Epilepsy Facts & Treatment Guide

2. 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

3. 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

4. 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)

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

7. 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

8. 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,

9. 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

10. 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

11. 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

13. 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

14. 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.

15. 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.

16. 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

17. 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

19. Driving Restrictions 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)

20. 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

21. Women and Epilepsy

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

30. 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

31. What about QOF?

33. Referrals • Choose and Book • Dr Kalinsky - Based in Penrith • Sam Robinson - Epilepsy Advisor

34. 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

35. Support • Organisations • 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

36. Any Questions?