Functional and Dissociative Seizures Explained

Functional and dissociative seizures: one in five referrals

Epilepsy Action Australia’s own fact sheet contains a figure that should reshape how Australia approaches difficult epilepsy: approximately one in five people referred to a neurologist for drug-resistant epilepsy have functional or dissociative seizures.

Not epilepsy. Something else — real, involuntary, frequently disabling, and treated with an entirely different approach.

And it works in both directions: up to 20 per cent of people with functional seizures also have epilepsy, so a person can have both and need both addressed, and discovering one does not disprove the other.

The reason this matters so much is the cost of getting it wrong. Somebody with functional seizures who is treated as having epilepsy accumulates anti-seizure medications they do not need and whose side effects they do get, gets admitted repeatedly, sometimes gets emergency medication and intensive care for events that were never status epilepticus, loses their licence, loses work, and — worst — never receives the treatment that would have helped. Years of this is a common story, and Epilepsy Action Australia notes bluntly that a correct diagnosis avoids being unnecessarily treated with anti-seizure medication.

This guide covers what functional seizures are, how they are distinguished from epileptic seizures, what the diagnosis means and does not mean, how they are treated, and how to handle the thing families find hardest — being told the seizures are not epilepsy without being told the person is making them up.

What they are

Functional or dissociative seizures (FDS) look like epileptic seizures but do not arise from abnormal electrical activity in the brain. They are a symptom of Functional Neurological Disorder (FND), a condition in which the nervous system’s functioning is disrupted without the structural damage that would show on a scan.

They are not epilepsy, and they are not a type of epilepsy.

The names you will encounter, all describing the same thing: non-epileptic seizures, non-epileptic attack disorder (NEAD), psychogenic non-epileptic seizures (PNES), dissociative attacks, and the older term conversion disorder. The field has moved towards “functional” and “dissociative” because the older terms carried implications that were both unhelpful and inaccurate.

The mechanism, as currently understood. They are thought to involve dissociation — a process in which the brain, under stress or threat, disconnects from aspects of experience. It is an involuntary protective mechanism that has become maladaptive, operating below the level of conscious control.

What that means in plain terms, and it needs saying directly: the person is not doing it on purpose. They cannot stop it by deciding to. This is the single most important sentence in this guide, because the thing people hear when told their seizures are not epileptic is “you are making this up,” and that is not what is being said. Functional seizures are as involuntary as epileptic ones. What differs is the mechanism, and therefore the treatment.

Common contributing factors, per Epilepsy Action Australia: injury or pain, anxiety or depression, and past trauma. Note that not everybody with functional seizures has a trauma history, and the absence of one does not rule the diagnosis out — this is a frequent misconception that delays diagnosis.

What the symptoms can include, beyond seizure-like events: blackouts or fainting-like episodes, weakness or loss of movement, and unusual movements or shaking.

And they can begin at any age.

How they are distinguished from epileptic seizures

Video EEG monitoring is the definitive test and the only reliable one. It records brain activity alongside video of the event, so a typical event captured during monitoring with no corresponding electrical change settles the question. The limitation is that events do not always occur during the admission.

An eyewitness account is also very valuable, and so is phone video — which, as with epilepsy, is the most useful thing a family can contribute.

There is no simple test that confirms functional seizures, and the diagnosis is made positively, on the features of the events, rather than by exclusion alone.

Features that point towards functional seizures, per Epilepsy Action Australia:

• Anti-seizure medications do not stop or reduce the seizures — which is precisely why these people end up in drug-resistant epilepsy clinics
• Events are often triggered by emotional stress, or occur in front of others
• The pattern is inconsistent with epilepsy, may change over time, or lasts longer than typical epileptic seizures
• There is a history of trauma, abuse, anxiety, depression or PTSD

Other features clinicians weigh, from the broader literature: eyes closed during the event where epileptic convulsions usually have them open; side-to-side head movement; asynchronous, variable or thrashing limb movements rather than the rhythmic symmetrical pattern of a tonic-clonic seizure; gradual onset and offset; preserved awareness during apparently generalised movements; recall of the event; prolonged duration with rapid return to normal afterwards; weeping or speaking during the event; and pelvic thrusting or arching.

And the features that are not useful discriminators, because people assume they are: incontinence, tongue biting and injury can all occur in functional seizures, so their presence does not prove epilepsy.

