Drug-Resistant Epilepsy in Australia: What to Ask For

Drug-resistant epilepsy: the sentence that should change your care

There is a definition in epilepsy that functions like a switch, and most Australians it applies to have never heard it.

Drug-resistant epilepsy is diagnosed when seizures continue despite adequate trials of two appropriately chosen and properly tolerated anti-seizure medications. That is the International League Against Epilepsy definition, and the number is two. Not five. Not ten. Not “we’ll try another one and see.”

The reason the number matters is what the evidence says about what comes next. If two properly chosen medications have failed, the chance that a third, fourth or fifth will produce seizure freedom falls sharply — to a few per cent per subsequent drug. Meanwhile the chance that something else entirely is going on, or that a non-drug treatment would work, is substantial.

So two failed medications is not a reason for a third medication. It is a referral.

The Australian problem is that the referral frequently does not happen. An Australian study found that only 35 per cent of surveyed GPs knew the definition of drug-resistant epilepsy, and that 88 per cent wanted more information about epilepsy. The country has about 550 neurologists, 93 per cent of them metropolitan, and a very small number of tertiary epilepsy centres. There is no national guideline setting out when to refer or how to manage this. In many areas a GP cannot refer directly to a tertiary epilepsy centre — a neurologist must. And some people wait up to 17 years for epilepsy surgery.

Around 30 per cent of people with epilepsy do not respond to medication — roughly 42,800 Australians on the Deloitte figures, and up to 80,000 on the higher prevalence estimates. This guide is about what should happen for them.

What the definition actually requires

The detail matters, because “I’ve tried lots of tablets” is not the same thing as a failed adequate trial, and a neurologist will want to know which.

An adequate trial means:

The right drug for the seizure type. A medication that does not suit the epilepsy type has not failed — it was never going to work. Carbamazepine can aggravate absence and myoclonic seizures; a person with juvenile myoclonic epilepsy whose seizures worsened on it has not had an adequate trial of anything. See epilepsy medications.

An adequate dose, titrated up until either seizures stopped or side effects prevented further increase. A drug stopped at a low starting dose has not been tried.

Adequate duration, long enough to judge the effect against the person’s usual seizure frequency.

Tolerated, meaning the person could actually take it. A drug abandoned in the first fortnight because of a rash or intolerable side effects counts as not tolerated rather than as failed for efficacy — which is a different category and does not count towards the two.

And actually taken. Adherence is the elephant in this conversation, and it is worth being honest about rather than defensive. A drug that was not taken reliably has not been trialled, and the most common reason people have “drug-resistant” epilepsy that turns out not to be is that the medication was not getting in. Saying so is useful information, not a confession.

Seizure freedom means no seizures at all — including focal aware seizures, the ones people call auras, which are seizures and which count.

What a specialist assessment actually does

This is the part people do not realise, and it reframes the whole referral. A comprehensive epilepsy centre is not a place that knows about more drugs. It is a place that reopens the diagnosis.

It asks whether this is epilepsy. This is the big one. Epilepsy Action Australia’s own material states that approximately one in five people referred to a neurologist for drug-resistant epilepsy have functional or dissociative seizures rather than epilepsy — and up to 20 per cent of people with functional seizures also have epilepsy, so somebody can have both and need both addressed. Video EEG monitoring is the only reliable way to sort this out. Years of escalating medication for events that were never epileptic is a common and preventable story. See functional and dissociative seizures.

It asks whether the syndrome was classified correctly. Getting the epilepsy type wrong means getting the drug class wrong, and a person whose generalised epilepsy was treated as focal epilepsy can look drug-resistant while never having received an appropriate medication.

It rescans. An epilepsy-protocol MRI at a specialist centre finds lesions that general-protocol scans miss, and a lesion changes everything — because it opens the surgical question.

It asks whether there is a treatable cause nobody has looked for: autoimmune encephalitis, a metabolic cause, a genetic epilepsy where a specific drug works and others make it worse.

It asks whether surgery is possible. Surgery is suitable for about one-third of people with drug-resistant epilepsy and achieves seizure freedom in an estimated 62 per cent of those who have it. Epilepsy Action Australia notes that more than half of people who have surgery remain seizure-free long term. Those are extraordinary numbers for a chronic neurological condition, and they are available to a minority of the people who could benefit. See epilepsy surgery and the other options.

