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Treatment with epilepsy medicine

This information is relevant to people who live in the UK.

Introduction to epilepsy medicines

The most common way epilepsy is treated is with epilepsy medicines. They do not cure epilepsy, but aim to try and stop seizures happening. Generally, they do this by changing the levels of chemicals in your brain that control the electrical impulses.

Starting treatment

A single seizure is not usually classed as epilepsy. This is why doctors often don’t prescribe epilepsy medicine until you have had two or more seizures. Occasionally, doctors might recommend that you start treatment after just one seizure, if they think you are at risk of having more.

There are many different epilepsy medicines available. Your epilepsy specialist will recommend the most appropriate one for you. They will take various things into consideration, including:

  • The type of seizures you have
  • Your age and sex
  • If you have any other medical conditions
  • If you take any other medicines
  • Your preferences

Doctors usually try to prescribe just one epilepsy medicine at a time. This is because the more you take, the higher is the risk of having side-effects. However, there may be times when you need to take two or more. One example is if you change from one epilepsy medicine to another. Another example is if the doctor thinks that taking an extra one would give you better seizure control.

Free prescriptions

If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions.

Taking epilepsy medicine

Most epilepsy medicine is available as tablets, capsules, liquids and chewable or crushable tablets. If you find tablets difficult, you can ask your GP (family doctor) to prescribe you something that you would find easier to swallow.

Epilepsy medicine is usually taken once or twice a day. Sometimes it is taken three times a day. It is important to take it regularly, as prescribed by your doctor. This is to keep as steady a level of the medicine in your blood as possible. If you miss a dose, this can increase the risk of having a seizure.

It is a good idea to get advice about what you should do if you ever forget to take your epilepsy medicine. You could speak to your epilepsy specialist, GP (family doctor) or epilepsy nurse about this. The advice they give you will depend on which epilepsy medicine you are taking and the dose. They will also consider any other medical conditions you have, or other medicines you are taking, that might affect your epilepsy.

Making treatment with epilepsy medicine easier

  • Ask the pharmacist for clear instructions on how to take it
  • If you find the patient information leaflet difficult to read, ask for one in large print
  • If the packaging is difficult for you to open or handle, ask the pharmacist to change it
  • Ask the pharmacist if they sell Dosette boxes or something similar. These keep your medicine organised and help you to make sure that you take the right ones at the right time
  • Contact the Disabled Living Foundation for information about other special pill containers or alarms that you can buy. These can be used to remind you to take your medicine
    Tel: 0845 130 9177
    Website: dlf.org.uk

Doses of epilepsy medicine

Your doctor will tell you how much of your epilepsy medicine you should take. It is usual to start taking a low dose and gradually increase it to the maintenance dose. This is the amount of medicine which is thought to work well at controlling seizures.

Each epilepsy medicine has a different maintenance dose. For example, for carbamazepine it is between 800 and 1,200 milligrams (mg). For zonisamide it is between 300 and 500 mg.

It can take a few weeks or months to reach the maintenance dose. Starting at a lower dose, then gradually increasing it, allows your body to slowly get used to the medicine. This reduces the risk of side-effects.

Sometimes, your doctor might advise you to take a higher or lower dose than the recommended maintenance dose. This could be to get better control of your seizures, or to reduce the risk of side-effects.

How long it takes for epilepsy medicine to work

Many people with newly-diagnosed epilepsy respond well to epilepsy medicine and they have fewer seizures, or the seizures stop altogether. It is not possible to say how long this will take. For many people, it happens quickly, but for others it can take a lot longer.

About 30 in every 100 people with epilepsy have seizures that do not respond well to epilepsy medicine. They continue to have a number of seizures, even though they have tried two or more different ones.

Side-effects

All medicines can cause side-effects. These are effects that a medicine has on your body, in addition to the job they are supposed to do. Side-effects are usually unwanted and common ones include headaches, feeling sick, dizziness, drowsiness and mood changes.

