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Epilepsy Scotland Guides

This guide is for anyone who wants Epilepsy is the tendency to have to know more about epilepsy. repeated seizures which start in If you have just found out that you the brain. have epilepsy, you are not alone. It is the most common In Scotland, around 54,000 people neurological condition in the world have epilepsy - that is 1 in 97 Staying safe
and can often be misdiagnosed. Epilepsy affects everyone in If you have any questions different ways.
which are not answered or want As many as 1 in 20 people will have First aid
more detailed information a one-off seizure in their life. This about anything mentioned in can be triggered by many things Social life
this guide, contact our helpline such as binge drinking, a high on 0808 800 2200 or go
temperature or a sudden head injury. Epilepsy, however, is usually only diagnosed if a person has You can also phone us if you repeated seizures which start in simply want to talk to someone. We are good listeners and will take Epilepsy affects people of all time to explain things to you. All ages, genders and backgrounds our helpline staff are trained in the but it more commonly starts in use of counselling skills.
childhood and in later life. This is a general guide about epilepsy only and is not intended to replace medical advice from your consultant, epilepsy specialist nurse, practice nurse or GP.

There are over 40 different types of A simple partial seizure affects
A complex partial seizure affects
Generalised seizures affect the
epilepsy syndromes and seizures. only a small area of the brain. a larger area of the brain. During whole brain. The person will Seizures tend to last only a short During this type of seizure the this type of seizure the person: always lose consciousness during time and usually stop on their own. person: this type of seizure. Generalised Billions of neurons (nerve cells) • may experience strange or seizures include: in the brain pass information to • may experience strange unusual feelings; each other via electrical signals. If sensations such as an unusual • may lose their sense of time • tonic-clonic seizures - this is the
there is too much electrical activity, taste or smell or twitching; and appear distant from what is most well-known and recognised this can trigger a seizure. What a • knows the seizure is happening happening and who is around; type of seizure where someone seizure looks like will depend on but cannot stop it; • may behave in an unusual way loses consciousness, falls over, where in the brain it starts and how • will not lose awareness of their (ie smacking their lips, plucking and starts convulsing (jerking).
much of the brain is affected by the at their clothes or moving • absence seizures - these are less
excess electrical activity. aimlessly around a room); obvious and usually do not last • will have some loss of awareness long. There will be a brief loss of Seizures can be generalised which could put the person in consciousness, and the person (affecting the whole of the brain) danger (for example walking usually will stop what they are or partial, also known as focal into traffic).
doing, remain still and stare (affecting only part of the brain). into space. Absence seizures Partial seizures can be simple or can often be confused with Other types of generalised seizures include tonic, myoclonic and atonic seizures. You can find more detailed information about the different types of seizures on our website.

Epilepsy can sometimes be caused For most people, however, there Not everyone has an identifiable Watching TV is the most common by scarring on the brain from a is no obvious cause for their seizure trigger. In many cases, trigger for photosensitive epilepsy. previous head injury, brain infection epilepsy. This is called idiopathic
though, seizures can be triggered Seizures can be triggered by or tumour. Older people can epilepsy. In some of these cases,
by a number of factors. These some older style TV and computer sometimes develop epilepsy as it is thought that there may be screens, which have a flicker rate. a result of a stroke or dementia. a genetic explanation. Recent Modern flat screens, however, are Where there is a clear cause, this research has suggested that • not taking medication regularly considered to be safe as they do is referred to as symptomatic
some types of epilepsy can run • feeling ill or hot not flicker. Seizures can, however, in families.
also be triggered by the flashing • stress/anxiety or boredom or flickering content of a television • disturbed or lack of sleep programme, film or computer • missing meals/low blood sugar game, irrespective of whether a flat • alcohol/binge drinking Strobe lighting used in nightclubs • recreational drugs or at concerts, or natural light • menstruation/change in sources such as sunlight reflecting off water can also trigger seizures • flickering or flashing lights, or in some people with photosensitive epilepsy. Seizures triggered by flickering Keeping a seizure diary can help or flashing lights, or repetitive identify possible triggers.
patterns, are called photosensitive
epilepsy. An estimated three per
For more detailed information on cent of people with epilepsy are photosensitive epilepsy and other affected by this. triggers, check out our website or contact our helpline.