And it considers the rest of the toolkit — vagus nerve stimulation, deep brain stimulation, the ketogenic and modified Atkins diets, and the newer medications that general neurology may not use often.

Why the referral does not happen

Australian research identified the barriers directly, and they are worth knowing because several of them are things you can work around.

GPs are not equipped to recognise it. Only 35 per cent of those surveyed knew the diagnostic definition, and none had specialist neurology training. This is not a criticism of GPs — epilepsy is one condition among thousands and there are no national guidelines to work from. It does mean the recognition frequently has to come from the patient.

Referral pathways are restricted. A GP can often refer directly to a tertiary epilepsy centre only within the same local health district; otherwise a neurologist has to make the referral. So the pathway has an extra step in it, and each step is a waiting list.

Patients do not know the options exist. People cannot ask for an assessment they have never heard of.

Fear of surgery, based on absent information. The Australian study found people were frightened of surgery because nobody had given them accurate information about its risks, benefits and effects on life. Fear of an unexplained procedure is entirely rational; it is also the main reason people decline an assessment that would not have committed them to anything.

Poor information sharing between clinicians, so diagnostic and treatment opportunities get missed in the gaps.

And a particular Australian dynamic the researchers noted: people are reluctant to return to primary care after long diagnostic journeys, while neurologists tend to regard the GP as the primary provider. The result is somebody falling between the two, on a stable but ineffective medication regimen, for years.

What to do, concretely

Count your medications properly. Write down every anti-seizure medication you have taken, the highest dose reached, how long you took it, why it stopped, and whether seizures continued throughout. This list is the single most useful document you can bring, and most people cannot produce it from memory.

Say the words. “I have had adequate trials of two anti-seizure medications and I am still having seizures. That meets the ILAE definition of drug-resistant epilepsy. Can I be referred to a comprehensive epilepsy centre for assessment?”

That sentence works because it is specific, correct, and demonstrates you know what you are asking for. Ask for it to be written in the notes.

If a GP cannot refer directly, ask them to refer you to a neurologist for the purpose of onward referral, and say that explicitly in the request.

Ask about video EEG monitoring specifically.

Ask for a repeat MRI on an epilepsy protocol if the last one was years ago or done locally on a general protocol.

Ask what your seizure type, epilepsy type and syndrome are, and whether your medication suits them.

Ask whether a surgical assessment is appropriate — and note that an assessment is an assessment. It does not commit you to an operation, and roughly two-thirds of people assessed turn out not to be candidates, which is itself useful information.

Ring a free specialist service. Epilepsy Action Australia on 1300 37 45 37 offers telehealth appointments with an epilepsy nurse, and the National Epilepsy Support Service on 1300 761 487 is the Epilepsy Foundation’s line. Both will tell you where the tertiary centres are and what to push for.

And bring a seizure diary and a video. Documented frequency is what demonstrates that seizures are continuing, and video is what demonstrates what kind they are.

Living with it while you wait

Because referrals take time, and these things matter in the meantime.

Protect the seizure control you have. Missed doses are one of the strongest modifiable risk factors for both breakthrough seizures and SUDEP. Blister packs, phone alarms, a routine tied to something you already do, and a plan for what to do when a dose is missed or vomited.

Take sleep seriously. Sleep deprivation is the most consistently reported trigger across epilepsy types, and it is also the one most under a person’s control.

Know your own triggers and keep the diary, which is how you find them. Alcohol, illness, missed meals, stress, hormonal cycle, and for the small minority who are photosensitive, flashing lights.

Get the SUDEP conversation onto the table, because drug-resistant epilepsy with tonic-clonic seizures is where the risk concentrates, and several of the risk factors are modifiable. See SUDEP.

Have a management plan and, if appropriate, emergency medication, with the people around you trained in both. See epilepsy and seizure support.

Deal with the mood. Depression and anxiety are substantially more common in epilepsy, worse in drug-resistant epilepsy, treatable, and systematically under-addressed. See mental health and memory in epilepsy.