The risk that you will have side-effects from your epilepsy medicine depends on a number of things, including which one(s) you take and any other medicines you take.

When you collect your prescription, there should, by law, be a patient-information leaflet (PIL) which lists the possible side-effects. You could get any of those listed, but most people get few or mild side-effects. Some people do not get any side-effects at all.

There is more risk that you will get side-effects in the early days of taking an epilepsy medicine. Once your body has had a few days or weeks to get used to taking it, they should lessen or disappear completely. If they don’t, talk to your family doctor or epilepsy specialist. They might make changes to your epilepsy medicine to lessen the side-effects.

You can find information about side-effects of individual epilepsy medicines on the Medicine Guides website.
Website: medicines.org.uk

The Yellow Card Scheme

If you live in the UK and think that you are getting side-effects from your epilepsy medicine, talk to your GP (family doctor). They can report them to the Medicines and Healthcare products Regulatory Agency (MHRA).

You can also report side-effects yourself by completing a Yellow Card. These are available from your GP (family doctor), pharmacist or the Yellow Card scheme:
Tel: 0808 100 3352
Website: yellowcard.mhra.gov.uk

Since July 2015 you can also download a free Yellow Card scheme app to use for reporting problems with medicines and for tracking information about different medicines.
You can download the app from the iTunes App Store and Google Play for your IOS or Android device.

Changes in how well epilepsy medicine works

A small number of people find that their epilepsy medicine stops working as well as it once did. If this happens to you, there could be a number of reasons. These include:

  • Not taking your epilepsy medicine regularly
  • Your epilepsy itself may have changed
  • The cause of your epilepsy may have changed
  • Your body may have got used to the epilepsy medicine, so the medicine no longer works
  • Gaining or losing weight

The National Institute for Health and Care Excellence (NICE) is an independent organisation. They provide guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. NICE recommends that if your epilepsy medicine is not stopping or reducing your seizures, your GP (family doctor) should arrange for you to see an epilepsy specialist. The specialist might suggest changes to your treatment, to try and get better seizure control.

It is very important that you do not make any changes to your epilepsy medicine yourself. This could cause you to have more seizures

You can find out more about the National Institute for Health and Care Excellence on their website: nice.org.uk

Changing epilepsy medicine

If you have been taking an epilepsy medicine for a while, and are still having seizures or side-effects, talk to your GP (family doctor) or epilepsy specialist. They might suggest that you try taking a different one.

The usual way to change epilepsy medicine is to start taking the new one at a low dose, alongside your existing one. The dose is gradually increased until you reach the maintenance dose. Then, the old epilepsy medicine is gradually reduced. This can take weeks or months to do.

If you change your epilepsy medicine, you are at risk of having more seizures than usual. You could have withdrawal seizures from stopping the old medicine, or the new medicine might not work well for you. Because of this, your doctor might advise you to stop driving for a period of time. You may also decide to avoid activities such as some sports, until you and your doctor feel sure that you have got good seizure control.

Interactions between epilepsy medicines

If you take more than one epilepsy medicine, one of them may raise or lower the amount of another in your blood. This could cause you to have more seizures.

So, if you take more than one epilepsy medicine, and your doctor changes the dose of one, they might also change the dose of other ones you are taking. This is to make sure that they still work well together.

Drug level monitoring

Drug level monitoring involves having regular blood tests to check how much of a medicine (or drug) is in a person’s blood.

Doctors do not usually do drug level monitoring for people taking epilepsy medicine, unless there is a specific reason to do so. Here are some of those reasons.

