The costs in England (JEC Data 2011) Around people affected in England (1 in every 105 people) Over 40 types of epilepsy including at least 29 different epileptic syndromes and more than 38 seizure types and 1 individual may experience several of these Incidence 51/100,000 per year Around misdiagnosed (23%) –£ million in unnecessary treatment –£ million in unnecessary non medical costs

The costs in England (JEC Data 2011) Around living with treatable seizures 1150 deaths from epilepsy related causes in 2009 = 3 per day, more than SIDS and Asthma –110 in children and young adults under 25 –Around 480 are potentially avoidable –Around 50% due to SUDEP About 23% of the total population of people with epilepsy are women of childbearing age

The Diagnosis What is the first thing that happens? What do you feel like afterwards? What do others describe?

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Syncope What is the first thing that happens? –Feel dizzy, light headed, cold and clammy, often hear what is happening, feel distant, unable to respond What do you feel like afterwards? –Bad for about 10 minutes, nausea, vomiting, sound returns before vision, +/- incontinence, no significant confusion What do others describe? –Pale, clammy, slump over, some brief jerks, eyes open

Hyperventilation Syndrome What is the first thing that happens? –Dizzy, light headed, tingling in face, hands and feet, sometimes unilateral What do you feel like afterwards? –Bad headache and tired What do others describe? –Go stiff, +/- jerking of limbs, eyes closed,

8 Non Epileptic Attack Disorder It can be difficult to tell the difference EEG/Video telemetry is the only way to look at what is happening They have a psychological trigger rather than a physical trigger It is a real condition, but needs counselling/psychology/anti depressant treatment rather than anti convulsants Anti epileptic medication does not help

Seizure What is the first thing that happens? –Either no warning or an ‘aura’; rising sensation in stomach, strange taste or smell, visual or auditory hallucinations What do you feel like afterwards? –Tired, confused, want to sleep, headache, may have been incontinent, bitten side of tongue, generally stiff and achey What do others describe? –Look vacant, eyes roll, go stiff/rigid, rhythmical jerks of limbs, choking noises, head turned to side, confused afterwards

Some useful facts… Biting of the lips and front of the tongue is common in non-epileptic seizures An EEG/MRI does not make a diagnosis of epilepsy, it merely supports a clinical diagnosis Hyperventilation and light sensitivity are tested when the EEG is carried out Epilepsy is more common in over 60’s than any other age group

When you suspect epilepsy Refer to consultant neurologist – they will arrange an MRI and EEG if necessary (Aim- to be seen within 2 weeks) Diagnosis of epilepsy is generally only made after 2 seizures Someone must go with them to clinic or send a witness statement/video footage/diary Was there any predisposing factor, i.e. BDZ, EtOH, missed sleep, serious head injury, serious illness, stroke, stress There is no need in most cases to start medication Ask them to stop driving until they are seen, ask about job and hobbies

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General Information  Free prescriptions  Basic first aid and risk management  What to do if seizures are prolonged  Driving restrictions  Women's issues  Insurance  Employment  Drugs / alcohol  Sport and Recreation  SUDEP

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19 Status Epilepticus A seizure lasting 30 minutes or longer A cluster of seizures lasting 30 minutes or longer with no recovery in between

Emergency Management Rectal Diazepam 10mg (less popular) 1-2mg Lorazepam IV if have access 10mg Buccal/intranasal Midazolam Midazolam is now the recommended emergency rescue medication.

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22 SUDEP Sudden Unexpected death in Epilepsy The exact cause is not known. It is thought that seizure activity in the brain causes changes in the person’s cardio-respiratory system = cardiac/respiratory arrest It is estimated that SUDEP happens to one in every 1,000 people with epilepsy

23 SUDEP Risk Factors; Uncontrolled generalised tonic-clonic seizures. High seizure frequency Not taking epilepsy medicines as prescribed Having sudden and frequent changes to epilepsy medication Being a young adult (in particular male) Having sleep seizures Drinking large amounts of alcohol Being alone

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Treatment  Focal seizures +/- generalisation –Carbamazepine, Lamotrigine, Levetiracetam, Valproate (Phenytoin, Topiramate, Zonisamide, Vigabatrin)  Primary generalised seizures –Valproate, Lamotrigine, Levetiracetam, (Phenytoin)  Absence seizures –Valproate, Lamotrigine, Ethosuximide  Juvenile Myoclonic Epilepsy (JME) –Valproate, +/- Levetiracetam

Monitoring Medication Carbamazepine – FBC, LFT, U&E, Coag initially and then every 8 weeks for 1 st 6 months. Then every 6 months. Valproate – LFT, FBC, Coag initially and then as above *not for use in clotting/liver disorders Lamotrigine – LFT, U&E, FBC, Coag initially, then as above. Levetiracetam – LFT, U&E, initially and then as above. Avoid sudden withdrawal. *care if renal/hepatic impairment Phenytoin – Aim for 10-20mg/l. Check level along with FBC, LFT, U&E initially and then every 4-6 weeks for 1 st 6 months.

