Social issues, lifestyle and epilepsy
University can be an exciting time offering many opportunities both socially and academically and it is a time when you can build your independence. Whatever your hopes and expectations, making epilepsy just a part of your life may help you to get the most out of your experience at university.
When you go to university, choosing where you want to live is an important decision and there will probably be a range of options about where to live. You may decide to live at home or to move into student accommodation: student halls of residence, or in a shared house or flat. Or you could live on your own.
It’s often worth thinking about what sort of accommodation would suit you best, as well as what you would like.
Could you live in student halls of residence where there will be a warden available at all times, should you need it? Would you be able to stay in halls of residence for your entire course or would you have to move out after the first year?
Do you need any particular equipment to make your living environment safer? For example, an alarm or a shower rather than a bath, or a microwave rather than an oven to make your meals?
Do you need help during or after a seizure? If so, who might be able to help you, and how will you call for help?
It might be a good idea to get in touch with the university accommodation office as soon as possible, to talk through what options are available, what your needs are and how they can best help you.
Who should you tell?
You may already have thought about who you want to tell that you have epilepsy. Or you may feel that you don’t want to tell anyone. If your seizures are controlled, you may feel that there is no need to tell anyone.
The choice is really yours, but you may want to think about the following points.
If you need any support or help – for example, from your lecturers or the student disability service – you will need to tell them that you have epilepsy. While they have to help students with disabilities, they can only do this if you talk to them about your epilepsy.
If you need financial help, such as a Disabled Students’ Allowance, you will need to disclose that you have epilepsy in order to qualify. This also applies to other sources of financial help, such as the Disabled Persons Railcard or other discounted travel.
If you have seizures, it might be useful for people to know about your epilepsy, so that they know what to look out for, and how to help you.
You might just want to tell the people you spend a lot of time with – those that you live with, your classmates or tutor.
It may not be easy to tell someone that you have epilepsy. How do you bring up the subject? When do you tell them – when you first meet or after you know them a bit better? You might have had good or bad experiences of telling people, which can affect how confident you feel about telling other people.
Planning what you want to say might make you feel more confident and more comfortable. You can then tell them how and when you want to, on your terms, or not at all. It is your choice
Call us for some first aid cards that you could give out to people, or use the first aid section of this website to show them how they can help you if you have a seizure.
Leisure and sport
Going out and having fun is important to us all and at university there are plenty of opportunities to do so. So does your epilepsy have to get in the way?
As epilepsy varies from one person to another, what is right for one person may not be right for another. If you know that your epilepsy affects you in a particular way, you can often make your own decisions about what you can do. For example, if your epilepsy makes you very tired, early morning activities might not be for you. If you have seizures without a warning, doing activities with someone who knows about your epilepsy might make it safer.
What sports can I do?
Most people with epilepsy can take part in most sports, but it does depend on how your epilepsy affects you.
Playing team sports that involve other people, like football, can carry a risk of head injury if you collide with someone. Sport and leisure activities in and around water, or at heights, may be risky if you still have seizures. But simple safety measures can reduce the risks in most cases.
Be realistic about what you want to do, what the possible risks could be for you, and how you can reduce those risks. For example, have a friend with you who knows what to do if you have a seizure. Telling other people, such as your team coach or a lifeguard at the pool, about your epilepsy means they can help you if you have a seizure.
Having epilepsy doesn’t have to stop you from trying new things or doing what you enjoy.
TV and computer games
For most people with epilepsy, watching TV and playing computer games won’t cause any problems at all.
However, a small percentage (about 3%) of people with epilepsy have photosensitive epilepsy. This is when seizures are triggered by flashing or flickering lights, or by seeing moving patterns such as stripes or checks. If you have photosensitive epilepsy, some kinds of flashing images, lights or patterns in computer games could trigger seizures. This depends on what the images are, how close you are to the screen and how dark the room is. Computer games that have flashing images may carry a warning on the packaging. Modern flat-screen computers and TVs either do not flicker at all, or have a flicker rate that is too fast to cause a problem.
Theme parks, festivals or gigs?
Rides at theme parks, noise, loud music, crowds and late nights can be exciting or raise stress levels, or can be tiring. For some people these situations could trigger a seizure, but for other people they won’t. Learning whether your epilepsy has any triggers like these can help you make decisions about what you can do.
Making the most of Freshers’ Week
Freshers’ Week can be an exciting time, with lots of activities and events that give you the opportunity to meet new people, make friends and try out new activities. You can also sign up for groups and courses that carry on through the term.
But for some people, it may also feel overwhelming and hectic, with lots going on and crowds of people, and a feeling of pressure to ‘fit in’. Remember that many people will be feeling the same way as you, whether they have epilepsy or not.
Studentastic has lots of good ideas about how to make Freshers' Week work well, such as breaking the ice with your neighbours, feeling happier with your appearance and being yourself.
Alcohol and drugs
Although students are always labelled as drinking too much and taking drugs, this isn’t student life for everyone. But it may be worth thinking about how you might handle conversations, and opportunities, around alcohol and drugs.