  • To make sure that a person is taking the right dose of the epilepsy medicine phenytoin
  • To see if a person is taking their epilepsy medicine regularly
  • To find out if the reason a person is getting side-effects is because the dose of their epilepsy medicine is too high
  • To find out if levels of certain epilepsy medicines have changed during pregnancy

Stopping treatment

If you have been seizure-free for at least two years, your epilepsy specialist might discuss with you the risks and benefits of continuing or stopping your epilepsy medicine. They will suggest this if they think that the risk of your seizures coming back is low. Here are some of the things they will consider to make this decision:

  • How long you have been seizure-free - the longer you have been seizure-free, the lower is the risk that you will have another seizure
  • How many epilepsy medicines you take – if you needed more than one epilepsy medicine to control your seizures, there is a higher risk that your seizures will return if you stop taking medicine
  • How many seizures you had before they were stopped with epilepsy medicine - the more you had, the higher is the risk that your seizures will return
  • The type and cause of your epilepsy - some types of epilepsy, such as juvenile myoclonic epilepsy, will usually return if you stop taking medicine
  • How old you were when your seizures started - some types of epilepsy that begin in childhood go away when you are an adult

If you do stop taking epilepsy medicine, you will usually do it very gradually. Your epilepsy specialist will advise you how to do this. It could take a few months to stop taking it altogether. If you stop taking epilepsy medicine too quickly, it could cause you to have more frequent and severe seizures.

When stopping your medicine you must stop driving. This is for safety reasons. You will have to stop driving whilst coming off your medicines and for six months afterwards. If you live in England, Scotland or Wales you don't need to inform DVLA. If you live in Northern Ireland you must inform DVA.

Possible effects of epilepsy medicine on other things

Your bones

Some epilepsy medicines may cause your bones to become thinner and more brittle, which means you are more at risk of breaking them. These are:

  • Carbamazepine
  • Phenytoin
  • Primidone
  • Sodium valproate

Information about sodium valproate
The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you the MHRA advise you to read this booklet along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant your doctor should only prescribe sodium valproate if nothing else works for you.

If you are concerned that you may be at risk of having weaker bones, talk to your GP (family doctor). They can suggest ways you can look after your bones, such as taking vitamin supplements and exercising, if this is suitable for you.

Contraception

If you are a woman with epilepsy, it is advisable to plan any pregnancy if you can. This is to make sure that the pregnancy is as healthy as possible for both you and your baby. So, it is important to use a type of contraception that works well for you.

Some epilepsy medicines make some types of contraception work less well than they should. This could lead to an unplanned pregnancy.

Some types of contraception make some epilepsy medicines work less effectively. This could lead to an increase in your seizures.

Epilepsy medicines which may interact with some types of contraception include:

  • Carbamazepine
  • Eslicarbazepine acetate
  • Lamotrigine
  • Oxcarbazepine
  • Phenobarbital
  • Phenytoin
  • Primidone
  • Rufinamide
  • Topiramate

If you take epilepsy medicine and you are planning to use contraception, speak to your GP (family doctor), or your local sexual health clinic (details in your local Phone Book).

Epilepsy Action has more information about contraception and planning a baby if you have epilepsy. 

Possible effects of other things on epilepsy medicine

Prescribed medicines

Some medicines used to treat conditions other than epilepsy can increase your risk of having seizures. They might lower your resistance to seizures, or interact with your epilepsy medicine, making it work less well.

Some of these include some antidepressants, some types of antihistamines, some antibiotics and some anti-malaria treatments.

If you are going to take a prescribed medicine, always check with your GP (family doctor) or pharmacist if they could affect your epilepsy or epilepsy medicine.

Grapefruit

Some research suggests that eating grapefruit or drinking grapefruit juice could increase your chances of having unwanted side-effects from some epilepsy medicines. This is because a chemical that is naturally found in grapefruit can cause you to have higher levels of these medicines in your body. If you have any concerns about this, talk to your GP or pharmacist.

The medicines that can be affected by grapefruit are:

  • Carbamazepine
  • Diazepam
  • Midazolam
Code: 
B004.04

Epilepsy Action would like to thank thank Dr John Paul Leach, consultant neurologist, Southern General Hospital, Glasgow for his contribution.

