How does epilepsy affect my daily life?
Epilepsy does not only have medical implications.
Epilepsy also affects your daily life. If you have recently been diagnosed with epilepsy, you will want to know how this will change your everyday life. Will it pass? Is it hereditary? And what are my limitations and/or restrictions? This page offers you more information.
If you have just been diagnosed with epilepsy, you will have all kinds of questions. Will it pass? Is it hereditary? Will it affect my memory? What are my limitations and/or restrictions; are there things I can’t do? These are all very understandable questions.
Firstly, it is very uncertain whether epilepsy is hereditary or not. This also depends on the type of epilepsy you have. The chance that a child will develop epilepsy if one of their parents has epilepsy is between 0 and 50%. The average risk is approximately between 2 and 8%. You can find more information on heredity on the epilepsy.com website. For questions relating to your own situation, you can also always consult a geneticist who will be able to identify the risks.
There are many different types of epilepsy. You can read more about them here. Some types are related to age. That is to say that the seizures ‘go away’ spontaneously after a certain time. This is called spontaneous remission. Epilepsy caused by brain damage or disease does not stop spontaneously.
Epilepsy may affect your memory, though usually not severe. Problems may include difficulty remembering names and facts. It takes longer to absorb information. If you have had many severe seizures or have suffered head injuries, the chance of memory problems will be higher. Whether or not epilepsy affects your memory also depends on the type of epilepsy and the working of the medication.
It is hard to say how much epilepsy will restrict you in your daily life. It is often a question of learning to cope with it. Knowing what triggers your seizures can make it easier to give certain things up. If you have had a bad night’s sleep, for example, then it is best to avoid any risky activities that day as tiredness is a potential trigger. Activity risks can be reduced in many cases, by making different choices such as having a shower instead of a bath. Another option is to only undertake higher-risk activities together with someone else. Read more below about various important aspects of daily life with epilepsy.
Epilepsy in daily life: Living, learning and working with epilepsy
Epilepsy also influences your way of living and working. The extent will also depend on the frequency and type of seizures or other problems. If you live alone with epilepsy, there are several things you should be aware of. Such as a ground-floor flat rather than an apartment on the 4th floor. When furnishing your home, it is also important to consider your seizures. Make sure there is enough space to protect yourself from potential accidents. You can find more information about living alone with epilepsy here.
If your child has frequent seizures, their epilepsy could adversely affect their learning development. If a child has an absence (light, brief seizure with loss of consciousness) for instance, they will miss bits of the lesson, sometimes without noticing. It is, therefore, an option to ask for an EEG. This can help explain any learning disability and, in turn, help the teacher. Anti-epileptic drugs (AEDs) can also influence learning development. Depending on the situation, certain additional learning aids can be provided. Such as being allowed more time for tests.
How much epilepsy will affect your work depends on your age when you developed epilepsy and the frequency and severity of your seizures. In younger people, epilepsy may influence their choice of a study programme. That makes it easier to choose a job or sector that suits you or your child, where the work is less likely to be affected by the epilepsy. If you are already in a job when you develop epilepsy, it is a good idea to discuss this at work. You might not be able to keep your job, if you are a pilot or a crane operator, for instance. In that case, you would have to be retrained. If, on the other hand, you work in an office, it is no problem to stay in the same job. It is still a good idea to discuss your epilepsy with your colleagues though, so they know what to do if you have a seizure. Applying for a job with epilepsy? You are not obliged to mention your epilepsy. However, do consider whether the work would involve any risks. And if you get the job, it is a good idea to inform people so that they know what to do if you have a seizure. So in short, having epilepsy never means that you are totally unable to work.
Epilepsy in daily life: Transport
Having epilepsy can affect your capacity to participate in traffic safely. You must, therefore, comply with specific regulations imposed by law to guarantee your safety and that of other road users. For all kinds of driving, this will depend on your type of epilepsy and the frequency of your seizures.
There are no legal regulations regarding cycling, so that is always allowed. Whether or not it is sensible, is another matter; a matter of taking your own responsibility. Do you have (many) seizures? Then it might not be such a good idea to cycle or only cycle with someone else. If you cycle alone, take note of where you’re going and how far it is. It is sensible not to cycle along a river or to go for long cycle rides if you are alone.
The potential consequences of an epileptic seizure while driving a car or motorbike are often higher. Not just for you, but also for other road users. That is why regulations have been imposed by law and official assessment rules apply. The exact rules can be found on the website gov.uk. In principle, the rule on driving a car or motorbike with a history of epilepsy specifies the following: If you have had a single epileptic seizure, you are allowed to start driving again after six months if you have had no further seizures. If you have had more than one epileptic seizure, you are allowed to start driving again after one year if you have had no further seizures. There are, of course, exceptions.
If you have your seizures under control, you can apply for a fitness to drive assessment. Do you not yet have a driving licence? Then regardless of any medication, you must have no further seizures for a year before you can take your driving test. If you need to renew your driving licence, you will be required to submit a new statement.
Epilepsy in daily life: Sport and recreation
In general, sport is just as good for someone with epilepsy as it for anyone else. However, if you are a sports fanatic or have a high-risk hobby, then you may have to make some decisions about continuing them. Sports like climbing and flying, but also swimming, are dangerous for people with epilepsy. Physical exertion is not usually thought to trigger an epileptic seizure. There are exceptions, however, which will often depend on your type of epilepsy and the severity of your seizures. It is important to take precautions and, if appropriate, to instruct your teammates what to do in the event of a seizure. Cooling down afterwards is also important to allow your body to transition from exertion to relaxation gradually.
Sport and recreation are important for everyone, with or without epilepsy. Minor risks are then often acceptable because your quality of life improves. It is a good idea to consider this when choosing a sport or hobby for you or your child.
Epilepsy and sleep
If a person with epilepsy has nocturnal seizures, it poses additional risks. If they hurt themselves or feel no pain, for example, or do not come out of a seizure by themselves. If there is nobody to provide adequate assistance, that can even be life-threatening. In some cases, the consequences of such a seizure can be fatal. Read more about SUDEP here. Factors that can contribute to nocturnal seizures occurring include:
The influence of the biological clock
Lack of sleep
As a rule of thumb: the fewer the seizures, the lower the risk. Because many nocturnal seizures go unnoticed, this must become clearer. NightWatch is intended for patients, parents/carers and care professionals looking for effective ways of being alerted in time in the event of sleep seizures.