If you think you’ve had a seizure it’s important to talk to your family doctor as soon as possible. It’s helpful for the doctor if you (or anyone who saw the seizure) can give them as much information as possible about what happened.
An easy way to help the doctor is by keeping a seizure diary. Each time you think you might have had a seizure, write down what you can remember happened, before, during and after it. If anyone saw the seizure, ask them to describe what happened during it, so you can write it down.
If your family doctor thinks you might have had a seizure, they will arrange for you to see a specialist, usually at your local hospital. The specialist will ask you more questions about what happened and may arrange for you to have some tests, such as an EEG. This is a painless test, where electrodes (flat metal discs) are placed on your head for a period of time. The electrodes pick up the electrical signals from your brain and these are recorded on a computer.
Unfortunately epilepsy is difficult to diagnose. There isn’t one simple test that proves whether or not you have it. The information that you can give to the specialist is really helpful for them when making a diagnosis.
Why me?
It can be hard to come to terms with the fact that you have epilepsy. It’s worth remembering that you are not alone. Epilepsy affects all types of people of all ages. In the UK alone, about 60,000 people under the age of 18 have epilepsy. That’s enough people to fill about 1,000 double-decker buses!
How many people in the world have epilepsy? An estimated 50 million!
Dealing with epilepsy
When your doctor tells you that you have epilepsy it can be a shock – even if you were expecting it. It can take a while to come to terms with the diagnosis, and not just for you, but for your friends and family too. It’s common to feel a wide range of emotions, some good, some bad. Here are some common feelings for people who have been diagnosed with epilepsy.
- Relief that you finally understand what’s been happening
- Worry about going out on your own in case you have a seizure
- Fear of how other people will react to your epilepsy
- Comfort that there are ways to control your epilepsy
- Anger about the fact you have epilepsy and a refusal to accept it
- Frustration because friends and family might suddenly become over-protective
- Resentment that you have epilepsy and your friends don’t
Having epilepsy doesn’t make life easier, but you might find that it doesn’t make it that much harder either. Especially if your seizures are well controlled. Learning more about epilepsy can help you come to terms with it.
You might also find that talking about your epilepsy helps. You could talk to someone you know or, if you prefer, you can call an adviser on the Epilepsy Helpline, tel. 0808 800 5050. It’s free to call if you live in the UK. If you’re not in the UK, the number is +44 113 210 8850.
It can be really helpful to talk to other young people living with epilepsy. As the saying goes, ‘a problem shared is a problem halved’.
You can find ways to contact other young people with epilepsy on the meeting other people page.
What are the risks of having epilepsy?
Most of the time, people with epilepsy recover perfectly well after a seizure. However, it’s important to be aware that for a small number of people there is a risk of dying because of their epilepsy. Sometimes, death may be caused by a seizure itself, or it may be due to accidents that happen because of a seizure. Sometimes, the cause of the person’s epilepsy is to blame, such as brain damage from a head injury.
Is some cases, there’s no clear reason why a person with epilepsy has died. This is called sudden unexpected death in epilepsy (SUDEP).
People who don’t take their anti-epileptic drugs (AEDs) as prescribed, or whose seizures aren’t well controlled, may be at higher risk of SUDEP. Taking your AEDs correctly and talking to your doctor about any problems with your seizures and AEDs can help you to reduce the risks.