Dr John Paul Leach has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated May 2014
    To be reviewed May 2017

Comments: read the 19 comments or add yours

Comments

My son who is now 18 has had fits since he was one, they were diagnosed as febrile convultions and since he turned 10 he was diagnosed as being epiliptic. He has been on epilim for the last two years. He has not had a fit in all that time. Recently he had a blood test and the results for his liver were abnormal. He is due to go for a second blood test and the GP has said that the epilim has caused the liver problem and he may have to stop taking epilim.

My concern is that if he stops taking medicine he will have fits and could endanger himself. It's not like when he was younger and we could monitor him wherever he went. My question is that is there any other drug that he can take that will stop his seizures and not damage his liver? You stated in the comments that newer drugs cause less damage to livers, please could you list these so I am aware of them when/if the doctors suggests these?

Many thanks for your help.

Submitted by Tanvir Hussain on

Hello Tanvir

Thank you for your message. This must be a difficult situation to find yourselves in. It is good that your doctor is monitoring your son’s epilepsy medicine and has picked up on this problem. If your doctor advises that you change your son’s medication, this will usually be done slowly to try and reduce the possibility of seizures. The usual way to change epilepsy medicine is to start taking the new one at a low dose, alongside the existing one. The dose is gradually increased until you reach the maintenance dose. Then, the old epilepsy medicine is gradually reduced. This can take weeks or months to do.

All medicines can possibly have side effects. Each person’s experience of a medicine is individual to them. As we are not medically trained, we are unable to advise you of which medicine your son should take. You can find information about side-effects of individual epilepsy medicines on the Medicines Guide website www.medicines.org.uk/guides/search?term=epilepsy

Your son’s neurologist will also be able to discuss this with you.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Karen

Epilepsy Action Advice and Information Team

Submitted by Karen, Epilepsy... on

A patient is free for 5 years then got a new attack which is a new type of seizure , do you recommend to start treatment or wait if a second one happens

Submitted by bdr on

Deciding whether to start epilepsy medicine or not is really difficult. A new seizure type may mean it’s a new epilepsy rather than the old one returned. So this would be a good reason to make sure it’s checked out by a neurologist.

In order to help you make your decision, the best thing is to get as clear a picture as you can from your neurologist about the benefits and risks for you personally.

The doctor would be thinking about things like:

  • Whether there was an obvious trigger for your seizure
  • Whether there is a physical reason for your epilepsy  
  • How quickly you became seizure free last time
  • Whether you are in any of the risk categories for SUDEP. This is sudden unexpected death in epilepsy and is important to know about as part of such a decision

This isn’t a full list but it is the sort of thing it would be useful to discuss together, so that you can make an informed decision about what to do.

I hope that’s useful.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Sure, many thanks

Submitted by bdr on

I have had breakthrough symptoms in my epilepsy for the first time in 15 years of taking it. Nothing has changed in my diet, weight, stress levels or lifestyle choices. I am on a silver pack made in the uk but usually have had a purple pack made in Malta. The only thing different is the uk made this batch. I want to get the two meds compared and have asked sanofi to advise the difference. I had a couple of spare packs of the purple blister pack and since going back to them have not had any breakthrough symptoms. I am fairly sure this silver batch is substandard. Can you recommend an independent lab I can send the two versions to to get comparisons? I will quite happily pay to get this reassurance but don't know who could help. If I have one seizure, I lose everything. If I can't drive, I lose my job as there is no easy way to get to it. I lose my complete freedom. One year of losing my license will absolutely shatter my life.

Submitted by Tina on

Hello Tina

This sounds like a tough situation to find yourself in. Having a seizure can have a significant impact on a person’s life, so it is great that you are looking in to this for yourself.

It is good that you have already contacted Sanofi as they should be able to answer any questions you have. We are not able to recommend a laboratory where you could get your medicines tested. It may be worth talking to your local Pharmacist about this though, as they may be able to recommend one.

