Epilepsy Awareness Presentation

1. Epilepsy AwarenessPresentation By Carmel McGinn, Adult Epilepsy Nurse Kerrie Kerrigan, Paediatric Epilepsy Nurse Maura Mackie, Paediatric Epilepsy Nurse Revised June 2016

2. Learning Outcomes • Demonstrate an awareness of what Epilepsy is and recognise different seizure types. • Understand appropriate First Aid • Understand the risks associated with Epilepsy and the impact on a person’s quality of life • Demonstrate an understanding of the role of staff caring for a person with epilepsy.

4. What is Epilepsy? • Epilepsy is a common, chronic neurological disorder characterised by unprovoked seizures. • A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption to the way the normal brain works. • The disruption results in the brain’s messages becoming halted or mixed up. • What you experience during a seizure will depend on where in your brain the epileptic activity begins and how rapidly it spreads.

5. Epilepsy Facts There are many different types of seizures (approx.40 different types) and unique to the individual. It affects approx.112,000 young people under 25 in the UK. 1: 250 children and 1: 100 adults. It can affect anyone at any time. It is not contagious. There is no connection between epilepsy and intelligence Not all types of epilepsy are life long. Approx.75% of children either outgrow their epilepsy or have their epilepsy well controlled on medication

6. What causes Epilepsy • In 6 out of 10 cases there is no identifiable cause. • Those epilepsies with a known cause are called ‘symptomatic’. There are two main categories: those caused by brain injury or disease e.g. Infections, brain tumours, trauma, malformations or degenerations, metabolic disorders. • Hereditary factors: Epilepsy can be inherited, but in most people there is no family history of epilepsy. Genetic testing can help identify specific Gene defects, which may be useful for treatment, prognosis and genetic counselling.

7. Diagnosis • There is no single test that will tell the consultant whether a person has epilepsy or not. • A diagnosis is based on the medical history and eye witness account of the event. • Various other tests such as an EEG, MRI, blood and genetic testing, may help to identify the type of epilepsy and possible cause.

8. EEG Test

9. Treatment • The medicines used are called Antiepileptic drugs (AED). • Epilepsy is usually controlled, but not cured by medication. • Up to 70% of people can become seizure free if they are on the most appropriate medication for them. • Taken on a regular basis • Usually twice daily • Common side effects include tiredness, dizziness and nausea. Other treatments options are ketogenic diet, VNS (Vagal Nerve Stimulator) or surgery.

10. Vagal nerve stimulator

11. Potential Triggers • Missed or late medication • Lack of sleep/tiredness • Stress /Excitement • High Temperature • Menstruation/ puberty • Alcohol/drug • Flickering lights/photosensitivity

12. Classification of seizures Seizures can be divided into two main groups: Generalised Seizures or Focal (Partial) Seizures

14. Focal (partial) seizures Affects just one part of the brain The person can be fully aware but may experience a strange sensation e.g.. Funny feeling in their tummy, strange taste, smell or fear. The person may also experience twitching of a finger/ face or have numbness. OR Consciousness may be altered and the person looks confused. May make strange movements e.g. Lip smacking, chewing, rubbing, plucking at their clothes Discharges can spread to the rest of the brain resulting in a generalised tonic-clonic seizure.

15. First Aid Focal SeizuresInvolving Altered Consciousness or Behaviour DO • Keep Calm • Guide the person from danger • Stay with the person until fully recovered • Talk quietly to reassure them • Repeat anything they have missed • Record time & length of episode DON’T • Restrain the person • Act in a way that could frighten the person such as making abrupt movements or shouting at them • Assume the person is aware of what is happening • Attempt to bring the person around • Give the person anything to eat or drink until fully recovered

16. Focal Seizure

17. Generalised Seizures In Generalised seizures the epileptic activity is in both halves of your brain. The main types of Generalised seizures are: Tonic Clonic Absence Myoclonic Tonic Atonic

18. Generalised Seizures Absence seizures Generally a childhood disorder The child may look blank and stare, lasting a few seconds Child can appear to be day dreaming or dazed Eyelid fluttering/ blinking may occur May have minor facial movements or head drop Able to continue normal activity almost immediately afterwards

19. Absence Seizure

20. Generalised Seizures Myoclonic: - The person has shock like contractions of different muscles. These are brief but can happen in clusters and often occur shortly after wakening Atonic (drop attack): - Sudden loss of muscle tone and person falls to the ground. Lasts a few seconds and able to continue normal activity immediately afterwards Tonic:- The person’s muscles contract resulting in a fall. These are all very brief and recover quickly but the person may injure themselves as a result of these.

