The costs in England (JEC Data 2011) Around 496 000 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 114 100 misdiagnosed (23%) £38 109 000 million in unnecessary treatment £182 788 200 million in unnecessary non medical costs

The costs in England (JEC Data 2011) Around 108 000 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

Epilepsy in Cumbria Data taken from Epilepsy Audit Dec 2006 1030 patients in Eden and Carlisle Done by a medicines manager using data collected by QOF 85% patients taking medication correctly 72% on a single drug 32% have active epilepsy (seizure in the last year)

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

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,

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 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 Was there any predisposing factor, i.e. BDZ, EtOH? There is no need in most cases to start medication Ask them to stop driving until they are seen, ask about job and hobbies

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

Emergency Management Rectal Diazepam 10mg still first line 1-2mg Lorazepam IV if have access 10mg Buccal/intranasal Midazolam - unlicensed over 18 Midazolam is now the recommended emergency rescue medication.

Monitoring Medication Carbamazepine – FBC, LFT, U&E, Coag initially and then every 8 weeks for 1st 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 1st 6 months.

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

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

Driving Restrictions Group 1 licence (car or motorcycle) http://www.dvla.gov.uk/at_a_glance/ch1_neurological.htm 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) They pose no other threat to the public or themselves when driving a vehicle Ongoing seizures that do not affect consciousness, 1 year 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)

Driving Restrictions http://www.dvla.gov.uk/at_a_glance/ch1_neurological.htm Group 2 licence (lorries larger than 3.5 tonnes and passenger carrying vehicles with 9 or more seats) Single Seizure = full licence returned after 5 years** No seizures for 10 years No AEDs for 10 years No continuing liability to seizures Loss of awareness where cause is uncertain and epilepsy is not diagnosed = loss of licence for 5 years 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

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

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

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 http://www.epilepsyandpregnancy.co.uk/ Freephone Number: 0800 389 1248

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

What about QOF? Current register of patients Everything else has gone -seizure frequency Seizure free for 12 months remains -seizure type -seizure control -medication review -concordance

What about QOF? Points %ages 1 4 gone 50-90% 6 gone 45-70% 3 gone register of patients >18 with epilepsy, who have been on treatment in last 6/12 1 Fit frequency recorded 4 gone 50-90% Seizure free for previous 12 months 6 gone 45-70% Women <55 receiving advice on contraception, pre-conception or pregnancy in last 12 months 3 gone

Referrals Choose and Book Dr Kalinsky - 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 Helplines - 01494 601 400 (Mon-Fri: 10-4) Epilepsy Action www.epilepsy.org.uk NSE www.epilepsynse.org.uk Epilepsy Bereaved www.sudep.org Helplines - 01494 601 400 (Mon-Fri: 10-4) - 0808 800 5050 (freephone) Benefits and support from social services

Any Questions?