Nes feb2009


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Nes feb2009

  1. 1. epilepsyExplaining seizures that are not epilepticnon-epileptic seizures
  2. 2. A large print text only version of this leaflet is available from the Epilepsy Helpline on: 01494 601 400 (Monday - Friday 10am - 4pm)non-epileptic seizuresContents1 Introduction page 32 Causes and diagnosis page 63 Dissociative seizures (DS) page 114 Treating DS page 155 Living with DS page 17
  3. 3. Explaining seizures that are notepilepticYou may have picked up this leaflet becauseyou, or someone you know, have just beendiagnosed with non-epileptic seizures.Non-epileptic seizures (NES) often look likeepileptic seizures but they have a differentcause. In this leaflet we look at the different typesof NES, why they happen, and how they aretreated.1. IntroductionAre all seizures the same?There are different types of seizures, andthey happen for many different reasons.Some are caused by conditions such as lowblood sugar (hypoglycaemia) or a temporarychange to the way the heart is working. What seizures all have in common is thatthey are usually sudden, short, and cause achange in the person’s awareness of wherethey are, what they are doing, what they arethinking or their feelings. Some people have more than one typeof seizure. For example, around 15 in every100 people with non-epileptic seizures alsohave epilepsy. 3
  4. 4. What is the difference between epilepticand non-epileptic seizures?Epileptic and non-epileptic seizurescan look the same and have the samefeatures. They can both happen suddenlyand without warning, and can include aloss of awareness or the person becomesunresponsive, makes strange or repeatedmovements, or shakes (convulses). They canboth cause injury and incontinence (wettingyourself), and can both happen when awakeand during sleep. The difference between epileptic andnon-epileptic seizures is their cause.Epileptic seizuresEpileptic seizures start in the brain. Ourbrain controls the way we think, move andfeel, by passing electrical messages fromone brain cell to another. Although epilepticseizures always happen due to disruptedbrain activity, what happens to the personduring the seizure depends on where in thebrain this disrupted activity happens. Thereare many different types of epileptic seizure:in some the person is aware of what ishappening, in others they become confusedand unaware of their surroundings, or theymay become briefly ‘absent’ or fall to theground and convulse (shake). Epileptic seizures are caused by adisturbance in the electrical activity of thebrain (and so they always start in the brain).4
  5. 5. In contrast, seizures caused by a conditionoutside of the brain are not due to epilepsy.For example, a seizure caused by a low levelof sugar in the blood, or a faint (syncope)which is caused by either not enough oxygenin the blood, or the heart not pumpingenough blood around the body. See NSE leaflets ‘epilepsy - seizures’ and ‘epilepsy - what is it?’ for more information about epilepsy.Non-epileptic seizuresNon-epileptic seizures (NES) are differentfrom epileptic seizures because they arenot caused by disrupted electrical activity inthe brain. They have a number of differentcauses, and different forms, which areexplained in section 2 (page 6).Other names for non-epileptic seizuresNon-epileptic seizures are sometimesknown by other names such as non-epilepticattacks. People who have non-epilepticseizures may be described as having‘non-epileptic attack disorder’ (NEAD). Theseterms are not always helpful because theydescribe the condition by saying what it is notrather than saying what it is. NES used to be called ‘pseudoseizures’but this name is unhelpful because it soundslike the person is not having ‘real’ seizures ortheir seizures are deliberately ‘put on’. A newer name for non-epileptic seizures is‘dissociative seizures’. This is a helpful term 5
  6. 6. because it does not describe the seizuresin terms of epilepsy. It is also a useful termbecause it is recognised by the World HealthOrganisation (this means that it is included inthe International Classification of Diseases:a list of all known diseases and conditions).However, the term dissociative seizures isoften used to refer to one particular type ofNES, as explained in section 3 (page 11). In this leaflet we have used the term‘non-epileptic seizures’ because it is currentlya widely used term. However, from section3 onwards this leaflet concentrates ondissociative seizures (which is the mostcommon type of non-epileptic seizure).2. Causes and diagnosisWhat causes non-epileptic seizures?Non-epileptic seizures (NES) can be dividedinto two types: organic non-epileptic seizuresand psychogenic seizures.Organic NESThese seizures have a physical cause(relating to the body). They include fainting(syncope), and seizures with metaboliccauses such as diabetes. Because these organic NES have aphysical cause, they may be relatively easyto diagnose and the underlying cause canbe found. For example, a faint may bediagnosed as being caused by a physical6
