Management of Epilepsy in Primary Care and the Community. Carrie Burke, Epilepsy Specialist Nurse

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1 Management of Epilepsy in Primary Care and the Community Carrie Burke, Epilepsy Specialist Nurse

2 Epilepsy & Seizures Epilepsy is a common neurological disorder characterised by recurring seizures (NICE, 2012) An epileptic seizure is the clinical manifestation of an abnormal & excessive discharge of a set of neurons in the brain (NICE, 2012)

3 Many people have a one off seizure this is not epilepsy 1 in 20 people have a seizure at some time in their life 1 in 103 people have epilepsy (600,000 people in the UK)

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5 Tonic Clonic

6 Myoclonic

7 Absence

8 Atonic

9 Temporal Lobe Seizure

10 Frontal Lobe Seizure

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13 TREATMENT FOR EPILEPSY Antiepileptic drugs (AEDs)

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16 Formulation Switching of AEDs Category 1 Phenytoin, carbamazepine, phenobarbital, primidone For these drugs, doctors are advised to ensure that their patient is maintained on a specific manufacturer s product. Category 2 Valproate, lamotrigine, perampanel, retigabine, rufinamide, clobazam, clonazepam, oxcarbazepine, eslicarbazepine, zonisamide, topiramate For these drugs the need for continued supply of a particular manufacturer s product should be based on clinical judgement and consultation with patient and/or carer taking into account factors such as seizure frequency and treatment history.

17 Category 3 - Levetiracetam, lacosamide, tiagabine, gabapentin, pregabalin, ethosuximide, vigabatrin For these drugs it is usually unnecessary to ensure that patients are maintained on a specific manufacturer s product unless there are specific concerns such as patient anxiety, and risk of confusion or dosing errors.

18 Rescue Medication Buccal midazolam 1 st line recommended by NICE Only licensed in children (Buccolam/Epistatus pre filled syringes) NICE (2012) treatment should be administered by trained clinical personnel, or if specified by an individually agreed protocol drawn up with the specialist, by family members or carers with appropriate training

19 TREATMENT FOR EPILEPSY Antiepileptic drugs (AEDs) Common Womens Issues Contraception enzyme inducing drugs, lamotrigine issues Pregnancy risks of seizures, risk of medication, Lamotrigine & phenytoin levels may be affected, epilepsy & pregnancy register Women of child bearing potential and young girls likely to need treatment into their childbearing years risks & benefits of individual drugs, limited data on newer drugs, use of sodium valproate (Epilim) esp. in higher doses & polytherapy, offer folic acid (5mg)

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21 TREATMENT FOR EPILEPSY Antiepileptic drugs (AEDs) Bone Health In 2009, the Medicines, Healthcare Products Regulatory Authority (MHRA) summarised various studies of people taking AEDs, who had a risk of broken bones. They advised that people taking the following older drugs long-term were at risk of osteoporosis: Carbamazepine Phenytoin Primidone Sodium valproate There is very little research to show whether some of the newer epilepsy medicines can cause BMD problems. But a study looked at a group of 168 people who had taken epilepsy medicines for more than two years. All 168 people had their BMD measured, to see if they were risk of damage to their bones. The study found that as well as the older medicines listed above, people taking levetiracetam (Keppra) long-term had a high risk of their mineral bone density being lowered. We are now aiming to check vitamin D levels in all epilepsy patients particularly those taking enzyme inducers

22 OTHER TREATMENT OPTIONS Surgery Vagus Nerve Stimulation (VNS) Ketogenic Diet (children & young people)

23 SUDEP (sudden unexpected death in epilepsy) Every year, roughly one in every thousand people with epilepsy will die suddenly with no obvious cause. This is what we call Sudden Unexpected Death in Epilepsy or SUDEP The risk of SUDEP is low, but will vary from person to person

24 SUDEP - RISK FACTORS Any of the following things are thought to increase a person s risk of SUDEP: Having uncontrolled generalised tonic-clonic seizures (the more frequent, the higher the likelihood of SUDEP) Not taking epilepsy medicines as prescribed Having seizures that are not controlled by epilepsy medicines Having sudden and frequent changes to epilepsy medicines Being a young adult (in particular male) Having sleep seizures Having seizures when alone Drinking large amounts of alcohol

25 SUDEP - PREVENTION The most effective way to reduce the risk of SUDEP is to have as few seizures as possible There is some evidence that nocturnal supervision in the form of room sharing or monitoring devices may reduce the risk of SUDEP, although this requires further study For more information on SUDEP see

26 Driving & Seizures Stopping or changing your medication If it is decided that the person can withdraw their AEDs, the doctor may advise to stop driving whilst coming off AEDs and for six months after stopping AEDs. During this time, if there is a seizure, they will need to stop driving and tell the DVLA. If they then go back on to the same medication and remain seizurefree for six months, they can apply for a new licence. This also applies if they have a seizure during changes to their medication that have been agreed with a doctor. An exception to this is if they have an awake seizure that does not affect consciousness or the ability to drive or an asleep seizure. They will still need to tell the DVLA about the seizure, but may still be allowed to drive and not lose their licence, depending on the type of seizures that they have had previously

27 Isolated seizures The DVLA s definition of an isolated seizure is a first and single seizure with no history of seizures, or a number of seizures within a 24 hour period that are the person s first ever seizures. Isolated seizure: Group 1 licence Stop driving for six months from the date of the seizure, and tell the DVLA. May be allowed to start driving again after six months if they have no further seizures and there are no clinical factors (such as a scar on the brain) or results from investigations (such as an EEG) which suggest a high risk of having another seizure. Isolated seizure: Group 2 licence Stop driving for five years from the date of the seizure, and tell the DVLA. May be allowed to start driving again after five years if there are no clinical factors (such as a scar on the brain) or results from investigations (such as an EEG) which suggest a high risk of having another seizure. They must not have been prescribed anti-epileptic drugs during the five years before applying for their licence.

28 Resources Epilepsy Action Epilepsy Society Seizure Tracker SUDEP Action UK Epilepsy & Pregnancy Register ILAE Epilepsy Diagnosis

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