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?

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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,

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

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TreatmentFocal 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 InformationFree prescriptionsBasic first aid and risk managementWhat to do if seizures are prolongedDriving restrictionsWomen's issuesInsuranceEmploymentDrugs / alcoholSport and RecreationSUDEP

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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)

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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

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Women and Epilepsy

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ContraceptionEnzyme 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

LamotrigineInitially 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

Pregnancy2500 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

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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.

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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

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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. 2

7

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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

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 50-90%

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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

SupportOrganisations– 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

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Any Questions?