Having an electroencephalograph (EEG) at our EEG Telemetry Unit
The following information should tell you everything you need to know about having an EEG at our EEG Telemetry Unit.
What is an EEG?
An EEG (or ‘electroencephalograph’) is a test to help with the diagnosis and management of epilepsy. ‘Electro’ means the test records electrical impulses or brain wave activity, ‘encephalo’ means the brain, and ‘graph’ means that the brain wave activity is shown on a computer screen.
What does an EEG show?
An EEG records brain wave activity using electrodes to pick up electrical signals from brain cells. When someone has an epileptic seizure, their brain activity changes. This change can be seen on the EEG and is called ‘epileptiform activity’. Some people have epileptiform activity even if they are not having a seizure.
Before you have the test
We will ask you to do the following.
Please take your medication as normal and bring a list of your medication with you. Make sure that you do not have any hair products, such as gel, spray or oil, in your hair. You need to have clean hair for the EEG electrodes to stick to your scalp. Please have something to eat before the test, either breakfast before an EEG in the morning or lunch before an EEG in the afternoon.
Having a routine EEG
The EEG uses a number of small electrodes placed on the head and held in place using a sticky paste. These are connected to the recording machine and computer.
The brain activity recording lasts about 20 to 30 minutes. We will ask you to sit on a chair or lie on a bed. We might ask you to do several things, to help show changes in brain activity that may help with your diagnosis. These are:
deep breathing (hyperventilation) opening and closing your eyes looking at a flashing light (photic stimulation).
Some people have seizures triggered by flashing lights (photosensitive epilepsy).There is a small chance that the deep breathing or the flashing light will trigger a seizure. You will not be asked to do this if you are worried or uncomfortable.
We also make a video recording as part of the test, in case you have a seizure during the EEG. If you have a seizure, we will keep the video as part of your confidential medical records.
After the test
We will remove the electrodes. You will have some paste left in your hair but this will easily wash out with shampoo at home. There are no after-effects from the test - you can carry on your day-to-day activities as normal
Ambulatory and overnight EEGs
Sometimes you might need to have an EEG over a longer period of time. This is usually if we have not been able to get enough information from a routine EEG. With ‘ambulatory EEGs’ we record your brain activity for a longer period of time (usually 24 hours). For ‘overnight EEGs’ we record brain activity throughout the night while you are asleep.
What is the difference between ambulatory and overnight EEGs and a routine EEG?
Ambulatory and overnight EEGs are similar to routine EEGs but the equipment we use is slightly different.
The electrodes are attached in the same way but with a glue called ‘collodion’. These are connected to a portable recording device which you wear in a small carrying bag. This means that you can take the recorder home with you and carry on with your normal day-to-day routine. However, you must not get the recorder wet so it is important not to shower, bath or swim.
We will ask you to keep a diary of what you do.
Frequently asked questions
Will the test hurt?
An EEG is painless. It records the natural electrical activity of the brain. The electrodes do not use electricity.
Are needles involved in the test?
No needles are used. The test is non-invasive.
Can you tell what I am thinking?
We cannot pick up any thoughts you have or read your mind.
Can I wear jewellery?
Jewellery will not affect the test, so you can wear it. You might need to remove any earrings if they get in the way.
When will I get the results?
The results from routine, ambulatory and overnight EEGs will need to be analysed. We will give the results to your neurologist who will talk to you about them at your next appointment.
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Thames Path Challenge
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London Marathon
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Skydive
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Great Manchester run
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Manchester Marathon
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Hackney Half Marathon
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Run local
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Trekfest
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Virtual London Marathon
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Supporter Conference
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London Landmarks Half Marathon
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RideLondon
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Iconic Joy Division concert streamed free to raise money for Epilepsy Society
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Write to your MP
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Joy Division concert raises £21,000 for Epilepsy Society
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The Queen sends special letter of support to Epilepsy Society
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On Friday, a young woman, Hari Miller, tweeted a post about an order of service she had discovered in her desk drawer.
Brain's natural valium could stop seizures, scientists say
Researchers at Stanford University School of Medicine have found that a naturally occurring protein secreted only in discrete areas of the mammalian brain may act as a Valium-like brake on certain types of epileptic seizures.
It's not just epilepsy, says expert
At least 50 percent of adults with active epilepsy are also living with other health conditions say experts at a leading epilepsy medical research charity.
Some versions of Mylan's Oxcarbazepine are out of stock in the UK
Update 28/8/2019: Mylan has confirmed that all three strenghts of oxcarbazepine are currently in stock.
Just plugging the hole in the social media dam is not enough, says Epilepsy Society
A recent decision by Twitter to no longer allow animated PNG image files (APNGs) to be added to tweets has been welcomed by the Epilepsy Society.
Phenytoin Sodium 100mg capsules out of stock
UPDATE 10 June 2020 : there has been a delay in the resupply of Accord phenytoin 100mg capsules. They hope to provide an update next week on a new date for resupply. In the meantime, Flynn Pharma, who also supply phenytoin, have sufficient supplies to meet demand.
Brothers are real epilepsy champions on Michael McIntyre's big show
It was an unexpected surprise for everyone affected by epilepsy when three amazing brothers, Zac, Josh and Finn were the ‘unexpected stars of the show’ on Michael McIntyre’s Big Show.
Convulex (Valproic Acid) in short supply
We have been informed by the Medicines Supply Team at the Department of Health and Social Services that there is a supply issue affecting all strengths of Convulex (valproic acid) capsules.
Safeguard people with photosensitive epilepsy online, Epilepsy Society tells Government
Epilepsy Society has once again called on the Government to safeguard people with photosensitive epilepsy online, by including them in their Online Harms Bill.
Epanutin and Carbagen are epilepsy drugs named on gov’s ‘Short Supply’ list
A 24-page document circulated to doctors by the Department of Health and Social Care (DHSC) last week, lists many NHS drugs which are currently in short supply, including some medications for epilepsy.
All strengths of Gabitril (Tiagabine) are now back in stock
Teva UK has confirmed that all strengths of Gabitril (5mg, 10mg, 15mg) are now back in stock and that these have been made available to pharmacies across the country.
Epanutin (Phenytoin) Infatabs 50 Mg still out of stock
We have been advised by the pharmaceutical company Pfizer that due to manufacturing delays, Epanutin (phenytoin) Infatabs 50mg are still out of stock.
Gabitril (Tiagabine) 10mg should be available next week, says Teva UK
We have been informed by Teva UK that Gabitril (tiagabine) 10mg strength should be available in pharmacies from the middle of next week.
New identity document for voters
People with hidden disabilities such as epilepsy, will not be penalized by new Government plans to introduce compulsory photo ID cards for voters before a general election.
Plans for medicines supplies post Brexit are in good shape, says Government
Epilepsy Society has welcomed the news that 96 per cent of medicine suppliers in the UK have now responded to the Government about their preparations for exiting the European Union.
Epilepsy Society responds to risks around medication shortages
On 7 October, The Mirror published an article about the risks surrounding medication shortages.
Accord Levetiracetam 500mg tablets are now back in stock in the UK
Update 27/9/19:
Accord have confirmed that levetiracetam 500mg tablets came back into stock on 17th September 2019. However, due to delivery issues with their carrier, a lot of deliveries have yet to be made. They anticipate most outstanding deliveries will be made by mid-next week.
Epilepsy Society welcomes European approval of medicinal cannabis for severe childhood epilepsies
Epilepsy Society's medical director Professor Ley Sander has cautiously welcomed a decision by the European Commission to approve Epidyolex in the treatment of two severe childhood epilepsies.
Epilepsy Society welcomes latest plans to ensure supply of medicines post Brexit
Epilepsy Society's Chief Executive Clare Pelham says she is pleased to learn that the Government has now signed up eight firms to help bring in vital medicines to the UK after Brexit on 31 October 2019.
Gabitril tablets out of stock until end of October - update
UPDATE: Following our earlier news story, we have been informed by Teva UK that all strengths of Gabitril will be out of stock in the UK until the end of October, with possible additional shortages of Gabitril 10mg strength in early 2020.
DHSC says robust plans in place to prevent disruption to medicines supplies documented in Operation Yellowhammer
The Department of Health and Social Services (DHSC) has assured us they are doing everything they can to ensure an uninterrupted supply of medicines following Brexit on 31 October.
Epanutin is now back in stock in the UK
As of today, Pfizer have confirmed that Epanutin 30mg/5ml oral suspension is back in stock in the UK.
Epilepsy Society reassures people that contingency plans are in place for medicines post Brexit
Recent media reports have suggested that some epilepsy drugs have been impossible to stockpile in advance of a no-deal Brexit.
Epilim and Frisium should be back in stock by end of August
UPDATE: We have been informed by Sanofi that stock levels of their medicines, including Epilim and Frisium, should be back to normal before the end of August 2019.
Gabitril tablets out of stock until end of October
UPDATE: Following our earlier news story, we have been informed by Teva UK that all strengths of Gabitril will be out of stock in the UK until the end of October, with possible additional shortages of Gabitril 10mg strength in early 2020.
Peter Hook dedicates song to mum who lost son to SUDEP
When bass player Peter Hook dedicated the last song of his set "Love Will Tear Us Apart" to Julie Sims at PennFest, Julie admits it was a very emotional moment.
Milpharm Topiramate 25mg is out of stock in UK
We have been informed that Milpharm's version of topiramate 25mg tablets are out of stock in the UK.
Diazepam RecTubes 5mg and 10mg are out of stock in UK
Diazepam RecTubes (rectal diazepam) 5mg and 10mg doses are out of stock in the UK.
Shortage of Epanutin® (phenytoin) 30mg/5ml oral suspension
Update 9 August 19:
We are aware that some of you are struggling to gain access to Epanutin (phenytoin) 30mg/5ml oral suspension.
Gabitril tablets are currently out of stock
We have been informed by Teva UK that all strengths of Gabitril (tiagabine) tablets are currently out of stock in the UK.
Temporary delay in delivery of Epilim and Frisium
We have been informed by Sanofi that there has been a temporary delay to the delivery of some medicines including Epilim and Frisium.
Why Disney star Cameron Boyce’sdeath from SUDEP underlines urgency of our research
A coroner in Los Angeles has confirmed that Disney actor Cameron Boyce died of sudden unexpected death in epilepsy.
Clinically trialled medicinal cannabis product could be given final approval in two months
Epidyolex, an oral solution of cannabidiol, has been recommended for approval for use as an add-on therapy for seizures associated with two severe forms of epilepsy beginning in childhood
Actor Idris Elba comes to aid of woman having a seizure
Epilepsy Society has hailed actor Idris Elba a superhero after he stopped his new play, Tree - mid-performance - to help a woman in the audience who was having a seizure.
More batches of Vimpat 100mg tablets recalled by MHRA
More batches of the epilepsy medication Vimpat (lacosamide) 100mg tablets have been recalled by the Medicines and Healthcare products Regulatory Agency (MHRA).
Epilim Chronosphere 1000mg modified release temporarily out of stock
Sanofi has informed us that Epilim Chronosphere 1000mg Modified Release is temporarily out of stock in the UK.
Last chance for school children to design a seizure first aid poster and win £125
Primary school pupils across the UK are being given the chance to design a seizure first aid poster to raise awareness of epilepsy. The lucky winner will receive a £25 voucher for themselves and £100 for their science department.
Invite your local MP to All Party Parliamentary Group on Epilepsy meeting to discuss Brexit
Would you like to invite your MP to a meeting to discuss the potential impact of Brexit - and particularly a no-deal Brexit - on people with epilepsy?
Joy Division fan Julie wins tickets to Penn Fest
Julie Sims has always been a fan of post-punk band Joy Division. And she has felt a special connection to the band as her young son, Joey had epilepsy like Joy Division's lead singer Ian Curtis.
Epilepsy Society submits response to Government's Online Harms White Paper
Epilepsy Society has submitted its response to the Online Harms White Paper, calling on the Government to include safeguarding measures for people with photosensitive epilepsy when they are using social media platforms such as Facebook, Instagram and Twitter.
Young woman experiences the world of politics through our 'Me and My Shadow' scheme
Budding politician Sydney Joyce, recently shadowed Paula Sherriff MP as part of our 'Me and My Shadow' scheme. Paula is the MP for Dewsbury in Yorkshire and the Chair of the All Party Parliamentary Group on Epilepsy.
World Health Organization calls for action to reduce issues around epilepsy worldwide
A new report released by the World Health Organisation (WHO) calls for action to improve healthcare and reduce stigma and discrimination around epilepsy.
Frisium 10mg supply disruption across the UK
We have been informed by Sanofi that there has been a temporary disruption in the manufacturing of frisium (clobazam) 10mg.
Vimpat 100mg tablets have been recalled by Medicines and Healthcare products Regulatory Agency
We have been informed by the Medicines and Healthcare products Regulatory Agency (MHRA) that they are supporting a precautionary recall for Vimpat 100mg tablets.
Gov announces further measures for medicine supplies in case of no-deal Brexit
The Government has announced further measures to ensure there will be an uninterrupted supply of medicines if the UK leaves the European Union without a deal on 31 October.
London bus driver asks everyone to get on board with new 'Calm, Cushion, Call' campaign
Bus driver Vic Hamilton is hoping everyone will get on board with our new campaign - 'Calm, Cushion, Call' - to teach people how to help someone who is having an epileptic seizure.
Help with reporting side effects from your medication through the Yellow Card scheme
Did you know that if you have a side effect from one of your medications, you can report it through the Yellow Card scheme?
New guidelines for carers administering epilepsy emergency medication launched
This month, the Epilepsy Nurses Association (ESNA) is launching new, best practice training guidelines for professional carers administering buccal (oromucosal) midazolam, emergency medication for people with epilepsy, in the community.
Aston University professor named among nation's lifesavers for work around photosensitive epilepsy
A professor who spent his life championing people with photosensitive epilepsy has been named as one of the nation's top 100 lifesavers from across UK universities.
Epilepsy Society trustee completes the London 2 Brighton challenge
A huge congratulations to our trustee Andrew George, who completed the London 2 Brighton challenge on 25-26 May during National Epilepsy Week. He took on the challenge to raise money to fund a bioinformatician for a month to carry out vital epilepsy research.
Epilepsy Society launches new first aid campaign after young man has seizure on escalator
When 28-year-old Sean Hamilton had a seizure on an escalator at London Underground, it was only the quick reactions of his dad, Vic, that stopped him falling on to other commuters at the busy tube station.
Medics warned to fly less for health of their patients
Three of the world's leading epilepsy specialists have warned that climate change may be damaging the health of their patients.
Zonisamide is out of stock in the UK
We have been informed by Teva UK that all formulations of Zonisamide are temporarily out of stock in the UK.
Epilim medication shortages
We have been informed by Sanofi that there may be problems with the supply of two forms of Epilim (sodium valproate) over the next 10 days.
Shortage of Epanutin Infatabs 50 mg will now last until November 2019
We have been advised by the pharmaceutical company Pfizer that due to manufacturing delays, the shortage of Epanutin (phenytoin) Infatabs 50mg will now last from 1 May through to November 2019.
Epilepsy Society's MRI unit hosted 3rd ILAE Neuroimaging course
Expert consultants and radiographers in epilepsy congregated at Epilepsy Society's prestigious Chalfont Centre on 28 February 2019 to attend the 3rd ILAE British Branch Epilepsy Neuroimaging course.
