Lets face it, life is always a bit risky. However, for those who live with seizures, we know that the idea of risk quickly gets notched up a peg or two. This is partly because seizures are unpredictable and can make people very risk adverse, cautious or timid. The risk of accidents and other unwanted outcomes from seizures such as having a seizure in front of work colleagues, having a seizure on public transport or at a special event, can be a source of fear for many people. With this in mind, being aware of the risks and taking reasonable steps to manage them, people with epilepsy need not cut themselves off from the kinds of fulfilling lives they should be living. Many people with epilepsy lead full and active lives.
People who continue to have seizures are more susceptible to the potential risks associated with living with epilepsy. Cause, type, and frequency of seizures vary between people. The evaluation and management of risk needs to take into account the persons seizures and their unique circumstances. Ensuring that seizures are correctly diagnosed, that treatment plans are followed and that first aid information is available, minimizes risks.
Although many people who witness a seizure fear that the person may be harmed, especially by a generalized convulsion, the risk of brain damage or death from a seizure is low. Based on the medical assessment the doctor will recommend guidelines in relation to driving, the use of dangerous machinery, working above ground level and high-risk activities such as scuba diving.
Anything that affects a persons conscious state, awareness or judgement can increase the risk of accidents. Burns-related injuries are often reported in people who experience complex partial seizures and tonic-clonic seizures. Most common are injuries due to scalding in the kitchen or bathroom. Reducing hot water temperature to 50 Celsius can protect against 3rd degree burns. Similarly strategic placement of indoor heating appliances can minimize the risk of burns in the event of a tonic-clonic seizure.
A person is at most risk of harm if they are doing something dangerous, such as driving, when a seizure occurs.
There are laws about driving after seizures and in general people who have had a seizure are required to notify the licensing body and stop driving until a medical report is supplied. Most people can return safely to driving but the length of time a person must wait varies between individuals.
Swimming and taking a bath alone are not recommended and special care needs to be taken when using hot water. Turning on the cold tap first in the shower or basin and lowering the temperature of the hot water are good safety hints for any home. Showers and baths and running water in any context, appear to be conducive to seizures in some people. A precautionary measure is to take medication first thing in the morning, 20 -30 minutes before taking a shower.
Take a few moments to think about your home, work and leisure activities. Consider any risks that your seizures might create. Could you hurt yourself if you had a seizure? Is there a way that you could reduce the risk of harm to yourself or others?
There are many general safety strategies that you may not be using which would be useful. Do you have smoke alarms, fireguards, or power breakers fitted in your home? Is the hot water temperature controlled? Is your shower safe for anyone who falls, not just someone who has a seizure? Do you wear a bicycle helmet when riding? Safety checklists are available from Epilepsy Australia Affiliates and various community agencies.
Some people choose to wear a medic alert bracelet or pendant with epilepsy information, in case of an accident. However this is a personal choice and does not appeal to everyone. Another option is to carry medical information in your wallet.
When assessing epilepsy related risks in the workplace or at school, an accurate understanding of the persons condition is required to form the basis of case by case decision making. Strategies need to be realistic, appropriate and practical.
Status epilepticus refers to seizures that are prolonged or occur one after the other in quick succession. In some seizure types status, if untreated, can cause brain damage and can be life threatening. Status is uncommon and the treatment of epilepsy aims to prevent status occurring and, if it occurs, to treat it rapidly.
Some patients who are considered at higher risk of status may be prescribed emergency medication, such as rectal diazepam or intranasal midazolam, for out of hospital use. These medications should be kept in an appropriate safe place, the use by dates should be checked regularly, and training should be provided to anyone who might be required to administer the medications.
You may hear about a phenomenon called SUDEP [Sudden Unexpected Death in Epilepsy] which is the name given to deaths that unexpectedly follow some seizures. Although it is uncommon, a person with epilepsy may die suddenly with no obvious cause of death. The cause of SUDEP is not well understood and estimates of SUDEP vary from 1:1000 to 1:100 people with epilepsy. The higher overall risk appears to relate to a higher frequency of seizures. Key risk factors noted are:
Deaths occur with many illnesses, from influenza to asthma, however we emphasize that in epilepsy it is uncommon and that working to control any illness is the best way to minimize risk.
If you would like to get a better understanding of SUDEP, a copy of Epilepsy Australia's free publication Sudden Unexpected Death in Epilepsy: a global conversation is available upon request.
What you can do to help minimize risk factors
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An Epilepsy Management/Action Plan is a risk management tool that lets anyone, who has a person with epilepsy in their care, know what to do and what not to do when that person has a seizure.
Epilepsy Management Plans are often required by schools, pre-schools, child care centres, disability services, supported accommodation and respite services, and disability employment services. Plans help staff recognize seizure activity and provide documented procedures to follow should an emergency arise.
Plans should include the following information:
Plans should also include step by step instructions from the treating doctor on
If the seizure activity requires emergency intervention, ensure that the medication is readily accessible. Intervention medications generally prescribed are rectal diazepam, and more often today, midazloam.
Your Epilepsy Australia Affiliate can provide information and training in the administration of these treatments.
Epilepsy Management Plan
Activities shouldnt be restricted to the point where an individual cannot follow their interests or have some fun, however while seizures are not controlled some restrictions should be considered, particularly with those activities that carry greater risks. Ensure someone knows what you are doing.
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The Joint Epilepsy Council of Australia is pleased to announce that Australia's recipient of the IBE's Outstanding Person with Epilepsy Award for 2014 is Robert Wierzbicki from Victoria.
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