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of everyone affected by epilepsy

Taking epilepsy medicine

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

Epilepsy is usually treated with epilepsy medicines. They don’t cure the epilepsy, but try and stop the seizures happening. They do this by changing the levels of chemicals in the brain that control electrical activity.

Starting treatment

A single seizure is not always classed as epilepsy, so wouldn’t always need treating with epilepsy medicines. However, if you're considered to be at a high risk for further seizures, your specialist might suggest prescribing epilepsy medicines after a single seizure.

There are many different epilepsy medicines available. When the specialist is deciding which one will best suit you, they will consider things like:

  • The types of seizure you have, as some medicines are only effective for certain types of seizure
  • Your age and sex
  • Your lifestyle
  • Any other medical conditions you have
  • Any other medicines you take
  • Which medicine you would prefer

Doctors usually try to prescribe just one epilepsy medicine at a time. This is because the more you take, the higher the risk of having side-effects. For 5 out of 10 people with epilepsy, the first epilepsy medicine they try will stop their seizures. But some people need to take 2 or more different epilepsy medicines. These are usually medicines that work in different ways, but work well together. And some people continue having seizures, even though they have tried a number of different epilepsy medicines, in different combinations.

How long will it take for my medicine to work?

Many people with newly-diagnosed epilepsy respond well to epilepsy medicine and have fewer seizures. It’s not possible to say how long this will take. But for many people, it happens quickly. For others, it takes longer.

About 3 in 10 people with epilepsy have seizures that don’t respond well to epilepsy medicine. They continue to have seizures even though they have tried 2 or more different medicines.

Taking epilepsy medicine

Epilepsy medicine is usually available as tablets, capsules, liquids and chewable or crushable tablets. If you find tablets difficult, ask your GP to prescribe you something easier to swallow.

Epilepsy medicine is usually taken once or twice each day. Sometimes it is taken 3 times a day. It’s important to take it regularly, as prescribed by your doctor, because missing a dose can increase the risk of having a seizure.

Once you are prescribed epilepsy medicine, it’s a good idea to get advice about what to do if you ever forget to take it. You could speak to your epilepsy specialist, GP or epilepsy nurse about this. They can also tell you what to do if you have sickness or diarrhoea. The advice they give you will depend on which epilepsy medicine you are taking, and the dose.

What are the usual doses of epilepsy medicine?

Your doctor will tell you how much of your epilepsy medicine you should take, and what time of day you need to take it. It’s usual to start on a low dose and gradually increase it to the maintenance dose. This is the amount that 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 (mgs) each day. For zonisamide it is between 300 and 500 mgs each day.

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 your 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 seizure control or to reduce your risk of side-effects.

Making treatment with epilepsy medicine easier

Here are some suggestions:

  • Ask the pharmacist for clear instructions on how to take it
  • If you find the packet leaflet difficult to read because the type is too small, 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 medicines organised and may help you to 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
  • Once your dose is stabilised, ask your GP if they would be prepared to give you prescriptions for enough medicine to last 2 or 3 months
  • If your GP and pharmacist use the Electronic Prescription Service (EPS), they may be able to arrange for your prescriptions to go directly to your pharmacist. This means you no longer have to remember to order your prescriptions. The pharmacist will automatically do that for you. And some pharmacists offer a delivery service too. See NHS Choices to search for pharmacists near you.

Do I need regular blood tests?

You will only usually need to have blood tests to monitor your epilepsy medicine if, for example:

  • Your doctor wants to make sure you are taking the right dose of your epilepsy medicine
  • You are having side-effects from your epilepsy medicine that could be related to too high a dose
  • You are pregnant, or have recently given birth, and there is concern that your medicine level may be too low, or too high
  • You are going to start, or stop taking another epilepsy medicine that could interact with your epilepsy medicine
  • You are taking a medicine for another condition that could interact with your epilepsy medicine

You may also be offered blood tests to check your general health. 

Getting the same version of your epilepsy medicine every time

Epilepsy Action believes that it is important that you get the same version of your epilepsy medicine, every time you pick up a prescription. To find out more visit our page on getting the same version of your epilepsy medicine every time.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B004.05

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 2017
    To be reviewed May 2020

Comments: read the 23 comments or add yours

Comments

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

Hi my partner has been clear for over 3 years, no change in his meds what so ever and then bang 3 weeks in a row hes had grandmals 1 driving, 1,at home and 1 in the supermarket were he hit his head on the stone floor.
We dont understand why this has started again hes on epilim 1200mg twice a day and gabapentin 900mg a day

We have the doctors tomorrow to talk about this. Think he needs to see nuro again. My partner still dont accept that he has this condition. He thinks theres somthing going off like cancer of the brain etc. Hes also started slury speach hand shaking memory problems also. Any help or advice would be greatful thankYou

Submitted by jen on

 

Hi Jen

Sometimes there is just no explanation for why someone starts having seizures again after a long time with none.

