Epilepsy in adults: Treatment with medication

It is often not a good idea to use medication right away if someone has just had a seizure for the first time. Many people don't ever have a second seizure, even without taking medication.

The decision about whether or not to start treatment will depend on many factors. It is best to discuss them with a doctor. For instance:

• 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 anti-epileptic drugs?

Treatment may offer only few advantages if the seizures are very rare and also mild, and if they have very little impact on quality of life.

But sometimes tests performed after the first seizure show that there is a higher risk of more seizures – for example, if someone has a brain disease or brain damage that could cause seizures, or if the measurement of electrical activity in the brain (electroencephalogram, or EEG) shows that seizures are more likely to happen. Doctors then often recommend already taking medication after the first seizure.

More than 20 different drugs have been approved for the treatment of epilepsy in Germany (and many other countries). The most common include:

• Carbamazepine
• Gabapentin
• Lamotrigine
• Levetiracetam
• Pregabalin
• Valproic acid

The most suitable medication will depend mostly on the specific form of epilepsy. The effectiveness and the possible side effects are also factors that need to be considered. 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.

Treatment with a drug typically starts at a low dose. If that isn't enough, the dose is typically increased. If that isn't effective enough either, or if the side effects are too severe, a different drug is used. People often have to try out a number of different drugs before finding one that works. It is also possible to combine different medications.

The aim of treatment with medication is to prevent epileptic seizures. If that's not possible, then the goal is to at least reduce the number of seizures.

Medication helps to permanently prevent seizures in many 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 doesn't help enough in about 3 out of 10 people. They still have seizures regularly despite trying out different treatments.

Some people probably wouldn't have any more seizures even without medication. But it's hard to reliably predict that – doctors can only make educated guesses.

Generally speaking, most of the medications approved either on their own or as add-on treatment for each form of epilepsy are equally effective. Several systematic reviews analyzing studies on these medications have shown this. But it's not possible to know how they will work in each individual. The different medications all have their own advantages and disadvantages. For instance, they have different side effects.

The most suitable one will depend on a person’s individual situation, and the options should be discussed in detail with a doctor.

The medications that are used at the start of treatment and usually only at a low dose are typically well tolerated. Side effects become more likely if the dose is increased or if different medications are combined. Also, interactions with other medications can occur.

The type and severity of side effects varies from medication to medication. They may include tiredness, dizziness, trouble thinking clearly, nausea and skin rashes. These side effects are often mild and go away again after a while. Possible long-term, but less common, side effects include mental health problems, osteoporosis, sexual dysfunction and major weight gain or loss.

If side effects occur, it is important to talk to your doctor, but you should continue to take the medication in the meantime.

It can help to keep a seizure diary. You can use it to record which medications you take and when you use them, 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. Setting a mobile phone alarm could help too. It is best to talk to your doctor about any problems you have using the medication.

Special support groups can also offer advice and help people with epilepsy.

Many people would like to stop taking medication if they haven't had any seizures for several years. That's often possible: It is estimated that about 3 out of 10 people who don't have any seizures after they start using medication can stop using it after a few years without having any more seizures afterwards. The decision about whether or not to stop using medication will mostly depend on the risk of the seizures coming back. You should talk to your doctor first. Stopping on your own is not recommended.

Stopping the use of 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 according to the results of an EEG test.

But people who have a higher risk of the seizures coming back often can't stop using the medication without having another seizure. The cause of the epilepsy also plays a role here: Some people will always be at greater risk, for instance due to a genetic predisposition or permanent brain damage. They will often need to take medication for the rest of their life. But if a brain disease has gone away and there have been no more seizures for a long time, stopping the use of medication is less likely to be a problem.

When people stop taking medication, the dose is gradually reduced over at least two to three months. If you have been using two or more drugs, only the dose of one drug is lowered at first. It is important to talk to your doctor about how to cope with possible future seizures and how stopping the use of the medication may affect your work or ability to drive.

