3. Questions to ask in the consultation
Examples
Ensure the patient is aware that the ASM is to try to control their seizures rather than cure the condition itself and that in all likelihood they will need to be on treatment long-term. It is possible for some people to come off ASMs but that would not be considered until they have been seizure-free for at least two years. Many patients will be on ASMs for life.
The Medicines and Healthcare products Regulatory Agency (MHRA) has classified ASMs into three categories depending on whether or not they need to be prescribed by brand. Buccal midazolam should always be prescribed by brand (Epistatus or Buccolam) as the carer will have been trained to use the one product.
Almost all patients will require initial titration of their ASM and, if being transferred from another drug, there may be a cross-titration as one drug comes out and the other comes in. This can be very confusing for patients and your support will be invaluable. Hopefully they will have been given set dates for increases/decreases to happen but if not, then an individualised calendar with dates will be useful
- If drugs are started once a day before increasing to multiple dosing throughout the day, then taking initially at night can be helpful especially if drowsiness or dizziness is likely. This may also be helpful if seizures have been occurring at night
- As the person moves to twice daily dosing your advice on when it is best to take the doses will be useful. Ideally, twice daily dosing will be spaced 12-hourly; however lamotrigine in particular can cause insomnia, so asymmetric dosing may be recommended whereby more dose is given during the day and less in the evening. This regimen might be used for other drugs where there are side-effects or when trying to avoid seizures at a particular time of day.
For many reasons, some patients do not start medicines immediately. There could be fear surrounding side-effects, poor understanding of what the medicine is being used for or lack of acceptance of the diagnosis. Use this consultation to determine any concerns and provide assurance if possible.
Up to 70 per cent of patients could be seizure-free if they took their medicine as prescribed but the figure currently stands at around 50 per cent, usually due to issues with adherence
- Cognitive decline and/or memory loss is important but if the person has had a seizure, they might need to sleep it off for several hours, meaning they miss their next dose
- Adverse drug reactions are common. If someone is suffering from side-effects it may be possible for them to slow their up-titration to try to give themselves more time for side-effects to settle before the next dose increase
- Compliance aids including phone apps and timers/reminders can support medicine-taking
- There may be a package of care set up with carers who also help with medicines administration, and family members can help to prompt with timely administration of medicines
- In some cases, patients may be prescribed additional medicines – for example, vitamin D in those taking enzyme inducing ASMs and valproate
- Women may have had a change to their contraceptive cover, especially if they are taking valproate, and need to be engaged with the Pregnancy Prevention Programme. Those planning a pregnancy or who are pregnant will need to take folic acid 5mg daily up until the twelfth week of pregnancy. Ensure they understand why these medicines are important and how long they should be taken for.
In the early stages of treatment with their new medicine, the person with epilepsy may still continue to have seizures, which can lead to them thinking that the new drug isn’t working. This is especially dispiriting if they are having side-effects. Each ASM has a usual maintenance dose and it isn’t until the person has been taking that dose for a number of weeks before it can be said if the drug is working or not.
Seizures arise irregularly so it can be hard to tell whether the medication is having an effect or whether it is just that the person isn’t experiencing any seizure activity at that time. Sometimes people forget to take their medicines and, because they don’t have a seizure, they think they no longer need the medication –which is very unlikely to be the case
People sometimes report that while they are still having seizures as they up-titrate their ASM, the seizures change, perhaps becoming less intense. This is often a sign that they will respond once the dose is increased, so continued medicine-taking can be encouraged
Paradoxically, nearly all ASMs include seizure worsening as a side-effect. If starting an ASM triggers more seizures, referral back to the specialist is required as soon as possible
It could be suggested in the early stages that the patient keeps a seizure diary. This can help to determine if the medication is indeed working.
Use the PIL to point out common side-effects of ASMs and explain what “common” means in this context
Patients should be advised to report immediately any rash that occurs in the first eight weeks of starting lamotrigine and for eight weeks after a dose increase
Women and girls of childbearing potential who believe they could be pregnant require immediate referral to their specialist regardless of which ASM they are taking
Any patient taking an ASM who experiences a lowering of mood such that they are suicidal requires immediate referral. Mood, and if necessary, suicide should be sensitively asked about specifically
Patients taking levetiracetam in particular are asked to report any changes in mood, especially an increase in aggression or anger/irritation. Often the patient is unaware of this but the person who they live with or who cares for them may have noticed
Suddenly stopping an ASM can lead to rebound seizures so patients who take medication intermittently can unknowingly be triggering more seizures – another reason for encouraging good adherence where possible.
Some ASMs are available as liquids, dispersible tablets or granules. These can be particularly helpful if patients are PEG fed, which may be the case with some LD patients.
It is possible that compliance aids could help but not all medicines are suitable to be put in multi-compartment devices. For example, Epilim is hygroscopic, so cannot be taken out of its silver foil packaging.
Pharmacists can help identify any OTC medication that might lower the seizure threshold (e.g. some antihistamines, antimalarials) and so should be avoided. Likewise, advise on any OTC medications that might interact (e.g. sedating antihistamines, which could enhance the drowsiness effect of the ASM, or ibuprofen, which could enhance the hyponatraemia caused by sodium valproate).
As with all patients, advice on healthy eating and weight loss (if BMI > 25kg/m²) is helpful. Some ASMs can promote weight gain (e.g. valproate). Some people with epilepsy may experience a seizure if they go without food. Most people with epilepsy can undertake most forms of physical activity without any problems, although some forms of exercise may not be suitable or require additional precautions if the person is still having seizures (e.g. patients still having seizures should not swim alone)
Drinking more than two units of alcohol in 24 hours can increase the risk of having seizures. For most people, the risk is highest between six and 48 hours after stopping drinking. Alcohol can interact with some ASMs.
Driving and the DVLA
Someone who has had a seizure will have to notify the DVLA and surrender their licence. They can reapply if they have been seizure-free for a year. If a seizure has arisen due to a change in medication, then potentially the person can reapply after six months. People who are still having seizures, but where for the last three years they have only ever been associated with sleep, can re-apply.