Epilepsy is where the person has seizures (sometimes called fits). Too much electrical activity in the brain causes a temporary disruption in normal brain function.

What people experience during a seizure will depend on where in the brain the epileptic activity begins and how widely and rapidly it spreads. There are many different types of seizure and each person will experience epilepsy in a different way.

Adapted from the "What is epilepsy?" leaflet produced by Epilepsy Action.

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There are many types of epilepsy or seizures. These are usually grouped together as full (or generalised) seizures or partial seizures, and include convulsions and absence seizures.

Partial seizures involve part of the brain, while generalised seizures involve the whole brain. There are around 40 different types of seizure, ranging from brief absent moments, to completely losing consciousness, falling to the floor and convulsing.

This isn’t really our field of expertise so you are probably best to research more specialist websites for better information, such as the excellent Epilepsy Action (the British Epilepsy Association).

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Because everyone is unique, everyone's symptoms are different. So, it's not always clear what the right diagnosis is. Here is a list of some other possible causes for the symptoms of epilepsy. This is not meant to be a textbook list, just some ideas. Some of these can be very rare indeed. Sometimes it doesn't matter anyway as the seizures need to be treated anyway, no matter what causes them.

• Substance misuse - either alcohol withdrawal after stopping drinking a lot or excess drinking of alcohol
• Sleep deprivation (having no sleep, or being too tired)
• Flashing lights
• Brain tumours or brain damage
• Drug-induced - hundreds of prescribed medicines can cause fits or seizures

Just to confuse matters further, sometimes people have more than one illness (sometimes called "co-morbidity"). For example, if 1 in 10 people get depressed and 1 in 10 people get anxiety, then just by chance 1 in 10 of the depressed people get anxiety as well. However, if you're depressed, you're more likely to be anxious. Co-morbidity means what else the person is more likely to have at the same time. This can make diagnosis more difficult.

• ADHD (Attention Deficit Hyperactivity Disorder)
• Almost anything in fact

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The list here includes most of the main options but does not say what works and doesn't. Many may be used in combination. Most herbal and alternative therapies have not really been tested in the same rigorous way that medicines have, and certainly not in epilepsy.

Our aim is to try to help people who are taking medicines (or should be) get the right medicine, dose and take it regularly for as long as is right. Any medicines should usually be part of the overall treatment, although some people are quite happy just to stick with drugs or talking treatments. If your medicines are right, then everything else can fall into place. If the medicines are wrong, then they may make the symptoms worse and self-help will not be as useful

Self help

• Avoiding trigger factors such as flashing lights, irregular sleep, missing meals, stress etc
• Taking anticonvulsant medicines regularly and reliably
• Eating healthily and taking exercise (“exercise to energise”) or being active

Help from others

• Understanding the illness and how to reduce the trigger factors
• Alternative therapies such as aromatherapy, hypnosis or hypnotherapy, homeopathy (treating like with like) can be used with (but not instead of) conventional treatments. Acupuncture is used a lot in many countries and may help anxiety, stress and insomnia. The evidence for these treatments is not very good, especially in treating epilepsy. All of these can be used in conjunction with other therapies. If they work then that is fine and we wouldn’t knock them. Click here for a balanced review of complementary and alternative therapies from the Royal College of Psychiatrists (e.g. Ginkgo, Sage, vitamins, other herbals etc, and some useful links).

Medicines

• Anticonvulsant or antiepileptic medicines are the main treatment for epilepsy

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If you are prescribed a medicine, then there may be many reasons why that one has been chosen. These might include:

• side effects (which ones are important to you)
• local policies or agreements (such as what your GP surgery uses or agreements in your county)
• national policies (e.g. NICE, SIGN - see last question)
• familiarity (it may be better for prescribers to use medicines they are familiar with)
• relative costs for similar medicines (if two medicines are very similar, why waste money on the more expensive one?)
• personal preference (either yours or your prescriber)
• how bad your symptoms are
• any medicine you might have done well with in the past (as it's more likely to work again)

The main medicine treatment options are listed below. They are divided into "Main medicines" and "Others".

For convenience, the "Main medicines” are those medicines that are officially "approved" to treat the seizure (www.bnf.org/bnf/) and which are listed in the British National Formulary (BNF). To be listed in the BNF there needs to be good evidence that the medicine works and that the manufacturers have applied for a license (a long and costly exercise). "Others" are those medicines where there is some evidence that they help, but either not enough for a license or that no license has been applied for. These should usually only be used where other standard treatments have failed.

Some of the anticonvulsants here have links to more information, because the medicine has other uses within mental health. If the medicine is really only used for epilepsy, we haven't the expertise to do a file for them.

Main medicines

First line 

• Carbamazepine (Tegretol ®)

• Lamotrigine (Lamictal ®)

• Levetiracetam

• Oxcarbazepine (Trileptal ®) 

• Phenytoin (Epanutin ®)

• Topiramate

• Valproate (variously known as valproic acid, sodium valproate, valproate semisodium - these are all the same active molecule with very little if any real difference between them; e.g. Epilim®, Depakote®)

Second line

• Benzodiazepines (such as clobazam, clonazepam, diazepam)

• Barbiturates (such as phenobarbitone/phenobarbital, primidone)

• Ethosuximide (Zarontin ®)

• Gabapentin

• Piracetam

• Pregabalin (Lyrica ®)

• Rufinamide

• Tiagabine

• Vigabatrin

• Zonisamide 

These are often used in combination.

