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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
  • Sign-up for your GP’s online service. This allows you to order your repeat prescriptions online. If you wish, you can also give access to someone else, such as a partner or carer, so they can order prescriptions for you
  • 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 16 comments or add yours

Comments

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

I have suffered with daily petit mal's daily for over 30 years .now over the years they are becoming erratic and can have about 3 a day? I'm drained, I have tried lots, alone and a combination, at the moment I am on pregabalin 250mg ,twice a day, I am coming off EPILIM as I've been on this about 9 years? I was told by my neurologist to stop the EPILIM , I have not, I have weaned myself over 6 months from 2000mg a day now down to my last 100 mg, what I would like advice on is this, ( I will resume on the pregabalin, ) what other medication is compatible to try, ??I have had so much to name a few lamotrgine, tegratol, the common ones, it is hard work trying new ones, then they don't help then to try some more my system is all over the place when that happens, the intensity and frequency have escalated and I'm not getting much sense at the moment,
Thank you

Submitted by Julie Nurse on

Hi Julie

That sounds like a difficult situation for you.

We’re not in a position to recommend any particular epilepsy medicines. The neurologist will be best placed to do that.

But it can be very hard when you have tried so many different combinations and nothing seems to work. I wonder where you currently see your neurologist? And if you would benefit from an epilepsy review at a more specialist centre? They may have some new suggestions for you.

I do hope things improve for you soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My friend suffered from epilepsy and was prescribed
Epelin as prescribed by her doctor.
She became pregnant but the packaging or instructions did not state "not to be taken if pregnant"...
Her child was born later with severe disabilities.
Is there any evidence/proof that the medication harmed her foetus ?
She is convinced it was the medication.
Can you or anyone help with advice.
Thanks

Submitted by De castro on

I am on keppra levetiracetam dosage i am on 2000 mg a day not been on this dose long but I am getting anger problems did try talking to my Nero about it but he not considered but I am I am now no longer talking to my family

Submitted by Andrew on

Hi Andrew

There are many different reason why someone may have problems with anger. But it is quite a common side effect of levetiracetam. I wonder if there is an epilepsy nurse you could talk to? Or if it’s easier to talk to your GP, they could help you explore why the anger is there. And if they also think it could be related to your epilepsy medicine, then maybe they could contact the neurologis . They could ask them whether it might be a good idea to lower the dose of your levetiracetam. The important thing is not to change how much of your epilepsy medicine you take without medical guidance.

I really hope something changes for you soon. Meanwhile here is our information on epilepsy and wellbeing.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi Andrew

There are many different reason why someone may have problems with anger. But it is quite a common side effect of levetiracetam. I wonder if there is an epilepsy nurse you could talk to? Or if it’s easier to talk to your GP, they could help you explore why the anger is there. And if they also think it could be related to your epilepsy medicine, then maybe they could contact the neurologis . They could ask them whether it might be a good idea to lower the dose of your levetiracetam. The important thing is not to change how much of your epilepsy medicine you take without medical guidance.

I really hope something changes for you soon. Meanwhile here is our information on epilepsy and wellbeing.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My daughter is on keppra and lamactal which she takes 2 times a day morning and night she forgot to take her keppra yesterday morning could she have a seizure

Submitted by Jessica on

Hi Jessica

If your daughter hasn’t had a seizure by now she will probably be okay.

There are a wide variety of ways for helping yourself remember to take your tablets. Have a look at our wellbeing page on taking epilepsy medicine for some general guidance. Or put ‘pill reminders’ in your search engine.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

I take 750 kappra twice a day for epilepsy I always feel sick but not because of the tablets , I have domperidone tablets to take but worry they will prevent my epilepsy tablets from working Regards Jo

Submitted by Jo reeder on

Hi
I’ve suffered with epilepsy for 40 yrs, varying types of seizures depending on the medications. Currently I’ve been on Keppra for 1 month (full dose) 500mg taken twice a day, plus Zonisamide 250mg twice a day & Clobazam 15mg daily.
Having changed from lamotrigine to Keppra I feel flat & empty, should this pass? I’m lucky that my seizures are now mild & infrequent.

Submitted by Sarah on

Hi Sarah

If the feeling you are describing is a side-effect of your Keppra, it may lessen over time, as your body gets used to this medicine.

If this feeling continues, it may be best to talk to your epilepsy specialist or epilepsy nurse. They might make changes to your epilepsy medicine to reduce the side-effect.

If we can be of any more help, please feel free to contact our helpline team directly. You can either 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

Keppra stop my seizures I felt so low and down but thought may be realisation of not being able to nurse sinking in.
Taking Vit B and B12 supplement has massively helped my mood and lessened the SE’s altho that may be as I also thought so what if I can’t drive / work a seizure can kill. I’m a happy commuter and working 3 days a week as a nurse :-) seizure free 15m & younlearn who your mates are & if like me have the most eclectic music on my iPod (memeory loss - yep cluster of 5 seizures in 6 days & Keppra uses know so I’m kinda rediscovering old loves).
There is life again I was so low but epilepsy action were amazing after it was implied I could be saying having seizures and claiming benefits as no eveidence (A&E resus witnessed.....photo’s shown to neuro discharged with Keppra & you’l be flat & depressed...perhaps a self fulfilling profecy!
Vit B complex in B12 saved me did times to Keppra xxx

Submitted by Rebecca hall on

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