Living independently with epilepsy
Epilepsy and living alone
Living independently with epilepsy is not without risk. These risks include a higher risk of accidents and premature death.
Epilepsy has a considerable impact and significant social consequences. It can sometimes prevent someone from living alone or continuing to live independently. There often won’t be anybody with you if you have a seizure, for instance. Taking appropriate measures can help and help reduce the stress and uncertainty. Read here for information about epilepsy treatment and advice on living independently with epilepsy to help you feel safer and more confident.
Epilepsy often develops at birth, although some people are diagnosed with epilepsy at a later age. Besides genetic factors, causes also include environmental factors. Many types of epilepsy can be treated effectively with medication. Anti-epileptic drugs (AEDs) suppress epileptic seizures, giving you more confidence and allowing you to be more independent. In some cases, surgery could be an option.
However, 30% of people with epilepsy will continue to have seizures. For these people, it is especially important that they organise their life and their environment in such a way that it is safe for them to live independently.
Living independently with epilepsy
Having epilepsy does not necessarily mean that you have to have someone with you at all times. However, it is important to be aware of the risks and to take appropriate measures wherever possible.
Firstly, it is important that you consider your epilepsy when choosing where to live. If your seizures happen frequently, ground floor accommodation is recommended or, if you opt to live in a flat, there should preferably be a lift. Frequent seizures will also have a negative effect on your mobility. So take the possible public transport options into account when choosing a home. Another important consideration is the safety and security of your home. Doors locked from the inside make providing emergency help more difficult. But safety also includes such things as plug socket covers and time locks on electrical appliances. A seizure detection system able to remotely call for assistance could also be an option for some people.
In addition, when furnishing your home, it is important to allow enough space to walk/fall safely. Be careful with glass objects and sharp corners. Cooking for themselves is also a challenge for epileptics living alone who frequently have seizures. Alternatives such as ‘meals on wheels’ or eating with friends/family may be an option. Standard safety regulations also apply, of course, such as a fire alarm and smoke detector. Ensure that, at minimum, there is a smoke detector in the kitchen and the living room. Make sure your first-aid kit includes instructions on what someone should do in the event of an epileptic seizure.
Social control by friends/family/carers is often a great help to people living independently. Regularly visiting or phoning people living independently increase their sense of security. Nominated responders must be instructed, remotely, on what to do in accordance with a doctor’s directions. It is advisable to arrange this in advance so that these responders know what is expected of them.
More information on living independently with epilepsy is available on epilepsy.com
Sleep and epileptics living independently
Epileptic seizures can also occur at night, sometimes without you even noticing.
In exceptional cases, a night-time seizure can result in death: SUDEP (Sudden Unexpected Death in Epilepsy). Despite extensive examination, a cause of death is often never found. On average, 1 in every 1,000 people with epilepsy dies of SUDEP every year. We know that SUDEP is less likely to occur if there is someone with the person having the seizure; people who are home alone or live independently are therefore more at risk.
Unfortunately, there are no specific precautionary measures that can prevent a SUDEP. The risk can only be reduced by minimising the number of seizures. Besides regular check-ups with your doctor, taking your medication correctly, and avoiding situations which could trigger a seizure, a seizure detection system is therefore recommended. An early warning system is essential in the event of nocturnal seizures. An alarm without adequate assistance will not reduce the risk of a SUDEP. An early warning system will detect a seizure at an early stage so that appropriate assistance can be provided quickly. This will increase your sense of security and confidence if you live independently.
NightWatch: safe and effective seizure detection system
NightWatch is a system that can detect the most dangerous epileptic seizures and remotely call for assistance. The system consists of comfortable, wireless armband which monitors your heart rate and movements while you are in bed. If the system detects a potentially severe epileptic seizure, it will alert the nominated responders. This is done via a corresponding GSM pager system. NightWatch allows you to enter the phone numbers of 1-5 nominated responders.
More confidence and insight
The system alerts the nominated responders remotely so that they can attend immediately. The module also has an emergency button, which you can press if you need immediate assistance. NightWatch reduces stress and helps you feel safe and confident. It offers people living independently more privacy and responders more peace of mind. The data can also be read out via an online portal, giving you a better indication of how the night was. Furthermore, the data can be shared with the neurologist, enabling them to advise appropriately.