Having a good time when you go out is important. But for people whose seizures are triggered by being tired from late nights, or by alcohol or drugs, a party lifestyle can make seizures more likely to happen.
Drinking alcohol is a personal choice and the effect of alcohol varies from one person to another. Some people find that they are OK to drink, while others find that it guarantees a seizure the next day.
It might be useful to find out how many units of alcohol you are drinking and what your limits are. You can check the label to see the strength of what you are drinking.
It is usually recommended that people with epilepsy have no more than 1–2 units per day, for the following reasons:
• Drinking alcohol can trigger seizures, often during a hangover (when your brain is dehydrated). Drinking water in between alcoholic drinks can help reduce the chances of a hangover.
• Being sick could affect the level of anti-epileptic drugs (AEDs) in your system, which may affect how well your seizures are controlled.
• Alcohol can disrupt your sleep, which can make seizures more likely if tiredness is a trigger for you.
• Alcohol does not mix well with some anti-epileptic drugs (AEDs) and can make some side effects worse. The information leaflet that comes with your drugs will normally say if it is best to avoid alcohol.
Not every student is waiting to be offered drugs. But you may be thinking about what to do if you are offered them, or have already decided what you will do.
Whether you take drugs or not is your personal choice, but it might be worth knowing that cannabis, ecstasy, speed, cocaine and other drugs can all increase the chance of having a seizure.
You can find out more about drugs from FRANK.
Sex and relationships
Many young people worry about sex and relationships, whether they have epilepsy or not. Getting close to someone else can be great, but it can also leave you feeling vulnerable.
If you have epilepsy, you might also be thinking about when to tell your partner, and worrying about how it will affect your relationship, if at all.
You might be worried about having a seizure during sex. While this is possible, it is probably no more likely than having a seizure at any other time.
Planning contraception and safe sex is important to protect you and your partner against unwanted pregnancy and sexually transmitted infections (STIs). For girls and young women with epilepsy, there are particular issues around contraception that can affect both seizures and the effectiveness of contraception, as some methods of contraception affect and are affected by anti-epileptic drugs.
See more about sex, drugs and social life.
Risk and safety
Life for people with epilepsy is often a balance between managing epilepsy and doing the things that they want to.
Having epilepsy does cause risks, and there are safety issues to consider. But it is also important to keep risks in perspective and to avoid making generalisations about what you ‘can’t do’ just because you have epilepsy.
The key to looking at safety issues and managing risks is to think about:
• what the activity or situation is
• what the risks associated with this activity or situation are for anyone
• what it is about your epilepsy that puts you at more risk than other people
• how these risks can be reduced.
For example, riding a bike on a busy road can be risky for any cyclist. For someone with well-controlled epilepsy who doesn’t have any seizures, the risk may be no greater. But for someone who has seizures without warning, the risk of injury is probably greater. Cycling on quieter roads or with another person may help to reduce the risk of injury if a seizure happens.
How serious can the risks be?
For most people with epilepsy, seizures last a few seconds or a few minutes and then the person recovers and can carry on with their normal life. But, for some people, there are complications with seizures that can have serious consequences.
Although this is a difficult topic to read about, it might be helpful to know about it, so that you can make informed decisions about managing your epilepsy and the risks around it.
Status epilepticus or 'status'
Usually seizures stop by themselves. When a seizure goes on for a long time without stopping, or repeated seizures happen without the person recovering in between, and this goes on for 5 minutes, the person is in ‘status’. If status happens in a tonic clonic seizure (when the person is unconscious and shakes), an ambulance needs to be called. Emergency medication may need to be given to stop the seizure.
Although it is very rare, it is possible to die due to epilepsy. Sometimes this happens due to sudden unexpected death in epilepsy or ‘SUDEP’. SUDEP is when a person with epilepsy dies suddenly and where no other cause of death is found. It is hard to be sure why SUDEP happens but it may be that during a seizure the person’s breathing or heartbeat is affected.
You may choose to wear an alarm to alert someone if you have a seizure.
Getting the best seizure control possible is often the best way of reducing risks relating to epilepsy and seizures.
Living a fuller life
Trying to find ways of making epilepsy just part of your life might help you to get the most out of going to university.
The key to achieving a fuller life might be to take care of yourself, take control of your epilepsy, plan ahead and make the most of what help and support are available to you.
Dealing with feelings, emotions and epilepsy and a number of other websites and forums such as the Universities and Colleges Admissions Service (UCAS) and the National Union of Students (NUS) or studentastic, the student room and studential that offer information and support.
If you would like to talk to someone about anything you have read here, you can call our helpline.
Information produced: August 2018
If you're considering going to university or if you’ve definitely decided that’s what you want to do, you’ll need to think about what this will mean for you in practical terms and about what support you might need, including financial support. Being well prepared will help you to make the most of your time at university.
Information for young people about epilepsy including how it may affect your life, education, relationships, driving or worklife.
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