  7. 7. problem in the heart. In these cases, if theunderlying cause can be treated the seizureswill stop.Psychogenic NESSome NES have a psychological cause andare called ‘psychogenic seizures’. They arepsychological because they are caused by theimpact of thoughts and feelings on the waythat the brain works.Psychogenic seizures include different types.• Dissociative seizures are involuntary and happen unconsciously. The person has no control over them and they are not ‘put on’. This is the most common type of NES. See section 3 for more about these seizures.• Some people have other psychiatric conditions that cause seizures. The best example is panic attacks. These happen in frightening situations, when remembering previous frightening experiences, or in a situation that the person anticipates may be frightening. As the name suggests, the person having them feels intense anxiety. Panic attacks can cause sweating, palpitations (being able to feel your heartbeat), trembling and difficulty breathing. The person may also lose consciousness and may shake (convulse).• Some people have ‘factitious seizures’ - seizures that are consciously or deliberately ‘put on’. One example of this 7
  8. 8. is in Munchausen’s syndrome (a psychiatric condition in which the person pretends to have different medical conditions so that they get treatment). These seizures are not common: most NES are not ‘put on’.Types of NES NESOrganic NES Psychogenic NESDissociative Other Factitiousseizures psychiatric seizures conditionsHow are NES diagnosed?When you have seizures your GP will usuallyrefer you to a specialist for diagnosis. Thiswill usually be a neurologist (a doctor whospecialises in the brain) to see if the seizuresare epileptic. Or you may be referred to apsychiatrist or psychologist (as NES areusually classified as a psychiatric condition). It may be easier for doctors to try and ruleout possible physical causes first, includingepilepsy. This will influence the types of testsyou might have. NES can be difficult to diagnose partlybecause they can appear to be similar toepileptic seizures. There are no features thatwill definitely tell NES from epileptic seizures.8
  9. 9. Taking a personal historyMany of the tests used to find the causeof seizures cannot, on their own, confirm adiagnosis. Taking a ‘personal history’ can help to findthe cause of your seizures. This includes thefollowing:• looking at your neurological history (about your brain and nervous system and its development);• looking at your psychological development and mental health, including whether you have had depression or other psychiatric conditions, or have been subject to stress and trauma in the past;• looking at whether there is a family history of depression or other conditions;• looking at the history of your seizures, such as when they first started and when they happen; and• looking at whether you have been diagnosed with epilepsy but your seizures have never been controlled with anti-epileptic drugs.What happens during the seizureAsking you about what happens to youduring a seizure can be helpful to find thecause. If you don’t remember your seizures,the doctor might ask you to bring alongsomeone who has seen your seizures(sometimes called a ‘witness’). 9
  10. 10. The specialist might ask you about:• what situations you have seizures in;• whether you get any warning before a seizure happens;• what happens to you during the seizure or, if you don’t remember, a witness can help describe what happens to you;• how long the seizures last;• what you remember, if anything, about the seizure afterwards; and• how you feel afterwards and how long it takes you to recover.TestsSome tests are used to rule out other causesof seizures, including epilepsy.• Medical examinations and blood tests can be used to check your overall health and see if your seizures have a physical cause such as diabetes.• Scans such as CT (computerised tomography) or MRI (magnetic resonance imaging) are used to form a picture of your brain. This may show a physical cause for epileptic seizures, but would not usually be helpful in diagnosing NES.• An EEG (electroencephalogram) records the electrical activity of the brain. It is often used to see if seizures are caused by disrupted brain activity, which helps to diagnose epilepsy. NES are not caused by changes in brain activity.10
  11. 11. • Video telemetry involves having an EEG and being filmed at the same time. This compares what a person is doing with what is happening in their brain during the seizure, to tell the difference between epileptic and non-epileptic seizures. This can help to diagnose epilepsy (if, during a seizure, your brain activity changes) or diagnose NES (if, during a seizure, your brain activity does not change). See NSE leaflet ‘epilepsy - diagnosis’ for more about these tests.The specialist will usually explain the resultsof these tests to you. If the tests show noneurological or physical cause for yourseizures, your specialist may consider adiagnosis of NES. They may then refer youto a different specialist to diagnose NES.From this point onwards, this leafletconcentrates on dissociative seizures.3. Dissociative seizuresDescribing dissociative seizuresWe all react to frightening or stressfulsituations differently. When we are frightenedwe might feel physical symptoms such as aracing heartbeat or feeling sweaty. When wefeel sad, we might cry. So how we feelemotionally can sometimes cause a physicalreaction. 11