First aid
A little first aid knowledge goes a long way to keep someone What not to do
When to call an ambulance
safe during and after a seizure. A seizure usually stops on its own and will not require any intervention. • DO NOT move the person unless It is not necessary to call an they are in danger, i.e. on a busy ambulance, unless: What to do
road or at the top of stairs; • DO NOT try to stop the jerking or • this is the person's first seizure; If you are with someone who has a restrain the person; • the person is badly injured; tonic-clonic seizure, do the following: • DO NOT put anything in the • the person may have inhaled person's mouth or between their food, drink or vomit; • check their airways are clear; • the jerking lasts for five minutes • check if they have injured themselves; • DO NOT offer the person or longer than is normal for that • check the time to see how long the seizure Some people carry anything to eat or drink until medical identification like they are fully conscious.
• one seizure follows another with • move any objects that could cause injury; a bracelet or necklace. no recovery time in between; Check for this as it can With any other types of seizure, • put something soft like a rolled up jacket • the person is having problems give more information on simply stay with the person to or cushion under the person's head; breathing after the seizure has the person's epilepsy.
keep them safe until they have • loosen tight clothing around the neck; fully recovered.
• remove any glasses; If the person has a care If you have any questions about • reassure others and stop other people plan, check this for more first aid for seizures, contact our information about their • turn the person onto their side (recovery seizures and if/when position) after the jerking has stopped; to give emergency • if the person is a child, turn them onto medication. The care their side during the jerking phase, if this is plan also specifies who possible; can give emergency • check airway is clear and that breathing medication and when to has returned to normal.
call an ambulance.

There is no single test to diagnose An EEG (electroencephalogram)
Anti-epileptic drugs
Some people decide not to take epilepsy. A GP will usually refer records the brain's electrical activity. This is the most common treatment AEDs because of possible side anyone who has had one seizure or During a seizure, this activity is for epilepsy. Anti-epileptic drugs effects. This decision should only seizure-like episode to a specialist disrupted. The results of an EEG (AEDs) work by preventing seizures be reached after discussion with an at the hospital. Adults will usually can still be useful even though the from happening. Up to 70% of epilepsy specialist. You will need to see a consultant neurologist or a person may not have had a seizure people on the appropriate AED(s) know about possible risks of having consultant physician with a special during the recording. The specialist for their particular epilepsy can more seizures or injuring yourself interest in epilepsy. Children will use the EEG recording as only become seizure free.
during or after a seizure. usually see a paediatric neurologist one part of the investigation. Like all medication, AEDs can have AEDs work best when taken exactly or a paediatrician who specialises side effects. These commonly as prescribed. Even forgetting to in epilepsy.
Brain scans can be used to detect
include tiredness, lethargy, take them just once can trigger anything which may be causing drowsiness, lack of concentration, a seizure. If twice daily dosages The specialist will want to speak the seizures, such as scarring on and weight loss or gain. In many are prescribed, it is important to to anyone who has witnessed the the brain or a tumour. The most cases, side effects are mild and tend take them exactly as advised by seizure or seizure-like episode. commonly used brain scans are CT to fade once the body has become the specialist. Taken too closely This can be done face to face or (Computerised Tomography) or MRI used to the drugs. together they can cause side via the telephone. Information on (Magnetic Resonance Imaging).
A skin rash or unusual bruising effects. Taken too far apart they can exactly what happened and what should be reported to a doctor trigger a seizure as there may not the seizure looked like can help Often the EEG and the brain scans straightaway as this may be a sign be enough of the drug in your body the specialist make the correct are normal and yet there might of a more serious side effect. If to prevent a seizure.
diagnosis. They will also take a still be a diagnosis of epilepsy. Our you are concerned about any side detailed medical history.
website has lots more information effects, speak to your doctor or for anyone who has just been epilepsy specialist nurse as soon The following tests may be done diagnosed or is going through this as possible but do not stop taking to confirm a diagnosis of epilepsy. process just now.
your medication.
