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Epilepsy

Epilepsy is a condition that affects the electrical activity in the brain. This electricity makes your body feel different, or makes it do things that you can’t control. The normal signals breakdown and there is a temporary problem in the communication between cells in the brain. When this happens, you have a fit (seizure) but not everyone who has a fit has epilepsy. Sometimes you can have a fit because you are very unwell or have an infection. It does not mean you will continue to have fits.

Why do you get epilepsy?

In most people, a reason is not found for why they have epilepsy. Often doctors can't pinpoint exactly what causes epilepsy in a particular individual. However, scientists do know that these are some of the things that can make a person more likely to develop epilepsy:

  • a brain injury, such as from a car crash or bike accident
  • an infection or illness that affected the developing brain of a baby during pregnancy
  • lack of oxygen to a baby’s brain during childbirth
  • meningitis, encephalitis, or any other type of infection that affects the brain
  • brain tumors or strokes
  • poisoning, such as lead or alcohol poisoning

Epilepsy is not contagious. You can't catch it from someone who has it. Epilepsy is not passed down through families (inherited) in the same way that blue eyes or brown hair are, but a person who has a close relative with epilepsy has a slightly higher risk for epilepsy than somebody with no family history of seizures.

What does a fit look like?

Seizures may look frightening, but they're not painful. They affect different people in different ways. There are lots of different types of fits and they all look different. Fits can affect one part of the body like an arm or a leg, or they affect the whole of the body where both arms and legs are shaking and you lose consciousness.

Sometimes a fit can just be when you have a particular sensation or when you seem to lose concentration and are just absent for a while. It is possible that you will not even be aware that this is happening and none of this is stuff that you can control when it is happening to you.

It is normal to feel confused or tired when the fit is over.

What can trigger a fit?

  • Bright lights, flashing lights
  • Being tired, lack of sleep
  • Stress
  • Fever and Illness
  • Drugs: cannabis, ecstasy and cocaine can increase your chance of having a seizure.
  • Medications: The contraceptive pill and antibiotics can affect the way medications for your epilepsy work. Let the doctor know who is prescribing the tablets for you. They will make adjustments to the dose.
  • Alcohol

You might feel tired and confused after a fit. Take some time: warm up, go to sleep if you need to.

What treatment can you get?

The good news is that medications can keep fits at bay. The bad news is that they cannot cure epilepsy. Your GP or a hospital doctor will usually start you on a drug and explain how you need to take it.

Anti-epileptic drugs (AED) can have side effects. If you are not getting on with the drug that you have been prescribed, it is best to tell your doctor.  If you discuss what is going on, you can get the right drug for you. The right drug for you is the one with the least side effects that keeps the seizures away. It is not easy to remember to take tablets but if you manage to do this, you will be more in control of your epilepsy.

What should someone do if you have a seizure?

  • Stay calm
  • Help (but don't force) the person to lie down on his or her side, preferably on a soft surface, and place something soft under the person's head
  • Take the person's glasses or backpack off and loosen any tight clothing near the neck
  • Don't restrain or hold the person
  • Move objects, especially sharp or hard ones, away from the person
  • Stay with the person or make sure another friend or trusted person stays with him or her
  • Talk with the person in a calm, reassuring way after the seizure is over
  • Note the time that the seizure starts and stops. Observe the event and be able to describe what happened before, during, and after the seizure
  • Put the person in the recovery position
  • Do not place an object into the person's mouth during a seizure
  • If the seizure lasts longer than 5 minutes, you should call an ambulance

There's usually no need to call 999 if the person having a seizure is known to have epilepsy. However, if the person is injured, has another medical condition like diabetes, or has a long seizure or multiple seizures, he or she may need medical attention.

What about exercise?

Like everyone else, this is good for you so go out and get sweaty! If your seizure control is not so good, you might want to have people around you whilst you are exercising just in case you have a seizure. Talk to teachers or trainers about your epilepsy, this way they will know what to do if you have a fit and you might feel more confident. There's some great info about sport and activities on the fitchance website

If you are in water (swimming) or at a height, it is always good to have people around you and to let someone know what to do if you have a seizure. Being unconscious in water can be dangerous but you can still go swimming. You just need to plan ahead a bit more.

Living with Epilepsy

People with epilepsy can and do live normal lives. Many athletes, authors, politicians, entrepreneurs, doctors, parents, and artists have epilepsy.

If you have epilepsy, you can still become involved in extracurricular activities, go on dates, and get a job. Your doctor will give you instructions about taking precautions to protect yourself in various situations.

Should you tell people?

This is a tricky one. Only you can decide but here are a few things you might think about.

Reasons why you might want to tell people:

  • It is part of you, nothing to be ashamed about so why hide it?
  • Having someone to talk about epilepsy with
  • Knowing someone will help you out if you have a seizure (at school, if you are out)
  • So you can relax and not always be worried that you are hiding something
  • So that other people understand that people with epilepsy are the same as anyone else.