Our triggers page has a list of the most common reasons why this might happen. It would also be worth thinking about whether:

  • he has been poorly (an infection can sometimes trigger a seizure)
  • he has taken any other medicine (prescribed or over-the-counter) or
  • he has put on enough weight to make a difference to how well the medicine is staying in his system

Even if one of these seems to apply to him, it is likely the GP will refer him back to the neurologist. Seeing the neurologist will be the best way to set his mind at rest about what is happening for him. Slury speech, shaking and memory problems could all be related to seizure activity. Do make sure that between you, you are writing down what is happening and when. That will be really useful for the specialist.

You could use one of our seizure diaries for that.

Some people do find it really difficult to accept that they have epilepsy. Here are the different types of support we offer. Sometimes being in touch with someone else in the same situation can help with that acceptance. So maybe there is something there for your partner.

Hopefully he has realised that he needs to stop driving. Because of this he would be entitled to a free bus pass and could apply for a Disabled Persons Railcard.

I do hope the doctor’s visit goes well. And that things start to improve for your partner very soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

About 10 years ago I had hypoactive thyroid and I was given Iodine (nuclear medicine) which treated my thyroid, unfortunately the iodine has caused me to suffer an epilepsy as a side effect and I have been suffering an epilepsy ever since and although I was prescribed Epilim chrono I used to get it only at night while I am sleeping between 3 am and 5 am about once a year even if I am awake during this times I never used to get it because if I feel it then I sit down and relax, it then passes me by.

About a year ago I was driving alone that was around 10 pm then I got it bum a big one on the wheel I was very lucky as I was by the round-about, of course I slowed down the car then when I got it I hit the roundabout I opened my eyes and I am in the Hospital with my Mom and Brother. You can imagine how devastated I was after I realised what has happened and I realise I won't be able to drive.

I quickly blame on myself as I didn't take the medication for few weeks before that incident but the problem is even though make me sure I take my medication it happened to me again around 2 months ago while I was on the bus with my 8 year old son and 5 year old daughter they have never seen me have it before so they got shocked. I work with new hospital soft works and I do travel every now and then so last week I was given 3 weeks contract work in a hospital in outside London with accommodation after I have done week it happened to me while I was at work at the hospital then again 2 more times during the night that was 3 times in one day. I had no choice but to drop off that job and come back to London. Now I don’t know what to do I am thinking of asking my Dr may be if he could change the medication for me. What do you think please? Also have you come across this kind of situation that another medicine has caused someone to be an epileptic

Submitted by Kaisi Omar on

Dear Kaisi 

Thank you for your question. Its sounds like things have been pretty difficult because of your epilepsy. 

We are aware that some medicines or treatments can cause people to develop epilepsy. 

It would be good to talk to your doctor about your seizures. They can review your treatment and look at other possible reasons for why your seizures are still happening. They may suggest altering your dosage or trying a different epilepsy medicine.  If you have tried various types of epilepsy medicines, it may be they could look into other treatment options for you. 

To help explain your epilepsy to your children, you may wish view the childrens section of our website. We have our books including   my mum has epilepsy  and Animations for children with epilepsy to watch. If you can’t view this booklet online we can send you a copy in the post. 

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. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

My doctor said I have dissociative seizures and have see a psychiatrist.. he put me on serataline and these didn't work.. I am now on lamotrigine and my seizures have gone from 5-8 every day to 2-5 a day .. I have no mental health problems as my psychiatrist also believes too. I know 150mg is working but living with daily seizures is horrid.. I just want a break... I honestly have gone through all the avenues from neuro to psychiatrist to talk therapies etc and the only thing that has helped is the lamotrigine... I feel now that I have been misdiagnosed and feel like I going around and around in a circle... I have now moved and feel my new doctor will think ohh dissociative seizures and not follow it up and be left with daily seizures every single day... is there any advice as Amat my wits end..

Submitted by Lorraine on

Hi Lorraine

Thank you for your post. Its sounds like you’re having a difficult time with your seizures still happening, and not feeling confident with your diagnosis.

Diagnosing epilepsy or dissociative seizures isn’t easy and we often hear of someone going many years of seeing doctors before the correct diagnosis is found.

If you haven’t already, you may wish to view our webpage on Dissociative seizures. We cover how it’s diagnosed and treated.

One of the ways in which a professional will tell the difference between the two conditions, is from an electroencephalogram (EEG).  In some cases the doctor may suggest using video-telemetry. This would involve you wearing an EEG for a few days, and being observed by a video camera linked to the EEG machine. This makes it possible for any seizures you have to be recorded on video and EEG at the same time.

When someone has dissociative seizures, epilepsy medicine will not work for them. So it’s not clear why you have just started on lamotrigine if the doctors say you don’t have epilepsy.

To have another medical opinion it would be best to see a specialist in epilepsy and/or dissociative seizures. If you contact the helpline team directly with where in the UK you live, we can see if we have details of a specialist near to you.

You can email helpline@epilepsy.org.uk  or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on