Mental Health and Memory in Epilepsy

Mental health and memory in epilepsy: the part that is not the seizures

For a lot of people with epilepsy, the seizures take a few minutes a month and the rest of it takes everything else.

The Epilepsy Foundation’s Australian guidance puts the figures at around 50 per cent of people with epilepsy experiencing depression and about 20 per cent experiencing anxiety. An Epilepsy Action Australia survey found about 20 per cent of respondents with depression — double the general population rate — roughly one in six with anxiety, and over half rating their quality of life as low to average. The numbers vary with how they are measured. The direction does not, and it is consistent across every study: depression and anxiety are substantially more common in epilepsy than in the general population.

Memory complaints are close to universal, and they are a mixture of three things — the epilepsy, the medication and the mood — in proportions that differ between people and that are, importantly, partly fixable.

This guide is about that whole territory: why the mood problems happen, why they go untreated, what memory in epilepsy actually consists of, the bone health issue nobody mentions, and what to ask for. It is the part of epilepsy care most likely to be left out of a seven-minute appointment, and the part most likely to determine what somebody’s life is actually like.

Why depression and anxiety are more common

Not simply a reaction to having a difficult condition, though that is part of it. There are at least four contributing mechanisms and they matter because they point to different answers.

Shared neurobiology. The brain regions involved in temporal lobe epilepsy in particular — the hippocampus, the amygdala, the limbic circuits — are the same regions involved in mood regulation. The relationship appears bidirectional: depression is more common in people with epilepsy, and people with depression have a higher risk of developing epilepsy. That is not a coincidence of circumstance; it reflects overlapping biology.

Medication effects. Several anti-seizure medications can cause or worsen depression, irritability and anxiety, with levetiracetam the most commonly implicated. This is the most reversible contributor on the list and the most frequently missed, because the mood change gets attributed to the condition rather than the drug.

The consequences of having epilepsy. Losing a licence, losing work, the restrictions, the unpredictability, the stigma, and the particular exhaustion of never knowing when the next seizure will come. The Deloitte report found 29 per cent of Australian respondents had been absent from work because of epilepsy in the previous year, averaging 33 days.

And the periods around seizures themselves. Mood changes in the days before a seizure, and depression, anxiety or agitation for hours to days afterwards, are recognised phenomena — which means some of what looks like a mood disorder is actually seizure-related and timed. A diary that records mood alongside seizures is how this gets identified, and it changes the treatment.

There is also a distinct pattern sometimes described as an interictal dysphoric disorder — fluctuating irritability, low mood and anxiety between seizures that does not fit standard depression criteria neatly. It is worth knowing it exists, because people whose symptoms do not match a textbook description sometimes conclude they are not depressed.

Why it goes untreated

Nobody asks. Epilepsy appointments are about seizure counts and medication doses, and the mood question gets squeezed out. Screening for depression is recommended and inconsistently done.

People do not raise it, either because they assume it is a normal response to their situation, or because they do not want more medication, or because they think it is not what the neurologist is for.

It gets attributed to the condition, as though feeling bad about epilepsy were an untreatable fact rather than a treatable problem.

And there is a specific and damaging fear, held by patients and sometimes by clinicians: that antidepressants cause seizures.

That fear deserves addressing directly. Some antidepressants can lower the seizure threshold, and the Epilepsy Foundation’s guidance notes that some antidepressants and antipsychotics can do so. But the risk with the commonly used agents at therapeutic doses is small, and the consensus position is that untreated depression in epilepsy is more dangerous than the treatment — it worsens quality of life more than seizure frequency does in several studies, it reduces medication adherence, which worsens seizure control, and it is associated with suicide risk. The right response is choosing an appropriate agent with somebody who knows both conditions, not declining treatment.

And the adherence loop matters, which the Epilepsy Foundation names: mental health difficulties can reduce a person’s willingness to take medication — which worsens seizures, which worsens mood. Breaking that loop at the mood end is frequently easier than at the seizure end.

Suicide risk, said plainly

Risk of suicide is elevated in epilepsy relative to the general population. This is a difficult thing to write and the reason to write it is that the risk is managed by being noticed.