21. Tonic-Clonic Seizures Most common and widely recognised of the generalised seizures. Resulting in loss of consciousness. Tonic Phase • Muscles contract, body stiffens and person falls to the ground • The person may become pale • Their breathing may be irregular and lips may appear blue • Saliva may dribble from their mouth and can be blood stained if tongue has been bitten • Incontinence may occur

22. Tonic-Clonic Seizures Clonic Phase • Consists of short sharp rhythmical jerks and gradually slows down • Muscles relax and the body becomes limp • The person will slowly regain consciousness but may be groggy and confused afterwards Post-ictal state • After the seizure the person can be very tired and have memory loss. This can last from minutes to days.

23. Tonic-Clonic Seizure

24. First Aid Tonic Clonic Seizures DO • Keep Calm and reassure the person • Protect them from injury – remove harmful objects • Cushion their head • Aid breathing by gently placing the person in the recovery position when the seizure has stopped • Record time & duration of seizure • Stay with the person until fully recovered DON’T • Put anything in the person’s mouth • Move unless in danger • Restrain the person • Give anything to eat or drink until fully recovered • Attempt to bring the person around

25. Recovery Position

27. Call an Ambulance if …… • The seizure continues for more than 5mins or longer than is normal for the person. • One seizure follows another without the person regaining consciousness • Person is injured during the seizure • You believe the person needs urgent medical assistance

28. Emergency Medication(Buccal Midazolam, Rectal Diazepam or Paraldehyde) On rare occasions emergency medication is needed to stop continuous or repeated seizures. This is to help prevent status epilepticus which is a medical emergency. Emergency medication should only be given by someone who is trained in this procedure and where consent has been obtained. If required, an Epilepsy Emergency Medication Plan (EEMP) will be completed by the Consultant. In addition to this, an individualised care plan will also be completed by the identified named nurse. In the absence of an up to date EEMP or appropriately trained staff, an ambulance must be called.

29. Emergency medication

30. Epilepsy and Risk Assessment • Risk involves balancing the health and safety of the individual with not wishing to restrict their quality of life by being over protective. • It should be a multi disciplinary process • Often a complex task and specific to each individual.

31. Risks with Epilepsy Stigma and quality of life- over protected versus informed choice and consent Risks of injury and fractures, increased admissions to hospital. Medication side effects. SUDEP- Sudden unexpected death in Epilepsy.

32. SUDEP • 1 in every thousand people with epilepsy will die suddenly with no obvious cause. • Risk is low but will vary from person to person. Not associated with all seizure types. • Cause: don’t really know. Possible link with seizures and heart rhythm abnormalities.

33. Who is at risk? Tonic clonic /convulsive seizures. Nocturnal seizures. Young adults. Having seizures when no one is around to help. Medication compliance Lifestyle issues: alcohol, other recreational drugs, poor sleep pattern. SUDEP rarely happens in children under 16. .

34. Practical Safety Tips • Ensure family/ friends/ colleagues/ carers know about your Epilepsy and first aid care. • Attend all Epilepsy appointments with Nurse or Doctor. • Take prescribed medication as directed. • Shower rather than bath. • Inform people of your schedule/ routine. • Wear Medic Alert bracelet / necklace. • Most sporting activities are suitable with care

35. Role Of Staff • Obtain information about the person’s epilepsy from individual, family/ carer. • Communicate with person and family about any concerns i.e. seizure pattern, change in ability, behaviour or mood. • Report & record any seizure activity observed as per local policy. Communicate with appropriate staff/ carers. • Ensure a risk assessment is carried out for the individual if required. • Ensure you have attended epilepsy awareness/ rescue medication refresher training within the last 2 years (JEC 2012)

36. Information Required About Person’s Epilepsy • Emergency contact details • Type of seizure/s • Any warning or tell tale signs of a pending seizure • What happens • Before a seizure • During a seizure • After a seizure • How long does the seizure last • How person is following a seizure and what First Aid is appropriate. • Details of emergency medication if required.

37. Living with Epilepsy Many fears and myths about Epilepsy are due to a lack of knowledge. By finding out about the person’s epilepsy you will have a better understanding of how you can help. Children and adults should be encouraged to actively participate in the same activities as their peers, where possible promoting independence, confidence and self esteem.

38. USEFUL CONTACTS JEC Joint epilepsy Council of the U.K and Ireland 2012 Aguideline on training standards for the administration of buccal midazolam. www.jointepilepsycouncil.org.uk www.youngepilepsy.org www.epilepsyaction.org.uk

39. Thank you for listening Any questions?