managing your epilepsy at university
While you are at home, you may have specific routines relating to your epilepsy and medication, you may also have had help and support from your family and friends. When you go to university and become more independent, you may need to manage your epilepsy differently.
Thinking about how your epilepsy might affect you may help you to feel more confident about dealing with your epilepsy at university. It also gives you a chance to make sure you have support and help in place before starting.
Things to think about might include the following:
• When do you normally take your medication? Will this fit in with your lifestyle at university?
• Would you find it helpful to have a pill box or medication reminder to keep track of your medication?
• Where will you get your anti-epileptic drugs from? Finding your nearest pharmacist can be helpful.
• Would it be useful to tell people about your seizures? You might not want everyone to know, but you might want to tell your new friends or the people that you are living with, so that they know how to help you.
• Would it be useful to carry an ID card or to wear medical jewellery that lets people know that you have epilepsy and what to do if you have a seizure? Check out our website for the contact details of some of the companies.
• Do you keep a record of your seizures – for example, in a seizure diary?
• Do you have a mobile phone to keep in touch with other people, or to use in an emergency?
• Would using a diary or calendar help you to keep track of your work, deadlines and social life? Many laptops and mobile phones have diaries, notes and reminders that might be helpful.
You might also want to think about things like leisure and social activities, drinking, drugs and relationships. See social issues and lifestyle at university.
I don't need everyone to know, but it was just kind of the people I was living with, it was quite important that I tell them. And then if I was sort of talking to people for a kind of a long time, so, you know the conversation just say, “If I seem to kind of 'go out' for a moment, this is what it means”, and just to try and to make it as normal as possible.
Take positive action
There are lots of things you could think about doing to reduce the impact of epilepsy on your life at university. There are lots of suggestions in this section on University and epilepsy. You’ll probably have lots of ideas of your own about what is going to be best for you.
Finding out what is available as far in advance as possible means that the support and help will be there when you need it.
Know your triggers
Some people with epilepsy find that there are certain situations that bring on a seizure. These might include tiredness, stress and forgetting to take anti-epileptic drugs.
If you know what triggers your seizures, you may be able to avoid these situations and reduce the number of seizures you have. Keeping a diary of your seizures, and the situations they happen in, might help you to see if you have any particular triggers. Getting enough sleep and eating well often helps!
Find out more about triggers.
Get good seizure control
Often the best way to make sure epilepsy has as little impact on your life as possible is to get the best seizure control you can, to reduce or stop your seizures completely. Making sure you have a supply of your anti-epileptic drugs and taking them regularly really helps.
Although most people will be fine after a seizure, having seizures can be risky. Seizures can really disrupt your life, they can cause injuries, and in some rare cases it is possible to die from a seizure. This sounds very scary but, for most people with epilepsy, the risk of dying from a seizure is very low. Stopping or reducing the number of seizures helps to keep this risk low. This is why taking anti-epileptic drugs in a regular routine, and getting the best seizure control you can, is so important.
I don't think I'm that high risk ’cos obviously my seizures are well controlled. I make sure I take my medication regularly. It did make me think more about that because, to start with, I was kind of taking it in the morning and in the evening and that varied day to day, so now I'm a lot more organised, I take it at ten and ten.
Get the most from your epilepsy specialist
If you have an appointment with your epilepsy specialist in the lead-up to going to university, you might want to talk to them about any concerns or questions you have. This might be anything from being able to keep in touch and have appointments with them, or any side effects from medication that may affect your learning, or how to get a supply of your anti-epileptic drugs.
It might help to think about what is most important to you right now. Having a clear idea of what you want to achieve from the appointment and writing down a list of questions to take with you might help you to get the most from your appointment.
See what help is available
However your epilepsy affects you, it might be helpful to talk about it. Talking to your tutors means that they know what to expect and how they can support you.
Contacting the student disability service might help you to find out what sources of help and support are available. This might involve getting financial support through a Disabled Student Allowance (opens new window) or it might be something that the university itself offers through its disability support service.
Although universities have an obligation to help and support students with disabilities, they can only do this if you talk to them about what you need.
Register with the university health centre or GP
Finding out where the university health centre or GP is located, and registering with them as soon as possible means that it should be easier to get an appointment if you need one. It is also important for getting your anti-epileptic drug prescriptions. Registering with the GP can be important for more than just your epilepsy.
Epilepsy Society is grateful to YouthHealthTalk (opens new window), and the young people featured on its website, for allowing us to use their quotes.