Information

Epilepsy Youth Page

What about my social life and leisure activities?

Having epilepsy doesn't mean that you can't go out and enjoy yourself like other people. However if your seizures are uncontrolled you may need to take extra care in certain situations.
Decisions about whether to take part in particular sports need to be made on an individual basis, depending on how frequent and severe your seizures are. Most activities can be made safer with simple measures to minimise any potential risk. For example, when swimming, it is a good idea to go with someone who knows what to do if you have a seizure, and to inform the lifeguard at the pool about your condition. Likewise, if you cycle, it is best to go with a friend, avoid busy roads where possible, and wear a cycle helmet.
Most people with epilepsy can go to nightclubs without being affected by the strobe lights. A small number of people have photosensitive epilepsy, which means that their seizures may be triggered by flashing lights. This type of epilepsy can be diagnosed in an EEG and is usually easily controlled with medication, so it may be worth asking your doctor if you are photosensitive.
In the same way, most people with epilepsy can watch TV and use computers and playstations without any problem. If you are photosensitive then TV or computers might affect you; if so it is a good idea to take regular breaks from the screen, not sit too closely to the TV and to make sure the room is well lit.
For most people with epilepsy the occasional alcoholic drink causes no problems, however drinking too much can trigger seizures, particularly in the hangover period. This can be due to increased sensitivity to the effects of alcohol or reduction of the effectiveness of epilepsy medication. Taking recreational drugs such as cannabis or ecstasy, can make seizures more likely, so these are not recommended.

Will I be able to get a job?

There are about 100,000 people with epilepsy at work in the UK today. Research has shown that on average, they have fewer accidents than other employees, take less time off work and have good job loyalty records. Therefore epilepsy shouldn't stop you achieving your goals, it will be your skills, qualifications and experience that are the most important selling points to a prospective employer, as they are for anyone else. If you have a positive attitude towards your epilepsy, this will also help.
Most careers are open to people with epilepsy who also have the necessary qualifications. You should be able to follow the career of your choice. However it is important to be realistic and to consider how in some situations, uncontrolled seizures might prevent you from being safe, for example working with some machinery or at heights. There are only a few occupations which cannot accept people with a recent history of seizures who are taking medication. These are aircraft pilot, ambulance driver, merchant seaman, LGV, PCV or taxi driver, train driver, and the armed services, fire brigade or police. There are also other jobs where you might experience difficulty, such as teaching P.E., science and technology, working with young children, jobs in the prison service involving close contact with inmates and some areas of nursing. If your seizures have been well controlled for a year, your career opportunities may increase.
In the UK, the employment service provides a wide range of services to help people with disabilities to find and keep suitable jobs. There is a network of PACTs (Placing, Assessment and Counselling Teams) made up of Disability Employment Advisors (DEAs), seek further guidance from these sources.

Being able to drive is one of the most important aspects of gaining independence. The current driving regulations are that if you have not had any seizures for 12 months (on or off medication), you can apply for your licence. If you have only had nocturnal seizures for the last 3 years, you can still apply for your licence. The regulations are more strict if you want to drive a large goods vehicle. Because of the Disability Discrimination Act you should be able to get car insurance without paying more than other people.

Having epilepsy doesn't usually cause problems with sex, although some people may have difficulties, perhaps if they are anxious or lacking in confidence, or possibly due to their medication.
All available methods of contraception can be used, but the contraceptive pill can be made less effective by some antiepileptic drugs. It's a good idea to discuss this with your doctor to make sure you are taking an appropriate dose of the pill.
Effective contraception is vital to ensure that you do not become pregnant unless you want to. Having epilepsy doesn't stop you from having children. It is important though to talk to your neurologist before conceiving, or if not as early on in pregnancy as possible. Antiepileptic medication can affect the baby in a small number of cases, so your neurologist may wish to review your medication, particularly if your seizures are well controlled, and to prescribe a higher than normal level of folic acid. During pregnancy your seizures may become more or less frequent, or they may be unaffected. You will usually be able to breastfeed your baby even if you are taking medication. If you are still having seizures, you may need to take some precautions when looking after your baby, for example when feeding and bathing.

Different people are affected in different ways but the following are examples of things known to influence seizure frequency. Tiredness due to insufficient sleep can be a trigger to seizures. However the occassional late night should not affect you if you have an otherwise regular sleep pattern. Maintaining the recommended dosage of medication is also an important factor. With most people if a regular level is interupted due to continually missing doses their seizures can often worsen or reoccur. Even if an improvement in seizure is experienced a person must not alter or stop medication without advice from their doctor. Another factor to consider as a trigger is stress this could be due to either increased anxiety or excitement. Therefore finding methods to reduce or eliminate stress can be useful.

In my last entry, there was little space to write about the important things in life for the average 19-year-old. Even with epilepsy, there are still the concerns about family, friends, college, going out and being generally misunderstood.

Thursday, August 19 1999 was an important test for me. Had life gone according to plan, that would have been the day my life took a huge step forward. It was the day I would have had my A-Level results, had I not been ill.

That morning, I tried to imagine what would go through my mind when friends called to tell me their results. Would I feel jealous, cheated and angry, or proud and pleased? There was no choice but to wait and see, and not deny my feelings.

When they told me their results, I genuinely felt happy for them, and proud of myself for moving on. One year is no price to pay for a good quality of life.

The next day was a good day. It began with some work at college as acting President of the Students' Union. I then got my Government and Politics module result. I am proud and still quite stunned to say that I got an A, and now feel that I am back on track again for the success that might have been mine this summer.

Cinema trip

Not all days are good days and progress can be agonisingly slow. As my seizures are triggered, among other things, by light reflecting on water, going ice skating with my friend had to be cancelled. My friend and I went to the cinema instead to see Notting Hill.

Now, this was an absolute milestone for me, as due to my photosensitivity, I had a fear of going to the cinema and had not been since my encephalitis in 1996. All I could imagine was having a 'big one' in the cinema and ruining the film for everyone else. I put fear aside, bought a massive bucket of popcorn and just enjoyed the film. Nothing happened. No problem!

Walking out of that film was exhilarating. After well over three years, I had finally done it. No-one was quite as happy about it as I was; they did not realise what a big deal it was for me. Responses ranged from "Nice one!" to "So?". The ticket stub has been kept for posterity.

House party

My cousin Yog's leaving do was my first teenage house party. Food, drink, loud music, a house bursting at the seams.

It was wicked and Ma let me stay overnight. It was my first night away from my immediate family since my stay in the National Hospital. This meant breaking all the rules of routine, especially sleeping. I was finally banished to bed by my cousins at 5:30am.

To be honest, although I went to bed thrilled at surviving the party, I knew the consequences and prepared myself for a less than perfect Sunday. I did not have a seizure, however a couple of days later I felt as if I had gone round in the washing machine a few times. Over-excitement and three hours of sleep could do that to anyone, although a cocktail of anti-convulsants probably does not help.

Sunday was in many ways more satisfying than the hedonism of the previous night, as a smaller group of us talked, ate lunch and really connected. I made friends with guy called Alan, who has no problem whatsoever with my epilepsy. We are very close now.