If you have just been diagnosed with epilepsy, you may have questions about medication and treatment.
What treatment options are there?
Epilepsy is sometimes referred to as a long-term condition, as people often live with it for many years, or for life. Although generally epilepsy cannot be ‘cured’, for most people, seizures can be 'controlled' (stopped) so that epilepsy has little or no impact on their lives. So treatment is often about managing seizures in the long-term.
Most people with epilepsy take anti-epileptic drugs (AEDs) to stop their seizures from happening. However, there are other treatment options for people whose seizures are not controlled by AEDs.
AEDs work by controlling the electrical activity in the brain that causes seizures. They do not cure epilepsy and are not used to stop seizures while they are happening. AEDs work best if they are taken regularly, around the same time each day. Up to 70% of people (7 in 10) could have their seizures fully controlled (stop having seizures) with the right AEDs.
The aim of treatment is to stop all of your seizures with the lowest dose of the fewest number of AEDs and with the least side effects. Usually treatment starts using a single AED at a low dose, which is increased slowly (called titration), until your seizures are controlled. If your seizures are not controlled with this drug, a different AED is usually tried (by adding in the new drug and then slowly withdrawing the first one). If your seizures are not controlled with a single drug, another drug might be added, so that you take two different AEDs each day.
There are lots of different AEDs and your neurologist will usually choose the AED that is most suitable for the type of seizure you have and your particular situation. Finding the right drug at the right dose can sometimes take time.
Most AEDs have two names, a generic name and a brand name given by the manufacturer (for example, Nurofen is a brand name of the generic painkiller ibuprofen). Some AEDs have more than one generic version and each version can be given its own name. For some AEDs, different versions of the drug can vary slightly and this could affect seizure control. Once you and your doctors have found an AED which helps to control your seizures, and which suits you, it is recommended that you take the same version of AED consistently with every prescription, whether it is a generic or brand version. This is called ‘consistency of supply’.
If a prescription only has the generic name of the drug, the pharmacist can give any version of the drug with that name. However, if the prescription has the brand name of the drug, the pharmacist has to give that brand. It can be helpful to get your prescription from the same pharmacist each time as some pharmacists keep records of the
medication they dispense and can help with questions about prescriptions. There are also lots of other ways in which your pharmacist can help you.
Some people have a treatment plan - a written plan of the number and type of AEDs to take, when to take them and what to do if the AEDs don't work or need to be adjusted. Treatment plans are agreed between you and your doctors, and so they may be able to help write one with you.
People with epilepsy are entitled to free prescriptions for their AEDs and any other prescribed medication. This is called medical exemption. To apply for free prescriptions in England, you can fill in form FP92A available from your doctor’s surgery. It is important to carry your medical exeption card with you for when you collect your prescription. In Scotland, Wales and Northern Ireland all prescriptions are free.
Like all medicines, AEDs can cause side effects in some people. Not everyone will have side effects, and whether you have them or not will depend on how your body reacts to the medication. Side effects are listed in the patient information leaflet that comes with your medication.
Side effects are listed as ‘common’, ‘rare’ and so on. These terms reflect how often side effects happen. For example, side effects listed as ‘common’ affect between 1 in 10 and 1 in 100 people. Side effects that are ‘rare’ happen in less than 1 in 1,000 people.
Some side effects may happen when you first start taking medication, and wear off as your body gets used to it (so they only last a short time). However, if you have side effects that continue, or that are difficult to cope with, you might find it useful to talk to your doctor about whether your medication could be changed or the dose altered.
Some other medications can affect how well AEDs work, and some AEDs affect how other medications work. For this reason, it is essential to talk to your doctor or pharmacist before taking other medications, including over the counter or complementary therapies, alongside your AEDs.
What if medication doesn’t work for me?
Managing medication can often be a balance between preventing seizures and keeping side effects to a minimum. For most people, AEDs help to control their seizures, but for others, despite trying different types, the AEDs do not stop their seizures completely. In some cases, looking at other treatment options may be helpful.
For example, someone may be considered for epilepsy surgery, VNS (vagus nerve stimulation) therapy or specialist medical dietary treatments (such as the ketogenic diet which is particularly for children) alongside their AEDs. For most people these are considered only after several medications have not worked. However, for others these options might be considered sooner.
Want to find out more?
If you would like to talk to someone
You can also talk to someone by calling our confidential helpline.
Taken from our free Just diagnosed pack which includes 'just diagnosed' booklet, seizure diary, first aid card, helpline card, 'what would help me?' postcard and ID card.
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