These tests can also sometimes give information on the cause and/or type of epilepsy:

A doctor will always check to make It is also important to be aware of Ketogenic diet
The ketogenic diet is very low in sure there is no interaction between the consequences of having just This is a special diet which is carbohydrates, which means that AEDs and any other prescribed one seizure, such as the loss of sometimes used to treat children the body has to burn fat for energy. drugs. Always let your doctor a driving licence, before such a who have drug resistant epilepsy. During this process, ketones are know if you take any over-the- decision is made. This diet can be quite successful produced. This state of ‘ketosis' can counter drugs, including vitamins and can reduce seizures or even have a positive effect on seizure Never stop taking your AEDs and supplements, as these can control them completely. For some control.
without medical advice as this sometimes interfere with AEDs. children though, the diet will have could be dangerous.
The diet is very restrictive and has no positive effect.
AEDs can affect men and women to be prescribed by a qualified in different ways. For example, ketogenic dietician. It should A small number of people with some AEDs can interact with the never be attempted by parents epilepsy will be suitable for surgery. contraceptive pill. There is a lot themselves. The child will also If, for example, the seizures are more information on this and other need to be carefully monitored caused by scarring in one area of issues affecting women and men by medical staff for any adverse the brain, it may be possible to with epilepsy on our website.
health effects. This diet is not for remove the damaged part. This can life. Children usually are weaned It is possible to come off AEDs but put a stop to seizures. People are off after two years but the positive this is usually only considered if usually only considered for surgery effects from the diet can remain.
you have been seizure free for a when a number of AEDs have been number of years. There will always tried over a period of time without Current trials using the Modified be a risk of seizures returning so controlling the seizures. Before Atkins Diet and Low Glycemic Index this decision should not be taken someone is considered suitable Treatment are also under way to lightly and should only be done for surgery, detailed tests will be find a similar diet for adults with under strict medical supervision. carried out to make sure that the uncontrolled seizures. With some types of seizure there is removal of one part of the brain will For more information on these a greater risk of seizures returning not affect important functions like dietary treatments, go to and a consultant will be able to give memory or speech.
www.matthewsfriends.org you more specific advice.

Vagal Nerve Stimulator
VNS is usually used alongside drugs Free bus pass
Disabled Person's Railcard
Some people with epilepsy can but this depends on individual Anyone who is legally allowed to People with epilepsy, who take have their seizures controlled or drive in the UK (aged 16 and over), anti-epileptic drugs but still reduced by a vagal nerve stimulator has had a seizure in the last twelve have regular seizures, can buy a Complementary therapies
(VNS). This generator is roughly the months and is receiving treatment Disabled Person's Railcard. This Some people find these therapies size of a pacemaker and is usually for epilepsy will be entitled to a free gives one third off train fares in helpful if stress, for example, is a inserted under the left collar bone Scotland wide bus pass. In some the UK. An adult travelling with trigger for seizures. Working on under general anaesthetic. A tiny areas this pass will also get people that person will also get one third these triggers can bring about a wire under the skin connects the reduced fares on local trains or off the fare. For more information, positive change in wellbeing, and generator to the left vagus nerve ferries. Some people will also get a check out their website may improve seizure control.
in the neck. It transmits regular companion card if they are in receipt www.disabledpersons-railcard.co.uk electrical impulses from the It is best to check with a doctor or of certain benefits. A companion or call 0845 605 0525.