  12. 12. When we have experiences that areextremely frightening or upsetting,sometimes they are so emotionally difficultfor us to think about that we cannotconsciously cope with how this makes usfeel. In some cases, we will unconsciouslyhide or ‘repress’ the memory of theseexperiences. These memories may alwaysremain hidden and we may never rememberthat they have happened. For some people the memories of thesepainful past events can suddenly come upor ‘intrude’ in to their thoughts or awareness.This might happen during an emotional orstressful situation, when there is somethingin the environment that unconsciouslytriggers the memory, or even in a situationwhere the person is stressed but is notaware that they are stressed. This can causea dissociative seizure. Dissociative seizures happen as aresponse to suddenly remembering thetraumatic experience: the person splits off(or dissociates) from their feelings about theexperience because it is too difficult to copewith. The seizure happens because theiremotional reaction causes a physical effect.These seizures are an unconscious reactionso they are not deliberate and the personhas no control over them. One way to describe this is by comparingit to ‘domestic deafness’. Most of us havehad the experience of concentrating so hard12
  13. 13. on reading the newspaper that we don’trealise when someone is talking to us. Thisis like ‘turning the volume down’ to drown outwhat is happening around you so you canconcentrate. Dissociative seizures are likethe body’s way of ‘drowning out’ a frighteningor painful memory that intrudes into ourthoughts.What causes dissociative seizures (DS)?Any experiences that we have, whether goodor bad, can have a deep and long-lastingeffect on us, and everyone has their own wayof dealing with them. Dissociative seizures(DS) are often caused by traumatic eventssuch as:• accidents;• severe emotional upset (such as the death of a loved one);• psychological stress (such as a divorce);• difficult relationships;• physical or sexual abuse; or• being bullied.It can be hard to find the cause of someone’sDS. For some, they start shortly after aspecific event. For others, they may not startuntil years later, or they may start suddenlyfor no apparent reason. Once DS havestarted, they might be triggered or broughton when the person is stressed or frightened.Or they might happen spontaneously insituations that are not stressful or frightening. 13
  14. 14. Sometimes, even the fear of having a seizurecan, in itself, trigger a seizure. Finding the original event that caused theDS to start might help to find a way to treatthe seizures. But this is not always possible,and it can be hard to talk about traumatic ordifficult events.What are the symptoms of DS?Although DS start as a emotional reactionthey cause a physical effect. Features of theseizures can include palpitations (being ableto feel your heartbeat), sweating, a dry mouthand hyperventilation (over-breathing). Some features of DS are very similar toepileptic seizures. These physical featuresinclude loss of awareness, loss of sensation,and loss of control over bodily movement(which may include having convulsions).Two examples of dissociative seizures• Cut-off or avoidance attacks stop the person dwelling on painful or stressful thoughts or situations that are happening to them in the present. This may happen when the person doesn’t feel able to say they are finding it hard to cope.• Seizures caused by a delayed response to a very stressful event or situation, for example, being in a war or a disaster, are a response to past events. These seizures may be part of post-traumatic stress disorder (PTSD) - a condition that14
  15. 15. sometimes happens after a traumatic event. During the seizure the person may cry, scream or have flashbacks (sudden, vivid memories of the event). They may not remember the seizure afterwards.Who has dissociative seizures (DS)?DS can happen to anyone, at any age,although some factors make DS more likely.DS are:• more common in women;• more likely to start in young adults;• more likely to happen to people who have had an injury or disease, or who have had more severe emotional upset or stressful life events; and• more common in people with other psychiatric conditions (such as depression, anxiety, personality disorders or people who self-harm).4. Treating DSHow are DS treated?The right treatment for DS depends on theircause. Your specialist may talk to you aboutwhat treatment options might be helpful, andmay refer you to a different specialist.MedicationIf you have DS, your seizures are notepileptic and will not respond to anti-epilepticdrugs (AEDs). 15