A separate category worth knowing: physiologic non-epileptic events, caused by temporary bodily changes — the provoked or reactive seizures. These usually do not recur once the trigger is removed or treated, and they are a different thing again from both epilepsy and functional seizures.

Getting told, and the way it is usually handled badly

How this diagnosis is delivered substantially determines whether treatment works, and it is frequently delivered badly.

What goes wrong. The person is told their seizures are “not real,” or “psychological,” or “nothing to show on the tests,” or that there is “no neurological cause.” Medication is stopped abruptly. No treatment is offered. They are discharged from neurology with nowhere to go. And the entirely predictable result is that they conclude they have been disbelieved, reject the diagnosis, and continue as before.

Epilepsy Action Australia names this consequence directly: “A common mistake is to deny the diagnosis and not follow up with the right treatment,” and notes that denying the diagnosis and not pursuing treatment may allow the condition to continue.

But rejecting a diagnosis that was delivered as an accusation is not unreasonable behaviour. It is a predictable response to being told, in effect, that nothing is wrong with you while you are having seizures.

What good delivery looks like: the events are real and involuntary; they have a recognised name and a recognised mechanism; the brain’s functioning is disrupted rather than its structure damaged; this is a condition with treatment and the treatment works for many people; early diagnosis and treatment improve the chance of full recovery; and here is the referral.

If you have been told badly, which many people have, two things are worth knowing. The diagnosis can be correct even when the explanation was insulting. And you are entitled to ask for it again properly — ask for a longer appointment, ask what FND is, ask what the treatment pathway is, and ask for the referral.

Treatment

Treatment exists, it works for many people, and almost none of it is medication.

A multidisciplinary team, which Epilepsy Action Australia describes as potentially including physiotherapists, psychologists, occupational therapists, psychiatrists, speech pathologists, social workers and nurses.

Understanding the condition first. The first step in treatment is genuinely a clear understanding of what is happening — and that is not a soft preliminary, it is the foundation. People who understand the mechanism improve more than people who do not.

Educating family and friends, which Epilepsy Action Australia identifies as helping with support. The people around somebody with functional seizures frequently do the opposite of what helps, with the best intentions.

Physical and psychological therapies, tailored to the symptoms. Psychological approaches with evidence in functional seizures include cognitive behavioural therapy adapted for FND. Physiotherapy has a central role where there are motor symptoms.

Goals set collaboratively with the team.

And medication is generally not helpful. Under a neurologist’s supervision, anti-seizure medications can be gradually weaned — gradually, and under supervision, because abrupt withdrawal is dangerous. They must be continued if epilepsy coexists, which it does in up to 20 per cent of people with functional seizures. Medication may still be appropriate for co-existing depression or anxiety.

Outlook. It depends on age, mental health, whether epilepsy coexists, how long the functional seizures have been present, and the person’s willingness to accept the diagnosis and engage with treatment. Many people improve. Recovery is difficult for some. Early diagnosis and treatment improve the chance of full recovery, which is the strongest argument for getting this right quickly rather than after a decade.

The access problem, honestly: specialised FND services in Australia are limited. Online self-help resources and peer support are available, and Epilepsy Action Australia offers support by phone, email and telehealth appointments with an epilepsy nurse on 1300 37 45 37.

Practical matters

Driving. People with functional seizures should not drive until they have been event-free for a defined period, and if events are undiagnosed, driving should stop until the diagnosis is clear. This is the same practical consequence as epilepsy and it applies regardless of mechanism — an event at the wheel is an event at the wheel. See driving, work and independence.

Emergency presentations. This is where real harm happens. A prolonged functional seizure can be treated as status epilepticus, leading to escalating doses of benzodiazepines, intubation and intensive care admission for an event that was never epileptic. The protection is a written plan, carried by the person, stating the diagnosis, that prolonged events are expected and are not status epilepticus, what helps, and who to contact. A letter from the neurologist or FND service, in the wallet and on the medical record, prevents a great deal.

For families and support workers during an event: stay calm, keep the person safe from injury, do not restrain them, do not crowd them, speak calmly and reassuringly, and give them time to recover. Do not try to bring them out of it forcefully. If there is a written plan, follow it. If the diagnosis is uncertain, or this event is different from their usual pattern, treat it as a seizure and follow seizure first aid — and call 000 if the person is injured, in water, not breathing normally, or if you are in any doubt.

And where epilepsy coexists, both need plans, and the people around the person need to know how to tell the two event types apart. That is a legitimate thing to ask the specialist team to write down.