generator to the vagus nerve. This epilepsy specialist nurse first before card will allow another adult to travel can help stop or reduce seizures. commencing any complementary with them free of charge. People also have a magnet, usually therapies. A reputable and qualified Entitlement to benefits will worn around the wrist, to stimulate therapist will always ask about A child or young person of fare depend on how a person is the device if they feel a seizure medical history and will know if paying age (aged 5 and over) but affected by their epilepsy on a day their therapy should be avoided for under 16 can get a free bus pass if to day basis, and their personal anyone with epilepsy. For example, they are in receipt of certain benefits. circumstances. Unpaid carers may There are some side effects St Johns Wort can interact with Contact our helpline for current also be entitled to financial help.
such as a hoarse voice, cough, AEDs, and certain essential oils such criteria and further information.
or tickling in the throat. These as hyssop, rosemary, sage, sweet For up to date advice or help with tend to be temporary and can fennel and wormwood should be any benefits, contact: often be reduced by adjusting the VNS settings. The device can • your local welfare rights officer be switched off and removed if it Complementary therapies should • your local Citizens Advice Bureau does not help with seizure control. never replace anti-epileptic drugs. • Citizens Advice Direct Contact us for more information There is more information on complementary therapies on • Benefits Enquiries Line our website.

Staying safe
Some people get warnings before a seizure. This gives them time to take themselves away from danger or sit down. Even if seizures are unpredictable and sudden, there are things you can do to reduce risks: Community care assessment
Shower or bath?
If you feel you need more help It is generally not recommended and support in the home, contact for someone with epilepsy to have your local social work department a bath particularly if they live on and ask for a community care their own. Having a shower tends assessment (or section 23 to be safer as this reduces the risk assessment for a child). This is of accidental drowning during a usually done by an occupational seizure. The shower should have Anyone who has had any type Anyone who has only sleep therapist who will visit your home a level access so that water cannot of seizure must stop driving. seizures but never any seizures and will look at ways to keep you become trapped. Avoid using very They will also need to notify the while awake will usually get their as safe as possible.
hot water, consider using a shower DVLA (Driving Vehicle Licensing licence back after a qualifying chair, and consider using a plastic Authority). After twelve months period even if they continue to or fabric shower screen instead of with no seizures (with or without have sleep seizures.
medication) a person can apply to get their ordinary car licence The DVLA can apply some Our website has much more back. A doctor will also need to discretion with one-off, single information on staying safe with be satisfied that the person is safe seizures. Provided certain criteria epilepsy in the home and when to drive again. Different, often are met (usually there has to be no stricter rules apply for other types previous history of any seizures), a of licences.
licence may be reinstated sooner than twelve months.
For more detailed information on current driving regulations,
please contact our helpline or check out our website.
Taking medication exactly as
Status epilepticus and SUDEP
Most seizures are short and stop on The best way to keep safe is to their own, however, in some cases, take anti-epileptic drugs exactly as a seizure may become prolonged. prescribed. This will give you the This can lead to status epilepticus best chance to get your seizures which is a medical emergency, so under control, which will reduce emergency medication is given to any risks of injury. Forgetting to stop prolonged seizures. This can take your medication, even just be given by ambulance or hospital once, can trigger a seizure or make staff, or a nominated carer or your seizures worse.
family member.
In rare cases, a person can die from Sudden Unexpected Death in Epilepsy – SUDEP. There are certain factors which can increase the risk Most children with epilepsy will be Various pieces of legislation of SUDEP. Your epilepsy specialist able to go to mainstream school cover the rights of children and nurse or doctor will be able to and will not require any additional young adults with disabilities to explain this to you and can usually support. For some children receive adequate and efficient put your mind at rest.
learning can, however, be affected support in their education. The and will require additional support Equality Act 2010 also makes it If you have any questions or unlawful for education authorities concerns about status epilepticus to discriminate against a child or or SUDEP, or simply want to talk to young adult for a reason relating to someone, phone our helpline.
their disability. There is a lot more information for parents and
teachers on our website or by phoning our helpline.