Regional volunteer of Epilepsy Society attends reception at Windsor Castle
Long-time epilepsy volunteer Monica Kendall, met HM The Queen when she enjoyed a visit to Windsor Castle on 2 April 2019.
Woman suffers horrific injuries due to falling during a seizure
Almost eight months ago, Natasha McQuinn, 30, collapsed at home onto a boiling hot radiator during a seizure and burnt all of her back.
Epilepsy Society calls on Gov to safeguard people with photosensitive epilepsy online
Epilepsy Society is calling on the Government to safeguard people with photosensitive epilepsy online by regulating flashing images that could induce a seizure.
Health minister responds to call for information about drug shortages
Health minister Stephen Hammond MP has sent the following statement to Epilepsy Society in response to our call for more information about medicines shortages. Mr Hammond is replying on behalf of Health Secretary Matt Hancock.
Zonisamide 25mg and 100mg out of stock
We have been informed by pharmaceutical company Actavis (which was recently acquired by Teva UK), that due to wholesaler issues, Zonisamide tablets in 25mg and 100mg are out of stock until early May 2019.
Epilepsy Society calls for urgent review of medicines supply chain
Epilepsy Society is calling on Health Secretary Matt Hancock to commission an urgent review of the medicines supply chain as patients are forced to trawl around pharmacies in search of their drugs.
How to manage if there is a shortage of your epilepsy medication
We are receiving many calls to our Helpline alongside online enquiries from people who are experiencing difficulties in getting their epilepsy medication. Here, our medical director Professor Ley Sander looks at the problem and explains what you can do to manage the situation and how the Government is tackling current shortages.
Royal Colleges publish new guidance around use of valproate for women and girls of childbearing age with epilepsy
New guidance brings greater clarity for doctors and patients in implementing MHRA regulations around use of sodium valproate for women and girls of childbearing age with epilepsy
Charity hopes guidance will help to address some of the complex situations that arise in individual cases
Shortage of Epanutin Infatabs 50 mg
We have been advised by the pharmaceutical company Pfizer that due to manufacturing delays there will be a shortage of Epanutin (phenytoin) Infatabs 50mg from 1 May through to July or August 2019.
Teva to discontinue Oxcarbazepine 150mg tablets
Teva UK are discontinuing their version of Oxcarbazepine 150mg tablets in October 2019. There is currently stock available. They have already discontinued their 300mg and 600mg tablets.
All dosages of Epilim are now back in stock
Following on from our news story on 1 February 2019, we have been informed by Sanofi that all doses and formulations of Epilim (sodium valproate) are currently in stock in the UK.
Pregabalin and Gabapentin have been re-classified as class 3 controlled drugs
If you have been prescribed gabapentin (Neurontin) or pregabalin (Alzain or Lyrica), it is important to be aware that the law is changing from 1 April 2019 and these medications are being re-classified as controlled drugs.
Award-winning playwright to perform a show about living with someone who has epilepsy
Update: 12 March 2019
Our Marketing and Communications Executive, Paige Dawkins, went to see Dangerous Giant Animals at the weekend. Here, she reviews the play.
Some dosages of Topamax are out of stock in the UK
Some dosages of Topamax (topiramate), 25mg and 100mg are currently out of stock in the UK.
Neurontin 400mg capsules are out of stock in the UK
Neurontin (gabapentin) 400mg capsules are currently out of stock in the UK. The manufacturer, Pfizer, says this is due to a problem with the packaging.
We launch our Me and My Shadow scheme
For the second year running we are launching our Me and My Shadow scheme, giving young women with epilepsy the chance to shadow women in a range of different careers.
Peter Hook to sell Joy Division and New Order memorabilia to raise money for Epilepsy Society
Legendary bassist Peter Hook is helping to support people with epilepsy by auctioning all of his guitars and memorabilia from his Joy Division and New Order days.
Epilepsy Society Neurologist on BBC Radio 4 to discuss new genomics research
If you tuned into Woman's Hour on BBC Radio 4 this morning, you would have heard one of our Consultant Neurologists, Dr Simona Balestrini, discussing how Epilepsy Society's new €2.5 million genomics research partnership with biopharmaceutical UCB, could bring new hope to people with epilepsy.
Health Secretary endorses unique partnership forged by Epilepsy Society and pharmaceutical UCB
Health Secretary Matt Hancock has endorsed a unique partnership forged by UK charity Epilepsy Society and Brussels based biopharmaceutical company, UCB.
€2.5 million genomic research programme brings hope of seizure-free life for people with epilepsy
Carbagen supply shortage until mid 2019
We have been informed by the Department of Health and Social Care that some preparations of Carbagen (carbamazepine), manufactured by Mylan, will be unavailable until mid to late 2019.
Epilim drug shortages in the UK
Update 15/2/19 - We have been informed by Sanofi that all doses and formulations of Epilim are in stock this week, apart from Epilim Chronosphere MR 500mg Modified Release Granules.
How our research team ran to fund a brand new TMS-EEG chair
A big thank you to our Director of Genomics, Professor Sanjay Sisodiya and two of his colleagues, who ran the Royal Parks Half Marathon to raise money for one of our clinics.
Epilepsy Society's medical director advises people not to stockpile epilepsy medication
Epilepsy Society's medical director, Professor Ley Sander is advising people with epilepsy not to stockpile medication themselves.
Anti-epileptic drug brivaracetam is now available for children in Wales
Children aged four years and older in Wales will have access to the anti-epileptic drug brivaracetam as a new treatment option.
Gov pledges to exempt epilepsy from latest emergency medicine plans post-Brexit
Epilepsy Society is pleased to hear that the Government has promised to exempt people with epilepsy from its most recent plans for potential post-Brexit medicine shortages. The Department of Health and Social Care is proposing to give pharmacists power to dispense alternative drugs if those prescribed by GPs are in short supply after Britain leaves the EU.
Research is bringing new hope of two different treatments to prevent seizures
Two new treatments are being developed for people with epilepsy, that may offer hope of better seizure control in the future.
Data shows blood-test can distinguish between epileptic and psychogenic non-epileptic seizures
A recent study shows a bio-marker based blood test can accurately distinguish epilepsy seizures from psychogenic non-epileptic seizures (PNES).
Carbagen and Carbagen SR are out of stock in the UK
Carbagen (carbamazepine) and Carbagen SR (prolonged-release carbamazepine) are out of stock in the UK. Mylan who manufacture both drugs, say this is due to a supply constraint.
Epilim Chrono 500mg tablets are out of stock in the UK
Epilim Chrono 500mg tablets are temporarily out of stock in the UK. Sanofi who manufacture Epilim Chrono, say this is due to a high demand.
Genetic research leads to better understanding of common epilepsies
Researchers across the globe have thrown new light on the important role that genetics play in some of the most common epilepsies.
Anti-epileptic drug brivaracetam is now available for children in Scotland
Children aged four years and older in Scotland will have access to an anti-epileptic drug (AED) brivaracetam as a new treatment option. Pharmaceutical company UCB announced on 10 December that the Scottish Medicines Consortium has accepted expanding the use of the drug.
Our CEO Clare Pelham has won a CEO Today United Kingdom Award 2018
We are thrilled to announce that our Chief Executive Officer, Clare Pelham, has won a CEO Today United Kingdom Award 2018 for her work in the charity sector.
Next stage in genetic research brings us closer to understanding epilepsy
More than 800 DNA samples from Epilepsy Society have now been sequenced as part of Genomics England's landmark 100,000 Genomes Project. This means our researchers, bioinformaticians and clinicians are at the exciting stage of being able to analyse the new data, bringing hope of groundbreaking results in the diagnosis, treatment and understanding of epilepsy.
Lucky Luke scoops dream job with award winning BBC radio team
Luke Berry, 20, who has had epilepsy since the age of nine, is finally realising his long-held dream of working in radio with the BBC.
Specialist doctors can now prescribe medicinal cannabis for epilepsy
As of this morning (1 November), specialist doctors in the UK can now prescribe cannabis-based medicines to patients with a limited number of conditions. This includes children with severe epilepsy syndromes.
How a pioneering software system is transforming brain surgery
A pioneering new approach being trialled at University College London Hospital (UCLH) hopes to make epilepsy surgery safer and easier. A team of researchers, clinicians and engineers from Epilepsy Society, UCLH, UCL and King’s College London have developed a world-leading software system called EpiNav, which stands for epilepsy navigation, and their work is being featured on today’s episode (10 October 2018) of the BBC’s Trust Me I’m a Doctor.
Peter Hook to perform anniversary concerts in celebration of Joy Division and donate to Epilepsy Society
Peter Hook has recently announced two special concerts with his band, The Light, to perform 'Joy Division: A Celebration' to commemorate four decades of the group's and Ian Curtis' continuing influence.
Review into sodium valproate - your chance to have your say
An independent safety review into the epilepsy medication, sodium valproate, is now officially open and has put out a 'call for evidence' from those affected by the drug.
Teva UK discontinues lamotrigine tablets
Teva UK have announced that they are discontinuing the following versions of Teva lamotrigine, although some will still be available for a limited period next year, as shown below:
Epilepsy Society responds to reports of medicine stockpiling in advance of Brexit
Media reports in recent weeks have indicated that some UK pharmaceutical companies are stockpiling medicines in preparation for a possible hard Brexit in 2019.
Epilepsy Society welcomes Government decision to relax licensing of medicinal cannabis
Please note that there are further updates to this news story which you can read at the links below:
Specialist doctors can now prescribe medicinal cannabis for epilepsy (1 November 2018)
Medicinal cannabis can now be prescribed by specialists for epilepsy (12 October 2018)
Tribunal overrules findings in case involving epilepsy drug
A decision by the Competition and Markets Authority to fine Pfizer and Flynn Pharma a total of £90m for overcharging for an epilepsy drug, has been remitted back to the CMA after a tribunal ruled against the government watchdog's decision.
Clare Pelham comments on new sodium valproate regulations
Our chief executive Clare Pelham, a member of the Commission on Human Medicines' Sodium Valproate Expert Working Group, commented on the news of the new regulations surrounding sodium valproate.
Charity tells health secretary new drug regulations could fail without public campaign
Epilepsy Society today welcomes new regulatory measures to stop babies being born with avoidable disabilities after being exposed to the drug, sodium valproate, in the womb.
Poster campaign raises awareness of epilepsy on public transport
This week, for the first time ever, epilepsy is featuring as part of a high profile poster campaign across London's underground and bus networks.
Epilepsy Society welcomes new measures to ensure no babies are exposed to sodium valproate during pregnancy
New measures announced to stop babies being exposed to valproate in the womb
Valproate medicines are available in the UK under brand names such as Epilim, Epival, Episenta, Convulex and Orlept
No girl or woman should stop taking valproate without first consulting her doctor.
Epilepsy Society praises Government decision to review handling of concerns around sodium valproate
Epilepsy Society's chief executive Clare Pelham has praised the Government's decision to announce a forward-looking review that will address the way the healthcare system has handled the concerns of patients in its care and make certain that lessons are learned and history does not repeat itself.
EMA publishes recommendations on sodium valproate
New measures to avoid the exposure of unborn babies to the epilepsy drug sodium valproate have been announced by the safety committee of the European Medicines Agency (EMA).
Clare Pelham joins expert group on sodium valproate
Epilepsy Society's chief executive Clare Pelham has joined the Sodium Valproate Expert Working Group which supports the Government's Commission on Human Medicines.
MPs debate safety issues around sodium valproate in House of Commons
Although we could not see them as we watched today's sodium valproate debate via Parliament Live TV, the presence of three women -Janet Williams, Emma Murphy and Deborah Mann - as they sat in the public gallery, was very much felt in the House of Commons.
Health secretary Jeremy Hunt sends second letter to Epilepsy Society
Epilepsy Society's chief executive, Clare Pelham, has welcomed a second letter from the Department of Health in response to her letter to health secretary Jeremy Hunt, calling for mandatory reviews for women and girls of childbearing age taking sodium valproate.
Arlene Foster and DUP support Epilepsy Society sodium valproate campaign
Arlene Foster, leader of the Democratic Unionist Party and First Minister of Northern Ireland has pledged her support for Epilepsy Society's campaign to ensure mandatory reviews for all women and girls of childbearing who take sodium valproate.
Jeremy Hunt responds to Epilepsy Society on sodium valproate
On 21 September 2017, Epilepsy Society's chief executive, Clare Pelham, wrote to health secretary Jeremy Hunt asking him to introduce mandatory annual reviews for any girl or woman of childbearing age who is taking the epilepsy drug sodium valproate.
Sodium valproate public hearing - summary report
Following last month's public hearing into the epilepsy drug sodium valproate, the European Medicines Agency(EMA) has now published a full summary report.
Epilepsy Society's Clare Pelham discusses sodium valproate and EMA public hearing on BBC News
Watch and listen to Epilepsy Society's CEO Clare Pelham discussing our sodium valproate survey and the European Medicine's Agency public hearing into the epilepsy drug on various BBC News programmes over the last few days.
Women still not aware of epilepsy medicine risk in pregnancy
Almost 1 in 5 (18%) women currently taking the epilepsy medication sodium valproate do not know it can harm the development and physical health of their unborn child should they become pregnant
more than a quarter (28%) of women taking the epilepsy drug have not been given information about risks for their unborn child
more than two thirds (68%) of women taking the epilepsy drug have not received specially produced valproate materials released in February 2016
Charities call on government to make annual reviews mandatory for women taking the drug
Epilepsy Society's medical director says don't panic over current shortages of epilepsy drugs
No need to panic over current shortages of some epilepsy medications
Swiching between different types of levtiracetam should not be a problem
Switching to a different type of clobazam should be done in consultation with a doctor
Latest update on supply problems
Charity calls for greater public awareness as people with epilepsy are accused of being drunk following a seizure
As dry January ends, Epilepsy Society is urging the public to think twice before assuming that a person who is staggering around in a confused state, is drunk.
Warning over morning-after-pill for women with epilepsy
Women with epilepsy are being advised to consult their doctor, pharmacist or specialist nurse if they are using the morning-after-pill containing levonorgestrel.
Epilepsy drug Trobalt (retigabine) to be discontinued
The epilepsy drug Trobalt, also known as retigabine, is to be discontinued and will no longer be available after June 2017.
Study finds 83 per cent of people with epilepsy also have headaches
A study has found that headaches cause a ‘burden’ to the quality of life of many people with epilepsy.
Study finds link between smoking and epilepsy
There appears to be a correlation between epilepsy and smoking, a study of people living in French-speaking Switzerland has found.
Suicide rate among people with epilepsy is 22 per cent greater than the general population
The suicide rate among people with epilepsy has been found to be 22 per cent higher than in the general population in a study by the Centers for Disease Control and Prevention (CDC) in the United States.
Caution advised over new links between pregabalin and birth defects
Epilepsy Society's medical director Professor Ley Sander has advised women who are taking pregabalin not to panic over new research which suggests the epilepsy drug could pose risks for an unborn child if taken during pregnancy.
Lamotrigine does not significantly increase risk of birth defects during pregnancy, says new study
A new study has shown that babies born to women who are taking the epilepsy drug lamotrigine, do not have a significantly increased risk of birth defects such as cleft lip, cleft palate or club foot.
