EPILEPSY

1. EPILEPSY Brenda Willis Regional Manager South West Region

2. Introduction • Epilepsy Society is the largest epilepsy charity in the UK • Founded in 1892 • Today: Research, Out Patients Clinics, Assessment Centre, Care Services, Training, Information Services and Awareness Raising

3. What is Epilepsy? • A neurological condition where there is a tendency for people to have repeated seizures that start in the brain • Symptom of underlying cause • There are more that 40 types of epileptic seizures • Up to 70% of people with epilepsy can have their epilepsy controlled by prescribed medication

4. Epilepsy in the UK – the facts • 1 in 20 people will have a single seizure during their lifetime • 1 in 50 people will develop epilepsy • Highest incidence in children and elderly • 75 people a day are newly diagnosed as having epilepsy (that’s 27,400 per year) • More than 1 in 100 people have epilepsy at any one time – more than half a million people…. • Figures from Joint Epilepsy Council

5. What causes epilepsy? • Structural damage tumour, scarring, lesions, stroke, drug or alcohol abuse, birth trauma, brain parasites • Infection Meniningitis, Encephalitis • Inherited causes Seizure threshold, tuberous sclerosis, neurofibromatosis • Unknown

6. What are epileptic seizures? Brief events caused by disturbances of brain activity that cause a change in the persons • Awareness • Behaviour • Emotion • Feelings • Movement

7. PROBLEM SOLVING SENSATION Different areas of the brain PERCEPTION ARMS LEGS EYES EARS MEMORY They communicate with each other through small electrical impulses

8. What is epilepsy? Usual activity A B Epilepsy A B

9. Seizures happen when… • …a message is not switched off after it has been passed on • disturbed activity causes a change in the way the brain is working = a seizure

10. Are all seizures the same..? • Focal Seizures • Affect part of the brain • Consciousness intact/impaired • Generalised Seizures • Affect all of the brain • Consciousness is lost Day One Training 10

11. Focal seizures • Simple Focal (also known as simple partial) Déjà vu, pins & needles, fear, twitching, warnings, auras • Complex Focal (also known as complex partial) Automatisms- lip smacking, chewing, screaming, posturing Secondarilygeneralised • When seizure activity spreads to affect all of the brain

12. Generalised seizures • Tonic Clonic - stiffening & jerking • Absence - brief lapse in awareness • Myoclonic - muscle jerk • Tonic - stiffening of muscles • Atonic - loss of muscle tone

13. Video Clips 007 Graham simple partial seizure.wmv 011 Terry complex partial seizure.wmv 014 Lloyd complex partial seizure.wmv 018 Priya - secondarily generalised seizure.wmv 032 Calum - atypical absences.wmv 034 Calum - myoclonic seizure.wmv

14. How to manage non-convulsive seizure • If the person becomes confused, wanders around or behaves oddly • Stay calm • Do not restrain but gently guide away from danger • Reassure, stay with them until fully recovered • If the person falls and recovers, with or without confusion • Reassure, check for injury and stay with them until fully recovered

15. How to manage a convulsive seizure During the seizure • Stay calm • Note the time • Stop others from crowding around • Put something soft under the person’s head • Don’t move them (unless in danger) • Don’t restrain the person • Don’t put anything in their mouth • Minimise embarrassment

16. After the seizure stops • Roll them into the recovery position and check their breathing • Stay with them, giving reassurance, until they have recovered fully

17. The Recovery Position • A - Move the patient's nearest arm, as though they are stopping traffic; • B - Lift the patient's furthest knee, and bring their furthest hand to the near side of their face; • C - Using the patient's knee as a lever, pull them onto your knees • D - Adjust the patient's position, as shown This information is provided by St John’s Ambulance on their website www.halifax.sja.org.uk

18. When should you call an ambulance - • If the person • stops breathing • was injured during the seizure • does not recover well • asks you to call an ambulance • “Status Epilepticus” • When a seizure does not stop by itself or • When one seizure follows another without time to recover in between With tonic clonic seizures “status” is a medical emergency

19. Patient journey • Funny turns • Collapses • Go to GP or A&E • Referred to Neurologist

20. Seizures that are not epilepsy • Heart conditions • Fainting (syncope) • Low blood sugar (hypoglycaemia) • Febrile convulsions (high temperature) • Psychological problems (dissociative) • Panic attacks

21. Investigations for Diagnosis • History & Witness statement • Electroencephalogram (EEG) • Magnetic Resonance Imaging (MRI) • Blood test • Electrocardiogram (ECG) • Ambulatory EEG • Video Telemetry • Computerised Tomography (CT or CAT) Day One Training 21

22. Patient journey (2) • Eye witness accounts of seizures • Tests trying to ruling things out ECG • EEG, MRI • Diagnosis of epilepsy Epilepsy Awareness

23. Seizure control or limitation • Anti Epileptic Drugs • Vagal Nerve Stimulation • Surgery

24. Triggers for seizures • Forgotten medication • Incorrect medication • “Recreational” drugs • Alcohol • Tiredness • Sleep deprivation • Stress • Unusual excitement • Boredom • Illness • High temperature • Hormonal changes • Flashing lights • Patterns • Sounds • OR OCCUR WITHOUT TRIGGERS

25. Patient journey (3) • Take these tablets • Come back in a month • Take these tablets • Come back in a month Epilepsy Awareness

26. Some side effects of AEDs • Nausea • Dizziness, headaches • Double vision • Skin rash • Weight gain • Change in mood • Change in behaviour (particularly children)

27. Exhaustion • Tiredness • Drowsiness • Below par • The smallest thing can be a huge effort • “Like wading through treacle”

28. Memory • Thought processes slowed down • Can’t remember names • Can be embarrassing • Learning memory techniques • Retraining brain

29. Social issues - “A sense of loss” • Self confidence/self esteem • Independence • Job & career prospects • Income • Social/leisure activities • Relationships • Driving Licence • Ability to care for children

30. Social issues - Other factors • Unpredictability of seizures • Hidden nature of the condition • Social stigma (real or perceived)

31. However………………….. • Laura Sandys (MP) • Edith Bowman • Rik Mayall • Dai Green • Neil Young • Max Clifford • Dean Ryan • Julius Caesar • Vincent Van Gogh

32. Epilepsy Research Tripartite: Epilepsy Society, UCL, and UCLH • Attracts funding and facilitates integration of basic science with clinical application • Developing new research programmes in both depth and breadth • Major strengths in applications of genetics and imaging, pharmacology and epidemiology • Application of low-power electronic device and microsensors to epilepsy is emerging growth area Further information on activities; awards & appointments; research grants; and research publications on website: www.epilepsysociety.org.uk.

33. Want to know more ? Please contact us : Helpline: Mon – Fri (9am-4pm) 01494 601400 Website: www.epilepsysociety.org.uk Regional Services: 01494 601391

34. join our digital community: www.epilepsysociety.org.uk/digital