  16. 16. If you are already on AEDs, for example ifyou were previously diagnosed with epilepsy,your specialist may suggest you graduallyreduce them. If you have DS and epilepsy,you take AEDs for your epileptic seizures. If you also have anxiety or depression,your specialist might talk to you aboutwhether other medication, such asanti-depressants, might be helpful.Other forms of treatmentPsychotherapy is the recommendedtreatment for DS. Psychotherapy refers toa group of ‘talking’ treatments. Mental healthprofessionals, including psychiatrists andpsychologists, are trained to give it. Cognitive behavioural therapy (CBT) isthe most often recommended treatment. CBTlooks at how you think about things, how thisaffects you physically and emotionally, andhow it affects what you do (your behaviour).By changing the way you think about things,such as how you think about yourself, otherpeople and the world around you, this maychange the way that you behave. CBTdoesn’t only look at what has happened toyou in the past but also at how things areaffecting you in the present. It looks for waysto help you to view current situations morepositively and cope with stressful events. CBT can take several months or longer asit may take time for you to feel comfortabletalking about your experiences and feelings.16
  17. 17. 5. Living with DSFirst aid for DSThe general first aid guidelines for DS arethe same as for epileptic seizures:• keep the person safe from injury or harm: only move them if they are in danger;• if they have fallen, put something soft under their head to protect it;• allow the seizure to happen, don’t restrain or hold them down; and• stay with them until they have recovered. See NSE leaflet ‘epilepsy - first aid’ for more about managing seizures.Practical help and safetyIf you have seizures of any kind you maybe able to apply for benefits, depending onthe effect that your seizures have on you.Whatever the cause, seizures can be suddenand unpredictable so keeping safe during aseizure is important. For information about safety, and tips for reducing risks due to seizures, see NSE leaflet ‘epilepsy - safety’.Driving regulationsDriving regulations for the UK are set by theDriver and Vehicle Licensing Agency (DVLA).DS usually come under the regulations for‘loss of consciousness or loss of, or altered,awareness’ which means that you need tostop driving and tell the DVLA that you have 17
  18. 18. DS. These regulations are based on thepossibility of having a seizure while drivingand the risks this could bring. For more about driving regulations go to DS a disability in the UK?People with a disability are protected by theDisability Discrimination Act (DDA). Thismeans it is unlawful for someone to treat aperson with a disability unfairly because oftheir disability without a justifiable reason.Under the DDA, you have a disability if:• you have a physical or mental impairment; and• your impairment has a major, negative and long-term (12 months or more) effect on your ability to carry out day-to-day activities (such as eating, washing, walking or shopping). The disability could affect you being able to move around, your memory and concentration, or your ability to understand the risk of danger.The DDA doesn’t include a list of everydisability covered. Although epilepsy is listedas a physical disability, DS is not listed. To beprotected by the DDA, you need to show thatyou meet the definition of a disability above. For information about the DDA go to or www.equalityhumanrights.com18
  19. 19. How you feel about your diagnosisBeing diagnosed with any condition cancause many different emotions, and canaffect many parts of your life. You maybe relieved to know what is causing yourseizures. Or you may find it hard to come toterms with, particularly if you were previouslydiagnosed with epilepsy and have now beendiagnosed with DS. Being diagnosed with a psychiatriccondition can also feel quite scary orupsetting because of the stigma aroundhow we view psychiatric conditions.Understanding that DS can be your body’snatural way of reacting to stressful situationsmight be helpful. There is no ‘right’ way to feel about yourdiagnosis, but being able to accept it can bepart of helping to improve your seizures. You might like to talk to someone aboutyour diagnosis and how you feel about it. Contact NSE’s helpline. See back cover for details.Note: the example used on page 12 is fromJohn Mellers, Consultant Neuropsychiatrist,The Maudsley Hospital.Further informationNSE’s written information, including a list of allNSE resources, is available from thehelpline or online at 19
  20. 20. To become an associate member and receiveinformation on epilepsy call 01494 601 402 oremail a fundraising pack or other fundraisingenquiries call 01494 601 300 oremail Information ServicesNational Society for EpilepsyChesham LaneChalfont St. PeterBucks SL9 0RJTelephone 01494 601 Helpline01494 601 400 (national call rate)Monday - Friday 10am - 4pminformation... time to talk... emotional support... translation service availableTelephone Helplines Association accreditedEvery effort is made to ensure that all our information is correctand up to date. Please note that some information may changeafter the date of printing. This information is not intended to bea substitute for medical guidance from your own doctors. NSEcannot be held responsible for any actions taken as a result ofusing NSE information resources. © National Society for EpilepsyMarch 2009 Registered charity number 206186