Article debates whether St Joan of Arc and St Paul of Tarsus had epilepsy
An article published in the journal Epilepsy & Behaviour aims to determine whether or not St Paul of Tarsus, writer of several New Testament books, and Joan of Arc, 15th Century French military leader, had epilepsy.
12 things you didn't know about epilepsy
Here are 12 things you may not know about this misunderstood condition.
Epilepsy Society welcomes new labeling on sodium valproate
Epilepsy Society has welcomed a Department of Health initiative to introduce better labeling on the packaging of the anti-epileptic drug sodium valproate, warning women and healthcare professionals of the risks associated with the medication.
Minimising risk from flashing lights
Epilepsy Society has reminded people whose seizures are triggered by flashing lights to take extra care as the winter season of parties and celebrations begins. Epilepsy Society’s consultant neurologist Dr Fergus Rugg-Gunn talks about ways to minimise your risk if you have photosensitive epilepsy.
Generic lamotrigine equivalent to branded version, study shows
Epilepsy Society has welcomed the findings of a new study which shows that the performance of the generic version of lamotrigine is equivalent to the original branded version of the the anti-epileptic medication.
Light therapy for people with epilepsy
Bright light therapy – commonly used to treat seasonal affective disorder – can reduce levels of depression and anxiety in patients with epilepsy, according to new research published online today by the British Journal of Psychiatry. Epilepsy Society’s consultant neuropsychologist Dr Sallie Baxendale was the lead researcher in the study of more than 100 patients with focal epilepsy not controlled by medication
Protein found in worms helps to stop seizure activity
Exciting new research that involves using a protein in worms to suppress seizures, could spell hope in the future for thousands of people with epilepsy.
Valproate and pregnancy awareness survey 2019
Are you a woman or girl under the age of 55 who is taking, or has taken, sodium valproate since 1 August 2018?
GP practice could close after failure to warn women of risks around sodium valproate
A GP practice in London could be closed down after inspectors found that staff had failed to warn women of the risks around the epilepsy medication sodium valproate during pregnancy.
MPs debate sodium valproate in House of Commons
MPs to debate safety issues around sodium valproate Thursday 19 October 2017
Contact your MP to encourage them to take part in the debate
Watch the debate live on Parliament Live TV.
Children affected by sodium valproate
The BBC is planning to run several news broadcasts about the European Medicines Agency (EMA) public hearing into sodium valproate taking place in London on 26 September 2017.
Doctors in new warning about epilepsy drug valproate
Results of a Europe-wide review of the epilepsy drug valproate, known to cause birth defects, has resulted in the Government sending strengthened warnings to all prescribing doctors and pharmacists.
Epilepsy medication and stockpiling issues
The BBC yesterday (Tuesday 9 June 2020) carried a report highlighting concerns that stockpiles of some medications in the UK have been exhausted. There are worries that this could mean there will not be time to replenish these stocks in case the government fails to strike a trade deal with the European Union at the end of the year.
PM Boris Johnson commits to helping our campaign to fight internet trolls
Prime Minister Boris Johnson has made a firm commitment to raise our concerns about malicious tweets designed to provoke seizures in people with photosensitive epilepsy, with Secretary of State for Digital, Culture, Media and Sport, Oliver Dowden.
Vimpat 50mg X 14 tablets shortage expected
We have been informed by UCB that Vimpat (lacosamide) 50mg x 14 tablets are likely to be out of stock within the next three weeks. The shortage is expected to last for a two-three week period.
Hero Zach completes his 2.6 challenge
This was the joyful moment when nine-year-old Zach Eagling crossed the finishing line to complete his #twopointsix challenge, raising a staggering £11,500 for the Epilepsy Society.
Women still unaware of risks around epilepsy medicines in pregnancy – charity survey finds
PLEASE NOTE: Women and girls should not stop taking valproate without first discussing it with their doctor. Up-to-date information and guidance on valproate use can be found here.
Cumberlege Review slams way healthcare system has responded to families affected by sodium valproate
After a two-year review led by Baroness Cumberlege, right, the Independent Medicines and Medical Devices Safety Review has today published its report into three medical interventions: the epilepsy medication, sodium valproate; the hormone pregnancy test, Primodos; and pelvic mesh implants.
Clare Pelham highlights need for radical change in regulation of healthcare system
Following the publication of the Independent Medicines and Medical Devices Safety Review, Clare Pelham, Chief Executive at the Epilepsy Society, says the appointment of a Patient Safety Commissioner and radical change at the regulatory body, the MHRA, are top priorities.
Wearing a face mask with epilepsy
Wearing a face covering or mask is to become mandatory in shops in England from 24 July 2020. It is already mandatory on public transport. So what does this mean for people with epilepsy?
Epilepsy Society welcomes Twitter’s ban of GIF search terms
Twitter have taken the decision to ban three key search terms, ‘epileptic, photosensitive and photosensitivity’ from its GIF search function, after internet trolls persistently used them to access flashing images with the intent of triggering seizures in people with epilepsy.
Exemption Cards For Face Coverings
In England, you now must wear a face covering by law in many indoor settings. This is to help control the spread of the Covid-19 virus. There are exemptions to this, for example if you feel it will cause you distress. If this is the case for you, you may wish to carry an exemption card with you.
PM and Sec of State promise action over targeting of people with Epilepsy online
Prime Minister Boris Johnson and his Secretary of State Oliver Dowden have promised that action will be taken to address the issue of internet trolls sending malicious tweets to trigger seizures in people with epilepsy.
Vimpat 50mg X 14 tablets back in stock
Back in June we reported a short-term stock outage of Vimpat (lacosamide) 50mg x 14 tablets. This was due to delays in production at the pharmaceutical company’s external manufacturing site.
Epanutin (phenytoin) update
We have received the following updates on Epanutin (phenytoin).
Dame Cheryl Gillan asks Matt Hancock to commit to free flu and covid vaccines for people with epilepsy
On Thursday 16 July 2020 during the Ministerial Statement Coronavirus Update Dame Cheryl Gillan asked Matt Hancock if the Department for Health and Social Care would consider including people with epilepsy in the clinically vulnerable category for coronavirus and the flu
Epilepsy Society-based neuropsychologist Sallie Baxendale wins international award
Neuropsychologist Sallie Baxendale, based at Epilepsy Society, has scooped a prestigious international award for the significant difference she has made to the treatment and care of people with epilepsy.
Zonisamide 50mg and 100mg out of stock
We have been informed by Teva that Zonisamide 50mg and 100mg are currently out of stock and stock is expected to return in December 2020. This is due to a manufacturing issue.
Seizures and hot summers
Thank you to everyone who took part in our recent surveys looking at the impact of excessively high temperatures on seizures. These have provided us with some invaluable insight into the link between the two and will help to influence our work as we experience increasingly hot summers.
Research using Apple watch links epileptic seizures to stress and missed sleep
New research using an Apple Watch app to track seizures in people with epilepsy has found that the most common triggers are often stress and missed sleep.
Epilepsy Society welcomes GIPHY’s prompt action to reduce online risk to people with epilepsy
The GIF library GIPHY have taken prompt action to reduce the risk for people with photosensitive epilepsy online, following Epilepsy Society’s concerns about harmful content in the library.
New law reforms could safeguard people from online harms
Epilepsy Society welcomes new proposals from the Law Commission to reform the law and better protect people from online harm. The news follows an ongoing campaign by the charity to make it a criminal offence to target people with epilepsy with malicious posts designed to trigger seizures.
Criminal Law Commissioner vows to tackle trolls targeting people with epilepsy
Criminal Law Commissioner, Professor Penney Lewis, has warned that anyone who sends flashing images to people with epilepsy, provoking a seizure, could potentially be guilty of an offence such as assault causing actual bodily harm.
Recall of three batches of Epilim 500mg gastro resistant tablets
We have been informed that the MHRA has recalled three batches of Epilim 500mg Gastro-Resistant tablets from pharmacies.
Zonisamide 25mg likely to go out of stock
We have been informed by Teva that Zonisamide 50mg and 100mg are currently out of stock and stock is expected to return in December 2020. This is due to a manufacturing issue.
Anti-Psychotic drugs and epilepsy
Epilepsy Society has stressed that anti-psychotic drugs should only ever be prescribed for people with epilepsy where essential. The charity's Medical Director Professor Ley Sander said this was particularly important when prescribing for those who also had learning difficulties.
Frisium (clobazam) 10mg tablets out of stock
We have been informed by Sanofi that Frisium (clobazam) 10mg tablets will be out of stock from mid-October, with resupply expected in early November.
Tell the Law Commission what you think
We're encouraging people with epilepsy and those who support people with epilepsy to let the Law Commission know what they think about their proposals for online harms.
FDA issues alert for lamotrigine in US
The FDA (Food and Drug Administration) in the US have issued an alert for lamotrigine/Lamictal which they say may pose risks for anyone with a heart condition, particularly arrhythmia.
Short-term Policy and Public Affairs Manager
We have a short-term opening for a Policy and Public Affairs Manager to support our team with its campaign work over the next two months.
Radio and tv campaign raises awareness of epilepsy
Today we are running a special epilepsy awareness campaign across the country's regional radio and tv stations, focusing on what it is like to live with drug resistant epilepsy and the different treatment options that are available.
TikTok to introduce feature that filters photosensitive videos
Epilepsy Society welcomes the news that TikTok is introducing a new feature that filters photosensitive videos. This is a significant step in helping to safeguard users with epilepsy.
Rare chance to own Peter Hook Signature BB Bass Guitar
The Epilepsy Society is once again thrilled to be teaming up with bass legend Peter Hook to raise money in support of people with epilepsy. Hooky is auctioning off one of his limited edition Signature BB Bass guitars, donated by Yamaha Guitars.
Epilepsy Society’s Medical Director reassures people with epilepsy over Covid-19 vaccine
Epilepsy Society’s Medical Director, Professor Ley Sander has reassured people with epilepsy that they should feel confident in having the new Covid-19 vaccine.
Epilepsy Society welcomes tough financial penalties on social media companies who fail to protect users
A Government decision to impose tough financial penalties on social media companies that do not safeguard their users, has been welcomed by the Epilepsy Society.
Plan ahead when it comes to medication and GP appointments
Epilepsy Society’s Medical Director, Professor Ley Sander is once again advising people to think ahead and make sure they do not leave getting their medication or healthcare appointment to the last minute. He is recommending that people should also avoid trying to stockpile their medication.
Epilepsy Society's Medical Director named as world's leading epilepsy expert for ninth year running
Congratulations to our Medical Director, Professor Ley Sander, who has been named as the world's leading expert on epilepsy for the ninth year running. And Epilepsy Society has been ranked as the top epilepsy research centre in the world - again for the ninth year in a row.
A Christmas message for the Queen - via Zoom
For nearly seven decades, the Queen has been patron of the Epilepsy Society. This year we have recorded a special Christmas message for Her Majesty via Zoom, with messages from some of the many people across the UK whose lives have been changed by the charity.
Gerrards Cross and Fulmer Netball Team take a virtual trek to Lapland for the Epilepsy Society
Members of the Gerrards Cross and Fulmer Netball Team have trekked an incredible 7,542 miles in a virtual challenge to reach Lapland before Christmas. And on route, they have already raised a fantastic £850 for their local charity, the Epilepsy Society.
Zonisamide 25/50/100mg out of stock
We have been informed by Teva UK that Zonisamide 25/50/100mg is currently out of stock.
Review looks at risks associated with epilepsy drugs during pregnancy
A new review has been published looking at risks associated with the most commonly prescribed anti-epileptic medications during pregnancy.
Vaccine offers hope for family visits
This is our amazing research team who put their day jobs on hold to help deliver the Covid-19 vaccine to almost all of the residents living at the Epilepsy Society.
Covid-19 vaccine - Q&A
All the most frequently asked questions about Covid-19 and the vaccines, with regularly updated information from the Department of Health and Social Care.
Medication update
We have been informed by Teva UK that Zonisamide 25/50/100mg is currently out of stock.
“Alarming” new study raises SUDEP concerns
The Epilepsy Society has expressed alarm about the doubling of Sudden Unexpected Death in Epilepsy (SUDEP) in pregnant and postnatal women.
Raising awareness of seizure first aid on International Epilepsy Day
Epilepsy Society is pleased to be partnering with Hidden Disabilities Sunflower, the organisation behind the sunflower lanyard, to mark International Epilepsy Day on 8 February 2021.
Elliott gets on his bike for Challenge-100 ride
Thirty-one-year-old Bradford man, Elliott Horan is planning to cycle 100 miles in four days to raise funds for the Epilepsy Society and to show how keeping fit can help with the depression and anxiety that often accompany his epilepsy.
Professor Ley Sander answers questions about the Covid-19 vaccine
Our Medical Director, Professor Ley Sander and our Social Media Officer, Paige Dawkins, went live on Facebook with a Q&A about the Covid-19 vaccine and epilepsy, answering some FAQs and live questions from the Facebook stream on the day.
People with epilepsy in priority group 6 for Covid-19 vaccine
Please read our update from the DHSC, reassuring people with epilepsy that they are included in priority group 6 for the Covid-19 vaccine. Also included is our downloadable vaccine letter to give to your GP.
Letter of support for reviewing treatment options for women and girls
Following publication of a review highlighting the risks linked to some epilepsy medications during pregnancy, our Medical Director, Professor Ley Sander, has written a letter to support women and girls requesting a review of their medication and an urgent referral to a neurologist if they are planning to become pregnant.
Epilepsy Society welcomes new registry but calls for expansion
The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.
Daily Express backs our #ZachsLaw campaign
We are thrilled to see that the Daily Express is today (19 February 2021) backing our Zach’s Law campaign to bring to justice internet trolls who send flashing images to people with epilepsy in order to trigger seizures.
Government pledges to tackle online abuse
The Government has promised that Ofcom will have “a suite of enforcement powers” to tackle online abuse against people with epilepsy.
How to book your Covid-19 vaccination
People with epilepsy can now book their Covid-19 vaccine direct through the NHS. Find out how.
Government “carefully considering” valproate redress scheme
The House of Lords has discussed the need for a redress scheme for mothers and babies harmed by sodium valproate.
Why you should have a Covid-19 vaccine
Epilepsy Society’s Medical Director, Professor Ley Sander, has stressed the importance of people with epilepsy receiving the Covid-19 vaccine.
Express's Richard Madeley calls for internet trolls to be prosecuted
Daily Express columnist and tv presenter, Richard Madeley has called for internet trolls to be prosecuted for targeting Epilepsy Society campaigner, nine-year-old Zach Eagling.
Safe Mum, Safe Baby: Write to your MP
We are asking you to write to your local MP, calling for their support for safer medicines for pregnant women with epilepsy.
Paying tribute to Dame Cheryl Gillan MP
Epilepsy Society pays tribute to Dame Cheryl Gillan MP following her sad death at the weekend.
Epilepsy Society launches 'Safe Mum, Safe Baby' campaign
Epilepsy Society is launching a new campaign - ‘Safe Mum, Safe Baby’ - calling for safer epilepsy medications in pregnancy.
