Staying safe with Epilepsy - Design for Independence

Staying safe when out and about

There are lots of different types of epilepsy, which means different people will be affected in different ways when they’re out and about.

All seizures start in the brain. Some of them are very minor. It’s important to be aware of all types of seizures – otherwise they may go unnoticed. If you are diagnosed with epilepsy, you will know the different signs and symptoms that relate to your epilepsy.

You may have warning signs that you are about to have a seizure, this means that you can get into a safe position before the seizure occurs. Whereas others don’t know they are about to have a seizure, which makes the situation a lot riskier and more difficult:

It could just be that you have a fall outside, depending on the type of seizure that you experience
You could be driving and have a car accident
Or you could fall over in the street, for example, if you had a Tonic Clonic seizure

These could all be especially problematic if you are out on your own and a lot of people try to come and help you but don’t really know how to properly respond to a seizure. This could include ringing an ambulance, when all you really need is to go home to rest.

This raises a key issue, which is that people aren’t really aware of how to respond to someone experiencing an epileptic seizure. If you know that you don’t have warnings before an epileptic seizure, it’s really important that you have someone with you at all times. If that’s not possible, you need a way to contact a carer or family member and let them know where you are at the onset of a seizure.

There are all sorts of devices and mobile apps that allow you to do this and make contact with people that know who you are, know all about your medical condition and know how to respond. It’s also really important for you to carry some information about yourself with you – this could be on a bracelet or a card in your purse/wallet that would tell someone about your condition and what they should do.

If you are responsible for caring for someone with epilepsy, then you need to make sure you are always available. You both need to think about the best methods of communicating – this could be via mobile phone or any other type of device that allows you to make direct contact with each other.

If possible, you also want to be able to know exactly where the person you are caring for is. When a person with epilepsy wakes up following a big seizure, they are usually very confused and tired. This means that they may not be focused enough or able to explain exactly where they are. So it’s vital that, as well as being able to contact each other, you also have a way of being able to see exactly where they are.

Design for Independence has an Occupational Therapist who has epilepsy and is not allowed to work as a lone worker or visit people on her own. However, she can work when there is another person working with her – going on visits and to care units in hospitals. She has warning signs that she knows to look out for before she has a seizure and uses a smartwatch, which allows her to contact her boyfriend who can come and help her and take her home if she’s not feeling very well. For her, the smartwatch allows her to be independent, carry on working and keep up her social life.

As a loved one, you don’t really let someone with epilepsy go out and about on their own without having some way to make contact with you. However, devices like a smartwatch give you and your loved ones peace of mind and allow you to be as independent as possible.

It’s really important to be open and honest about your epilepsy with the people around you. This doesn’t mean you should tell everyone about your condition, but if you go to a certain place on a regular basis then just let them know what is likely to happen and what they can do to help. This might include letting them know how they can support you but also what they shouldn’t do when you have a seizure.

If you’re working or moving from one place to another and there’s someone you are close with, ask them to share their knowledge about your condition with other people. This will be beneficial not just for that particular person with epilepsy, but also anyone else that they may encounter with epilepsy.

Spreading awareness is incredibly important – there is a real lack of knowledge when it comes to understanding epilepsy and what to do and what not to do. This will help to spread awareness and help our society understand the condition more.

Staying Safe at Home

Staying safe and independent within your home is as an important part of everyday life if you have epilepsy.

There are many various types of seizures that you will see in someone living with epilepsy. All epileptic seizures start in the brain. Some of them are very minor, but it’s important to be aware of all types of seizures – otherwise they may go unnoticed.

If you are diagnosed with epilepsy, you will know the different signs and symptoms that relate to your epilepsy. For example, not all seizures involve convulsions (jerking or shaking movements). Some people seem vacant, wander around or are confused during a seizure. Another type of seizure could be minor jerks, so it’s as if the person’s muscles are jerking, twitching and becoming really stiff, but then the seizure will stop after a minute or so.

If the seizures happen in the occipital lobe of the brain, which is responsible for our vision, the person’s vision will be disturbed and they might have hallucinations, so seeing colours or images in front of them. Or they could experience Tonic Clonic seizures, which is one of the bigger seizures. This type of seizure happens without warning, the person will usually become unconscious. This type of seizure involves all the muscle groups in the body and can cause you to fall on the floor, usually backwards.

In some situations, the person with epilepsy can also end up opening their bowels and emptying their bladder. So these are the big seizures that you really try to avoid, if you know what triggers them.

There are obviously risks in the home for a person living with epilepsy. One of the most important things to consider is that it is possible to die from epilepsy, which some people are not actually aware of. Especially if the seizure lasts more than five minutes and the person is unconscious.

Some seizures happen during sleep. It’s sometimes difficult to know whether or not they are happening. But it is as important to monitor the seizures and support the person – touch them, call out their name to try and encourage them to wake up.

If you fall during seizures, the danger of getting hurt comes from anything that you may bang into when you experience a seizure. It’s important to make sure that the environment you’re walking about in, such as the different rooms within your home, are safe and free of any potential hazards.

You can take practical steps to minimise the risk of harm when you’re at home. It has been known in the past for people to drown in their bath or fall down the stairs because they have had an epileptic fit. Try and avoid using the bath if you know that you have no warning that a seizure is about to occur. Using the shower is a safer option. Living in a bungalow or downstairs will also reduce the risk of falling on the stairs.

You should consider having smoke alarms that are connected to the emergency services and a carer or relative, in case you have an epileptic fit whilst cooking.

You should also consider flood alarms. If a tap was left running and you had a fit, forgetting about it when you came to, there is the possibility of flooding. The flood alarm can be connected to a loved one or a monitoring service in case of a flood. This way, you can minimise any damage that a flood could have caused.

If you live alone and you have someone who cares for you, it’s important for them to know that you have had a fit so that they can support you and come and see you afterwards. Wrist-worn epilepsy devices are extremely helpful at doing this. They allow you to alert another person, carer or family member, that you’re having a seizure without you having to do anything. You can also use the record of previous fits and share it with your consultant. If you do live with someone else but they’re in another room, for example when you’re asleep at night, they will still be alerted if you have a seizure. This will allow them to support you as soon as your seizure occurs.

It’s important to see a specialist and take the time and effort to try and reduce the amount of seizures you have, using the right medication and treatments for your epilepsy. This usually takes time and requires persistence from both yourself and your consultant.

However, there is a lot that can be done to reduce epileptic seizures for some people. You need to be able to monitor your seizures – to check whether they are increasing or if they are changing in any way. When you see your consultant, you can then go back to them and give them that report. Some of the epilepsy monitors and devices will support you in recording all the information accurately.

Your carer can also help to make sure that you are safe and recover well after you have experienced a seizure. They will be able to help minimise any harm that might occur during a seizure. It has been known that, if a seizure lasts a long time, it can be stopped by having someone with you talking to you and making physical contact. Your carer can be there to support you during your seizure and keep you calm.

You shouldn’t stop living independently when there is the help out there. There are a lot of devices and technology out there that can allow you to stay independent. Carry on enjoying the opportunities that you have, obviously whilst remaining safe and within your capabilities. Go out and enjoy your social life because some people can become very scared and withdrawn, only living in their little bubble.

Finally, be open about your epilepsy. Don’t be afraid to tell those around you about it so that they are able to support you if you need help.