As you have mentioned, you have been given medicines which have been manufactured in different countries. This is called a parallel import. We are aware that for some people taking a parallel import may lead to problems with their levels of seizure control. Some people notice that they experience more seizures, seizures that feel different, or more unwanted negative effects.

For these reasons we believe that it is important that you get the same version of your medicine every time you get a prescription. Our information about getting the same version of your epilepsy medicine every time may be helpful to you.

You may also find it helpful to know about the Yellow Card Scheme. This is a way to report side-effects you have experienced when taking a particular medicine to the Medicines and Healthcare products Regulatory Authority (MHRA). You can also find information on their website about side effects reported by other people.

If we can be of any more help, please feel free to get in touch with our helpline team.

Karen
Epilepsy Action advice and information team

Submitted by Karen@Epilepsy ... on

I've been on lamotrigine for 10 years, for the last 3 years I've been on 300 mg a day (150mg twice). On average I've had them once a year for 14 years. It's always drink and late nights that cause them. I went to live in Spain in 2013 and had an evening job so could get up when I wanted. But I got dizzy during the days so the doctor there suggested taking 50/100 less as my lifestyle was more relaxed and perhaps didn't need as much. But when I moved back in 2014 I didn't put it back up and had one 2 months after. So My neurologist said to just just go back to 300mg, I suggested changing but he said no and that I need to get the right level but some people are on 900/1200mg!! Anyway I had been fine for nearly 20 months, the longest it had been. Been driving for 8 months in my brand new BMW and then BANG I had one yesterday morning! Devasted is an understatement. It has been on my mind lately as it's the longest I've been fit free and I do find it very hard to sleep. But yesterday I wasn't that tired and hadn't had a drink. I had missed a dose the morning before. Could that have been why? I haven't missed a dose for years. Now I'm not sure wether to ask changing meds? The worse thing is my driving liscense, I need it for work and hate relying on colleagues to drive me around. So gutted. But if it had been 10 minutes later I could have been driving and would have been much much worse. Although for the first time ever I had some weird symptoms before, I started being really forgetful about my thoughts. It's nice browsing websites and realise your not the only one with this awful condition and there's others worse off

Submitted by Natasha on

Hi Natasha
Having a seizure after a while of being seizure-free can be a real shock. I’m so glad to hear you weren’t driving when you had it though.

The answer to your question is yes, the missed dose is almost definitely the cause of the your seizure. Here is all our information about possible seizure triggers. As you can see, missing a dose of your epilepsy medicine is top of the list. So this may mean it is unnecessary to change your epilepsy medicine in any way. It would be a good idea to see your neurologist again though especially if you have also had some weird symptoms.

The only consolation I can offer you on the driving front is to remind you about the help you can get with transport costs. This includes a free bus pass and the Disabled Person’s Railcard. If public transport is not available for you to get to work, you may want to have a look at the Access to Work information too.

It’s really common to feel quite isolated with a condition such as epilepsy. You might want to see if there’s a coffee and chat group near you. And you might be interested in our online community, forum4e. It’s for people with epilepsy and carers of people with epilepsy.

I’m really glad you’ve found our information useful. Here is the list of the various ways in which we offer support. Do feel free to contact us again if we can help any further.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

I have petit mal seizures and currently taking Oxcarbazepine (Tripletal) 300 mg/day. Seizure free for 4 years. Would I be safe to start weaning off the medication and stop taking it?

Submitted by Linda C on

Hello Linda
As we are not medically trained, we cannot say whether it would be safe for you to start weaning off your epilepsy medicine. The best thing for you to do would be to talk to your epilepsy doctor about it before you start making any changes.

In general, an epilepsy doctor might choose to look at this option for a person who has been seizure free for at least two years. As someone who has been seizure free for 4 years you meet this criteria. By talking to the doctor you will get the opportunity to explore the risks and benefits of stopping treatment. If you do decide to stop your treatment, your doctor will usually do it very gradually.