It’s all about you - survey results
Thank you to everyone who took part in our survey – ‘It’s all about you’. Over 1,000 people completed the survey, including those with epilepsy and those affected by the condition.
Epilepsy - for richer, for poorer
As the nation prepares to say farewell to His Royal Highness Prince Philip, our Chief Executive, Clare Pelham, reflects on how love, death and even epilepsy have no respect for castles and palaces. Clare will be talking on BBC Radio 5 Live on Saturday morning from 6.30am.
Hancock backs genomics “to the hilt"
The Epilepsy Society has welcomed the Health Secretary's promise to invest in cutting-edge research which could lead to safer medicines and better treatments for a variety of conditions, including epilepsy.
Footballers and people with epilepsy team up to tackle internet trolls
Footballers are putting up a united front alongside people with epilepsy as they ask Prince William, president of the Football Association, for his support in tackling internet trolls.
Second thoughts about the vaccine?
We know from calls to our Helpline, and through conversation on our social media platforms, that some people are sharing concerns about having their second dose of the Covid-19 vaccine.
Online Safety Bill: "a step in the right direction"
The Epilepsy Society has welcomed the publication of a new Bill which aims to promote online safety, but we believe more needs to be done to protect people with epilepsy from internet trolling.
Roundtable Baby Shower backs Safe Mum, Safe Baby campaign
MPs, scientists and clinicians today backed Epilepsy Society’s call for the government to stop babies from being born with preventable disabilities, by investing more money into urgent research.
Making sure women are aware of the risks around valproate during pregnancy
Two new initiatives have been launched to help ensure that all women with epilepsy, of child-bearing age, are aware of the risks associated with the medication valproate, during pregnancy.
MPs call on government to back #SafeMumSafeBaby campaign
Last night, in the House of Commons, Emma Hardy MP called on the government to back the Epilepsy Society’s campaign for funding into vital research into safer epilepsy medications during pregnancy.
Seizures in vaccine leaflet relate to rare blood clots in brain
Callers to our Helpline have expressed concerns that the latest version of the patient information leaflet for the Covid-19 Astra Zeneca vaccine, mentions seizures as a possible side effect.
Law Commission recommends specific offence for malicious tweets sent to trigger seizures
We are thrilled to see that the Law Commission is calling on the government to introduce a specific offence to deal with flashing images posted on social media to trigger seizures in people with epilepsy.
Zach, 10, is short-listed for Unsung Hero Award
We are incredibly proud to announce that 10-year-old Zach Eagling – the figurehead of our Zach’s Law campaign – has been shortlisted as an Unsung Hero in the Third Sector Excellence Awards.
Record fines for drug companies who overcharged NHS for anti-epilepsy drug
Pfizer was fined a record £84.2m by the Competition and Markets Authority (CMA) for increasing the price of its phenytoin sodium capsules by between 2,300-2,600 per cent over night in 2012. The CMA also fined distributor Flynn Pharma £5.2 million after it accused the pair of "excessive and unfair" pricing for the vital medicine used by around 48,000 patients in the UK.
Epilepsy Society partners with Healthinote
Epilepsy Society is working in partnership with Healthinote - a digital platform for doctors, nurses and pharmacists to share personalised, trusted health information with patients.
Our researchers get on their bikes to support people with epilepsy
Twelve scientists from the Epilepsy Society and UCL are going the extra mile to raise money for a vital new piece of equipment that will help in the treatment of people with epilepsy.
Have your say on the Online Safety Bill
The Epilepsy Society is encouraging people affected by epilepsy to submit their views on online safety to an important parliamentary committee.
Transforming lives through advocacy, research and care
At the Epilepsy Society, our vision is for a world where people with epilepsy lead the lives they want to lead. This year, following a major survey of people affected by epilepsy, we have become clearer in describing that Vision and setting out how we intend to make it happen.
Zach Eagling - always a winner
Ten-year-old epilepsy campaigner, Zach Eagling, was honoured at a prestigious charity awards ceremony in central London in September 2021.
You may able to drive while the DVLA process your application
We have had a lot of calls to our helpline from people with epilepsy who meet the DVLA standards and may be able to drive, but are waiting for their application to the DVLA to be processed.
A summer of political engagement
One of the Epilepsy Society's three core pillars, alongside research and care, is advocacy – campaigning in support of the issues that matter most to people with epilepsy. This summer and early autumn, we have continued to campaign on a number of key issues.
Climate change and epilepsy - virtual conference
On 25 November 2021, EpiCC – Epilepsy Climate Change – held its first ever virtual conference ‘Epilepsy in change’ to address the links between climate change and epilepsy and how we might all take action.
A tribute to Sir David Amess MP
Following the tragic death of Sir David Amess MP, our Chief Executive, Clare Pelham, issued the following statement.
Getting your Covid-19 booster and the flu vaccine
The Covid-19 booster vaccine is now available on the NHS for those who are most at risk from the virus and have had two doses of the vaccination at least six months ago. This includes people with epilepsy.
How virtual epilepsy clinics could help save the planet
Did you know that seeing your doctor via a virtual clinic, rather than face-to-face, may be better for your health than you might have imagined? And, certainly better for the health of the planet.
Twitter promises to tackle internet trolls before Christmas
After more than 18 months of campaigning by the Epilepsy Society, a senior director at Twitter has given MPs his word that they will put a stop to flashing images that could pose a danger to people with photosensitive epilepsy on the social media platform.
Green is the new purple
We feel passionately that human health should be higher on the climate change agenda. So as world leaders gather in Glasgow for COP26, we are taking the bold decision to turn our much-loved purple branding green.
Climate change and epilepsy: MP calls for funding
The Epilepsy Society were delighted that our local MP, Sarah Green, chose to mention the effects of climate change on people with epilepsy in her first ever question to the Prime Minister.
#TheEnvironMentalIssue at COP26
During COP26, we launched EpiCC’s #TheEnvironMentalIssue, a living newspaper made from algae issued in partnership with The Herald (Scotland’s broadsheet newspaper). The issue was voted best campaign at the UN summit by PR Week UK.
Could better building design help to reduce seizures?
Scientists at the Epilepsy Society are already looking at how climate change is affecting people with severe epilepsy. But now they are also trying to find out how a fluctuation in temperature inside the charity's residential care homes could also impact seizures.
Hope of seizure freedom for those with drug-resistant epilepsy
A new study has raised hopes that people who live with long-term drug resistant epilepsy may still enjoy a period of seizure freedom in later life. And it has thrown a spotlight on the complex relationship between epilepsy and the ageing process, highlighting the need for more research.
Epilepsy Society needs you
Do you have experience of working in social care, or do you have lived experience of supporting someone with complex care needs? Maybe you have taken early retirement from care work or are thinking of a career supporting people with disabilities. If so, the Epilepsy Society would love to hear from you.
Can artificial intelligence stop the harsh reality of internet trolling?
Bristol-based innovation agency, Gravitywell, have developed technology to teach a piece of artificial intelligence (AI) how to detect and prevent the spread of flashing images on social media that could trigger seizures.
People with epilepsy included in new Covid-19 treatment study
Thousands of the UK’s most vulnerable people – including those with epilepsy - will be among the first in the world to to take part in a home study looking at potentially life-saving antiviral and antibody treatments if they test positive for Covid-19.
Zach's Law moves a step closer to protecting people with epilepsy online
In a landmark report, MPs and peers are urging the government to introduce a new offence – Zach’s Law – to protect people with epilepsy from malicious posts designed to cause seizures.
Why it’s a MaCCCy D for us
A big thanks to McDonalds for going the extra mile when a customer had a cluster of seizures in one of their branches. Not only did staff treat her with kindness and sensitivity, but the fast food chain also shared our ‘Calm, Cushion, Call’ messaging on their social media.
Why comedian Jake Lambert wants the world to laugh about his epilepsy
Comedian Jake Lambert is 32 and on a mission to get people talking – and laughing – about epilepsy, more specifically his own epilepsy. He uses his stand-up comedy gigs across the country to bring the house down while at the same time helping audiences to understand more about the condition. And it’s working.
Are you thinking about a new career for the New Year?
The Epilepsy Society has great job prospects for anyone who would like a career supporting people with disabilities
Vimpat – no shortage but some delivery issues
We are aware that some people have experienced difficulties in accessing the following epilepsy medication: Vimpat 50mg and Vimpat liquid. The pharmaceutical company UCB has assured us that there are no supply issues, though there have been delivery issues in some areas resulting in local shortages.
Epilim Chrono modified release - some local issues
We are aware that some people have experienced difficulties in accessing the following epilepsy medication: Epilim Chrono modified release 200mg.
Helping to shape the future of research
What matters most to you about epilepsy research? What are the outcomes that are most important to you? If you could sit down with a researcher, what would be the top three priorities that you would like to them to focus on in their epilepsy research?
MPs say draft online safety laws not "clear or robust"
MPs who have been supportive of Zach's Law argue that there is still more to do in tightening the draft online safety laws.
Zach’s Law not in first reading of Online Safety Bill but the campaign continues
The Epilepsy Society is disappointed that Zach’s Law was not included in the first reading of the Online Safety Bill in Parliament yesterday. However, we are hopeful that the new offence to protect people with epilepsy from internet trolls will be included at a later stage in the legislative process.
Why MP Sarah Green is changing her name to Sarah Purple
It could be something to do with her name, but MP Sarah Green has a propensity for changing the colour of the landscape.
Epilepsy Society shortlisted for top award
All of us at the Epilepsy Society are delighted to have been shortlisted for a prestigious campaigning award.
Adults with epilepsy in social care could be on wrong medication
Researchers at the Epilepsy Society fear that adults in social care with epilepsy and learning disabilities could be receiving the wrong medication or treatment due to a lack of diagnosis.
Minister promises trolls who target people with epilepsy could face prison
Today (Tuesday 19 April 2022), the Online Safety Bill will have its second reading in the House of Commons. This is a chance for MPs to debate this most important piece of legislation in the internet age. The Epilepsy Society is pleased to have the support of Minister Chris Philp in backing our Zach’s Law campaign to tackle internet trolls who target people with epilepsy in order to trigger seizures.
Pregabalin - new warnings of increased risks for unborn baby during pregnancy
Women with epilepsy who are taking pregabalin are warned that the medication could increase risk of physical harm for a baby during pregnancy and are advised to consult their doctor. It is important never to stop taking your medication without seeking medical advice first.
National Epilepsy Week 2022
National Epilepsy Week runs from 23-29 May and this year epilepsy charities in the UK are focusing on both the important role that families, friends, colleagues and healthcare professionals play in supporting people with epilepsy, and also on how the condition can impact them.
Zach's Law: our award winning campaign
Much to our delight - and surprise - last week saw the Epilepsy Society win two awards in just three days for our #ZachsLaw campaign.
Government commits to making Zach's Law a specific offence
It was a major win in parliament today for our Zach's Law campaign, when Minister Chris Philp gave his unequivocal commitment to introduce a stand-alone offence to tackle internet trolls who maliciously target people with epilepsy.
Beyoncé does it: seven seconds to stop a seizure
Thank you to Beyoncé and her team for responding so quickly to concerns raised about her new Break My Soul video, which contains flashing images.
Genomics
Read how we are working to understand the genetic architecture of each individual person's epilepsy through our world leading genomics research programme.
Fund groundbreaking research
subtitle: Support us
We aim to bring forward the day when epilepsy is not a hidden disability – no longer a stigma that is hidden in the shadows and misunderstood. Help shape the future of clinical provision for people with epilepsy. Join us in being part of this journey by giving your support.
Walk around our laboratory
subtitle: 360-degree experience
Take part in our immersive 360-degree experience which takes you on the journey of a genome through our wet laboratory. Our research team will explain what happens to a patient's genome at every stage through video and interactive elements.
Care services
We are the leading charity care provider, where people love to work and live. Our wide range of care is tailored to the needs of each individual, and our professional staff are committed to maximising the life potential of everyone within our care homes.
Donate to Epilepsy Society
In these challenging times, we rely on donations to ensure vital services for our beneficiaries can continue. If you can spare a donation or pledge a monthly gift, you can help fund research breakthroughs and provide vital support for everyone affected by epilepsy.
Pledge a regular gift
In these challenging times, charities rely on donations to ensure vital services for our beneficiaries can continue. If you can pledge a monthly gift, you will be helping to ensure we continue to support everyone affected by epilepsy. Thank you.
Croft Cottage
Croft Cottage provides a small homely environment for seven adults with complex epilepsy, associated impairments and learning disability.
Research
The ultimate goals of our current research are to spearhead personalised treatment and to incorporate genomic diagnosis into the NHS for people with epilepsy.
Research projects
subtitle: Genomics
Read how we are working to understand the genetic architecture of each individual person's epilepsy through our world leading genomics research programme.
Innovation
subtitle: Genomics
Find out about our innovative genomics clinic and our pioneering research that is changing the landscape of epilepsy.
Our researchers
subtitle: Meet the team
Meet the team at Epilepsy Society leading the way in global research. Our team are passionate about translating research findings to improve the lives of people with epilepsy.
Join our team
subtitle: Join us
Epilepsy Society’s Chalfont Centre is unique in bringing together intellectual capital to form a powerhouse multidisciplinary team who contribute to a wide ranging spectrum of research. It is only by working together that we will be able to translate the findings of our research into clinical medicine.
Neuroimaging
Neuroimaging enables us to look deep inside the brain to learn more about the impact of seizures on its structure and function.
Neuropathology
The Epilepsy Society Brain and Tissue Bank is the first of its kind in the UK. It is dedicated to the study of epilepsy through brain and other tissue samples.
Exploring genetic diagnosis for complex epilepsies
subtitle: Genomics
In this project we will undertake whole genome sequencing analysis of people with complex epilepsy. Our aim is to be able to give individuals participating in the programme an accurate diagnosis and provide the basis for developing individualised treatments.
Predicting and reducing the risks of avoidable deaths from epilepsy
subtitle: Genomics
Almost 1 in 100 people in the UK have epilepsy and they are 2-3 times more at risk of premature death and 20 times more at risk of sudden unexpected death compared to the general population. Our SUDEP project is undertaking whole genome sequencing on 100 DNA samples to try to identify genetic changes that may increase a person's susceptibility to SUDEP.
3D Stereophotogrammetry
subtitle: Genomics
We know that the shape of the human face is influenced by genetic factors. Now our researchers are using 3D imaging, or three-dimensional stereophotogrammetry, to try to establish whether there is a link between face shape and genetic variations which can lead to epilepsy.
Optical Coherence Tomography
subtitle: Genomics
Optical Coherence Tomography is one of the most advanced scanning tools used to measure the thickness of the retinal fibres at the back of the eye.
Transcranial Magnetic Stimulation (TMS)
subtitle: Genomics
Transcranial Magnetic Stimulation (TMS) is a non-invasive and painless technique, using a powerful magnetic field, similar to that used in an MRI scanner. This is used to stimulate a small region of the brain. For example, if we stimulate the brain region controlling movement, it will cause a measurable muscle twitch.
DOORS Syndrome Has Genetic Cause
subtitle: Genomics
We are using whole genome sequencing to help us understand the many causes of epilepsy. This builds on many years of studying epilepsy by investigating the exome, or protein-encoding part of our genes which accounts for 10 million letters. Read about our research to understand the genetic causes of DOORS syndrome using exome sequencing.