Reasons why you might worry about telling people:

  • Being worried what they think
  • Being treated differently
  • People freaking out that you will have a fit
  • People thinking that you have brain damage
  • People not fancying you back
  • People thinking it is contagious (thinking that they can catch it from you)
  • Because it is private and part of your health, and you would like some confidentiality

It might be an idea to tell people that you trust and who can help you out if you have a seizure. Other people will understand but it is like any sort of prejudice; it takes a while for people to click that you are in fact exactly the same as them. This is not your fault. There are a lot of misconceptions (untruths) out there. You don't have to battle with them all but as you gain confidence and feel positive about having epilepsy, you might want to.

Going out

If you are epileptic you can still have relationships and you can live your life. Only you will be able to decide what you are comfortable doing.

Some people have specific triggers. If you are photosensitive (your doctor can tell you), the flickering lights in a club might trigger a seizure but there are clubs which don't use these lights. You can find out before you go out to try and make sure your epilepsy will not affect your night out.

Alcohol

You can drink alcohol but watch out how it affects you with your epilepsy medication because the two can interact. Anyone who drinks a lot can have a seizure whether they have epilepsy or not, but you might have one with only a few drinks. If you drink water in between drinking alcoholic drinks this can help.
A seizure might actually happen when you have a hangover rather than when you are out. The main thing is to try and know your body and do what you are comfortable with. You don't have to drink to have a good time.

Sex

Epilepsy does not stop you from having relationships and if you are sexually active, you can continue having sex. You can get close with someone but it is really important to have safe sex, to use a condom and think about contraception. You can talk to your GP or come in and talk about this with us.

It is important to talk about using contraception if you are taking medication for your epilepsy because some contraceptive medications might react badly with medications for epilepsy. The antiepileptic medication and the pill interact with each other but there are other solutions.  Check out zone 5 for more information on having safe sex!

Condoms and epilepsy are fully compatible so wrap it up!

Drugs

If you are epileptic and use illegal drugs, trouble is not far behind! Many illegal drugs can cause seizures whether you have epilepsy or not (for example cocaine). Seizures can be caused or made worse by the use of uppers (amphetamines), downers (barbiturates, benzodiazepines), heroin, certain pain killers, LSD ("acid"), PCP ("angel dust"), or "ecstasy." The effects of these drugs on epilepsy are not known with certainty, but they can bring on seizures by causing the user to forget to take antiepileptic medications or to lose sleep. These drugs may also have direct and indirect (withdrawal) effects on the brain.  It is very important to know all the facts before trying any drugs, go to www.talktofrank.com for more info or come in and see us.

Driving

Whether or not you can drive or learn to drive depends on how many seizures you are getting and whether they are at night or during the day. You need to inform the people that issue out licences (DVLA) www.dvla.gov.uk.

You need to be seizure free for a year before the DVLA will give you a licence or provisional licence. If you only have seizures in your sleep, the DVLA will ask you to make sure this is the case for 3 years and then you can reapply for a licence.

This seems pretty harsh but the DVLA needs to make sure that the roads are safe for you and for everyone else. If you have a seizure whilst you were driving, it could be disastrous!

There are other ways of getting around and now we need to be aware of our carbon footprint, this might actually be a good opportunity to do something for the planet. Don't let it restrict your freedom because that might get you down.

Jobs

You should be able to do most jobs unless they involve a risk like driving, working with unguarded machinery, being near open fire or water, or working at heights.

You don't need to tell your employers that you have epilepsy but usually, the more you inform them, the better able they are to adjust.

There is something called the DDA (Disabilities Discrimination Act) which means that people cannot refuse to employ you just because you have epilepsy. The only employers that do not have to follow this are the Army, the Navy and the Royal Air Force.

Check out www.epilepsy.org.uk/ for more information. There are help lines and forums that you can go on if you want to talk to someone. Remember, you can always drop in and see us.

Related Questions

  • Age: 14
    Gender: Female

    Question:

    ive got a blood test in a couple of weeks and im scared coz I've been told they inject into ur vein, could you tell me what they really do because im dreading it :/

    Answer:

    A blood test is a very routine test, and the person doing it will be very proficient. A very thin needle is inserted into a vein, usually in the bend of your arm where veins are prominent, and a small amount of blood is taken out.  It can be uncomfortable but not really painful; the thought of it is worse than the reality. 

    It is possible to have some numbing cream put on beforehand. This takes about 20-40 minutes to work, so sometimes it is better to get it over with quickly than get even more anxious while waiting for the cream to work!

  • Age: 14
    Gender: Female

    Question:

    ive had a bladder problem for over half of my life, and its got worse. ive just managed to get some medication for it, would i be on them for long?

    Answer:

    As you have had this condition for most of your life you probably have a specialist or your doctor who sees you regularly. If this is the case its probably best to speak with them as they will have good picture of the history. Having said that we would be very happy to talk through your condition and treatment and help clarify any questions or concerns you may have. Naturally we would need more information which would best shared in a private consultation. If you are local please drop in to one of our clinics or if you are further away give us a call and we can talk on the phone.

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