If we can be of any more help, please feel free to get in touch with our helpline team.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Hi, this is such a great opportunity to have someone to ask a question that's been bothering me for a long time?
I'm 45 had epilepsy since I was 11 treated with phenytoin which kept me pretty much seizure free. Had 3 kids then about 11 years ago neurologist said I had to come off phenytoin as it was old fashioned! Put me on new med had massive seizure ended up in hospital, lost huge part of memory took a couple of years to stabilise me on keppra/topimirate - still have occasional seizures now. Never got an explanation - had to change my job at the time was horrible!
Why would they do that - is phenytoin harmful?

Submitted by Linda Richards on

I just wondered how long it takes for Sodium Valporate to completely leave your system? My son was weaned off of this in July 2013 and had stopped taking it completely by September (age 7). He has thankfully been seizure free since. I talked to someone yesterday who had been weaned off of his drug and he told me it takes 2-3 years to completely leave your system!

Submitted by Louise Martin on

Hi, my son is now 14, He had a couple febrile convulsions , when he was under 5. When he was 12, he had one seizure. after 15 months he had one last year. we started him on Keppra. increased the dose upto 3000mg. Didn't work. he had multiple seizures with a gap of 10 to 7 days. we moved him to Onfi as the bridge medicine in Feb this year and started him on Lamictal.
Now he has bee on Onfi for 4months and a week plus. 10mg in the morning and 10mg in the evening. Lamictal 150mg x2 a day. He has gone without a seizure for 2.5 months. His neurologist advised now to start tapering off on Onfi, reduce to 5mg in the morning to begin with. with 10mgx2 a day, he had couple of seizures before we could increase Lamictal to 150mg. but once we increased Lamictal to 150 mg, no seizures for the last 2.5 months.
Any stats on the withdrawl symptoms on Onfi? bit concerned but I understand to get it down to one medicine.

Submitted by Chinni on

Hi Chinni

Thank you for your question about your son’s treatment.

Generally if someone is on clobazam (Onfi) for a short time they do not experience any withdrawal symptoms. If someone is on the medicine long term there is information on withdrawal symptoms on the package leaflet. https://www.medicines.org.uk/emc/medicine/31445

If you have concerns about your son’s treatment, it would be best to talk to his doctor.

Regards, 

Diane 

Epilepsy Action Advice and Information Team

 

 

Submitted by Diane, Epilepsy... on

Thank you for quick response.
Follow up question . How much time is considered as short term or long term?
We reduced to 5mg in the morning from 10mg and within 2 days he had seizure that is it more than moderate. Lasted 45 sec and with new symptoms like few moanings while he continued to stare at after the shaking is completed. Doctor advised to go back to 10mg and asked us to bump up Lamictal to 400 mg before we attempt to wean onfi.

Submitted by Chibni on

Hi Chinni

As a guideline short term would be a small number of weeks I think. And long term would be longer than that! But people do react vey individually to different medicines.

Hopefully your son will respond well to the increase in lamotrigine. And that that will make it possible to reduce the clobazam .

Cherry 

Epilepsy Action Advice and Information team

 

 

 

Submitted by Cherry on

Hi, my wife she is lethyl 30mg everyday then miss almost 8 days; then last night she collapsed and then then the foam was coming out from her mouth. So will her Medicine still working well as she will continue taking it?

Submitted by Andrew on

Hello Andrew

Many thanks for your message.

Your description of your wife’s collapse and the foam coming from her mouth sounds like it could have been a seizure. It is important that she takes her epilepsy medicine every day as told by her doctor. This is to keep as steady a level of the medicine in her blood as possible. If she misses a dose, this can increase the risk of having seizures.

To see what medical care and support there may be for you and your wife in South Africa, you may find it helpful to contact Epilepsy South Africa.

Karen

Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on