Work and the NDIS. Functional neurological disorder can cause substantial, persistent functional impairment, and where it does, NDIS access is assessed on functional evidence like anything else. It is harder than for a named condition on the access lists, and the same principles apply as for epilepsy. See epilepsy and the NDIS.

What not to say

Short, because it matters and because people get it wrong with good intentions.

Do not say the seizures are not real. They are real. The mechanism is different.

Do not say they are “just stress” or “all in your head.” The condition involves the brain’s functioning, which is not the same as the events being imaginary or chosen.

Do not suggest the person could stop if they tried. They cannot.

Do not go looking for the trauma. Not everybody has one, pursuing it as an amateur causes harm, and that work belongs with a psychologist if it belongs anywhere.

Do not treat the diagnosis as better news than epilepsy. It is frequently more disabling and considerably harder to get treated in Australia, and telling somebody they should be relieved lands badly.

And do not stop anybody’s medication on the strength of a diagnosis you heard about. Weaning is done by a neurologist, gradually, and continued where epilepsy coexists.

Where this leaves families

The position families are put in by this diagnosis is genuinely difficult, and it is worth naming because almost nothing written about functional seizures addresses it.

You have frequently spent years in an epilepsy framework. Learning seizure first aid, counting events, managing medication, calling ambulances, dealing with schools and employers — all of it organised around a condition the person turns out not to have, or not only to have. Being told the framework was wrong is disorienting even when the news is accurate.

The instincts you built are now partly wrong. The urgency, the medication, the ambulance, the treating-each-event-as-dangerous — much of that was correct for epilepsy and is counterproductive here, where a calm, low-key, unalarmed response is generally what helps. Unlearning a trained emergency response is hard, and nobody should feel foolish about finding it so.

You may not believe it. That is extremely common, and it is frequently a response to how the diagnosis was delivered rather than to the diagnosis itself. If it was explained as “nothing is wrong” or “it’s psychological,” rejecting it was reasonable. Ask for it to be explained again, properly, by somebody who can describe the mechanism.

And other people will be worse. Relatives, employers and sometimes clinicians will hear “functional” and understand “attention-seeking.” Educating the people around the person is something Epilepsy Action Australia specifically identifies as helping, and it frequently falls to the family.

What to actually do:

Get the written letter from the neurologist or FND service stating the diagnosis, that prolonged events are expected and are not status epilepticus, what helps, and who to contact. Carry it, and put it on the medical record. This single document prevents the most harm.

Agree a household response, written down, so everybody does the same calm thing.

Keep a record of events, including what preceded them, because triggers are identifiable and useful.

Where epilepsy also coexists, ask the team to write down how to tell the two event types apart.

And get support for yourself. Epilepsy Action Australia on 1300 37 45 37 will talk to families, not only to the person, and peer support exists for FND specifically.

When somebody has both

Up to 20 per cent of people with functional seizures also have epilepsy, which creates the most difficult version of this situation and one almost nothing is written about.

Why it is hard. Two different conditions, two different mechanisms, two entirely different correct responses — and events that may look similar to anybody watching. Treat an epileptic seizure as functional and somebody can go into status epilepticus untreated. Treat a functional event as epileptic and somebody gets escalating benzodiazepines and sometimes an intensive care admission they never needed.

What makes it manageable is getting the distinction written down by the people who established it.

Ask the specialist team for a written document setting out:

What each event type looks like, specifically and observably. Duration. Whether the eyes are open or closed. Whether the movements are rhythmic and symmetrical or variable and asynchronous. Whether awareness is preserved. How the event begins and ends. What the recovery looks like.

Which features mean “treat this as epilepsy.”

What to do for each type, including whether and when emergency medication applies — it will apply to the epileptic events and not to the functional ones.

When to call 000 for each, which will be different.

And the default rule when nobody can tell. This matters most, and the answer is almost always to treat it as epilepsy and follow seizure first aid, because the cost of under-treating an epileptic seizure is higher than the cost of over-treating a functional one.

Keep the anti-seizure medication. Where epilepsy coexists, the medication continues — Epilepsy Action Australia is explicit about this. The weaning that applies to pure functional seizures does not apply here.

Keep separate counts. A diary that records the two event types separately is the only way to tell whether epilepsy treatment is working, because lumping them together makes an effective medication look like a failure.

And make sure the emergency letter covers both, so a hospital reading it at 2am understands that this person has epilepsy and functional seizures, and knows which is which.