Epilepsy WA has created a single essential document that may help you to ascertain the steps you can take to reduce your risk of epilepsy related harm. To view and download this document click here.
Epilepsy and Risk
Let’s 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.
- Epilepsy Risk Management
- Epilepsy Management Plan
- Safety Check List
- Around the home
- Leisure Activities
Epilepsy Risk Management
To assist with conducting a risk management assessment and to help you to actively work to reduce risk, the fact sheet contained on the following link may be particularly helpful to you: www.epilepsywa.asn.au/risk/
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 person’s seizures and their unique circumstances. Ensuring that seizures are correctly diagnosed, that treatment plans are followed and that first aid information is available, minimises risks.
Although many people who witness a seizure fear that the person may be harmed, especially by a generalised 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 person’s conscious state, awareness or judgement can increase the risk of accidents. Burns-related injuries are often reported in people who experience focal dyscognitive 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 minimise 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 Bathing
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.
Check for hazards
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 members and various community agencies.
Some people choose to wear a medial identification 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.
At work or at school
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]. SUDEP is when a person with epilepsy, who is otherwise healthy, dies suddenly and prematurely and no reason for death is found. Deaths attributed to SUDEP often happen at night and often go unwitnessed but there are often signs that a recent seizure has occurred.
Overall, the incidence of SUDEP in the general epilepsy population has been reported to be as high as 1.2 per 1000 persons per year in the general epilepsy population. Based on the estimated 142,740 people living with active epilepsy in Australia, this would equate to approximately 171 SUDEP-related deaths per year across the general epilepsy population.
The cause of SUDEP is still not fully understood but researchers are investigating a number of possible mechanisms, including changes in heart functioning and breathing.
Risk for SUDEP is increased for those people with epilepsy who have
- Generalised tonic-clonic seizures (GTCS)
- Seizures at night
- Frequent seizures
- Risk of SUDEP increases 15x if a person experiences 3 or more GTCS per month
- The risk of SUDEP decreases 7x when a person’s seizures are better controlled.
- Abrupt and frequent changes of medication in people whose seizures are not well controlled
- Not taking medication as prescribed
- Alcohol or substance misuse
- Depression or psychiatric illness
Risk levels vary between people with epilepsy and can change over time. It is very important to discuss your individual risk factors with your treating neurologist or epileptologist. Effective treatment of seizures is typically the best method of reducing risk.
To help minimise the risk of SUDEP:
- Ensure seizures are correctly diagnosed
- Have regular medical reviews of your epilepsy
- Learn about your epilepsy
- Tell your doctor if you are having seizures
- Follow Treatment plans/take medications as prescribed at the same time each day and ask for advice if you are having unpleasant side effects
- Identify and avoid seizure triggers, such as lack of sleep or excessive alcohol
- Carry out a full risk assessment of your home and work environment
- Give accurate first aid information to those who might care for you – consider the use of an Epilepsy Management Plan and a Seizure Diary
To view a talk on SUDEP by Epileptologist Nick Lawn from Epilepsy WA’s 2021 conference click here.
Epilepsy Management Plan
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 recognise seizure activity and provide documented procedures to follow should an emergency arise.
Plans should include the following information:
- Type of seizure/s
- Known triggers
- A description of the seizure pattern
- Who to contact in an emergency
- Name & dose of antiepileptic medication/s, and
- The time medication is administered.
Plans should also include step by step instructions from the treating doctor on
- how to manage the seizure and
- if emergency intervention treatment is required,
- the specific circumstances under which it is to be administered, and
- the time-frame in which an ambulance should be called.
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 member can provide information and training in the administration of these treatments.
Around the Home
- Consider a microwave instead of stove top or oven
- If using a stove use the back elements and turn pan handles away from the stove
- Consider a temperature controlled hot water service
- Serve hot dishes from a bench instead of carrying them to the table
- Use cordless electrical appliances with automatic switch off and appliances like food processors rather than using sharp knives
- Use rubber gloves when washing dishes
- Use non breakable crockery and have hot drinks in a mug with a lid
- If using a dishwasher place points and sharp objects down and close door when not in use
- Consider cupboards with recessed handles
- Minimise the use of knives; Consider buying pre-sliced food
- Use fixed fireguards around a fireplace
- Consider round rather than square or rectangular coffee tables
- Use shatterproof glass for big windows
- For photosensitive seizures reduce the contrast of the television screen by turning on the lights in the room and sit at least 3 metres from the set. A quality TV (with 100hz refresh rate), LCD or plasma screens are also useful
- LCD screens for computers are flicker free and useful for people with photosensitive epilepsy
- Consider a temperature controlled hot water service
- Always turn on cold water first
- Use a handheld shower attachment in the shower and in the bath if no shower available. Remember to leave the plug out.
- Consider shower curtains rather than a glass screen or in the case of a glass screen use reinforced glass
- Consider rubber backed mats
- Avoid the use of electrical appliances such as hairdryers and electrical razors near water
- Consider the use of a shower chair
- In the toilet an outward opening door is very important
- Toilet roll holder on the floor beside or behind the toilet may minimise injury if someone has a seizure while on the toilet
- Don’t sleep on top bunk and if possible use a low bed
- Consider tightly fitted sheets
- Sleep without a pillow or use a firm porous pillow
- Consider bed alarms or other monitor devices
And more generally…
- Install smoke alarms
- Minimise clutter
- You might want to consider walkways are clear before going to bed at night
- If electrical cords are a consideration, tape them to the floor
- Consider doors that are outward opening, sliding, half doors or doors that are easily removed
- Don’t lock internal doors and if using a deadlock leave the key in the lock. Use security sets for bathrooms and toilets if needed. These can be unlocked from the outside if necessary
- Consider having safety switches in the metre box installed by an electrician
- Minimise sharp edges and corners
- Avoid living in accommodation with stairs or consider a safety gate at the top of the stairs
- Wear an Identification bracelet or have information available in case of a seizure
- Keep medications out of reach of children. Store in a cool dry place and do not remove from pillbox or webster pack ahead of time
- Push button phones can be programmed so that pushing a particular button after a seizure alerts a relative or friend that the person may need some help
- Minimise glass for example in doors, cupboards and table tops
- Consider ramps rather than stairs
- Consider chairs rather than bar stools
Activities should not 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.
Swimming and water sports
- Never swim alone and while participating in water activities take a friend or carer with you
- Let a lifeguard know about your condition
- Wear life-jackets in boats and when fishing
- Avoid scuba diving and high board diving
- Avoid water that is too hot in spas and keep up fluids
- Always wear a helmet (this is law anyway)
- Use bike tracks / lanes where possible
- Always use a safety harness
And more generally…
- Whenever participating in an activity where a fall may be possible or it poses the risk of a head injury, use protective head gear
- Be aware of over exertion or over heating
- Drink plenty of water
- If possible try to choose activities that take place on softer surfaces such as grass, mats etc
- Consider if it is useful to have a gym buddy, if using weights, stationary equipment etc.
Work / School
- What safety considerations are needed?
- Have you informed someone that you have epilepsy?
- Are policies and procedures in place should a seizure occur?
- Is an individual emergency plan necessary?
- Have guidelines with driving and use of machinery been understood?
- Does the workplace or school need some epilepsy education?
- Does the school or workplace have a recovery room?
- Are they aware of helpful resources?
This information has been taken in full, as featured on the Epilepsy Australia website
Important Message: The information contained within this website is not intended to take the place of individual medical advice. Do not make changes to treatment or medications without first discussing with your treating clinician.