2. 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

3. 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

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 Group 1 licence (car or motorcycle)
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
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
Freephone Number:

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? 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

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 Helplines - 01494 601 400 (Mon-Fri: 10-4)
Epilepsy Action
NSE
Epilepsy Bereaved
Helplines (Mon-Fri: 10-4)
(freephone)
Benefits and support from social services

36. Any Questions?