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There probably is, but here in the C&M bunker we haven't really got the expertise to do this in the same way as the other medicines. A Handy Chart is under construction at the moment, but we will need to get it checked over by a real expert in the field to make sure it is correct. Please call back in 2011 for an update on progress.

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You should think carefully about taking any chemical that affects your body, including your brain. So think carefully before your next cup of tea or coffee!

Epilepsy is slightly different in that medicines are the main treatments and, while they do not cure anything as such, they can stop fits happening and stop the damage these cause.

For an appeal for everyone to have a sense of balance about medicines and talking therapies please click here for our take on it.

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If you’re taking these for epilepsy, then they may well be life-long, or at least several years after your last episode. There are some ways to try to "guesstimate" the risk you would have of more fits if you stopped your anticonvulsants.

Whatever you do, if you decide to stop, please do it gradually over at least several months. You’ve a lot to lose by stopping too quickly and not a lot to lose by taking those extra few months and not destabilising yourself.

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Again, this isn't our area of expertise and often takes a lot of time to get the doses right so you should probably consult an expert. It would usually be somewhere around 6-8 weeks, but of course this would depend on how often your seizures occur and how soon you can find out if they're getting less frequent.

Before going onto another medicine, it is worth trying to get the best out of the first one. There is a risk that switching anticonvulsants too quickly means you don’t get the best out of one medicine. Then perhaps you start to search for the “magic bullet”, expecting the medicines to work quicker and having less patience. There are of course no “magic bullets”. Epilepsy affects the whole brain and can have many causes so it is unfair to expect a sudden cure. It is quite possible to stop fits in almost everyone, but the doses of drugs necessary would mean you might well be unconscious. So, the positive effects (stopping or reducing fits) has to be balanced against the negative effects e.g. side effects by trying to get the dose of your medicine(s) as best as it can be. If side effects are the main problem with a medicine, try to cope with these by e.g. changing times, splitting the dose, manage side effects etc.

The best thing to do is set out your aims of success of any treatment in advance and be realistic. If you decide to stop, then that’s your decision, but make sure you consider the chances of having fits again (and consequences of that to yourself and the people close to you).

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There are no easy answers to this and it is a very individual choice. Generally one medicine should be the aim but sometimes combinations (often called “polypharmacy”) help, particularly in epilepsy. There are so many combinations, it isn't really possible to put a table because it would be so big. It is best to discuss this with your prescriber. Often in epilepsy a combination of medicines happens because stopping one and starting another can be dangerous e.g. fits come back. When combining medicines for epilepsy your prescriber will need to make sure they don;t interact with each other, and that you get the best out of each anticonvulsant.

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If you want to read up a bit more on the best treatments, there are many guidelines that you can look at. Probably the most important of these for England and Wales are those produced by NICE (the National Institute for Health and Clinical Excellence). NICE is an independent body that is asked to produce advice about preventing and treating illnesses and promoting good health. Scotland and Northern Ireland have their own similar bodies.

Each set of NICE Guidelines is written by an independent and carefully chosen group of specialists and experts (including service users and carers). They carefully review the available evidence and base their guidelines on this.

There are two main types of NICE guidance:

• "Technology appraisal". These look at an "intervention" (i.e. a medicine, a surgical operation etc) and decide if they think the evidence is good enough to make this intervention a standard and/or if it is cost-effective compared to other treatments

• "Clinical guidelines", which look at a particular condition (e.g. hypertension, lung cancer, depression, Parkinson's disease, bipolar disorder etc) and give guidelines covering medicines, services, support etc.

The guidelines are well intentioned and give generally sound guidance (although these are sometimes controversial). They are, however, only "guidelines", so are not rigid instructions.

When NICE issues a guideline, it produces a full set, and all of these are available on the NICE website:

• Full guideline (very long and detailed, often several hundred pages, for anorak healthcare professionals only)

• Official guideline (usually 10-30 pages, the summary version for healthcare professionals)

• Quick reference guideline for healthcare professionals (usually only a couple of pages)

• User-friendly summary for service users, carers and the general public

These should then be reviewed, usually about 4-5 years or sooner if more information becomes available.

As a general rule, you should start with treatments recommended by NICE as these are the ones with most evidence that they work. However, if these do not help you, it may be useful to try other treatments.

• NICE (click here for the epilepsy guidelines)

• Scottish Intercollegiate Guidelines Network (SIGN) guidelines for epilepsies in children (2005) and epilepsies in adults (2007)

• Northern Ireland

There are plenty of other guidelines and so-called "consensus statements" (where a group of experts and specialists pool their ideas, based on their own experiences as well as what the published papers say, rather than just what the published studies say). These will have been produced for healthcare professionals by such bodies as BAP (British Association for Psychopharmacology).

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The resources below provide more information  about epilepsy. Please note that this is not an exhaustive list. We welcome your feedback on resources that you think should be listed here.

Mental Health Ireland has a great links page on this extensive site

Your Mental Health Ireland, with a young person’s page as well

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