I got to 55, then Bam - Epilepsy!

I'd been feeling 'off' for some time. My first thought was stress. It was a neat association because I was going through a patch which resulted in some broken nights. All that changed when one evening I began lapsing in and out of consciousness. Short version: hospital - tests - diagnosis. "You're experiencing what we call late-onset complex partial seizures," said the neurologist. This was what I'd known as temporal lobe epilepsy.

The 'complex' element seemed to be the fact that I hadn't the first idea what was happening. I'd be aware of nausea and a sense that I was meant to be doing something important (my aura). Then faces would appear, real faces that is, asking me if everything was alright. Effectively, I'd been spaced out for around a minute or so at a time, blissfully unaware of anything going on around me.

Before and after

There is a before and an after. Most men who receive a diagnosis of epilepsy in their 40s, 50s or 60s describe it broadly in these terms. It is less a gradual transition so much as a line drawn across their life by an event they didn't anticipate, in a condition they associated with other people, producing consequences that arrive faster and cut deeper than the medical literature quite prepares you for.

The seizure itself — the first one, the one that brings the ambulance and the hospital and the neurologist and the blood tests and the MRI and eventually the diagnosis — is disorienting enough. But the diagnosis is where the real adjustment begins, because it is permanent in a way the seizure was not. The seizure was an event. Epilepsy is a condition, and conditions change the relationship between a man and his life in ways that take considerably longer than the consultation to understand.

This article is for men who have recently received this diagnosis, for those who are supporting someone who has, and for anyone who wants to understand what late-onset epilepsy really involves — not in the clinical sense that the neurologist covers adequately, but in the psychological and practical sense that tends to get less attention and matters just as much if not more.

Late-onset epilepsy

Epilepsy is a neurological condition characterised by recurrent, unprovoked seizures — abnormal electrical activity in the brain that produces a range of effects depending on which part of the brain is affected and how extensively. It is not a single condition but a group of related conditions with different causes, different seizure types and different prognoses.

The association between epilepsy and youth — the condition most commonly diagnosed in childhood or early adulthood — means that its presentation in midlife and later tends to catch people by surprise. It shouldn't. Epilepsy is the third most common neurological condition (in the UK at least) after stroke and dementia, and its incidence follows a bimodal distribution: high in the young, declining in middle age, and rising again significantly in later life. In adults over 65, epilepsy is actually more common than in any other age group except the very young.

Late-onset epilepsy — defined broadly as epilepsy with first presentation after the age of 25, and sometimes more specifically after 60 — has a different profile from childhood epilepsy. It is more likely to have an identifiable structural cause: previous stroke, brain tumour, traumatic brain injury, neurodegenerative disease, or vascular changes associated with ageing. I sit amongst the third of cases where no specific cause is identified, which is both reassuring and frustrating in the way unexplained medical conditions tend to be.

The seizure types most common in late-onset epilepsy are focal seizures — originating in a specific area of the brain rather than involving both hemispheres simultaneously — which may or may not involve loss of consciousness, and which may be subtle enough in their early presentation to have been mistaken by the man himself and sometimes by his doctor, for something else entirely. Transient confusion, unusual sensory experiences, brief episodes of automatic behaviour — the presentations of focal epilepsy can precede the first convulsive seizure by months or years, unrecognised for what they are.

The immediate aftermath of diagnosis

The period immediately following a diagnosis of epilepsy is one of the more psychologically disorienting experiences of adult life — and one that the medical system, focused appropriately on the clinical management of the condition, tends to underserve in its psychological dimensions.

The diagnosis arrives with immediate practical consequences that feel disproportionate in their scope and speed.

The driving licence. In the UK, a diagnosis of epilepsy requires immediate notification to the DVLA and cessation of driving until the individual has been seizure-free for twelve months — or three months in the case of certain seizure types that don't affect consciousness. This is a legal requirement, not a recommendation, and its implications are immediate and extensive. For the man whose driving licence is central to his professional life, his domestic independence, his sense of freedom and his identity as a capable adult, its removal is not an administrative inconvenience. It is a fundamental disruption to the daily infrastructure of his life.

The psychological impact of losing the ability to drive is consistently underestimated by clinicians and consistently significant to patients — particularly men in midlife and beyond, for whom driving represents both practical capability and the autonomy that the article on in defence of the garden shed identifies as a fundamental psychological need. The man who can no longer drive to work, to the shops, to see his friends, to take his grandchildren where they need to go — he has lost something that goes well beyond transport.

The employment implications. Depending on the profession, a diagnosis of epilepsy has immediate employment consequences that range from minor to career-ending. Men in roles that require driving, operating machinery, working at heights, or holding specific licences — pilots, HGV drivers, surgeons, military personnel — may find that the diagnosis removes the professional role entirely, or severely limits it, with no transitional period and no particular sympathy from the regulatory framework that requires it.

For other men, the employment implications are less dramatic but still significant: disclosure obligations to employers, potential adjustments to working conditions, the decision about what to tell colleagues and when, and the management of a condition whose visible manifestation — a seizure in the workplace — carries a stigma that most men are acutely aware of and deeply reluctant to invite.

