Taking your medication

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Usually prescribers try to keep medication schedules to once or twice a day. You will need to take it at the same time each day so that the level of medication is kept stable in your blood and doesn’t dip or peak. Missed doses can lead to low drug levels and seizures. Doses taken too close together may cause drug levels to be too high, which can cause side effects, so it needs to be kept just right. If you do miss a dose don’t double up on doses to make up for it. This could lead to too much medication in your system and could result in seizures too. It’s important to take the dose prescribed and not alter it unless your doctor advises it.

What is the right dose for me?

Each epilepsy medicine has a different maintenance dose. Doctors tend to ‘start low and go slow’ with low doses and increase slowly over some weeks. This is called titration and it limits the risk of side effects. What is most effective varies from person to person. Newly diagnosed people will normally be treated with one drug at first. Your response to the medication is monitored and the dose altered if necessary. A combination of drugs may then be tried if one alone is not working. The combination will usually be kept as simple as possible to lessen side effects and make it easier to take.

What are the risks of not taking medication?

The main risk is that seizures will continue if they are untreated and this increases the risks of injuries and sudden unexpected death in epilepsy (SUDEP). You should never stop your treatment suddenly. There is an increased risk of withdrawal seizures, severe seizures, or prolonged seizures like status epilepticus as well as a range of withdrawal symptoms. If you are a driver and you stop taking medication suddenly, seizures may return and you may have to stop driving. If you have concerns about taking medication talk to your doctor. It is important to weigh up any concerns against the risks of untreated seizures.

How do epilepsy drugs work?

Anti-epileptic drugs do not cure epilepsy, they aim to control it. Some drugs work by calming overactive brain cells. Others lower the brain cells’ ability to send abnormal signals to each other. The drugs need to be taken regularly over time to build up in your system; they don’t work if taken only when you feel a seizure might come on.

How long do they take to work?

Your medication needs to be built up slowly to the full dose, often over a number of weeks (titration). Epilepsy medication often needs time to work. If you had frequent seizures you may see an improvement soon, but if not you may need to wait longer to see if the medication is working.

Will I ever have to change medication?

If seizures are not coming under control, or you are having side effects that are a problem, then your doctor may decide to change your medication. This will be done gradually over a few weeks or even longer, and you may increase a new medication while being weaned off your current medication at the same time. Medication should never be started or stopped suddenly as it takes time for you to adjust to it. During the changeover period there is a risk of breakthrough seizures. If you are legally eligible to drive you may be advised not to drive for a time.

Will I need to take medication for a lifetime?

For some people the answer is ’yes’. However, some people can be weaned off medication after a period of being seizure-free. Usually this is no less than two years. Weaning off medication should only be done gradually under the supervision of your doctor. In many cases seizures don’t return but if they do your doctor may advise going back on treatment. If you have epilepsy surgery you will need to continue taking your medication afterwards for as long as directed by your neurologist.

How can I avoid missing doses?

It is important to take the correct dose at the same time each day. If you are worried you might forget here are some tips to help you remember.

  • Use a daily or weekly dose pill box which can be bought through a pharmacy.
  • Ask your pharmacist to blister pack your tablets with daily doses counted out.
  • Use an app with a reminder, like the Epilepsy Ireland app.
  • Use the alarm or timer on mobile devices as reminders.
  • If you are likely to be away from home carry some spare doses of medication in case you are delayed or unable to get home.
  • Always check you have enough medication to last during holiday periods like Christmas and Bank Holidays when pharmacies may be closed.

What if I am ill?

If you are ill with fever you may be more likely to have seizures as high temperature can be a trigger factor. Also diarrhoea, vomiting and dehydration can mean your medications are not being absorbed properly and this can result in a greater risk of seizures. If you become unwell it’s good to seek prompt advice from your doctor or pharmacist.