Epilepsy

Epilepsy medication

Epilepsy is usually treated with anti-epileptic drugs (AEDs), and many people have their seizures successfully controlled in this way either by taking one type of AED (monotherapy) or a combination of two or more AEDs (polytherapy). There are different kinds of AEDs. Which AED is prescribed for a person depends on their seizure type, age, gender, lifestyle, other medical conditions and any other medication they may be taking at the time (see resources for links to further information).  If on AEDs it's important to remember the following:

  • No one should stop taking AEDs without talking to their doctor first because suddenly stopping AEDs can cause seizures.
  • No one should take extra doses of AEDs unless their doctor suggests this because taking extra AEDs can make side effects worse.
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Almost everyone we spoke with was taking anti-epileptic medication. Only one young woman wasn't on medication. For over half of the people we spoke with, medication controlled the seizures. Others had the occasional seizure and a few had quite poorly controlled epilepsy. For a few people, the first medication they had been prescribed worked well and controlled the seizures but many had had a long struggle to find the right medication.

Starting medication

Most people had started their medication straight after they got the diagnosis. Many said that, especially at this point, they would have liked to know more about how the medicines worked and the possible choices between them. Some had looked for more information about medication in medical books and on the internet.

Some people didn't want to start their medicine because it reminded them that they had a long-term illness. 

People who hadn't started taking their medication straight away said they felt it had been a 'stupid', 'ignorant' or 'rebellious' thing to do. Some had realised they needed to start taking tablets for their own benefit only after they'd had a couple of severe seizures or injured themselves. 

A few people pointed out that having epilepsy made them eligible for a Medical Exemption Certificate so that all their medication was free. For many this was a great financial help. One man who already had a heart condition, and took regular medication for that, said starting to take AEDs was no big deal to him. 

Remembering to take medication
Epilepsy medication must be taken at regular times for it to work properly. Taking medication regularly and not missing doses is an important part of trying to cut down seizures and reducing the risks associated with seizures. If this proves difficult, it should be discussed with health care professionals who may be able to offer support and advice.

Some people said that a routine of taking tablets, for example when going to bed and when getting up, made it easier to remember to take them. One man said that taking his tablets had become just as automatic for him as having his breakfast! 

But some found it hard to remember to take their tablets at set times. Many people said that they couldn't remember to take their tablets at set times because of the memory problems, which were partly a side effect of the medication. One woman with diabetes and epilepsy said she found it difficult to remember the different times she needed to take her epilepsy medication and inject insulin for her diabetes.

Things that people said particularly interfered with their medication routine were shift work, irregular lecture timetables at university, travelling, irregular sleeping patterns and any other changes to the usual routine.

A few people said that if they were late with taking their AEDs they could feel the difference - feeling shaky for example - either straightaway or shortly afterwards. Several had had a seizure when they'd forgotten to take their medication.

People had different strategies to remind themselves to take their tablets on time, including itemised medication boxes and wallets they could carry around with them. These boxes have slots for each day of the week and can help people remember to take tablets every day. Some were reminded by a parent or a boy/girlfriend. One young woman used her mobile phone alarm to remind her to take her tablets. 

Some people who had moved to a different place to study but were still registered with their local GP had had difficulties getting repeat prescriptions. One woman had to chase up her prescriptions from the pharmacy many times and even had to go without her tablets when the pharmacy didn't have them in stock, which made her really angry.

When medication doesn't work

For many young people, finding the right medication was a struggle and some were still trying to find a tablet which would control their seizures. Quite a few were on more than one AED, either two or three different tablets.

A few people said they'd tried nearly all the possible epilepsy medications available over the years, without success. One man had been on so many different epilepsy medications that he felt he could have challenged the world record. Another had been given over twenty different AEDs over the years. 

Changing from one medicine to another is a long process because the current one needs to be slowly reduced and the new medicine gradually introduced side by side. One woman felt that since she was diagnosed at 18, she had always been in the middle of a medication change, trying a different type of AED.

For a couple of people, none of the medications had helped control their seizures but their epilepsy was operable, so doctors had suggested having brain surgery.

Besides trying to find a suitable AED, the side effects of medication were another challenge most people struggled with. 

Last reviewed May 2016.

Last updated May 2016.

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