Supporting medicine management in patients with epilepsy

Managing medications for epilepsy presents unique challenges, demanding a careful balance of tailored care, patient education and ongoing support.

Epilepsy Action Australia estimates that more than 250,000 Australians are currently living with epilepsy. The condition is not necessarily lifelong and approximately 3% of Australians will experience epilepsy at some point in their lives. 

Anti-seizure medications (ASMs) are the most common form of treatment for epilepsy, and there are currently more than 20 ASMs in use in Australia. ASMs are selected based on age, sex and side effects, and can be prescribed as tablets, syrups or liquids.

Since being diagnosed with epilepsy in 2014, I have taken lamotrigine to manage my seizures. As is the case with one-third of people with epilepsy, my seizures are not fully controlled with medication, but lamotrigine reduces the risk of both tonic-clonic (convulsive) and partial seizures by slowing the electrical signals in my brain that cause them.

Having experienced some complications with side effects from my medication, particularly after dosage increases, I have often relied on pharmacists to guide me in managing my medication. 

By advising on the suitability of ASMs, their side effects and interactions, and providing medicine reviews where suitable, pharmacists can make a significant difference to the overall wellbeing and quality of life of people living with epilepsy.

Difficulties in medicine management for epilepsy

Patients can experience a range of side effects from epilepsy medicines. When I initially started taking lamotrigine, I experienced sluggishness and skin breakouts, which thankfully improved over time. A dosage increase a few years later had the same effect. 

While side effects vary by medicine, other common side effects from ASMs can include dizziness, tiredness and blurred vision.

To mitigate these symptoms, patients may be advised to start on a low dose and build up their dosage over time (if appropriate).

Drug interactions should also be carefully monitored. For instance, some ASMs can interact with oral contraceptives and make them less effective. Patients may therefore be advised to switch to other forms of contraception such as IUDs. 

Certain medicines, such as chlorpromazine and other antipsychotics, can also increase the risk of seizures in people with epilepsy.

Challenges can also arise when treating patients with epilepsy who are pregnant or trying to conceive, says consultant and credentialed pharmacist Adeline Tan MPS.

“When a woman with epilepsy is trying to get pregnant, you may need to consider whether their medication is appropriate in pregnancy, and other [aspects] such as how it could affect breastfeeding.” 

Pharmacists should also be mindful that some ASMs can increase the risk of osteoporosis and fractures, she adds.

“Sodium valproate can reduce bone density, so it’s essential to monitor that. If a patient isn’t taking adequate calcium and vitamin D, supplementation might be necessary.”

The role of pharmacists

Patient education is crucial. Epilepsy can be a confusing illness; it manifests differently for different patients, it’s often unpredictable, and the cause of the disease is still unknown in about 50% of cases globally, mine included. 

Pharmacists can assist with medicine management for patients with epilepsy in a number of ways, including advising on drug interactions and side effects.

In fact, in the months following my diagnosis, I learned more about the condition at my local pharmacy than I did at my doctor’s office. Pharmacists educated me on building a regimen with my ASMs, how they worked and the adjustments I might have to make to my lifestyle to accommodate them, including keeping alcohol intake to a minimum and eating consistently.

I’d had my first tonic-clonic seizure shortly after running on a treadmill so I was also advised to do gentler forms of exercise such as walking to avoid straining my body.  

Having been somewhat blindsided by the diagnosis and confused about what it meant for me, I can’t overstate the value of a knowledgeable, non-judgemental ear to provide advice like this. 

Some patients may also have very specific needs that a pharmacist can help to manage, such as those with difficulty swallowing.

“If a person can’t swallow their medicines, that might involve changing it to [a] liquid. With some anti-epileptic medicines, like sodium valproate, converting from tablets to liquid might involve careful calculations to work out the equivalent dose,” says Tan.

“If you have someone taking high doses of these liquid medications, there can be a certain element of artificial sugar like sorbitol inside the formulations [to consider] as well. Large amounts of sorbitol can cause diarrhoea, which may be problematic if the person is already taking a regular laxative to help with constipation.”

Where feasible, Home Medicines Reviews (HMRs) can be a hugely valuable resource for people with epilepsy, she says.

“HMRs are particularly beneficial for [managing] polypharmacy and medicines with a low therapeutic index,” she says.

“[They] allow the pharmacist to sit down with the patient, go through their medicines and ensure that those medicines are used safely and effectively. This includes identifying any drug interactions, or whether the person needs formulation changes. That’s where pharmacists can come in with their skills and resources to answer questions and provide additional information.”

HMRs are also a great opportunity to provide any necessary guidance to those caring for the patient.

“It’s important to educate carers and support workers, especially when it comes to complex medication regimens. We want to make sure they understand how to use and administer the medicines correctly.”

The pressing need for continued dispensing

Currently, epilepsy medications are not included on the list of medicines that pharmacists can supply under the Pharmaceutical Benefits Scheme (PBS) Continued Dispensing Determination. 

However, the nature and unique challenges of the condition mean it’s imperative that this omission be reconsidered.

One of the primary reasons for this is the importance of consistent dosing with epilepsy medicines. I am careful to take my medicine at exactly the same time each morning and evening, as just a few hours’ difference can lead to feelings of dizziness and increase the risk of seizures. 

“If a patient has been on the medicine for a long time and they’re stable, it’s really important to ensure the medicine continuity is not interrupted,” says Tan. “[These medicines] have a low therapeutic index – you need to keep your levels consistent.”

Particularly for those living in rural communities, the omission of epilepsy medicines from continued dispensing can put patients at serious risk. 

“People try to be organised, but life happens, and sometimes people run out of their medications. They may also be unable to get a timely appointment with their GP or specialist,” says Tan. 

“Pharmacists are allowed to [dispense a small amount as] an emergency supply [depending on the local jurisdiction regulation]. But what happens if the person is getting all their prescriptions through a specialist, and they’re in a regional area where they can’t get a prescription quickly?”

Beyond the risk of physical harm, including the potential for falls or injuries, seizures can get in the way of life in a number of other ways. 

For one thing, it can take days to regain full focus and recover from memory loss after a seizure or cluster of seizures.

What’s more, people with epilepsy can generally only be issued a driver’s licence if they have been free of seizures for at least 12 months. I know first-hand how frustrating it can be to reach the 10- or 11-month mark only to have a tonic-clonic seizure that bars me from driving for another year. 

While I’m fortunate to have easy access to public transport links in Sydney, it’s once again rural patients and communities that end up suffering most from these restrictions. 

“You have the immediate effects on the healthcare system – it’s a huge burden economically and personnel-wise. And then you’ve got the impact on people’s lives, their health and the inconvenience it causes, like [potentially] not being able to drive,” says Tan.

One promising industry development in this area is the recent addition of midazolam oral liquid to the PBS, improving accessibility to the drug. 

But access is just part of the equation. Managing epilepsy is rarely straightforward, and requires continual monitoring, careful adjustments and tailored support. The expertise and guidance of pharmacists are often what can turn a prescription into an effective treatment, allowing those of us with the condition to live with greater confidence and control.