Social life
Anyone affected by epilepsy has If seizures are well controlled, a right to be treated fairly when there is usually no barrier to most Having epilepsy does not usually Many recreational drugs are in a job or looking for work. jobs. People whose seizures are mean an end to enjoying a drink. stimulants and can lower a Employers must look at each frequent and unpredictable may People on anti-epileptic drugs person's seizure threshold. This has case individually and assess any need to think more carefully (AEDs) will, however, need to think the potential to trigger seizures. risks in relation to the job. What about the type of work they do. more carefully about when and Taking more than one type of they cannot do is turn you down They can get the help of specialist how much they drink. Moderate drug or taking it with alcohol can just because you have epilepsy. employment agencies or disability drinking, ie two units of alcohol further increase the risk of seizures. Under the Equality Act 2010, an employment advisers at their local per day, a few times a week, is For some people even one-off employer has to make reasonable jobcentre to help them find work.
usually considered to be safe.
drug use can trigger a seizure.
adjustments to allow a person with epilepsy to safely carry out their We can give you more detailed Some doctors will advise not duties in the workplace. information on your rights at to drink alcohol with certain High energy drinks and anything work. We also provide support types of AEDs as alcohol can that is high in caffeine, if The armed forces are the only and information to employers who sometimes interfere with the consumed in large quantities, body not subject to the Equality employ or are about to employ medicine. Alcohol can make can also trigger seizures because Act and are allowed to ban anyone someone with epilepsy. Check out them less effective or make side caffeine is a stimulant.
who has had a seizure over the age our website or phone our helpline effects worse. Check the patient of five from joining. Other jobs for more information.
information leaflet that comes If you want to discuss drugs or may also have stricter criteria and with your AEDs for more details alcohol and the potential effect restrictions on health and safety about alcohol.
on your epilepsy, speak to your grounds, such as pilots, epilepsy specialist nurse or doctor. train drivers, taxi drivers or Drinking large amounts of alcohol There are other agencies who can child minders.
in a short space of time can trigger also give you impartial advice and a seizure. Heavy drinking over you can phone our helpline in a prolonged period of time can confidence for further details. We cause brain damage and this can in have more information on drugs turn cause epilepsy.
and alcohol on our website.
People with epilepsy can have Focusing on one thing at a time Many people will need some Whatever the cause of low mood, some difficulties with their and making notes or keeping lists time to come to terms with a it is important to seek medical memory. This can sometimes be can help improve your memory. diagnosis of a long term condition advice from a doctor or epilepsy linked to seizures starting in the Staying active and looking after like epilepsy. It is completely specialist nurse. This is particularly part of the brain that controls yourself can also help with normal to go through stages of important if it has been going on memory. People with temporal memory problems as stress and feeling anxious, sad or even angry. for a while.
lobe epilepsy are more likely to boredom can affect a person's This will usually ease over time, experience memory loss as the memory. If you feel your memory especially if seizures are controlled If you need to talk to someone temporal lobe is the part of the is affected, speak to your epilepsy well by medication.
about how you feel, you can brain where memories are formed.
specialist nurse or doctor who contact our helpline. Outside can refer you to a memory clinic If you are feeling stressed, anxious our opening hours, you can also A person's memory can also be for further testing and specialist or even depressed, it is important contact Breathing Space on affected before, during and after to address these feelings as this 0800 838 587 or the Samaritans a seizure. Side effects of some can have a direct impact on your on 0845 790 9090.
anti-epileptic drugs, like poor You will find lots more
epilepsy. Stress can be a seizure concentration or drowsiness, can information like this on
trigger for some people. There is also a lot more
also affect how well the memory our website.
information on coping with
There are many other reasons why epilepsy and looking after
someone with epilepsy can feel
yourself on our website.
low at times. This can, for example, be a side effect of anti-epileptic drugs, or it could also be linked to seizure activity in the areas of the brain connected with emotions. Helpline: 0808 800 2200
Text: 07786 209 501
www.epilepsyscotland.org.uk
Epilepsy Scotland, Epilepsy Action Scotland is a 48 Govan Rd, Glasgow G51 1JL company limited by guarantee.
Registered in Scotland No 163987 General: 0141 427 4911 Scottish Charity: No SC000067.
Fax: 0141 419 1709Email: [email protected]

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