pretty strange, and they really flipped out when I went outside with my toddler attached to my wrist with a bungee cord. But I didn't want him getting out of the yard if I had a seizure. When I explained, hey agreed it made sense -- for anyone.

If you have frequent seizures and you are responsible for other who depend on you, such as children or the elderly, you may want to consider ways to reduce any risks to them, as well as yourself, if you have a seizure.

As you go through your daily activities, think about what could happen if you were unable to react for a short time.

Sometimes, there will be no additional risk -- at other times there may be. Then you will want to consider what extra safety precautions you might take for yourself and your family.

In may cases, you'll find the safety steps involved are not so different from what all parents do.

First, like other parents, you will want to child-proof your house as much as possible.
If you are nursing a baby, or giving him a bottle, sit on the floor or bed, with your back supported. That way the baby should be protected from falling very far if you should lose consciousness.
Feeding the baby while she's seated in a stroller or infant seat may work for you. Toddler seats and small feeding tables can be used as a child grows.
Dress, change and sponge bathe the baby on the floor, using a portable changing pad.
Move the baby around in a stroller or small crib that can be wheeled easily from one room to another.
Keep a young baby in a playpen as much as possible when on your own; keep a toddler in a larger enclosure, or indoor play yard.
Another approach is to childproof a room and use toddler safety gates at doorways and stairs to keep him from wandering away.
Keep your epilepsy medicine out of the reach of all children.
When out shopping or walking, tie your hand to your child's with a bungee-type cord or have the child wear a restraint harness so that he or she can't wander away if you have a seizure that affects your awareness.
As your child grows, explain your seizures in words he can understand and won't frighten him.

As a mother with frequent seizures I was very concerned for the baby, but I managed to keep things simple. When he cried, I'd hold him while sitting on the floor. That's how I fed and changed him, too. I'd wait to bathe him until my husband was home. Then we'd both give him a bath, which was fun. As he grew older I never let him see me take my medicine, because I was afraid he'd think it was candy and try to get some.

Teach your toddler how to call a neighbor, relative, or friend if you have a major seizure. Put the phone numbers in big bright colors near the phone Teach your child how to call 911 and give your home address.
Better yet, pre-program your phone to automatically contact the local rescue squad (or other source of help) or page a family member or friend. Then teach everyone in our family how to use it.

Help From the Experts

Some people who have seizures may benefit from talking with professionals who have special training in safety issues.

Experts in this area, called assistive or rehabilitation technology, help people with disabilities identify and select devices that will help them do things that their disabilities might otherwise prevent.

Rehabilitation technology refers to specially adapted equipment that people with seizures or other disabilities may need.

It can be as simple as a grab bar or rail in the right place, or as complex as a two way communication system that keeps someone living alone in touch with a "buddy" at all times.

Our little boy had drop attacks, terrible seizures that made him fall forward on his face, almost like a tree in the forest He hurt his face and his mouth again and again. All the commercial helmets were too big. Finally, we got in touch with a rehab engineer and he made a helmet with special padding so that the helmet would sort of "grow" with the child. It helped a lot, and there were far fewer injuries from the seizures.

Other examples include an electronic tracking device to find an adult or child who tens to wander off during a seizure, or an adapted shower that uses infra-red technology to shut the water supply off when a person falls.

Some devices may be available in local stores, others may have to be adapted from a commercial product or even, in some cases, designed and built from scratch.

The trained professionals who provide help in these areas include occupational therapists, special educators, rehabilitation technology suppliers and rehabilitation engineers.

You can find an assistive or rehabilitation technology specialist in a number of ways.

One source is RESNA, the Rehabilitation Engineering and Assistive Technology Society of North America (703-524-6686). RESNA offers a referral service to its members throughout the country and should be able to refer you to someone in your area.

Another source is your state's federally-funded Technology Assistance Project. These projects are designed to make assistive technology available to anyone who needs it. The program specializes in getting people with special needs together with experts who can help them.

Information about local Technology Assistance Projects is also available from RESNA.

You may also wish to contact the American Occupational Therapy Association, P.O. Box 31220, Bethesda, MD 20824-1220 Tel: (301)652-2682.

The National Institute for Rehabilitation Engineering, P.O. Box T, Hewitt, New Jersey 07421 Tel: (201)853-6585 is a source for information on custom-made tools and devices for people with disabilities.

Your local affiliate (http://www.epilepsyfoundation.org/aboutus/AffiliateLookup.cfm) of the Epilepsy Foundation is familiar with local resources and can help you locate other services you need.

EF affiliates offer a range of services to people with epilepsy and can often put you in touch with other people facing the same kinds of issues you deal with every day.

To locate the Epilepsy Foundation affiliate nearest you, or for more information about epilepsy, call the national office at 1-800-EFA-100. Or check at EFA's Web Site on the Internet, www.efa.org.

For a free copy of EF's catalog of books, videos, and pamphlets, call: 1-800-213-5231.

How You Can Help

Become an EF member ($25 per year) and receive regular issues of the EF newspaper, EpilepsyUSA. To join, write or call Membership Services at our National Office, 4351 Garden City Drive, Landover, MD 20785 or contact the Epilepsy Foundation of Idaho.

Become a volunteer for your local affiliate or become a donor and support the organization that is working for you. Your gifts to EF's national office or your EF affiliate will be put to work in the continuing struggle to solve epilepsy's problems through research, education, advocacy and service.

Disclaimer

This information is based on common experience. It does not reflect the level of risk or need for safety measures of any individual. People vary in their need for safety measures and readers with seizures are warned not to base lifestyle changes on this material without first consulting a physician.

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