When can medication be stopped? After discussion with patients about risks involved, generally suggest that attend clinic to review. Discuss that technically should stop driving when withdrawing medication In palliative cases it depends how much of an issue the seizures are

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Driving Restrictions  Group 1 licence ( car or motorcycle ) –Single seizure full licence returned after 6 months –Free of seizures for 1 year –Nocturnal seizures ONLY for 1 year (was 3), even if the seizures continue –They pose no other threat to the public or themselves when driving a vehicle –Ongoing seizures that do not affect consciousness, 1 year –Last awake seizure was 3 years ago and now only have sleep seizures –Medication changes- shouldn’t drive when regime changes. If have a seizure and return to previous medication, can resume driving again after 6 months if seizure free (was 1 year)

30 Driving Restrictions Isolated seizure = If you have a seizure after being seizure free for at least five years. This can only apply on one occasion. You may be allowed to drive when: You have been seizure free for at least six months Your consultant thinks it is unlikely you will have another seizure The driving agency is satisfied that as a driver you are not likely to be a source of danger to the public

31 Driving Restrictions Group 2 licence (lorries larger than 3.5 tonnes and passenger carrying vehicles with 9 or more seats) 2 or more seizures No seizures for 10 years No AEDs for 10 years No continuing liability to seizures Loss of awareness where cause is uncertain/seizure provoked and epilepsy is not diagnosed = loss of licence for 5 years

32 Driving Restrictions Provoked seizures e.g. intracerebral lesion, eclampsia These are treated on an individual basis by the DVLA, but DO NOT include seizures caused by drugs or alcohol Driving on private land - By law you don’t need a driving licence to drive any vehicle on private land. However, if your seizures are not well controlled, there are restrictions under the Health and Safety at Work Act.

33 Women and Epilepsy

Contraception  Enzyme inducers (carbamazepine, phenytoin, topiramate) –50 mcg pill –Increase if BTB to 80 or 100 mcg OR –4 packs consecutively with a 4 day pill free interval –Extra contraception for 8 weeks after withdrawal of enzyme inducer –Depot – 10 weekly –Copper coil / Mirena coil –Emergency contraception – double dose - suggested repeated at 12 hours

Lamotrigine  Initially believed to have no effect on the pill  Suggested that it can reduce efficacy of the pill and vice- versa  Manufacturer recommends: follow same guidelines as for enzyme inducing drugs  Family Planning recommends: should be OK  We recommend: discussing that pill/LTG efficacy could be affected and that should use condoms in addition if definitely want to use COCP/POP

Pregnancy  2500 babies born each year to women with epilepsy  90% of women who are seizure free before pregnancy remain seizure free  Latest data for all women from the epilepsy pregnancy register  around 10% of babies born to women with epilepsy are at risk of developing the condition

37 Pregnancy Depends on which AEDs are taken and at what dose. The following statistics may help you to keep this increased risk in perspective. 1 – 2 % in the general population will have a baby with a major malformation. 3% who have epilepsy and don’t take AEDs will have a baby with a major malformation. 4 – 8% who have epilepsy and do take AEDs will have a baby with a major malformation depending on the medication and its dose. 25

38 Pregnancy The highest risk medication is sodium valproate. It should not be used in pregnant women unless there is no alternative

Pregnancy If possible refer to clinic pre-conception Should have 5mg Folic acid while trying to conceive and until at least week 12 Should have shared care Detailed anatomy scan at 20 weeks If on an enzyme inducing drug, should have Vit K (20mg orally) daily from 36 weeks until delivery and baby should receive 1mg IM at birth Encourage all women to join the UK Epilepsy and pregnancy register Freephone Number:

40 Menopause Oestrogen is known to have a pro-convulsant effect for some women. HRT can increase seizure frequency. Equally seizure frequency can be reduced. Taking AEDs (Phenytoin, Carbamazepine, Primidone and Sodium Valproate) may reduce bone density. Main risk; high doses, multiple drugs, housebound. Treat each individual based on their risk; smoker, low BMI, family history, fractures, may warrant DEXA scan. 27

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42 Things to look out for Patients often have coexisting depression Can feel tired Notice loss of memory Check not using alternative remedies - St John’s Wort Ask about work/education difficulties Look at sporting interests Look at Childcare General safety issues

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What about QOF? Current register of pts >18years old with epilepsy (on Rx in L 6/12) = 1pt Everything else has gone You will get a prompt to offer an Epilepsy Care Plan (NICE guideline)

What about QOF? Points%ages register of patients >18 with epilepsy, who have been on treatment in last 6/12 1 Fit frequency recorded 4 gone50-90% Seizure free for previous 12 months 6 gone45-70% Women <55 receiving advice on contraception, pre-conception or pregnancy in last 12 months 3 gone50-90%

Referrals Choose and Book Neurology- Based in Penrith Sam Robinson - Epilepsy Advisor

Sam Robinson Adults with diagnosed epilepsy –Poor control/Increased Seizure frequency –Recurrence of seizures –Problems with medication –Stabilising/changing medication –Withdrawing medication –Pre-conceptual advice –Post-partum advice –Counselling

Support  Organisations –Epilepsy Action –NSE –Epilepsy Bereavedwww.sudep.org  Helplines (Mon-Fri: 10-4) (freephone)  Benefits and support from social services

51 Any Questions?