Several anti-seizure medications carry a class warning about suicidal thoughts, and the instruction with that warning is to report such thoughts immediately rather than wait for a scheduled appointment.

If you are having thoughts of suicide or self-harm, that is a reason to contact somebody today — your GP, your neurologist, or Lifeline on 13 11 14. If it is urgent, an emergency department or 000. And if a medication was started or increased recently, say so, because that connection matters clinically.

For families and support workers: expressions of hopelessness, withdrawal, giving things away, or a marked change after a medication change are things to escalate the same day rather than monitor. Covered in the practical guide, epilepsy and seizure support.

Memory, and what is actually going on

Memory complaints in epilepsy are extremely common and they get dismissed in both directions — by clinicians as unavoidable, and by patients as something they must be imagining because the tests looked alright.

Three contributors, which can be disentangled:

The epilepsy itself. Temporal lobe epilepsy affects the hippocampus, which is the structure most directly involved in forming new memories. Frequent seizures disrupt consolidation. And there is a specific, under-recognised phenomenon — accelerated long-term forgetting — where information is learned and retained normally over minutes and hours, then lost over days and weeks. People with this describe learning something, being tested on it successfully, and having no recollection a fortnight later. Standard memory testing, which checks recall after thirty minutes, misses it entirely, which is why people get told their memory is fine when it demonstrably is not.

The medication. Topiramate is the clearest offender, with word-finding difficulty and cognitive slowing common enough to be the main reason people stop it. Several others contribute, and polytherapy compounds it. This contributor is testable: reduce the dose or switch the drug, and see what changes.

The mood. Depression impairs concentration, and impaired concentration presents as impaired memory because nothing was encoded properly in the first place. Treating depression improves memory complaints in a substantial number of people, which is one of the more satisfying things in this field.

Plus two that are easy to forget: poor sleep, which degrades memory in anybody and is common in epilepsy; and the seizures themselves, which produce amnesia for the event and frequently for a period before and after it.

What to do:

Ask for a neuropsychological assessment if memory is a significant problem. It distinguishes the pattern, identifies what is drug-related, and gives you something concrete rather than a vague complaint.

Ask specifically about accelerated long-term forgetting if your experience is of losing things over weeks rather than minutes.

Review the medication, honestly, as a possible cause.

Treat the mood.

And use external strategies without embarrassment. A single calendar on the phone with alarms. Lists. Photographs of where things are. Voice memos. Writing things down at the moment rather than later. These are not admissions of decline; they are the same things everybody competent does, used more deliberately.

Bone health, which nobody mentions

A genuinely under-discussed long-term consequence.

Long-term use of enzyme-inducing anti-seizure medications — carbamazepine, phenytoin, phenobarbitone, primidone — and valproate is associated with reduced bone mineral density and increased fracture risk. Add in the fractures caused by seizures themselves, particularly atonic and tonic-clonic seizures, and the reduced activity and sun exposure some people have, and the risk compounds.

Nobody is told this at the start, and it is the kind of thing that surfaces as a fractured wrist at 45.

What to ask for, if you have been on these medications for years: vitamin D level checked, calcium and vitamin D intake reviewed, and a bone density scan considered. Weight-bearing exercise where it is safe. It is a simple conversation and it is almost never initiated by the prescriber.

The things that genuinely help

Treat the depression and anxiety. Psychological therapy, medication, or both. Cognitive behavioural therapy has evidence in epilepsy specifically. This is the highest-value intervention in this whole guide.

Review the medication for mood and cognitive side effects, because the most reversible contributor is frequently the one in the blister pack.

Fix the sleep. It helps mood, memory and seizure control simultaneously, and obstructive sleep apnoea — which worsens seizure control and is treatable — is worth asking about if there is snoring or daytime sleepiness.

Exercise, which has evidence for mood in epilepsy and which is safe for the great majority of people with epilepsy. The old advice to avoid exertion was wrong. Sensible precautions apply around water and heights.

Keep a diary that records mood as well as seizures, which is how the pre- and post-seizure patterns get identified.

Peer contact. Both Australian epilepsy organisations run peer support, and the thing it provides that clinical care cannot is not having to explain.