My own diagnosis arrived when I was 55. I was fortunate to be in a profession when retirement was possible at that age. I said nothing to anyone. I just grasped the retirement lifeline and left the building.

The immediate restrictions. Beyond driving, the post-diagnosis period involves a set of activity restrictions that collectively produce the feeling of a life that has been significantly contracted without consent. Swimming alone is inadvisable. Showering is recommended over bathing. Heights should be avoided. Certain sports carry elevated risk. The man who was previously physically active, independent and unrestricted finds himself navigating a world that has acquired edges and warnings where there were none before.

The triggers. We've all seen those warnings on TV about flashing lights. This is an alert to the approximately 3 per cent of people with photosensitive epilepsy, but the list is much more extensive. It includes lack of sleep (one of the biggest), stress, fevers, alcohol, missed medication, caffeine, sensory things like certain sounds, smells and even strong emotions, and ongoing anxieties.

The psychological impact

The psychological literature on adjustment to chronic neurological conditions is clear and, for the man in the middle of it, not always comforting: the period immediately following diagnosis tends to involve a grief response that is both normal and frequently unacknowledged.

What is being grieved is not the condition itself — the seizures, the medication, the neurological reality — but the version of the self that existed before it. The man who drove wherever he wanted, who swam alone, who worked without disclosure, who existed in the world without the particular self-consciousness of someone who might have a seizure at an inconvenient moment — that man is gone, or at least significantly modified, and the modification was not chosen.

Fear is the most immediate psychological burden, and the most persistent. Fear of the next seizure. Fear of where it will happen, what damage it might do, and who will witness it. Fear of the loss of consciousness that is both terrifying to experience and deeply exposing to have witnessed. To say it is confidence-sapping is an understatement.

Men with epilepsy consistently report that the anticipatory anxiety between seizures — the hypervigilance for early warning signs, the constant background monitoring of their own neurological state — is as burdensome, perhaps more so, than the seizures themselves.

Shame and stigma remain significant despite decades of public awareness campaigns. A day after coming home from the hospital, I was outside and got chatting to a gardener I'd known at the "hi, how are things?" level for some years. I mentioned my recent experience and diagnosis, and was astonished to see his facial expression stiffen as he took a step back. I laughed it off and reassured him it wasn't in the same category as Ebola, but this, I quickly realised, was my first exposure to stigma.

Epilepsy carries a residual social stigma that is both irrational and persistent — rooted in historical associations with possession, madness and weakness that the modern medical understanding of the condition has not entirely displaced. The man who has a seizure in public, who loses control of his body and his consciousness in front of strangers or colleagues, has been exposed in a way that the deeply private, self-sufficient men this site addresses tend to find particularly difficult.

The reluctance to disclose — to tell employers, colleagues, friends and family — is understandable and, in some respects, practically rational. It is also, in the longer term, psychologically costly. The sustained management of a significant health condition in secret requires a level of vigilance and concealment that compounds the anxiety rather than managing it.

In my case, the thought of having seizures in front of a lecture theatre full of students was - well, I'll leave that to your imagination.

Depression is significantly more common in people with epilepsy than in the general population — approximately three times the rate — and the relationship is bidirectional. Epilepsy produces depression through its direct neurological effects, through the psychological impact of the restrictions it imposes, and through the medication that manages the seizures but affects mood in some individuals. Depression, in turn, lowers seizure threshold in some cases and certainly reduces the quality of life and the capacity to manage the condition effectively.

The depression associated with epilepsy is frequently undertreated, both because the man himself is reluctant to present with psychological symptoms alongside a new neurological diagnosis, and because the clinical attention in the post-diagnosis period is appropriately focused on seizure control. The result is a man managing both a neurological condition and a depressive episode with the resources of someone managing neither.

Identity disruption is profound and, for men in midlife, operates against the backdrop of the other identity challenges described in my articles on the midlife reappraisal and ageing and what it means psychologically. The man who had a settled, functional sense of himself as capable, independent and in control of his own life finds that the diagnosis challenges all three simultaneously — the capability (he may have a seizure), the independence (he cannot drive), the control (his brain is doing something he cannot prevent through effort or will).

The psychological work of integrating the diagnosis into a revised but still coherent self-concept is real and takes time — typically longer than the medical system's follow-up schedule implies.

What the adjustment involves

The adjustment to a diagnosis of late-onset epilepsy follows a trajectory that in some ways resembles a grief process — not the neat, sequential stages of the Kübler-Ross model, but the messier, non-linear movement through shock, anger, depression and eventual accommodation that significant loss tends to produce.

The accommodation — the point at which the diagnosis has been integrated into a revised but functional sense of self — is not the same as acceptance in any passive sense. It is not the resignation of a man who has given up. It is the active adjustment of a man who has understood what has changed, made peace with what cannot be changed, and identified what remains. What remains for men with well-managed epilepsy is more than the acute post-diagnosis period suggests.

The light at the end of the tunnel

The acute period of post-diagnosis adjustment — the driving ban, the employment disruption, the fear, the restriction, the identity disruption — is not necessarily permanent.

