Epilepsy in adults: Treatment with medication
Epilepsy medications can prevent seizures. But they do not work in everyone. It is sometimes possible for people to stop taking medication if they haven't had a seizure for several years.
An epileptic seizure is caused by hyperactivity in the brain's nerve cells. Anti-epileptic drugs (AEDs) work by lowering this level of activity. Although AEDs do not cure the underlying causes of epilepsy, they can lower the risk of seizures.
The medicine is available in the form of tablets, capsules or syrups. Some can also be injected into a vein, given intravenously through a drip (IV infusion), or inserted into the rectum in the form of a suppository. They can have some unpleasant side effects, but are usually well tolerated at low doses. That is why it is important for each individual person to consider whether to have treatment and, if so, what dose of which medication would be suitable.
It is impossible to know beforehand whether a particular drug will help. Some people stop having seizures after taking the first medication they try. Other times it can take much longer to find the right treatment. In some cases the drugs do not help, or only help very little.
When does it make sense to take medication?
It is not always a good idea to use medication right away if someone has just had a seizure for the first time. Many people do not have a second seizure even without taking medication.
The decision whether or not to start treatment will depend on many issues that you should discuss with a doctor:
- How likely is another seizure?
- What type of epilepsy is it? What happens during the seizures?
- How much do the seizures affect quality of life?
- How likely is it that medication will prevent seizures?
- What are the possible side effects of the medication?
Treatment may offer only few advantages if the seizures are very rare and also mild, and have very little impact on quality of life.
Tests performed after the first seizure show that some people are at a greater risk of having more seizures. These include people who have brain damage or brain disease that can trigger the seizures. This is also true of people who have been shown to have a higher risk of seizures in an EEG (electroencephalogram) test. They are often advised to already start taking medication after they have had their first seizure.
What medication options are there?
More than 20 different drugs have been approved for the treatment of epilepsy in Germany. Different kinds of drugs are suitable for different forms of epilepsy. The most suitable medication will depend both on the effectiveness and possible side effects. Some people also tolerate certain drugs better than others. A person's individual life circumstances and personal needs will influence decisions about treatment as well.
If you decide to have treatment for epilepsy, it usually starts with a single drug at a low dose. If that does not help enough, the dose is typically increased. And if that does not work, or if the side effects are too strong, a different drug is tried. People often have to try out a number of different drugs before finding one that works. It is also possible to combine different drugs.
What drugs are used to treat generalized epilepsy?
The following table shows the most common drugs for treating generalized epilepsy:
Type of epilepsy
Idiopathic generalized epilepsy (epilepsy that affects the entire brain and has a genetic cause)
Refractory idiopathic generalized epilepsy (generalized epilepsy with recurrent seizures despite drug treatment)
Only in combination with other drugs:
What drugs are used to treat partial (focal) epilepsy?
The following table shows the most common drugs for treating partial epilepsy:
Type of epilepsy
|Partial epilepsy (epilepsy affecting one area of
Refractory partial epilepsy (partial epilepsy with recurrent seizures despite drug treatment)
Only in combination with other drugs:
How effective are these medications?
The aim of drug treatment is to prevent epileptic seizures. If this is not possible, then the goal is to at least reduce the number of seizures.
Drug treatment helps to permanently prevent seizures in most people who have epilepsy. About 5 out of 10 people stop having seizures or have fewer seizures after taking the first drug they try. Overall, about 7 out of 10 people with epilepsy have no more seizures when they use medication.
But this also means that the medication does not help enough in about 3 out of 10 people. They still have seizures regularly despite trying out different treatments.
In some people the seizures would also have stopped without medication. There is no way to predict whether a particular individual will have more seizures. Doctors can only estimate the risk.
Generally speaking, most of the drugs approved for each form of epilepsy are equally effective. But sometimes only one specific drug is effective in certain individuals. This cannot be predicted, though. Each of the drugs has advantages and disadvantages. For instance, they have different side effects. Previous research has not shown that one specific drug is generally more effective or has fewer side effects than the others.
The most suitable one will depend on a person’s individual situation, and the options should be discussed in detail with a doctor.
What are the possible side effects of medication?
Some people who take epilepsy medication experience side effects. The drugs are usually well tolerated during the first course of treatment. This is because therapy is typically started at a low dose. If the seizures continue, the dose is then increased or a combination of drugs is used. This increases the likelihood of side effects, and may also result in interactions with other drugs.
The type and severity of side effects varies from drug to drug and depends on the dose. Possible side effects include sleepiness, dizziness, slowed thinking, nausea and skin rashes. These are often mild and go away again after a while. Possible long-term, but less common, side effects include mental problems, osteoporosis, sexual dysfunction and major weight fluctuations.
If side effects occur, it is important to talk to your doctor, but you should continue to take the medication in the meantime.
What can I do to increase the odds of successful treatment?
It can help to keep a seizure diary. You can use it to record which medication you take and when and how you use it, as well as when you have seizures and what happens during them. This can help doctors to assess how the disease is developing.
Many people find it difficult to keep taking medication regularly over a longer period of time. There are a few strategies that can help, though. You can plan to take the medicine at set times, when in specific places or doing certain everyday activities – like before you brush your teeth. A mobile phone alarm could work too. You can talk to your doctor about any problems you have taking the medication.
Special self-help groups or information centers also offer advice and support people with epilepsy.
Can you stop taking the medication after a while?