Talk to the free services. Epilepsy Action Australia on 1300 37 45 37, with telehealth appointments with an epilepsy nurse, and the National Epilepsy Support Service on 1300 761 487. Both will discuss mood, memory and medication side effects — which are exactly the topics a short specialist appointment leaves behind.

And tell somebody. The thing most consistently reported by people with epilepsy is the isolation of managing something invisible, unpredictable and frequently misunderstood. That is not a clinical problem with a clinical answer, and it is still worth naming.

Talking to a clinician about it

The mood and memory conversation is the one most likely to be squeezed out of an appointment, and a little preparation changes that.

Book a longer appointment and say what it is for. “I want to talk about mood and memory, not seizures” at the time of booking gets you time that a standard review will not.

Bring something written. Two or three specific examples rather than a general description. Not “my memory is bad” but “I learned the new system at work in March, was fine with it for a fortnight, and by May had no recollection of it at all.” Not “I feel down” but “I have stopped doing the things I used to enjoy, I am sleeping badly, and it has been like this since about June.” Specifics get taken seriously; generalities get reassurance.

Bring the medication timeline. When each drug started, when doses changed, and when the mood or memory changed. If those lines cross, you have found something, and a prescriber can act on it immediately.

Use the direct questions:

“Could this be a side effect rather than the epilepsy?”

“Can we screen for depression properly?”

“Can I be referred for a neuropsychological assessment?”

“Have I been assessed for accelerated long-term forgetting?”

“Is my mood changing in a pattern around my seizures?” — which a diary recording both answers.

“Should my vitamin D and bone density be checked?”

“Is there a psychologist who works with epilepsy?”

Say it even if it feels off-topic. Neurologists expect mood questions, screening for depression is recommended practice, and the reason it goes unaddressed is usually that nobody raised it rather than that it was unwelcome.

And if the appointment does not deliver, ring a free epilepsy nurse — Epilepsy Action Australia on 1300 37 45 37 or the National Epilepsy Support Service on 1300 761 487. These are precisely the questions those services exist for, and they have time.

Psychosis and the post-seizure states nobody warns about

A group of phenomena that frighten families badly, are well described clinically, and are almost never mentioned at diagnosis.

Post-ictal confusion is the familiar one — minutes to hours of disorientation after a seizure, sometimes with agitation. It is expected and it passes.

Post-ictal psychosis is the one nobody mentions. Hours to days after a cluster of seizures, and typically following a lucid interval, somebody can develop a frankly psychotic state: paranoia, delusions, hallucinations, agitation, sometimes elation or religious preoccupation. It usually resolves over days to a couple of weeks and frequently needs short-term treatment and sometimes admission.

Why it matters that you know it exists. Families watching somebody become acutely paranoid two days after a seizure cluster, with no prior psychiatric history, reasonably conclude something catastrophic has happened. It is a recognised epilepsy phenomenon with a recognised course, and knowing that changes the experience entirely. It is also a reason to seek help promptly rather than waiting — and a reason to mention the recent seizures to whoever assesses the person, because an emergency department seeing acute psychosis without that context will reach for a different explanation.

Inter-ictal psychosis is a separate and rarer picture, more persistent, more associated with long-standing temporal lobe epilepsy, and managed as a psychiatric condition in its own right.

And a specific thing to be alert to: forced normalisation. Occasionally, when seizures are brought under control rapidly — usually by a medication change — psychiatric symptoms emerge as the EEG improves. It is counterintuitive, it is well described, and it is important because the instinct is to treat the psychiatric problem without connecting it to the recent medication change. Tell the prescriber about the sequence.

What to do with all of this:

Record the timing of any psychiatric change relative to seizures and to medication changes. The pattern is the diagnosis.

Seek help promptly rather than waiting out an acute psychotic state, and say “this started two days after a cluster of seizures.”

Ask whether the psychiatrist and the neurologist have spoken, because these presentations sit precisely in the gap between the two specialties, and the gap is where people get managed badly.

And do not stop anti-seizure medication because psychiatric symptoms appeared. That decision belongs to the prescriber.