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Epilepsy in Primary Care.

Maggie Tristram, Epilepsy Specialist Nurse.

 Epilepsy is the most common serious

neurological condition.  A GP with a list of 2000 may have 10-15 patients with active epilepsy and see 1-2 new cases per year  Prevalence of active epilepsy is 5-10 per 1,000.  70% have potential to become seizure free.

Scenario 1

24 year old Emily Stewart had a witnessed Tonic clonic seizure while at work in an employment office. She had never had this before. The seizure was self-limiting. She was taken to A and E while drowsy post-ictally. She has been asked to come and see you and told that she will need to go to the neurology clinic. She is very shaken by what has happened and comes to talk to you about whether she might need some time off work. She is worried about losing her job , but is confused about what happens next. How might you handle this? What can she expect to happen next? What can you tell her about her employment rights?

First Seizures
 NICE recommendation-all first seizure patients need


referral to specialist. Recommends to be seen within 2 weeks. Dr. Yvonne Hart /Dr Jane Adcock are consultants with specialist interest in epilepsy at the JRH. Medical history and eye witness accounts are still the most important components of reaching a diagnosis. One in twenty people may have a single seizure at some time in their life. There is a first seizure clinic held weekly in the neurology dept.

 Blood tests  ECG  EEG  MRI  Important to explain that negative result

doesnt mean they dont have epilepsy.

 Dont treat single seizures  First line treatment for partial seizures=

Carbamazepine  For generalized seizures= Sodium Valproate/ Lamotrigine (dependant on if woman of child bearing age).  Lots of other new treatments around, mainly add on.
 SANAD Marson AG et al, Lancet 2007,369(9566):1000-15

SANAD Marson AG et al, Lancet 2007,369(9566):1016-26

Scenario 2
 Mrs Debenham comes to see you because

her 14 year old son has been diagnosed with epilepsy. She has read about sudden death in epilepsy and is very anxious about how his life is going to be restricted. What do you advise her to tell her sons headmaster?

First aid

Safety Precautions.
 AVOID unguarded     

heights,fires, water. Dont have a bath when alone in the house. Care when cookingmicrowaves are safer Contact sports Swimming School trips

 Approximately 1000 epilepsy related deaths

p.a.  Accidents and suicide  Co morbidity  Status Epilepticus  SUDEP- National Sentinel Clinical Audit 2002 (500 deaths p.a.)

 Sudden, unexpected, witnessed or

unwitnessed, nontraumatic and nondrowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a toxicologic or anatomic cause for death.  the most important risk factor is the frequency of seizures  the more frequent the seizures, the higher the risk.

Information needs
 Medication, possible

side effects.  Managing medication eg concordance, memory aids, when to take a dose if miss one.  Interactions with other drugs.  Free prescriptions

 Driving rules  Can they drink alcohol  ?strobe lights  What triggers seizures?  Monitoring seizures.  Safety precautions.  SUDEP

Scenario 3

Emma (23) has had some episodes which were preceded by intense deja vu feeling, and during which she lost consciousness, and was a bit confused afterwards. She has been started on carbamazepine. She has been taking microgynon for contraception and needs to know whether this is still ok. What sort of epilepsy is this? One and a half years later her symptoms remain well-controlled she has had one fit only since then. She and her partner want to start a family but she has come to you for advice should she discontinue the carbamazepine?

Type of epilepsy
 What sort of epilepsy is this?  Localisation related epilepsy i.e. seizures

arising from a localised area of the brain. Depending on affected area symptoms may be different but frequently stereotyped in individual. Dj vu often associated with temporal lobe epilepsy.

International classification of seizures

 Microgynon for contraception, is this still ok?  COC with enzyme inducing AEDs.  Use 50 mcg oestradiol usually a combination

20+30 or 2 30s ie Microgynon30 Usually tricycle with 4 day break.  BTB tritrate up to 100mcg oestradiol.  Norinyl 1 contains mestranol, only equivalent to 37-40 mcg of oestradiol.

Contraception continued
 No need to shorten the time between depots.  POP and implants not recommended, due to

lack of evidence.  Other methods OK.

Emergency Contraception
 With enzyme inducing AEDs.  :the dose of levonorgestrel should be

increased to a total of 3 mg (1.5 mg taken immediately and 1.5 mg taken 12 hours later) [unlicensed doseadvise women accordingly]. BNF

 She and her partner want to start a family?  Plan ahead! Referral to neurologist

appropriate beforehand.  Risk of baby with a malformation around 5- 6% if on one anti epileptic medication. Sodium Valproate higher i.e. 10%.  5mg daily Folic Acid recommended for 3 months before conception and 1st 3 months of a pregnancy.