Genomics clinics
subtitle: Genomics
Dr Wendy Jones discusses Epilepsy Society's innovative genomics clinic and how it is helping guide families to understand the causes of epilepsy.
Developing a hub for genomics data analysis and clinical data interpretation
subtitle: Genomics
Bioinformatics uses computer programming to analyse or interpret the huge amount of data a sequenced genome produces. This will help us to understand the genetic architecture of the epilepsies and accelerate precision treatment for epilepsy.
Epilepsy Society, UCL and Congenica collaborate in genomic study to identify causes of SUDEP
Approximately 1 in 1,000 adults with epilepsy and 1 in 4,500 children with the condition lose their lives to Sudden Unexpected Death in Epilepsy (SUDEP) every year. Congenica, the global diagnostic decision support platform provider, is collaborating with Epilepsy Society's Chalfont Centre and UCL to study the genomics of SUDEP.
Professor Ley Sander
Ley Sander is Professor of Neurology, Head of the Department of Clinical and Experimental Epilepsy at UCL Queen Square Institute of Neurology, Consultant Neurologist at UCLH National Hospital for Neurology and Neurosurgery and Medical Director at Epilepsy Society.
Professor Sanjay M Sisodiya
Sanjay Sisodiya is Professor of Neurology at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery and Director of Genomics at Epilepsy Society.
Consultant Neurologist Dr Simona Balestrini
Dr Simona Balestrini is the Muir Maxwell Trust Research Fellow at Epilepsy Society and Honorary Clinical Associate Professor at UCL Queen Square Institute of Neurology.
Honoray Consultant in Clinical Genetics Dr Wendy Jones
Wendy Jones is Honorary Consultant Geneticist at the UCLH National Hospital for Neurology and Neurosugery and Chalfont Centre for Epilepsy. She reviews individuals and their families in the Epilepsy Genomics Clinic and carries out genetic counselling.
Doctor Fergus Rugg-Gunn
Dr Fergus Rugg-Gunn is a Consultant Neurologist at Epilepsy Society's Chalfont Centre and The UCLH National Hospital for Neurology and Neurosurgery.
Consultant Neurologist John Duncan
John Duncan is Professor of Neurology at UCL Queen Square Institute of Neurology, Consultant Neurologist at UCLH and Principal Investigator in Neuroimaging at Epilepsy Society’s Chalfont Centre.
Professor Matthias Koepp
Matthias Koepp is Professor of Neurology at UCL Queen Square Institute of Neurology, Consultant Neurologist at the UCLH National Hospital for Neurology and Neurosurgery, and Clinical Lead of the MRI-Unit at the Epilepsy Society.
Dr Helena Martins
In her current role as a Bioinformatician Helena is applying computational and statistical methods to analyse complex genomics data in order to understand the genetic architecture of different types of epilepsies.
Innovation
subtitle: Genomics
Find out about our innovative genomics clinic and our pioneering research that is changing the landscape of epilepsy.
Innovation
subtitle: Neuroimaging
Find out about our innovative Epilepsy Navigator software that enables even more sophisticated and accurate brain surgery for epilepsy.
Research areas and projects
subtitle: Neuroimaging
Read about current research areas and projects running under our world leading neuroimaging programme.
Functional MRI
In the last 20 years we have been using functional MRI (fMRI) at Epilepsy Society's Chalfont Centre to map where different functions such as language and vision occur in the brain.
Brain scans
In order for a person to be suitable for surgery, it is necessary to confirm that seizures are arising from one part of the brain and that it is safe to remove this part. This requires many tests including MRI brain scans.
Epilepsy Navigator
Epilepsy Navigator is an interactive 3D-neuronavigation system that enables the best operative approach for inserting electrodes into the brain in order to pinpoint the areas where seizures arise from. These plans are now being used to direct a robotic system for placing the electrodes through the skull and into the brain.
Innovation
subtitle: Genomics
Find out about our innovative genomics clinic and our pioneering research that is changing the landscape of epilepsy.
Steps
Our supported living service is available to adults with epilepsy who may also have other associated or additional complications. The service provides people with the opportunity to live with greater autonomy and independence in the community.
Greene House
Greene House is a care home for up to 14 adults. The staff provide personal and social care in person centered way.
Micholls House
Micholls House is all about individualised care and empowerment. Residents are encouraged to be involved in all decisions about their lives - what they choose to eat each day, what they wear, what activities they take part in, what trips they go on and whether they choose to use our on-site health services or their own.
Morton House
Morton House is a care home for up to 14 adults. The staff provide personal and social care based on individual choices and preferences.
Russell House
At Russell House we are dedicated to empowering residents and enabling them to do as much as they can, and make as many decisions for themselves, as possible.
Queen Elizabeth House
Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.
Our staff
Our care service team provides a person-centred approach, and the residents are at the centre of everything we do. One aspect of this is that we involve residents in the development and delivery of staff training.
Next steps
Our aim is to make the transition into a new home as smooth as possible for every individual.
Our approach
Our approach is to provide a service and environment that supports all those with epilepsy to live a better and more fulfilling life.
Service users' bill of rights
We are committed to creating an environment that is enabling, empowering, diverse and inclusive. People who use its services can expect volunteers and employees to respect their human rights.
Diverse care options
We offer care and support in residential and nursing settings. Each home provides a relaxed and friendly atmosphere, and residents are empowered to live as full a life as possible within a supportive environment.
Next steps
Our aim is to make the transition into a new home as smooth as possible for every individual.
What is epilepsy?
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
Epilepsy facts and myths
Did you know that the Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain? Find out more interesting facts and debunked myths around epilepsy and seizures.
Coming to terms with epilepsy
People can feel differently about their diagnosis; some people come to terms with it quickly, some take longer, and some feel that epilepsy will always be an ongoing issue for them.
Epilepsy terminology
There are a number of common misconceptions surrounding epilepsy and epilepsy terminology.
Learning disabilities
Information about seizures and treatment for people with epilepsy and learning disability.
Non-epileptic seizures and dissociative seizures
Non-epileptic seizures (NES) or dissociative seizures may look similar to epileptic seizures but they are not caused by abnormal electrical activity in the brain.This guide will help you understand what non-epileptic seizures are, what causes them, how they are diagnosed and how they can be treated.
Epilepsy auras
An 'aura' is the term that some people use to describe the warning they feel before they have a tonic clonic seizure. An epilepsy 'aura' is in fact a focal aware seizure.
Diagnosing epilepsy
If there is a possibility that you have epilepsy, NICE recommends that you are referred to a specialist, (a doctor who is trained in diagnosing and treating epilepsy) within two weeks. Your diagnosis is based on finding out what happened to you before, during and after your seizures.
Recording information about your seizures
If you have a seizure you may not remember what has happened. It can be helpful to have a description of what happened from someone who saw your seizure, to pass on to your GP or specialist.
Who will I see about my epilepsy?
If you have just been diagnosed with epilepsy, you may see different people to help you manage your epilepsy. This might include a neurologist, an epilepsy specialist nurse and your GP.
A diagnosis and its impact on mood
Any diagnosis can be a shock, even if you are expecting it. You may feel numb, angry, confused or frightened. Or you may feel relieved – what’s been happening to you has a name and a treatment. Everyone has their own way of reacting to a new situation.
Tests for epilepsy
Blood tests, an Electroencephalogram (EEG) and scans are used to gather information for a diagnosis. Tests on their own cannot confirm or rule out epilepsy.
MRI (Magnetic Resonance Imaging)
An MRI scan will not say for certain whether the person has epilepsy or not. But alongside other information, it might help the specialist to decide what the likely cause of the seizures is.
A closer look at EEG
Get a closer look at EEG including further information on brain waves, electrical signals and the 10-20 system.
Anti-seizure medication (ASM)
Anti-seizure medication (ASM), previously known as anti-epileptic drugs or AEDs, is the main type of treatment for most people with epilepsy, that aims to stop seizures from happening.
Epilepsy treatment
If you have just been diagnosed with epilepsy, you may have questions about medication and treatment.
A closer look at MRI
Get a closer look at MRI including further information on atoms, protons and spectroscopy.
Ketogenic diet
The ketogenic diet is one treatment option for children or adults with epilepsy whose seizures are not controlled with AEDs. The diet may help to reduce the number or severity of seizures and may have other positive effects.
Vagus Nerve Stimulation
Vagus nerve stimulation therapy is a treatment for epilepsy that involves a stimulator (or 'pulse generator') which is connected, inside the body, to the left vagus nerve in the neck. The stimulator sends regular, mild electrical stimulations through this nerve to help calm down the irregular electrical brain activity that leads to seizures.
Epilepsy surgery
Brain surgery or neurosurgery is one way of treating epilepsy. Certain criteria have to be met and tests have to be done to assess suitability.
Cannabis oil for epilepsy
With talk in the media about the use of cannabis products to treat epilepsy, generating interest and confusion, we outline the different forms of cannabis, their legality and their safety.
Making the most of your pharmacist
Pharmacists play a key role in helping to manage healthcare for people in the community. They are qualified to help you to use medicines safely, to help your medicines work as effectively as possible for you and to provide other services to help you stay well.
Your appointment or review
Medical appointments can be very important, but time is often limited, so it is useful to prepare beforehand. Here are some suggestions to help make the most of your appointment or review.
Medication
The aim of treatment is to stop all of your seizures with the lowest dose of the fewest number of ASMs and with the least side effects.
How anti-seizure medication works
For most people with epilepsy, the treatment for their seizures includes anti-seizure medication (ASM), previously known as anti-epileptic drugs or AEDs. But what do these drugs do?
List of anti-seizure medication
List of anti-seizure medication (ASM), previously known as anti-epileptic drugs or AEDs, with details including dosage and possible side-effects.
Side effects and interactions
As with all medications AEDs can cause side effects and possible side effects vary from one AED to another.
Generic and branded anti-epileptic drugs
Getting the same version of anti-epileptic drugs (AEDs) with each prescription may contribute to how well the drug works for that person.
Questions about anti-seizure medication (ASMs)
Our 'a closer look' series of information looks at some subjects in greater technical detail. Here we try to answer some of the more common questions about anti-seizure medication (ASMs).
Brexit contingency plans for epilepsy medication
In August 2018, the Government asked pharmaceutical companies to ensure they have a minimum six week stockpile of prescription-only and pharmacy-only medicines in case of potential delays at UK borders after Brexit on 29 March 2019.
Managing your treatment
Managing your treatment is an important part of managing your epilepsy, and seeing whether your medication is working. This might include having a care plan, including a treatment plan.
Sodium valproate
Sodium valproate is an epilepsy drug prescribed for all seizure types including absence, myoclonus and tonic clonic seizures. New regulations have been introduced by the Medicines and Healthcare products Regulatory Agency (MHRA) around the way in which the drug, sodium valproate is prescribed to women and girls of childbearing age.
Emergency medication
Information and training for people who are responsible for giving emergency medication to people with epilepsy.
New to epilepsy treatment
The decision whether to start taking anti-epileptic drugs (AEDs) can be difficult, and there is a lot to think about. Here we look at the benefits and risks of taking, or not taking, AEDs.
Coming off anti-seizure medication
If someone has not had a seizure for two or more years then they may think about withdrawing (coming off) their ASM.
Strategies and tools for taking medication
If you have difficulties with taking your medication the following strategies and tools might be helpful.
Monitoring epilepsy and medication
How doctors monitor epilepsy including therapeutic drug monitoring which checks the effectiveness of drugs taken by people with epilepsy.
Residential care and CQC reports
Our specialist residential care for adults with epilepsy is provided at our Chalfont Centre in Buckinghamshire. We provide residential care for approximately 90 adults, who in addition to their epilepsy, often have associated and additional complications, including physical and learning disabilities, brain injury and autism.
Reactions to a diagnosis
People can react differently to a diagnosis. You might feel lots of different emotions. It may not be possible to think and feel positively, or you may feel fine one minute, and upset or angry the next. It may be helpful to know that this is a common way to feel.
Concerns around Sodium valproate
Research has shown that sodium valproate can cause serious problems in a developing baby. Of babies whose mothers take sodium valproate during pregnancy, up to 1 in 10 (10%) are at risk of having a birth defect, and up to 4 in 10 children (up to 40%) have problems with development and learning as they grow.
Sodium valproate latest
The latest news around the Anti-Epileptic Drug Sodium valproate.
Are there risks to my baby?
Most women with epilepsy will have a normal pregnancy and labour and over a 9 in 10 (90%) chance of having a healthy baby. Women with epilepsy have a slightly higher chance of having a baby with a birth defect due to genetic conditions, injury during seizures and anti-epileptic drugs (AEDs). Talk to your neurologist about how you can reduce the risk to your unborn baby.
Giving birth and epilepsy
Information about the risk of seizures and pain relief available for women with epilepsy during childbirth.
Breastfeeding and epilepsy
Information for women with epilepsy about breastfeeding including concerns about passing medication to the baby.
Parenting and epilepsy
If your seizures (or your partner’s) are controlled, then epilepsy may not affect how you look after your child. However, parents who have seizures may find taking extra safety measures helpful. This depends on the type of seizures and the activity involved.
Pregnancy and epilepsy
Most women with epilepsy do not have any change in their seizure frequency during pregnancy. However you might find that your seizures are better controlled during pregnancy, or that you have more seizures than is usual for you.
Epileptic seizures
There are many different types of epileptic seizure. Any of us could potentially have a single epileptic seizure at some point in our lives. This is not the same as having epilepsy, which is a tendency to have seizures that start in the brain.
All about the brain
The brain is a highly complex organ and the centre of the nervous system. Here is more detail about the different areas of the brain.
All about neurones
Neurones are nerve cells carrying information. This page looks at neurones in greater technical detail - what neurones do, what they look like, and how they pass messages.
Seizure types
In March 2017 the International League Against Epilepsy (ILAE), a group of the world's leading epilepsy professionals, introduced a new method to group seizures. This gives doctors a more accurate way to describe a person's seizures, and helps them to prescribe the most appropriate treatments.
Absence seizures
Absence seizures are more common in children than adults and can happen very frequently. During an absence a person becomes unconscious for a short time. They may look blank and stare, or their eyelids might flutter. They will not respond to what is happening around them. If they are walking they may carry on walking but will not be aware of what they are doing.
Tonic and atonic seizures
In an atonic seizure (or 'drop attack') the person’s muscles suddenly relax and they become floppy. If they are standing they often fall, usually forwards, and may injure the front of their head or face. Like tonic seizures, atonic seizures tend to be brief and happen without warning. With both tonic and atonic seizures people usually recover quickly, apart from possible injuries.
Focal aware seizures
In focal aware seizures (FAS), previously called simple partial seizures, the person is conscious (aware and alert) and will usually know that something is happening and will remember the seizure afterwards.
Focal impaired awareness seizures
Focal impaired awareness seizures (FIAS) affect a bigger part of one hemisphere (side) of the brain than focal aware seizures. This seizure was previously called complex partial seizures.
Myoclonic seizures
Myoclonic means ‘muscle jerk’. Muscle jerks are not always due to epilepsy (for example, some people have them as they fall asleep). Myoclonic seizures are brief but can happen in clusters (many happening close together in time) and often happen shortly after waking.
