Is it ever safe to stop taking epilepsy drugs?
Publication Date:18/06/2008
New research shows it can be dangerous for people with epilepsy not to take their medicine regularly. But is it ever safe to reduce or stop your medicine, if you have epilepsy? We take a look at the research.
What do we know already?
Medicines work well for most people with epilepsy. But some people get troublesome side effects like drowsiness. If you’ve been taking drugs for a while and they’ve stopped your seizures, you might wonder about stopping treatment. It’s very important to talk to your doctor before doing this. Stopping or changing dose without help can be dangerous. If you decide you want to stop, a specialist doctor can help you lower your dose gradually over several weeks or months.
We can’t say what will happen to any one individual coming off epilepsy drugs. But this is what we know from studies:
- If you have not had a seizure for 2 years, and you continue taking treatment, your chances of having another seizure in the next 2 years are 2 in 10.
- If you have not had a seizure for 2 years and you stop taking treatment, your chances of having another seizure in the next 2 years are 4 in 10.
But these figures are for people who worked with their doctor to reduce their dose slowly. If you don’t work with your doctor, your chances of a seizure might be a lot higher.
What does the new study say?
The study looked at whether people took the medicine prescribed for them regularly, over the course of about 5 years. And it compared what happened to people when they were taking medicine regularly, with what happened to people when they skipped more than 2 in 10 doses. The study found:
- People who weren’t taking their medicine regularly as prescribed, were more likely to need to go to hospital
- People who weren’t taking their medicine regularly as prescribed, were more likely to die.
In total, people took their medicine regularly 75 percent of the time. During the study, 16 in 100 people died. People were three times more likely to die during a time when they weren’t taking their medicine regularly.
Where does the study come from?
The new study was carried out by researchers at the University of Alabama in the US. It was published in the medical journal Neurology, which is owned by the American Academy of Neurology. The study was funded by the company GlaxoSmithKline, which makes some epilepsy medicines. Many drug trials are funded by drug manufacturers.
How reliable are the findings?
The study was carried out carefully and looked at 33,658 people.
The problem with this type of study is that we don’t know why some people took the medicines regularly, while others didn’t. These other reasons might have affected the people’s health. For example, people might forget to take the drugs because they were old and losing their memory. Or people might not have taken them because they had a difficult lifestyle, for example if they were using illegal drugs and alcohol. Both these groups of people are more likely to die or need hospital treatment, whether they took their epilepsy medicine or not. We don’t know whether people died from epilepsy seizures, or for other reasons.
The researchers tried to account for these things as much as possible, for example by adjusting the results to take account of people’s age. So the results are likely to be fairly reliable. But we can’t rely on them completely.
What does this mean for me?
If you have epilepsy and are taking drugs, the study shows that not taking drugs as prescribed by your doctor can be risky. The study fits into the information we already have, about what might happen if you decide to stop taking your epilepsy medicine.
The most important thing is to talk to your doctor before you make any changes to your medicine. Your doctor can help you work through the risks and benefits of changing your epilepsy treatment.
We know from other studies that you have a higher risk of getting seizures after stopping medicine if:
- You first had epilepsy as a teenager or adult
- You have severe epilepsy and take at least 2 drugs to treat it
- You have had seizures since you started taking epilepsy drugs
- Tests show abnormal electrical activity in your brain
- You have had a type of seizure called a tonic-clonic or myoclonic seizure.
What should I do now?
Don’t make any changes to your epilepsy medicine without talking to your doctor. Try to keep to your prescribed schedule of pills. If you want to discuss reducing or stopping your medicine, talk to your doctor in plenty of time. The same thing applies if you are pregnant, or thinking of getting pregnant. You may need to change to a different type of epilepsy medicine.
From:
Faught E, Duh MS, Weiner JR, et al. Nonadherence to antiepileptic drugs and increased mortality. Neurology. Published online 18 June 2008.
To find out more, read our information on epilepsy.
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© BMJ Publishing Group Limited ("BMJ Group") 2007. All rights reserved
This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.