UK pregnancy register
 Carbamazepine (goody)  Sodium Valproate (baddy)  Lamotrigine (goody/baddy)  Malformation risks of anti-epileptic drugs in

pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register. JNNP Online

Withdrawal of medication
 Should she discontinue the carbamazepine?  If seizure free for two years (all types)

withdrawal can be considered  Refer to neurologist if still want to consider drug withdrawal. Need to discuss risk/benefit in detail.

Factors predictive of seizure recurrence

 Age over 16  Seizures after starting anti epileptic treatment  History of secondarily generalized tonic clonic

seizures.  History of myoclonic seizures.  EEG with spike and wave.  Short period of freedom from seizures.

Drug withdrawal continued

 If driving need to stop during withdrawal and

6 months after  Consider safety issues at work and at home. Employers attitudes to epilepsy also important.  Do they have young children to look after on their own?  Would be advisable to consider affect of sleep deprivation on seizure frequency.

Scenario 4
 Geoff Peters has had epilepsy diagnosed.

He is 44 and works as a bus driver. He has stopped driving. What can you tell him about DVLA regulations in this situation?

Group 2 entitlement- voc LGV/PCV

 Regulations require a driver to remain

seizure-free for 10 years since the last attack without anticonvulsant medication.  Following a solitary seizure associated with either alcohol or substance misuse or prescribed medication, 5 years free of further seizures, without anticonvulsant medication is required.

Driving laws
 Should be seizure free for one year before

reapplying for license.  Simple partial seizures are regarded as seizures in terms of the driving laws.  If the seizures are confined to sleep, they should establish this pattern for 3 years before reapplying for a license.

Scenario 5
 Dilara has become unexpectedly pregnant

while taking lamotrigine. She had a coil but unfortunately it fell out. What do you tell her and what care is she offered in pregnancy?  She has a successful pregnancy and in the third trimester asks your advice about the birth. She has read that people can have fits during delivery and she is worried about this, and she is also concerned about breast feeding while taking medication. How might you advise her?

During pregnancy
Folic acid 5mg daily LTG levels can fall dramatically during pregnancy (up to 50%) consider measuring level in early pregnancy and increasing dose as required. Silver Star Service UK pregnancy register

Seizures during labour

 1%-2% increased risk of seizures during

labour  Possibly influenced by sleep deprivation and physiological changes during labour

 Breast feeding usually OK  If LTG has been increased reduce gradually

following delivery.  Warn re sleep deprivation and caring for small baby in context of epilepsy.

 Has some interaction with COC.  If BTB occurs may indicate decreased

contraceptive efficacy  Women starting COC may experience a drop in serum levels of lamotrigine  Women stopping COC may experience an increase in lamotrigine levels.

Scenario 6
 Peter is a 38 year old catering manager who

has been taking sodium valproate for 10 years and has been fit-free for 4 years. Prior to this he had 2 nocturnal fits. He comes to discuss with you whether he should stop taking an antiepileptic drug. What are your thoughts? What information might be relevant?

 MRC drug withdrawal study. 1013 patients

who had been seizure free for 2 years or more. Within 2 yrs. of withdrawal 60% seizure free.  MRC Lancet 1991; 337; 1175-1180

Special circumstances
 If the person with epilepsy decides to

withdraw medication, they should stop driving for the period of withdrawal and for 6 months after.  If they are changing medication, caution should also be advised.

 You are reviewing your QOF points and

have been asked to look at epilepsy. What are the targets for epilepsy care in GP?

Epilepsy Indicator Points Payment Stages

Records EPILEPSY 1. The practice can produce a register of patients receiving drug treatment for epilepsy 2 Ongoing Management

EPILEPSY 2. The percentage of patients aged 16 and over on drug treatment for epilepsy who have a record of seizure frequency in the previous 15 months 4 EPILEPSY 3. The percentage of patients aged 16 and over on drug treatment for epilepsy who have a record of medication review in the previous 15 months 4 EPILEPSY 4. The percentage of patients aged 16 and over on drug treatment for epilepsy who have been seizure free for the last 12 months recorded in the last 15 months 6 25-70% 25-90% 25-90%

Take home points

 How does epilepsy make you feel?  Lacking in confidence  Reluctant to go out for fear of seizures.  Leads to social isolation- depression.  Worried about safety if go out and have

seizures.  Concerned about other peoples reactions.

Other groups
 Minority black and ethnic groups  Older people  People with learning disabilities

When to consider referral

 Seizures not controlled within 2 years  Management unsuccessful with two drugs  Unacceptable side effects  Unilateral structural lesion  Psychological/ psychiatric co- morbidity  Doubt of diagnosis

Whats being done nationally?

 Practice registers  Annual review system  Practice nurse training/liaison with secondary

care.  Templates/ checklists for meeting patients information needs and conducting reviews.

Thank you