Tonic clonic seizures
These are the seizures that most people think of as epilepsy. the person becomes unconscious their body goes stiff and if they are standing up they usually fall backwards. they jerk and shake as their muscles relax and tighten rhythmically.
Why do seizures happen?
Your brain controls the way you function. Inside your brain, millions of nerve cells (neurones) pass messages via electrical signals to each other. During a seizure these electrical signals are disrupted and this affects how you feel or what you do while the seizure is happening.
Seizure diaries
Keeping a seizure diary can be useful to help you record when your seizures happen and to see whether there are any specific triggers for your seizures. Sometimes, known triggers can be avoided to help reduce the number of seizures.
How epilepsy is diagnosed
Diagnosing epilepsy is not simple. Doctors gather lots of different information to assess the causes of seizures. If you have had two or more seizures that started in the brain you may be diagnosed with epilepsy.
Care and treatment: your rights and choices
Our document, Care and treatment: your rights and choices explains your rights and the services that you can expect as someone with epilepsy.
Early access to specialist diagnosis and care
Care and treatment: your rights and choices says: ‘After a suspected seizure, you should be seen by an epilepsy specialist within two weeks.’ This is recommended (and not a legal right) so that suspected epilepsy can be diagnosed and appropriate management can be considered without delay.
Referral to tertiary care
Care and treatment: your rights and choices says: ‘If your seizures are not controlled, or your diagnosis is not clear, you should be referred to tertiary care.’ This is so that you can be seen by someone with expertise in epilepsy, and have access to investigations to help you. This is a recommendation, not a legal right.
Appropriate treatment and consistent medication
Care and treatment: your rights and choices says: ‘You have a right to appropriate treatment options, and should have a consistent supply of medication.’ Your specialist should work out what is the best treatment for you, and you should have access to the drugs that they recommend.
NHS dental care and free prescriptions
Care and treatment: your rights and choices says: ‘You are entitled to NHS dental care and free prescriptions', for your anti-epileptic drugs and any other prescriptions you have.
Involvement in your own healthcare
Care and treatment: your rights and choices says: ‘You have a right to be involved in your healthcare and you should have enough information, and appropriate support, so that you can make informed decisions about your health and be an active participant in all decisions about your epilepsy treatment and management.’
Comprehensive care plan
Care and treatment: your rights and choices says: ‘You should have a comprehensive care plan agreed with your healthcare professionals, which should include both medical and lifestyle issues. You should also have an annual review of your epilepsy.’
Choice of care
Care and treatment: your rights and choices says: ‘You have a right to choose who provides your care.’ You can choose which hospital to go to, and can ask for a second opinion about your health condition or treatment.
Access to health records
Care and treatment: your rights and choices says: ‘You have a right to access your own health records.’ To help you understand more about your health, you can ask to see your health records.
Health and social care assessment
Care and treatment: your rights and choices says: "You are entitled to ask for a health and social care assessment". Unpaid carers are also entitled to their own assessment and people with epilepsy, and their carers, may be entitled to welfare benefits.
Freedom from discrimination
Care and treatment: your rights and choices says: ‘You have a right to be treated with dignity and respect and to not be discriminated against.’ People with epilepsy are protected under the Equality Act 2010, which makes discrimination unlawful. This includes discrimination on the basis of disability.
The right to complain
Care and treatment: your rights and choices says: ‘You have a right to complain about services or treatment.’ There are various procedures for doing this, and for taking your complaint further if it is not resolved.
Your responsibilities
Care and treatment: your rights and choices says: ‘You have responsibilities as well as rights.’ Along with your rights to services from the NHS, you have some responsibilities to the NHS too.
Privacy policy
This website privacy policy aims to help you to understand what information Epilepsy Society might collect and process about you. Epilepsy Society is committed to protecting and respecting your privacy.
The development of care and treatment: your rights and choices
Sources used to develop Care and treatment: your rights and choices.
Research papers
A lay summary of research recently published in open access journal by staff based at the Chalfont Centre for Epilepsy.
Functional MRI
In the last 10 years we have been using functional MRI (fMRI) at Epilepsy Society's Chalfont Centre to map where different functions such as language and vision occur in the brain. For example our research has enabled us to see exactly which part of the brain we use if we want to think of words, name objects or describe a picture. This ability to visualise the communication and thought networks in the brain is enabling us to protect these during surgery and assess how some medications may affect our speech and cognitive abilities.
How tissue samples help epilepsy research
Donating your brain and tissue for research will help make a huge difference to our understanding and treatment of epilepsy in the future. By donating your brain and tissue you could help change the lives of people with epilepsy.
Seizure triggers
Triggers are situations that can bring on a seizure in some people with epilepsy.
Sleep and epilepsy
Having a good night's sleep helps our brains to recover from the day's events, so that we can function well the next day. For some people with epilepsy a lack of sleep can make seizures more likely to happen, for others having seizures at night can make them feel tired during the day.
Alcohol, drugs and epilepsy
Whether to drink alcohol or take recreational drugs is a personal choice, but it is worth knowing the possible effects they could have on your epilepsy. Alcohol or recreational drugs can cause epilepsy in some people.
Music and epilepsy
Music is part of our everyday life and culture. For most people, listening to or playing music is a pleasurable experience. But for people with epilepsy, the relationship with music can be far more complex.
Photosensitive epilepsy
Around 1 in 100 people has epilepsy and of these people, around 3% have photosensitive epilepsy. This is when seizures are triggered by certain rates of flashing lights or contrasting light and dark patterns.
3D films and virtual reality
For most people seeing a film at the cinema is unlikely to trigger seizures. However, many films these days are released in 3D. Also Virtual Reality (VR) is a technology that is being used more and more in everyday life. So what are the risks for people with photosensitive epilepsy?
Benefits
If you have epilepsy you may be eligible to apply for benefits. This depends on what your epilepsy is like and how it affects you.
Tips for completing benefit forms
If you are applying for a benefit, you will need to complete a form about how your condition affects you. Whether or not you are eligible for the benefit, and the amount of money you could be awarded, will depend partly on the answers you give on these forms.
Benefit decisions and appeals
Whether someone with epilepsy can claim benefits will depend on their situation. Some benefits such as Personal Independence Payment (PIP) are for people with a long-term disability or health condition, who need help or support with daily living, or with mobility, or both.
Universal credit
Universal Credit is now available to all new claimants (unless they get, or are entitled to get, Severe Disability Premium). It is a benefit for working-age people (usually 16 to 64 years) who are on a low income, or who are looking for work and will replace some existing benefits, listed below.
Employment and Support Allowance (ESA)
Employment and Support Allowance (ESA) is a UK benefit for people of working age, who cannot work or who have 'limited capability to work' due to illness or disability, and who are not entitled to Income Support, Jobseekers Allowance or getting Statutory Sick Pay, or Statutory Maternity Pay.
Personal Independence Payment (PIP)
PIP is a UK benefit for people over the age of 16, to help with any additional costs due to having a long-term disability or health condition.
How to apply for PIP
Personal Independence Payment (PIP) is a UK benefit for people over the age of 16, to help with any additional costs due to having a long-term disability or health condition. This information is designed to help you with the first stage of applying for PIP - making a claim.
How PIP is assessed
An important part of assessing your ability to carry out each activity is assessing whether you are able to do the activity ‘reliably’. Here, ‘reliably’ means that all of the following points apply.
How to fill in your PIP form
It is important that you fill in your form promptly and try not to put it off, even if it looks difficult. There is a short time frame for filling in and returning your form (usually one month), and this should be explained in the information you get from the DWP, which will include the deadline for returning the form.
How activities are described and assessed
Whether or not you qualify for PIP depends on how your condition affects you in two ways: your 'daily living' and your 'mobility' (how you physically move).
Daily living and mobility activities
Information about the daily living and mobility activities that form part of your PIP assessment criteria.
Preparing food
This activity is about whether you can prepare and cook a simple, hot, one-course meal from fresh ingredients (not ready meals). It is not about how good you are as a cook, but about whether your medical condition(s) affects your ability to prepare a simple, hot meal.
Eating and drinking
This activity is about physically feeding yourself, eating and drinking, and whether you are able to do this unaided, or with help. It does not include preparing food (covered in activity 1). Nutrition means food and drink.
Managing therapy or monitoring a health condition
This activity is about taking medication, or managing any treatment, at home. It is also about your ability to notice any changes in your health, and know what to do about it.
Washing and bathing
This activity is about your ability to keep your body clean, including washing your whole body and getting in and out of a non-adapted bath or shower.
Dressing and undressing
This activity is about your ability to dress and undress, including choosing, and putting on appropriate and non-adapted clothing that is suitable for the situation, including socks and shoes. This may include dealing with fastenings such as zips or buttons.
Managing toilet needs or incontinence
This activity is about your ability to get on and off the toilet, to clean afterwards and to manage emptying your bladder and/or bowel, including the use of collecting devices. This activity does not include the ability to manage clothing, for example fastening and unfastening zips or buttons, as this is covered in activity 6.
Communicating verbally
This activity is about speaking and being understood, and about listening and understanding. It means speaking and listening in your native language, which may not be English. It includes sign language and text relay, but not Braille.
Reading and understanding signs, symbols and words
This activity is about understanding written or printed information, including signs and symbols, in your native language (which may not be English).
Engaging with other people face-to-face
This activity is about how you get on with other people (people you know and people you don't know). It includes behaving appropriately with other people and understanding how they behave towards you, including whether severe anxiety or stress stops you from doing this. It includes understanding body language and establishing relationships.
Making budgeting decisions
This activity is about your ability to make everyday decisions about spending and managing your money.
Planning and following journeys
This activity is about planning (working out) and following a journey, including using public transport, and whether severe anxiety or distress stops you from being able to go out. It is not about your physical mobility (covered in the mobility activity 'PIP - moving around').
Moving around
This activity is about being able to physically move around, focusing on being able to stand up and walk unaided, without severe discomfort such as breathlessness, pain or fatigue.
Medical services
The Chalfont Centre and our Gowers unit lead the way in the most advanced techniques for the diagnosis and treatment of epilepsy.
About the centre
Contact details for the inpatients and outpatients department, travel information and how to find us.
Neurophysiology and neuropsychology
Our team of consultant neurophysiologists and skilled technicians carry out detailed tests to help with the diagnosis and classification of seizures.
Therapeutic Drug Monitoring (TDM)
Therapeutic drug monitoring (TDM) is an area of clinical chemistry that specialises in measuring medication levels (concentrations) in patients, usually through blood samples but also through saliva samples.
Day case admissions
You may be asked to come to the Sir William Gowers Centre as a day case admission. You will not be required to stay overnight so will not need to bring an overnight bag with you. However, you should bring your medication and continue to take it as normal.
Getting a referral
NHS referrals can be made by consultant letter or through the GP e-referral system.
Inpatients
While at the Sir William Gowers Centre we will do everything we can to make you comfortable. The following information will help you to prepare for your visit. If you have any questions about your stay, please contact us on 01494 601 480.
Outpatients
The following information will help you to prepare for your outpatient appointment at the Sir William Gowers Centre. If you have any questions about your appointment, please contact us on 01494 601435.
Monitoring drug concentrations
In patients in whom toxic symptoms are suspected, serum AED concentrations can aid in confirming a diagnosis of AED toxicity, though clinicians should be aware that relatively low concentrations do not necessarily exclude such a diagnosis.
Sample type
The matrix of choice is serum or plasma, and although they can be used inter-changeably it is preferable to use one or the other. In most clinical settings the measurement of total serum concentrations will suffice and indeed most routine methods for measuring AEDs in sera do not discriminate between the component of drug that is free (unbound) and that that is bound to serum proteins.
Using the TDM service
The assay service is routinely available Monday to Friday, 9am-5pm. For urgent assay requests, please contact the unit in advance. The unit will report on non urgent assay requests within 3 working days of receiving the sample in the laboratory, excluding weekends or bank holidays.
Contact our Therapeutic Drug Monitoring Unit
Our TDM unit provides a specialist AED TDM service for in-patients and out-patients attending the National Hospital for Neurology and Neurosurgery (Queen Square), University College Hospitals NHS Trust and Epilepsy Society. You can find a selection of contacts for the TDM unit here.
Visitors, weekend leave and practicalities
Information regarding visitors, weekend leave and practicalities.
First aid for epileptic seizures
A selection of first aid information for seizures including how to put someone into the recovery position and what to do if someone is in 'status'.
First aid for all seizures
How you can best help someone during a seizure depends on what type of seizure they have and how it affects them. On this page you'll find information on what the different types of seizures are and how to treat them.
Are you #seizuresavvy?
Our #seizuresavvy campaign focuses on tonic clonic seizures as these are the type of seizure that are most easily recognised. The charity’s new campaign gives people three simple but key instructions to remember in an emergency: “Calm, Cushion, Call.”
The recovery position
Our step-by-step guide to the recovery position shows you how to help someone recover after a tonic clonic seizure. These steps should be followed once the shaking has stopped.
Dental injuries
Although most people do not hurt themselves during a seizure, sometimes seizures can cause injuries.
First Aid quick guide
Although seizures can be frightening to see, they are not usually a medical emergency. Usually, once the seizure stops, the person recovers and their breathing goes back to normal.
Calling 999 from a smartphone
If you need to make a call to the emergency services (999 in the UK) on an Android or iPhone device, there are ways to automatically send your GPS location to the emergency services at the same time.
What do I need to know about someone's epilepsy?
You may be able to help someone with epilepsy if you know about their seizures. Here are some questions to help you.
Status epilepticus
A person's seizures usually last the same length of time each time they happen and stop by themselves. However, sometimes seizures do not stop or one seizure follows another without the person recovering in between. If this goes on for 5 minutes or more it is called status epilepticus or ‘status’.
What to record about a seizure
Everyone is individual and people react in different ways to their seizures and in how they recover. Some people cannot remember what happened to them during a seizure, some like to be talked to during their seizures and as they recover, and some need to sleep afterwards.
Campaigns
Our campaigns team lobby government and decision-makers on the issues that matter to people with epilepsy. From safer medicines for pregnant women to the dangers of online harm, and from medicines supply to public transport access, we raise awareness of the daily challenges facing people with epilepsy.
Supporting pregnant women
We have worked alongside other charities to raise awareness of the risks associated with pregnant women taking sodium valproate and have campaigned in support of the recommendations made in First Do No Harm.
Campaigning on medicines supply
Epilepsy Society called on the Health Secretary to commission an urgent review of the medicines supply chain.
Me and my shadow scheme
We launched our 'Me and My Shadow' scheme on International Women's Day. Our Me and My Shadow scheme provides opportunities for women with epilepsy to shadow women in a range of different careers for a day. It aims to build confidence and ambition in women with epilepsy and encourages them to think big.
Helping people use TFL
Epilepsy featured as part of Transport For London's poster campaign to raise awareness of the priority card scheme encouraging travellers to give up their seat for those with invisible disabilities.
Everyone knows someone
Our 'Everyone Knows Someone' campaign was a yearly joint campaign between Young Epilepsy and Epilepsy Society in association with River Island, to raise awareness of epilepsy during national epilepsy week. Meet the faces of our 'Everyone Knows Someone' campaign below.
Wellbeing
Having epilepsy can have a huge impact on a person's wellbeing including their mood, sleep and relationships.