Some AEDs can make birth control pills less effective, and birth control pills can also influence the effectiveness of some AEDs. So it's important for young women with epilepsy to talk about contraception with their doctor early enough and consider alternative methods of contraception.

Women who are planning to have children often wonder if they can get pregnant even though they have epilepsy. They worry that the seizures and medications could harm an unborn child. But most women who have epilepsy give birth to healthy babies. It is important to talk to a doctor early enough and to prepare for a pregnancy. That can lower the risk of complications.

It is best for women who have epilepsy to already talk with their doctor before trying to get pregnant. It is also possible to get advice from a specialist in genetics.

Epilepsy treatment may need to be changed a little during the pregnancy. The higher the dose of AEDs, the more likely they are to cause birth defects or delays in the development of the child's nervous system. This risk is especially high during the first trimester (the first 12 weeks) of pregnancy. For this reason, doctors try to keep the dose as low as possible during a pregnancy and to avoid medications that have a higher risk of causing defects. A single drug at a low dose will most likely not increase the risk of birth defects by much.

As in any other pregnancy, women with epilepsy are also advised to take folic acid supplements in order to lower the risk of defects. Some epilepsy drugs can lower the levels of folic acid in the body, so higher doses of folic acid are then recommended.

Epileptic seizures usually don't harm the child. Exceptions might include long-lasting generalized seizures or seizures that lead to severe injury. But those are rare.

One third of people with epilepsy first develop it after the age of 60. Older people are often more likely to have side effects when they take medication, and this is also true for AEDs. If other medications are taken for other medical conditions too, the various medications might change each other's effects (drug-drug interactions).

So it's especially important for older people to ideally take only one epilepsy drug, at the lowest dose possible. The most suitable medications are those known to be well tolerated and to have very few drug-drug interactions, or none at all.

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.

It can be hard to talk to mentally disabled people about their epilepsy. That makes both the diagnosis and the treatment more difficult: It is harder to find the right medications and determine whether they're having any side effects. And people who are mentally disabled may behave in unusual ways or have movement disorders that can easily be mistaken for epileptic seizures. So family members or caregivers should learn about the disease, keep a close eye on the effects of the epilepsy drugs and let the doctor know about any problems.

About 3 out of 10 people continue to have seizures despite trying out different treatments. Some have seizures regularly, and others only have them every few years. It is not known why the medications don't work for everyone.

If someone 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 the seizures can’t be prevented with medication, other treatment options may be considered. These include:

• Surgery: If someone has partial seizures and it's clear which part of the brain is triggering them, it may be possible to surgically remove that part of the brain. But that can't always be done.
• Vagus nerve stimulation: In this procedure, a device that produces electrical signals is implanted in your chest area. It is connected to the vagus nerve in the neck area by wires. The nerve transmits these signals to the brain. The aim of this treatment is to reduce the abnormal electrical activity in the brain. The vagus nerve is an important part of the vegetative nervous system and is involved in regulating the body's internal organs. There’s currently a lack of good-quality research on the benefits of this treatment. As a result, statutory health insurers in Germany only cover the costs of vagus nerve stimulation in very specific cases, under special circumstances.

The term "status epilepticus" is used to describe a generalized epileptic seizure that lasts more than five minutes, as well as several seizures that occur within a short space of time. It is a medical emergency that needs to be treated as soon as possible with medication. So it's important to call an ambulance immediately (112 in Germany and most other European countries, and 911 in the U.S.).

The doctor arriving with the ambulance will usually give a sedative (benzodiazepine) first. This drug comes in different forms: A fluid that can be injected into the person's vein, a tablet that can be placed inside their cheek, or a cream that can be squeezed into their bottom through a thin tube. 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 (breathing support) will often be needed.

Some people who have epilepsy always carry an emergency supply of medicine with them. People who are there when they have a seizure can give them this medicine.