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UPDATED: Sat, 11/03/2007 - 3:57pm

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Safe and Sound

Epilepsy is a frightening condition on many levels. But unlike many other chronic problems, epilepsy can be physically dangerous.

Every day, people with epilepsy fall and break bones in their bodies. Every year people die from events directly connected to seizures. The simple act of climbing the stairs or cooking dinner can be fraught with danger. Taking a bath or riding a bicycle can turn suddenly fatal.

There is no way to eliminate the danger of a sudden seizure. But many common-sense precautions can be taken to minimize the risk. And, according to one of the country’s leading authorities on epilepsy, there is a sure-fire place to start if you are concerned about safety during seizures.

“If somebody is having seizures that bad, they’d better get another opinion, another doctor and better treatment,” said Dr. Robert Gumnit, president and founder of the MINCEP Epilepsy Center in Minneapolis. “There are very few people who have to go through life with such severe seizures that they need to modify their house to protect themselves.”

Gumnit estimates that there are fewer than 5,000 people in the United States with epilepsy so severe that their seizures cannot be controlled. Those who have been told that they have an uncontrollable condition need to get another opinion from a first-class facility, he said.

“Places like the New York University Epilepsy Center and MINCEP Epilepsy Care where I work, they do a better job than your friendly neighborhood barber, if you know what I mean,” he said.

“If you do have seizures, I can tell you what to do with it, but I don’t want people to take a passive attitude that ‘I’ve got to live with it,’ ” he said. “They should get someplace that can do better by them.”

Gumnit said that while most people with epilepsy can get control of their seizures, there are a number of people who, despite all the advances of modern science, still cannot stop from having them.

For those people, Gumnit says that preventing injury is a matter of ordinary prudence.

“In terms of basic safety, beyond getting good medical care, taking your pills and that sort of thing, you want to use common sense,” he said. “You don’t want to have a kitchen where you’re cooking alone and can fall and burn yourself. You want to use a stove with special safety burners. You want to have padding on the floor.”

That kind of precaution is not lost on Barb Graff, a resident of Grand Island, New York, near Buffalo, for whom seizure safety is a way of daily life.

“I try to avoid stairs as much as possible,” she said. “The carpeting that we have has a thick padding underneath it. Part of the reason we bought end tables with rounded corners was because we knew we were going to have kids. But then we thought that if I fall and hit my head, I’m going to do less damage with a round corner than a pointy one.”

Here are some guidelines that experts say can make the lives of people who have seizures safer:

In the home:

Carpet floors with heavy pile and thick under-padding; buy furniture with rounded corners; don’t smoke or light fires when alone; buy chairs with arms.

In the bathroom:

Hang bathroom doors so they open outwards, not inwards, so if someone falls against the door, it can still be opened; don’t lock the door, hang an “occupied” sign; keep bath water levels low; use a tub or shower seat with a safety strap.

“One of the most common causes of death is drowning,” said Gumnit.

In the kitchen:

Slide hot containers along a counter or use a cart; cook in a microwave oven when possible; use plastic rather than glassware; use back burners on stoves.

In the workplace:

Tell co-workers about your epilepsy and what to do if you have a seizure; use a safety harness when climbing; check machinery for automatic shut-offs; if you have to take public transportation to the job, stand well back at bus stops and train platforms; keep consistent hours so your sleep patterns remain steady; try to reduce stress on the job.

“You can’t avoid stress,” Gumnit said. “What you can do is minimize the reaction that you have to stress. And that means learning to recognize what your stress factors are and dealing with them.”

During recreation:

Take frequent breaks when exercising and stay cool; exercise on soft surfaces; wear a life vest on or near the water; tell lifeguards about your seizures; try to be with a friend; wear head gear where appropriate.

“Exercise is very important for general well-being and as a form of stress relief,” Gumnit said.

He said the severity of the seizure disorder and the nature of the sport should determine whether a person with epilepsy should exercise alone or take part in certain sports.

“But I don’t think they should go scuba diving or hang gliding or rock climbing,” he said.

More to think about

Outside of these guidelines, Gumnit said that there were some general factors that raise and lower the seizure threshold beyond the specific medically prescribed treatment.

“Some you can’t affect, like your genetic makeup,” he said. “Others are general factors like getting adequate sleep, a good diet, learning how to minimize your stress – and I believe that meditation techniques are terribly important – and taking your medicines regularly and, for women, avoiding water retention around the time of their menstrual cycle.”

But Gumnit said that no seizure safety precaution is as important as not having seizures at all.

“The fact of the matter is that you should get the seizures under control so you’re not falling and hurting yourself. That’s the message – that except in very rare instances, you don’t have to go through life worrying about these things.”

Take Control of your seizures by starting My Epilepsy Diary today.

Keeping a daily record of your seizures can help you and your doctor better understand and treat your epilepsy.

Open my epiCom Diary


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