Anxiety
Everyone feels anxious at times. When you are frightened or feel threatened, your heart beats faster, your muscles tense and your body prepares you to ‘fight’ the threat, or to run away from it – ‘flight’.
Depression
We all feel low and depressed sometimes, without it being a medical problem. Depression becomes a problem when the unhappy feelings don’t go away and it affects our daily life: eating, sleeping or being able to get out of bed.
Links between epilepsy and mood
For some people, their epilepsy and mood problems are not connected, they just happen to have both conditions. However, potential links are to do with how epilepsy affects your life as well as with your brain, your genes and your family history.
Having an electroencephalograph (EEG) at our EEG Telemetry Unit
The following information should tell you everything you need to know about having an EEG at our EEG Telemetry Unit.
Memory
Memory can be one of the key issues that affects people with epilepsy. This can be for many reasons, including the type of seizures they have, the effects of medication, the effects of epilepsy on concentration or mood, lack of sleep, age, or the effects of epilepsy surgery.
Diet and nutrition
A balanced diet from different food groups helps the body and brain to function, helping us to stay healthy. This may help reduce the risk of seizures for some people with epilepsy.
Exercise and epilepsy
How exercise can help your overall health and wellbeing, and how this may also help your epilepsy.
Complementary therapies
How complementary therapies can help to promote your wellbeing and underlying health as well as reduce your stress levels.
Finding support
Epilepsy and seizures can affect people in different ways. Support can mean finding understanding, ways to cope, or to feel more in control about living with epilepsy. Here are various ways that you can find support if you need it.
Relationships and sex
Many people with epilepsy have fulfilling relationships with a partner. However, epilepsy may affect relationships for some people, and problems with sex are common for both men and women with epilepsy. There are various ways to manage these problems and find support.
How epilepsy can affect memory
It is not unusual for people who have epilepsy to have memory problems. Problems may happen for any or all of the following reasons.
Memory aids, reminders and brain training
Anyone can have difficulty remembering information. Keeping your brain alert and active is a good thing but, on its own, may not necessarily improve memory.
Memory apps
Here's a selection of apps which you may find useful for helping to manage your epilepsy and other related issues.
Looking after yourself
Information for people with epilepsy on complementary therapies, diet, exercise and support networks.
Alarms and safety aids
Some people with epilepsy find it helpful to consider safety aids or equipment that might help them with day-to-day life. For example, an alarm, or monitor, that can alert family or friends when someone has a seizure.
Safety and risk templates
Our templates make suggestions about what the risks may be because of someone’s seizures, risks associated with living conditions (around the home), and risks associated with outdoor activities.
Keeping safe at home
If your seizures are controlled by treatment, your safety may not be affected. But if you continue to have seizures, safety may be an issue. Some safety issues may not be relevant to you or you may have your own ideas about what would make situations safer for you. Here are some suggestions to help you think about your safety at home.
ID cards and medical jewellery
Some people with epilepsy choose to wear or carry with them a medical identity (ID) card or medical jewellery that says they have epilepsy.
Safety and risk
Risks due to epilepsy depend on what someone's epilepsy is like. Getting good seizure control and staying safe are ways to help reduce risks.
How memory works
Throughout our lives, memories are being made, stored and found by our brain. Links made between our brain cells help us to remember the thoughts, skills, experiences and knowledge that make each of us unique. Memory can be one of the key issues that affects people with epilepsy.
Having an electroencephalograph (EEG) at our EEG Telemetry Unit
The following information should tell you everything you need to know about having an EEG at our EEG Telemetry Unit.
Information for professionals
This area of the site is aimed at people with a professional interest in epilepsy including GPs, Nurses, pharmacists, commissioners and doctors.
Epilepsy for pharmacists
Guide for pharmacists working in registered pharmacy premises in the UK, co-produced by Epilepsy Society and Medway School of Pharmacy. Includes information about treatment, seizure types, points to cover with patients taking anti-seizure medication (ASM).
Epilepsy information for GPs
The following information is designed to help GPs in delivering healthcare to people with epilepsy.
Training courses on epilepsy
Our courses are available to a wide range of people looking to develop their understanding of epilepsy for professional or personal reasons. Delegates include carers, school escorts, post-graduate students as well as commercial organisations, GP surgeries and drug company representatives.
Recommended Information
Here we have compiled a list of top resources, particularly relevant to healthcare professionals, which you may find useful when delivering care or treatment to adults with epilepsy.
What help is available?
You are entitled to free prescriptions for your epilepsy medications. You may be able to get financial help towards the cost of travel to medical appointments and to work.
General reading list
Many of these books are available to buy from Amazon. To buy from Amazon simply click on the links below. By using these links, you will automatically donate about 5% of the price of the book to Epilepsy Society, at no cost to you.
Epilepsy helpline
Epilepsy Society's confidential helpline is available for anyone affected by epilepsy. We welcome calls from people with epilepsy, their families and friends, as well as professionals such as doctors, nurses, care workers, teachers and employers.
DVDs
Please find a selection of DVDs for people affected by epilepsy.
Connecting with others
Many people who contact us say that having someone to talk to, who has epilepsy or knows about epilepsy, can be really helpful and reassuring. It can be an important part of coming to terms with a diagnosis of epilepsy.
Professionals reading list
A selection of reading around epilepsy for professionals including doctors, GPs and researchers.
Course booking terms and conditions
Terms and conditions for Epilepsy Society training courses. These terms and conditions apply to those who purchase Epilepsy Society's training services.
Epilepsy awareness, seizure management and emergency medication
6-hour course giving delegates an understanding of epilepsy and how to administer emergency medication.
Our work
Epilepsy Society is the UK’s leading provider of epilepsy services. Through our cutting edge research, awareness campaigns, information resources and expert care, we work for everyone affected by epilepsy in the UK.
Other support
Taking care of your overall wellbeing is a vital part of living with epilepsy. For some people, having information or support can help.
Living with epilepsy
Having seizures, or being told “you have epilepsy”, can affect people in different ways. This includes driving, sleep, work and travel.
Driving
If you drive, one immediate effect of having a seizure is that you have to stop driving. This is true for all types of seizures, and whether you have a diagnosis of epilepsy or not. For many people, this can have a big impact on their life and it may be very difficult or upsetting.
Work and employment
Having epilepsy does not necessarily stop someone from doing the job they want, but there are some issues which can affect them at work. Whether someone’s epilepsy affects their work depends on whether they have seizures, what their seizures are like and how often these happen.
Living with a long-term condition
Epilepsy is a very individual condition: some people will have it all their life, but for others they might have it just for a period of their life and their epilepsy might 'go away'. So for some, epilepsy is a long-term condition.
Exercise and sport
To live full and active lives, and look after our physical and emotional wellbeing, we all need time to rest, relax and exercise. How we spend our leisure time is important and individual to us all, whether or not we have epilepsy.
Women and epilepsy
Some issues around epilepsy and its treatment are specific to women and do not apply in the same way to men. These include links between epilepsy and hormones, puberty, contraception, pregnancy and the menopause.
Young people and epilepsy
Information for young people about epilepsy including how it may affect your life, education, relationships, driving or worklife.
University and epilepsy
If you're considering going to university or if you’ve definitely decided that’s what you want to do, you’ll need to think about what this will mean for you in practical terms and about what support you might need, including financial support. Being well prepared will help you to make the most of your time at university.
Older people and epilepsy
There are many possible causes for developing epilepsy in later life. An important part of investigating epilepsy involves checking for other conditions that may look like epileptic seizures.
What the driving regulations mean for you
This guide is for people who have epilepsy and covers Group 1 (cars and motorbikes) and Group 2 (buses, coaches and lorries) licences.
Car insurance
If you stop driving due to a seizure, you need to tell your insurance company as part of your insurance terms and conditions. If you don't tell them, this could invalidate your insurance and may affect your insurance in the future.
Driving regulations
When you can drive depends on the type of seizures you have now, the type of seizures you have had previously, and what type of licence you have.
Health and safety law
The Health and Safety at Work Act 1974 says that employers are responsible for making sure that all their employees are safe at work and are protected from possible dangers to their health.
Equality law and disability discrimination
The Equality Act 2010 came into effect in October 2010. It replaced nine previous laws that aimed to protect people against discrimination, including the Disability Discrimination Act 1995 (DDA).
Help with work and training
You can look for a job through your local Jobcentre Plus office, personal contacts, newspapers and websites adverts or employment agencies.
Jobcentre Plus offices have Disability Employment Advisers (DEAs) who provide support to people with disabilities. They may be able to help with assessments, referral to schemes for people with disabilities (such as Work Choice), job matching and information on employers who are positive about employing people with disabilities.
What jobs can I do?
Employers cannot legally refuse to give you a job just because you have epilepsy. However, they need to consider your epilepsy, and what the job involves, to ensure your safety and that of other employees.
Telling your employer about your epilepsy
Some people worry that telling an employer about their epilepsy might affect their chance of getting a job or being treated fairly at work. Although discrimination can happen, the Equality Act 2010 aims to protect you from discrimination, and help your employer to treat you fairly and support you at work. Having the right information about your epilepsy can help employers to do this.
Information for employers
When employing someone with epilepsy, it is important to consider their individual situation, and base any decisions on fact. This means looking at their epilepsy and the effect it might have on their work. Talking to them about what their epilepsy is really like, and how it might affect their work, is more helpful than making assumptions about how it affects them.
Sport and physical activities
How to play sports and do other outdoor physical leisure activities with epilepsy.
Swimming and water sports
Many water sports can be made safer for people with epilepsy, by taking the right safety measures. This means considering what risk the activity involves as well as how your epilepsy affects you.
Help with travel costs
Details of travel support schemes for people with epilepsy across the UK.
Travel and holidays
Having epilepsy should not usually prevent people from travelling. Planning ahead can help you stay well and make the most of your trip. Here are some ideas to consider if you are planning to travel.
Introduction to epilepsy
An introduction to epilepsy and treatment for young people.
Sex, drugs and social life
It's not unusual for people to worry about their sex life, whether they have epilepsy or not. Getting close to someone else can be great but it can also leave you feeling vulnerable.
Sports and spare time
Going out and having fun is important to us all – so does epilepsy have to get in the way? Epilepsy is a very individual condition; how it affects you can be quite different from how it affects someone else.
School, college or university
If you are at school, college or university and you have epilepsy, a law called the Equality Act 2010 aims to make sure you are treated fairly by everyone involved in your education. This includes lessons, trips out, practical subjects and exams.
Driving and getting about
Getting around and being independent is an important part of growing up. Find out about epilepsy and driving, transport and travelling.
Getting work
Answering young people’s questions about work, employment and epilepsy.
Travel and holidays
Having epilepsy does not usually prevent people from being able to travel by air. However, some people’s seizures are triggered by being very tired (which could happen because of long journeys or ‘jet lag’).
Practicalities of going to university
So, you’ve decided you’re going to university, and selected your course. What next? Planning ahead for the practical things will help to make going to university as straightforward as possible.
Deciding to go to university
Thinking about applying to university? Information to help you decide whether university is a practical option and guidance about the support that universities offer.
How epilepsy can affect learning and the university experience
There are lots of things you could think about doing to reduce any impact epilepsy may have on your learning and university life. You might have lots of ideas of your own about what is best for you or it may be worth speaking to your university's disability advisor to see what help they can offer.
Social issues, lifestyle, and epilepsy
University can be an exciting time offering many opportunities both socially and academically and it is a time when you can build your independence. Whatever your hopes and expectations, making epilepsy just a part of your life may help you to get the most out of your experience at university.
Feelings and emotional issues
Let’s be honest, you probably didn’t plan on your university suitcase having ‘epilepsy’ in it. Having epilepsy is more than just having seizures. It can affect every part of your life and every aspect of you: physical, mental and emotional.
Hormones, puberty and menstruation
Changes in hormone levels means that epilepsy treatment may need to change through a woman’s life. In this section, when we refer to women, this also includes girls of childbearing age.
Contraception and epilepsy
Some methods of contraception may be less effective in preventing pregnancy for women taking certain anti-epileptic drugs (AEDs). This is because some AEDs (enzyme-inducing AEDs) affect how well methods of contraception work. Non-enzyme-inducing AEDs are unlikely to affect contraception.
Menopause and epilepsy
Taking hormone replacement therapy (HRT) may increase the risk of seizures for some women with epilepsy.
Osteoporosis and epilepsy
Epilepsy and taking anti-epileptic drugs may contribute to the risk of developing osteoporosis for some people.
Therapies and activities
We help every resident enjoy life to the full. We recognise that everyone is different and we tailor activities to meet each individual’s needs and interests.
Social activities
We offer a wide range of activities for residents both on and off site and encourage everyone to take part in community activities and outings.
Shadow puppetry
This allows service users to act out real or imaginary scenarios, using the body to express feelings and emotions through silhouette and shadow imagery.
Types of therapy
We have a team of clinical specialist therapists, all experienced in neurodisability and learning disability with specialist knowledge of epilepsy and its impact.
Art therapy and seizures
Art therapy allows people to explore their emotions and feelings through the process of creating, painting or drawing. This service is run by a qualified art therapist who offers individual and group sessions and forms secure relationships with the participants.
Art therapy courses
Our art therapy courses are run by a qualified art therapist who offers individual and group sessions and forms secure relationships with the participants.
Arts and crafts
We give users the chance to use conventional art materials to express their own personal creativity. This includes using a self-drying clay in many sessions for sculpting and relief work.
Benefits of art therapy
Art Therapy can provide a dynamic way to make sense of what is personally felt and perceived about controllability of the illness and about the adaption process.
Impact report, annual reports and accounts
In this section you'll find information on our impact over this year and be able to download the most recent copy of our annual report and accounts.
Information for parents
Information for parents of children with epilepsy or a childhood epilepsy syndrome.
Epilepsy in childhood
Information about the diagnosis and treatment of childhood epilepsy and how epilepsy may affect a child’s life.
Childhood epilepsy syndromes
How childhood epilepsy syndromes are diagnosed, details of some specific syndromes and sources of further support.
School, education and epilepsy
A guide for parents on managing seizures at school and special educational needs or disabilities (SEND).
Epilepsy in adolescence
Sources of help and support for your teenage child with epilepsy.
Teaching children with epilepsy
Information to help teachers who have a child with epilepsy in their class.
Caring for someone with epilepsy
If you look after someone with epilepsy, you may be their 'carer'.
Women and epilepsy
Some issues around epilepsy and its treatment are specific to women and do not apply in the same way to men. These include links between epilepsy and hormones, puberty, contraception, pregnancy and the menopause.
Support for carers
If you are a carer of someone with epilepsy, we offer help and support for you.
The carers strategy
The Department of Health's Carers Strategy sets out the coalition government's vision for supporting carers.
Carers organisations
Guide to organisations offering support to carers.
Fundraising
By supporting our cause you can help us make a difference to the lives of 600,000 people living with epilepsy in the UK.
Fundraising events
Support our cause in your own way and help us make a difference to the lives of almost half a million people living with epilepsy in the UK.
Fundraising groups
Our fundraising groups raise vital funds for people living with epilepsy. By setting up your own group you will be given the opportunity to fundraise in aid of Epilepsy Society.