And consider whether the NDIS applies. Drug-resistant epilepsy with functional consequences is the version of epilepsy most likely to meet the access test, and the request has to be built on functional evidence rather than diagnosis. See epilepsy and the NDIS.

One honest caveat

Not everybody with drug-resistant epilepsy has a fixable problem.

Some people go through a full tertiary assessment, have the video EEG, get the epilepsy-protocol MRI, are found to have genuinely multifocal or generalised seizures with no surgical target, try the newer drugs and the devices and the diet, and continue to have seizures. That outcome exists and it is not a failure of effort.

What the assessment achieves even then is worth having: certainty that it is epilepsy, certainty about the type, certainty that surgery is not an option rather than a question hanging over the next twenty years, access to the treatments that might help at the margins, and a plan built around the epilepsy somebody actually has rather than the one they were presumed to have.

The argument of this guide is not that assessment cures people. It is that a third of people with drug-resistant epilepsy could be offered surgery, around 62 per cent of those who have it become seizure-free, one in five referrals turns out not to be epilepsy at all, and some Australians are waiting seventeen years to find out which group they are in.

The seizure diary, and why it is the whole case

Everything in this guide depends on being able to demonstrate that seizures are continuing, and the only instrument for that is a record.

What to capture, each time:

Why each column earns its place. Date and time reveal diurnal and cyclical patterns — morning clustering suggests juvenile myoclonic epilepsy, nocturnal clustering changes the SUDEP risk calculation. Timed duration matters because witnesses overestimate, often substantially. The first few seconds indicate where the seizure starts, which determines whether surgery could ever be an option. Preceding factors identify your own triggers, which is how you get some control back. And the medication column is what distinguishes genuine drug resistance from doses that were not getting in.

Count the focal aware seizures too — the ones people call auras. They are seizures, they count towards seizure freedom, and leaving them out of the diary makes control look better than it is.

Use whatever you will actually use. A notebook, a notes app, or one of the epilepsy diary apps. The best system is the one still being filled in at week eight.

Add video, with consent. The highest-value thing a family can contribute, and the thing that most often changes a diagnosis.

And bring a one-page summary to appointments rather than the raw diary: seizures per month over the last six months, the types, the medication history with doses and reasons for stopping, and anything that has changed. A neurologist with seven minutes can act on that page. They cannot read eight months of handwriting.

Where the tertiary centres are, and how to get into one

Australia’s comprehensive epilepsy centres are attached to major public hospitals in the capital cities. They run video EEG monitoring units, epilepsy-protocol MRI, neuropsychology, and multidisciplinary meetings where surgical candidacy is decided — and between them they are the only places in the country where the full assessment described in this guide happens.

The practical consequences of that geography:

If you live outside a capital city, you will probably travel. That is worth knowing early rather than discovering it as an obstacle. Patient travel assistance schemes exist in every state and territory for people who must travel for specialist treatment not available locally, and they are under-claimed. Ask the referring doctor’s practice or the hospital social worker about the scheme in your state.

Telehealth now covers a reasonable share of the follow-up, even where the initial assessment and any monitoring admission require attendance in person.

The referral route has an extra step in many areas. A GP can frequently refer directly to a tertiary centre only within the same local health district, and otherwise a neurologist has to make the referral. So the sequence is often GP, then general neurologist, then tertiary centre — and each step has its own waiting list. Knowing that means asking the GP to refer you to a neurologist specifically for onward referral, and saying so in the request, rather than starting again at the second appointment.

What to do while waiting:

Ask to be put on a cancellation list. Monitoring admissions get cancelled, and people who have said they can come at short notice get the bed.

Get everything assembled in advance — the medication list, the seizure diary, the videos, copies of previous EEG and MRI reports. An appointment with the full history in hand achieves in one visit what otherwise takes three.

Ask what can be done locally in the meantime. A repeat EEG, a current MRI, or baseline bloods can often be arranged near home so that the tertiary appointment is spent on decisions rather than ordering tests.

And ring a free epilepsy nurse to find out which centre covers you. Epilepsy Action Australia on 1300 37 45 37 and the National Epilepsy Support Service on 1300 761 487 both know the map, and neither will charge you to explain it.