Epilepsy: myths, stigma and medication management

epilepsy: woman wearing purple parka

Australians are becoming more aware of epilepsy, but there are still myths and stigmas to be broken down, says Yvette McMurtrie, Client Services Coordinator at Epilepsy Queensland – and significant medication adherence problems where pharmacists can help.

“With Wally Lewis being our patron, and with work we’re doing to raise awareness, more people now know about epilepsy but not many understand its complexity, the impact it can have on people or the huge spectrum that represents the condition,” Ms McMurtrie told the AJP.

The organisation is currently planning awareness and fund-raising activities for Purple Day (26 March) including the Purple Pharmacy promotion (hotly contested in Queensland, with Coral Coast pharmacies in particular throwing down the gauntlet each year – pictured is the Burrum Street Coral Coast Pharmacy), a purple procession through Southbank and lighting of key Queensland landmarks in purple.

Australians, including pharmacies, are encouraged to buy or sell Purple Day merchandise and sign the “Purple Pledge,” an Epilepsy Queensland initiative to raise awareness and dispel myths about the condition.

“Many people don’t have much awareness of focal seizures, for example,” Ms McMurtrie says. “These can take years to diagnose in some people – and it’s often not until it generalises that people know they have epilepsy.

“They may experience déjà vu, or twitching in one part of the body, or notice a funny taste in their mouth and not even know it’s a seizure. Some have said their GP has told them that it’s not a seizure unless they’re unconscious. That’s just not true.

“People can have seizures where they could be wandering around and to an outsider, look and act quite conscious. But there are lots of different levels of awareness.”

Most Australians now understand that they should not hold somebody who is having a seizure down, nor should they put anything in their mouth. But they don’t always know when help should be sought.

“While most people are pretty good about calling an ambulance, most don’t know that a seizure is not a medical emergency until it’s gone for five minutes or more,” Ms McMurtrie says. “Most seizures will stop on their own. They can be quite short. It’s only the occasional seizure that will go for longer than five minutes.

“But if you know this is the person’s first seizure, or if you don’t know whether they have a diagnosis of seizures, call the ambulance immediately.”

She says one important point for pharmacists and pharmacy assistants is not to encourage brand switching with anti-epilepsy medication.

“Even if the doctor has ticked, the box, it’s not recommended to change brands – the problem isn’t with generics as such, it’s that whatever you start on, that you have good seizure control on, you stay on.

“If you do switch brands, your level of the medication could potentially change and that’s enough to trigger a seizure.

“Timing is also important. In order to keep medication levels constant, we recommend people try to stick to a 12-hourly routine as much as possible.”

This can be facilitated by having device or alerts in place to remind people to take their medication at the same time each day.

“Some people with epilepsy have poor memory, so something like using pillboxes or Webster-paks can be very helpful – they can see what they’ve taken and what they havent’.

“Pharmacists will also know how frequently they fill their script. So they can say, ‘I notice you’re two weeks late to fill this script, are you occasionally missing doses?’

“There’s plenty of reasons people’s adherence might not be good: they could be forgetful, they don’t like how the medication makes them feel sick, or tired, or nauseous; they don’t want their friends to know they have epilepsy, so they won’t take it in front of someone else. It could be financial; they want to try and stretch out the script. Pharmacists can talk about the dangers of missing medications like this.”

The effects of a breakthrough seizure can be significant, she says.

“If somebody’e well-controlled, employed, they’re driving a car, a breakthrough seizure can be devastating. If you have a breakthrough seizure you need to take some time off driving again, for example.”

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