Epilepsy is a condition that manifests itself in the form of seizures (seizures). These seizures are caused by a sudden, temporary disruption of the electrical impulse transmission in the brain. It is a kind of “short circuit”.
There can be several reasons for the stimulus transmission to be disrupted. This leaflet is intended for people who have developed epilepsy as a result of a brain tumor or brain metastasis or its treatment.
The disturbance of the impulse transmission can be limited to a specific area in the brain, or spread throughout the brain. In the first case, symptoms arise that match the area in the brain where the disturbance occurs. When the whole brain is involved, there are often symptoms of the whole body.
Symptoms
Seizures can manifest themselves in different ways.
Sometimes there is a ‘run-up’ and someone can feel the attack coming. This may be because the person sees something (for example, colored spheres, stars), smells something that is not there, or experiences a strange feeling inside (for example, a warm feeling rising from the abdomen). Not everyone feels an attack coming, it can also occur suddenly.
An attack can manifest itself with very limited symptoms, but can also be very extensive.
Examples of limited seizures include being ‘absent’ for a short time or faltering speech, or uncontrolled movements of an arm or leg.
More extensive attacks can manifest with, for example, jerks or spasms over the whole body and loss of consciousness. A person may also bite his tongue, cheek, or lip, and there may be leakage of urine. After an extensive attack, the person who has had the attack is often very tired, sleepy and sometimes confused. This can last from hours to (several) days. Sometimes there is also muscle pain after an extensive attack.
Getting an attack is often very frightening for the person who had the attack, but also for the environment. It is important to know that most seizures stop on their own within minutes. Usually, a seizure does not cause damage to the brain itself.
The treatment of epilepsy consists of prescribing medicines (anti-epileptics).
Usually drugs are prescribed that must be used daily to prevent seizures.
When a major attack has occurred, a medication is also prescribed that can be used if another attack does occur.
The nasal spray midazolam is often prescribed for this.|You can see a video with instructions for administering midazolam via this link.
There are different types of anticonvulsants. The neurologist and/or nurse specialist will prescribe these medicines and choose a medicine that is most suitable for your situation. He will inform you about the possible side effects. Most epilepsy medications can cause fatigue.
Surgical removal of the tumor (or part of it) and radiotherapy can sometimes lead to a reduction or even disappearance of the symptoms of epilepsy. But unfortunately they can also temporarily or permanently pose a risk for the occurrence of epilepsy. This is due to the possible temporary increase of swelling during the treatment or the occurrence of a kind of “scarring” afterwards. In many cases, the use of antiepileptic drugs will remain necessary, but the dosage and number of antiepileptic drugs can sometimes be reduced. Unfortunately, it is not possible for every patient to get the seizures completely under control with medication. Keep in mind that the chance of an attack is greater if you have a fever or the flu. In women, the risk is also greater when there are hormonal fluctuations
Reduce the chance of an attack
The following tips can help reduce the chance of an attack:
- Use your medications as prescribed.
- Make sure you have enough medication in stock, order new ones in time.
- Try to get enough sleep
- Try to avoid stress and tension when possible
- Do not do drugs
- Preferably do not drink alcohol, or at least no more than one glass a day.
Drinking alcohol can sometimes trigger an attack. Also, the use of epilepsy medication in combination with alcohol is not good for the body
Fatigue, tension, fever, hormonal changes and alcohol and drug use are not the cause of epilepsy. But they can sometimes provoke an attack. They are therefore called “triggers” or “triggers”.
What to do in case of an attack?
When someone has been diagnosed with epilepsy, it is important that people around him or her know what to do if a seizure occurs. In general, the following advice applies:
When an attack occurs:
- Stay with the person, see what happens.
- Check the time to determine how long the attack will last.
- Try to avoid injury. For example, push furniture that is close to the side. You can put something soft under the head.
- Try any movements of arms and/or legs not to stop.
- Give nothing to eat or drink.
- Preferably do not move the person, only do this if the situation is unsafe.
When the person is not conscious:
- Lay the person on their side to keep the airway clear.
- Loosen tight clothing (jacket, tie).
- Stop nothing between the teeth
In general, an epileptic seizure goes away on its own.
If the seizure lasts more than three minutes and seizure-breaking medication has already been prescribed (in spray or drop form):
- administer the prescribed medication
- Note: do not administer any pills!
If the attack lasts longer than 5 minutes or if in doubt:
Swimming and water sports
In general, the advice for people with epilepsy is to swim or take a bath in the presence of someone who is aware of the situation. This person can then immediately ensure that the head remains above water when a seizure occurs. Swim, exercise or bathe only in clear water that is shallow enough to stand. Do not walk or cycle near water.
Bicycles
Wear a bicycle helmet when the attacks are not (yet) completely under control.
Working and exercising at height
Working on rooftops, climbing ladders and practicing extreme sports such as skydiving, rock climbing and diving can involve risks. Avoid them or take proper safety precautions.
To travel
When you travel, make sure you take enough medication with you.
Take an overview of your medicines with you. You can ask for this at your pharmacy. For medicines that fall under the Opium Act, such as midazolam, you must take a special statement with you when you go abroad. More information can be found at www.hetcak.nl. Prepare well in advance of your vacation!
Driving
Special rules apply to driving a car and motorbike. You can read more about this in the folder: Safely on the road with brain tumors and metastases in the brain.
Useful websites and apps
On the website www.epilepsie.nl You will find additional information, including about work, travel and sports. There is an advice line for independent information and for a conversation with an experienced expert.
On the site you can also order tickets for your jacket pocket and/or mobile phone, so that people know who you are and what to do if you have an attack.
Co-app
The Medapp app has a separate epilepsy module. You can enter your medicines in this app and the times at which you should take them. You can be notified when you need to take them. Optionally, you can enter attacks in a “file”. There is also an alarm button that forwards to a telephone number that you have chosen yourself. You can find the app in the App store or Play store. Or look at medapp.nu.
If you have any questions, please contact your regular contact person (directing nurse, nurse specialist) or medical specialist.