Many people would like to stop taking medication if they have not had any seizures for several years. This is often possible to do without the seizures coming back. It is estimated that about 3 out of 10 people who did not have any seizures after they started taking medication can stop taking it after a few years without any more seizures occurring. The advantages and disadvantages of seeing what happens if you stop taking medication will depend on your individual circumstances and should be discussed with a doctor. Stopping on your own is not recommended.
The decision whether or not to stop taking medication will mostly depend on the risk of seizures coming back. Discontinuing the medication is more likely to be a good idea for people who
- have not had a seizure for a long time,
- take their medication at a low dose, and
- do not have an increased risk of seizures based on the results of an EEG test.
People who take more than one medication have a significantly greater risk. It is often not possible for them to stop taking them without having another seizure.
The cause of the epilepsy also plays a role when making the decision. Some people will always be at greater risk due to a genetic predisposition or permanent brain damage. They will often need to take medication for the rest of their life. But if the cause is no longer there – for instance, because the underlying brain condition has improved and the person hasn't had any seizures for a long time – the risk of another seizure is much lower. Then it might be possible to stop using the medication.
When people stop taking medication, they do so gradually over at least two to three months. If you have been using two or more drugs, only one dose is lowered at first. It is important to talk to your doctor about how to cope with a possible seizure and how it may affect your work or ability to drive.
What do you need to know about these medications when it comes to family planning?
Some AEDs can make contraceptive pills less effective, and contraceptive pills can also influence the effectiveness of some AEDs. So it is important for young women with epilepsy to talk about contraception with their doctor and possibly discuss alternative methods of contraception.
Women who are planning to have children often wonder if pregnancy is possible even though they have epilepsy. They worry that the seizures and medications could harm the unborn child. It is important to talk to a doctor early enough and to prepare for the pregnancy. This will lower the risk of complications. Most women who have epilepsy give birth to healthy babies.
Ideally, women who have epilepsy and would like to have children should talk to their doctor before they become pregnant. Otherwise, they should do so as soon as they find out that they are pregnant. If a family is known to have a genetic predisposition for epilepsy, it is possible to get advice from a genetics specialist.
Epilepsy treatment may need to be modified during the pregnancy. The higher the dose of the medications, the more likely they are to cause defects or delays in the development of the child's nervous system. The risk is especially high during the first trimester (up to week 12 of pregnancy). For this reason, doctors try to keep the dose as low as possible during a pregnancy. A single drug at a low dose will most likely not increase the risk of defects by much. But combinations of multiple drugs and drugs that are known to increase the risk of defects should be avoided if possible.
As in any other pregnancy, women with epilepsy are also advised to take folic acid supplements in order to lower the risk of defects. Because some epilepsy drugs can lower the levels of folic acid in the body, higher doses of folic acid are then recommended.
Epileptic seizures usually do not harm the child. Rare exceptions might be long-lasting generalized seizures or seizures that cause severe injury.
How effective are AEDs in older people?
One third of people with epilepsy first develop it after the age of 60. Older people are often more susceptible to drug side effects, and this is also true for AEDs. Also, many older people take other medications for other conditions. This can cause interactions with other medications.
So it is especially important for older people to take epilepsy drugs at the lowest dose possible. The most suitable are those known to be well tolerated and to have very few drug-drug interactions or none at all.
What is important for people with a mental disability?
Mental disabilities are usually the result of brain damage. The damage may be present at birth, or caused by an accident or illness later in life. Brain damage is also the reason why people with mental disabilities are more likely to have epilepsy.
Talking about epilepsy with people who have a mental disability can be difficult. This makes diagnosis and treatment more challenging. And it is harder to find the right medication and determine what side effects they are having. People who are mentally disabled may behave in unusual ways or have movement disorders that can easily be mistaken for epileptic seizures. So it is important for family members or caregivers to learn about the disease, keep an eye on the effects of the epilepsy drugs and inform the doctor.
What can be done if medication does not work?
About 3 out of 10 people continue to have seizures despite trying out different treatments. Sometimes the seizures are regular, but sometimes there may be several years between them. It is not known why some people do not respond to the drugs.
If a person has tried out two different medications and neither of them were effective enough, they are usually advised to go to an epilepsy center to have further diagnostic tests. It may turn out not to be epilepsy after all, but a different condition that causes seizures.
If seizures can’t be prevented with medication, a surgical procedure may be considered. The options included:
- Brain surgery: If someone has partial seizures and it is clear which part of the brain is triggering them, that part of the brain can be surgically removed. But this is not always possible.
- Vagus nerve stimulation: In this procedure, a pacemaker-like device is implanted under the skin of your chest, where it produces electrical signals. It is connected to the vagus nerve in your neck and is meant to prevent the nerve cells from being too active.
How is status epilepticus treated?
"Status epilepticus" (SE) is a generalized epileptic seizure that lasts more than five minutes or multiple seizures that occur in rapid succession. It is a medical emergency that requires immediate treatment with medication. It is then vital to call the emergency services (e.g. 112 in Germany and most other European countries, 911 in the U.S.). The person is usually first given a sedative (benzodiazepine). This drug can be injected into a vein, placed in the person's cheek in tablet form, or administered rectally through a thin tube. Some people who have epilepsy always carry an emergency supply of medicine with them for friends or family to use if they have a seizure.
The person will then need to go to hospital for further treatment. If the convulsions still haven't stopped after 30 to 60 minutes, a general anesthetic and artificial respiration will often be needed.
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