Pay in your fundraising
Once you’ve completed your fundraising event or activity, the next step is donate the funds you have raised so that they can start to change lives.
Fundraising resources
Since there is no set way to fundraise, you can fundraise in a way that inspires you! Whether you choose to fundraise at home, in your local community or at your school or workplace – we’ll provide all the support you need.
Fundraising at home
Fundraise from your home and support our work, by joining us and thousands of others in taking on the 2.6 Challenge. Every pound that you donate and raise will ensure that our committed staff team can continue to offer vital support to people affected by epilepsy.
Corporate giving
We know that the workplace can be a real force for good. Charity partnerships can help motivate staff and give you something special to tell your customers and shareholders. We can help your employees get involved in our work.
Payroll giving
Payroll giving is one of the best ways to donate to us. It gives us a reliable source of income to help us realise our vision of full life for everyone affected by epilepsy.
Giving land or buildings
Among the different ways in which people can support Epilepsy Society, a very small number may wish to give a gift of land or buildings. Although this type of gift is rare, it can be very significant in value.
Share giving
Did you know you can donate shares and investments to Epilepsy Society? By giving shares you can help us support the nearly half a million people with epilepsy in the UK and possibly earn yourself a double tax benefit at the same time.
More ways to give
Shop or click online to support our work. These donation methods won’t cost you a penny!
Purple day, 26 March
The 26th March is Purple day, a time to get people talking about epilepsy, raise awareness of the condition and raise vital funds.
What is Purple day?
The 26th March is Purple day, a time to get people talking about epilepsy, raise awareness of the condition and raise vital funds.
Benefits of starting your own fundraising group
You will be supported by our Community Fundraising team throughout your fundraising group journey.
Corporate giving
We know that the workplace can be a real force for good. Charity partnerships can help motivate staff and give you something special to tell your customers and shareholders. We can help your employees get involved in our work.
The Amelia Roberts fund
Amelia was the kindest, funniest, most thoughtful, mischievous, gentle and beautiful girl. She was full of vim and vigour. She was plucky, determined and feared little.
SOS (Sick Of Seizures)
"When I was first diagnosed at the age of nine, I had no idea what epilepsy was, is or how it would affect the rest of my life."
William's Warriors
When William was 10 months old, he had his first seizure. I was in the kitchen when my brother screamed for me. “He’s not breathing, I don’t know what happened!” I heard him yell. I ran in and grabbed him, held him in my arms on his side and waited for the paramedics to arrive. Twelve minutes. Twelve minutes and they were on our door with oxygen on him.
Create your own group
Create a dedicated fund in memory of a loved one, set up by a person living with epilepsy or by someone inspired by someone lived with epilepsy. All the money raised by our Fundraising Groups goes towards our charitable objectives.
Make a Will
If you don't yet have a Will, this advice can help you in the process of making one. If you already have a Will, you can find out how to update it to include a gift to Epilepsy Society.
Andrew's story
Andrew Redhead was born in 1943 but in spite of having epilepsy as a child, he wasn't properly diagnosed until the age of 17.
Make a difference
Legacy gifts amount to more than a third of our voluntary income. This enables us to keep our helpline open to support people with epilepsy and helps fund our research.
Corporate giving
We know that the workplace can be a real force for good. Charity partnerships can help motivate staff and give you something special to tell your customers and shareholders. We can help your employees get involved in our work.
How to pay in your funds
Thank you for taking part in Purple day! Donate below to pay in your Purple day funds.
Gifts in wills
A 1% gift helps us drive progress, enable support, increase impact and invest in the future.
Make a Will
If you don't yet have a Will, this advice can help you in the process of making one. If you already have a Will, you can find out how to update it to include a gift to Epilepsy Society.
Corporate partners
We work with our corporate partners to deliver sustainable partnerships, that have genuine impact whilst meeting business and CSR objectives. Together we will build an innovative, long-term and engaging partnership that makes a real difference. Our aim is for your partnership to be both rewarding and fun for your employees.
Volunteer
There are so many ways to volunteer and make a difference to the lives of people affected by epilepsy. Whether you'd like to volunteer at our Chalfont Centre, or in your local community, we'd love to hear from you.
Volunteering at Chalfont
The volunteers at Epilepsy Society make an invaluable difference to the lives of the 92 residents who live on site, all of whom have epilepsy often as part of more complex needs.
Help raise public awareness
Talking to the media about epilepsy is a valuable way of helping to increase public awareness. Would you be willing to talk to the press about your experiences of epilepsy? You can help us raise awareness by volunteering as a media contact and sharing your story.
Andrew's story
Andrew Redhead was born in 1943 but in spite of having epilepsy as a child, he wasn't properly diagnosed until the age of 17.
Help raise public awareness
Talking to the media about epilepsy is a valuable way of helping to increase public awareness. Would you be willing to talk to the press about your experiences of epilepsy? You can help us raise awareness by volunteering as a media contact and sharing your story.
Become a member
From as little as £15 per year, we have a range of membership schemes for people affected by epilepsy, their family, friends and carers.
Artists and epilepsy
Many people with epilepsy say that the freedom of art helps them to express their experiences of seizures. For many the paintbrush is a powerful communication tool for experiences that are hard to explain in words.
Help raise public awareness
Talking to the media about epilepsy is a valuable way of helping to increase public awareness. Would you be willing to talk to the press about your experiences of epilepsy? You can help us raise awareness by volunteering as a media contact and sharing your story.
Website terms and conditions
Information on how you may use epilepsysociety.org.uk and other Epilepsy Society online services.
Anti-slavery and human trafficking policy
Modern slavery is a crime and a violation of fundamental human rights: all forms of modern slavery including human trafficking have in common the deprivation of a person's liberty by another in order to exploit them for personal or commercial gain.
our gender pay gap
From 6 April 2017, any employer in the UK with more than 250 employees is required by law to publish their gender pay gap annually, covering both pay and bonuses. We are committed to equality and inclusion, and we welcome the Government's requirements.
Epilepsy review magazine
Epilepsy Review is our magazine for everyone affected by epilepsy. Articles cover developments in medical treatments and research, advice on how to stay well, topical articles about epilepsy, employment, the law, politics, culture, campaigns and humour from the epilepsy world. It is published twice a year and written by epilepsy specialists.
Discretionary housing payments
Discretionary housing payments may be available to some people on housing benefit, or the housing costs element of universal credit.
EEG (Electroencephalogram)
An Electroencephalogram (EEG) records the electrical activity of the brain by picking up the electrical signals from the brain cells. These signals are picked up by electrodes attached to the head and are recorded on paper or on a computer. The recording shows how the brain is working.
Epilepsy Care Pathway
A clear care pathway to show you what to do from the first seizure to referrals and reviews.
Yellow Card Scheme
This guide explains how to report side effects of anti-epileptic drugs through the Yellow Card Scheme. It covers what information to include when reporting side effects and where to get a Yellow Card.
About Epilepsy Society
Our vision is a full life for everyone affected by epilepsy. We want everyone affected by epilepsy to have the best opportunity for a full life – as free from seizures as possible.
Our people
Read biographies for members of our board of trustees, president and vice president, and our senior management team including our CEO Clare Pelham (pictured above).
Our history
The National Society for the Employment of Epileptics (NSEE) was launched in 1892 by a group of London philanthropists and medical men.
Media Centre
Find out more about Epilepsy Society in the press, our extensive library of video and How you can become a media contact.
Epilepsy Society facts
Doctors and scientists at Epilepsy Society are making a major contribution to the world's research into the causes, diagnosis and treatment of epilepsy, pioneering novel diagnostic techniques and making possible improvements in both surgical and medical treatment of the condition.
Contact us
Contact us online for general, fundraising or training enquiries and to give feedback.
Epilepsy Society facts
Doctors and scientists at Epilepsy Society are making a major contribution to the world's research into the causes, diagnosis and treatment of epilepsy, pioneering novel diagnostic techniques and making possible improvements in both surgical and medical treatment of the condition.
Board of trustees
Meet our board of trustees including our Chair Peter Worthington who was appointed Chair of the board of trustees in November 2017.
President and Vice Presidents
Meet our president Countess Howe and our various vice presidents including Former British Prime Minister David Cameron.
Our senior team
Meet our senior team including our CEO Clare Pelham and our Medical Director Ley Sander who has who has been named as the world's leading expert on epilepsy in 2020.
Spokespeople
We can offer spokespeople with a wide range of expertise in epilepsy ranging from medical care and research to social and political issues.
Epilepsy Society in the press
Find out more about Epilepsy Society in the press including national and regional press.
Paige Dawkins
Paige is the Marketing and Communications Executive at Epilepsy Society helping us to grow our social community so that we can reach and help as many people affected by epilepsy as possible.
Nicola Swanborough
Nicola is responsible for editing and producing our membership magazine Epilepsy Review and writing content for our website and dealing with any newspaper and media enquiries.
Natasha Ward
Natasha is working at Epilepsy Society as our Digital Marketing Officer; helping to create and run campaigns, as well as extend the reach and effectiveness of the charity’s online presence.
Our Chalfont Centre
Over the course of a history that spans three centuries, the DNA of both Epilepsy Society and Chalfont St Peter have become intrinsically entwined. The village is very much a part of the life blood of the charity and vice versa.
The site at Chalfont
See the map of our Chalfont Centre as well as our location on Google maps and any information on site developments.
Community events
Read about the previous and upcoming charitable community events at Epilepsy Society's Chalfont Centre in Chalfont St Peter, Buckinghamshire.
Coffee shop
We offer a very warm welcome to all in our community Coffee Shop. We sell a wide range of coffee, flavoured teas, milkshakes and smoothies to quench your thirst at very reasonable prices.
Epilepsy Society facts
Doctors and scientists at Epilepsy Society are making a major contribution to the world's research into the causes, diagnosis and treatment of epilepsy, pioneering novel diagnostic techniques and making possible improvements in both surgical and medical treatment of the condition.
Interactive guide to the driving regulations
Use our interactive guide to the driving regulations for people with epilepsy in the UK to find out how the driving regulations apply to you.
Amelia's story
Amelia Roberts was beautiful, vivacious and just 21 when she tragically died from a fatal seizure just before Christmas in 2018.
Emma Griffith's story
Emma Griffith explains how being supported by the Epilepsy Society's Chalfont Centre for a decade has helped her to turn her life around and encouraged her to share her story.
Neill's story
Neill Lowdon is an artist from Cornwall who has recently sold 35 of his paintings to raise money for us. Here, he talks about leaving a legacy to Epilepsy Society in his will.
Sarah's story
Sarah has left temporal lobe epilepsy. She has decided to opt for surgery. 'All I want is my independence,' she says. 'I want to cook by myself, bath by myself and look after my two daughters without having to ask for help.'
Leann's Story
When Leann Robb had her first seizure at the age of 24, her family's lives were turned upside down. 'It literally hit us like a bolt out of the blue,' says mum, Joanne Robb. 'We had not had any experience of epilepsy, we knew nothing about it. My husband Kenny and I were in a dark tunnel with no light at the end.'
Caiden's story
At just nine years of age, Caiden Tanfield is one of Epilepsy Society's youngest fundraisers.
Duncan's story
Duncan Weston is 62. He has lived with epilepsy for 50 years. He doesn't trust himself to take cash out of a high street bank machine as he knows he is likely to have a seizure mid-transaction and walk away leaving his card and his money in the machine.
Laura's story
Laura Grainger, 34, cannot remember her own wedding day, most holidays and birthdays, or the time she spent at university. The impact of her epilepsy means that memory loss is a huge factor in her life.
Kerry's story
Kerry Pates was just 19 years old when she died of SUDEP. Karen Pates describes the impact of her daughter Kerry's death.
Samantha's story
Nineteen-year-old Samantha Ahearn died of SUDEP (sudden unexpected death in epilepsy) just six months after her first seizure.
Owen's story
Owen Williams was 39 when he died in July 2014. His mother, Ro Williams, describes the impact of her son's death from SUDEP.
Hazel's story
Just six weeks before her 18th birthday, Hazel Cooper was found dead by her mother. Julie describes what it was like finding out that her daughter, Hazel, had died suddenly from epilepsy.
Sereena's story
Sereena Webb recalls the loss of her son Taylor, who lost his life to SUDEP at the age of nine.
Gareth's story
Gareth rediscovered his passion for music because of his epilepsy.
Masie's story
Award-winning comedian with epilepsy has debut show launched on television.
Peter's story
Internationally renowned writer Peter talks about his early life as a gravedigger with epilepsy.
Anneleen's story
Edinburgh-based artist has produced a series of pictures which explores living with epilepsy.
Emma's story
Emma would like to increase the awareness of epilepsy.
Stephen's story
STEPS resident Stephen designs a T-Shirt for BBC Children In Need.
Daniel's story
Brother of comedian Russell Howard, Daniel, developed epilepsy as a result of a severe head injury when he was 10 years old.
Gina's story
Gina believes that her epilepsy helped her to embrace new career opportunities.
Michelle's story
Michelle Hackett was 16 years old when she had her first baby, a little girl called Courtney. Michelle was taken into hospital with pneumonia and Courtney was born by Caesarean section.
Jennie's story
Watch actress Jennie Jacques discussing the impact of her sister's epilepsy and what inspired her to fundraise and raise awareness of epilepsy.
Georgina's story
My name is Georgina, I live in London and was diagnosed with epilepsy when I was 12 years old. I’ve worked in the film industry as a script supervisor for the past 6 years and love every minute of it.
The Howard's story
When one child in a family has epilepsy it can have an impact on siblings too. Comedy king Russell Howard tells Nicola Swanborough how his brother’s seizures have helped shape his wicked sense of humour, while over the page, two sisters tell their moving story.
Michael's story
Michael Green has spent 10 years working as a nurse in the Bedouin community living in the Jordanian desert in spite of his own epilepsy.
Seizure first aid stories
Michael, 76, has unstable epilepsy and often goes into status epilepticus when having a seizure. His daughter, Paula, is the MP for Dewsbury and is the Chair of the All Party Parliamentary Group for Epilepsy (APPGE).
Christina's story
Christina Marshall uses her graphic design pieces to allow her to be more positive about epilepsy.
Lorraine's story
Taking daily exercise while on lockdown can pose extra challenges for anyone with uncontrolled seizures, as Lorraine found out.
Debbie's story
Debbie Jackson is currently feeling positive about her epilepsy. She is a personal assistant at a media company in Canary Wharf and feels supported by her boss and colleagues. People have been very good in understanding her condition when she has had a few seizures at work, but this has not always been the case.
Stuart's story
Stuart Watson, 39 from Howden in East Yorkshire, was so inspired by the support he received from our helpline that he decided to do a trek of the Great Glen Way in the Scottish Highlands and raise over £2500 for us.
Queen Elizabeth House
Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.
Queen Elizabeth House
Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.
Queen Elizabeth House
Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.
Download your fundraising pack
Complete this form to gain access to your fundraising pack including sponsorship forms, guides to fundraising and Epilepsy Society posters.
What is epilepsy?
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
What is epilepsy?
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
What is epilepsy?
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
Niall's story
Niall Moore, aged 36, will celebrate graduating today (Friday 31 July) with a Doctorate in Childhood Studies (DChild) from the School of Social Sciences, Education and Social Work at Queen’s University Belfast.