Seizure control is achieved in approximately 70 per cent of people with epilepsy through medication alone, often within the first year of diagnosis. The man who achieves seizure control — who reaches the twelve-month seizure-free period that the DVLA requires — gets his driving licence back. The man whose seizures are controlled is not a man with active epilepsy in the sense that was feared at diagnosis. He is a man with a managed neurological condition who takes medication and has regular neurological reviews, which is a description that covers a significant proportion of the adult male population for various conditions.

The 30 per cent for whom first-line medication does not achieve seizure control (yes, that's me folks) face a more sustained adjustment, but the treatment options available — alternative medications, combination therapy, dietary interventions, and, for appropriate candidates, surgical evaluation — mean that the initial treatment failure is not the final position.

The driving licence, when it returns, is experienced by the men who went through its removal as something closer to a restoration of selfhood than a practical convenience. Men who have described the loss of their licence as one of the most significant effects of the diagnosis describe its return in terms that go well beyond the practical — a restoration of the autonomy, the independence and the sense of capability that the removal took.

The employment situation, for men whose jobs were not directly threatened by the diagnosis, stabilises. The disclosure conversation — often dreaded to a degree that exceeds the actual response — is, in most workplaces, managed more sensitively than the man feared. The Equality Act 2010 in the UK provides specific protections for people with epilepsy as a condition that qualifies as a disability, requiring employers to make reasonable adjustments and prohibiting discrimination. These protections are not always perfectly enforced, but they exist, and they provide a framework.

The fear diminishes — not entirely, and not quickly, but measurably. Men who have lived with epilepsy for several years consistently describe a gradual reduction in the anticipatory anxiety that characterised the first year after diagnosis. The brain habituates, in its characteristically human way, to the presence of a condition that was initially experienced as catastrophic. The condition becomes part of the landscape rather than the whole of it.

The identity revision completes, imperfectly and gradually, in the way that all significant identity revisions do. The man who integrates his epilepsy into his self-concept — who is a man with epilepsy rather than an epileptic man, a distinction that sounds semantic and isn't — has not diminished himself. He has expanded the self-concept to include a reality that was always going to require inclusion.

Other things help

The research on psychological adjustment to epilepsy in adults — which is less extensive than the clinical literature on seizure management but considerably more useful for the men experiencing it — identifies a consistent set of factors that distinguish those who adjust well from those who struggle.

Information and understanding. The man who understands his condition — its specific type, its likely course, its management options, its restrictions and their rationale — adjusts better than one who was given a diagnosis and a prescription and sent home. Epilepsy Action's epilepsy helpline — 0808 800 5050, free, staffed by trained advisers — is the most accessible first source of condition-specific information in the UK. The Epilepsy Society provides detailed, evidence-based condition information and a specialist helpline.

Peer support. The specific value of speaking to men who have been through the same diagnosis — who have lost their licence and got it back, who have navigated the employment disclosure, who have managed the fear and the restriction and arrived at a functioning life on the other side — is not replicable by clinical information or professional support alone. Epilepsy Action's network of local support groups and its online community provide this.

Psychological support. The depression, anxiety and loss of confidence associated with epilepsy are treatable through time and medication (if appropriate) and through psychological intervention, specifically CBT, which has a reasonable evidence base in epilepsy-related anxiety and depression. A doctor who is aware of the psychological dimension of the diagnosis is the appropriate starting point. My article on what depression looks like in men is directly relevant for men who are experiencing the mood dimension of the adjustment and haven't named it as depression.

Physical activity within safe parameters. The restriction on certain activities does not extend to all physical activity, and the evidence on exercise and neurological health — including its effects on seizure frequency in some individuals — supports maintaining physical engagement within the boundaries that the neurologist establishes.

Time. This is not a satisfying recommendation, but it is an honest one. The adjustment to late-onset epilepsy takes longer than the medical follow-up schedule suggests, and the men who emerge from it in the best psychological shape are those who allowed themselves the time the adjustment required rather than those who attempted to perform recovery faster than it was actually happening.

For those supporting a man with a new diagnosis

The man who has just been diagnosed with epilepsy is navigating something that he probably hasn't told you the full extent of — because the full extent includes fear, shame, identity disruption and grief that the male communication style tends not to transmit directly.

The most useful things are, as my article on how to help someone handle a rough patch describes: direct enquiry rather than assumed understanding, practical help with specific things rather than general offers, and persistent presence rather than the space that is frequently given and rarely what is actually needed.

The driving restriction has specific practical implications that help address better than sympathy: lifts, company, and the reduction of the isolation that the loss of independent transport produces. The offer to come to a neurology appointment — not to manage the conversation but to be there — is the kind of specific, practical presence that matters more than most supporters realise.

Useful resources

In the UK, Epilepsy Action is the primary national charity, with condition information, a helpline (0808 800 5050), local support groups and online community. The Epilepsy Society provides specialist medical information and a helpline (01494 601 400). The DVLA guidance on epilepsy and driving covers the licensing requirements clearly.

In the US, the Epilepsy Foundation provides the equivalent range of condition information, peer support and helpline access (1-800-332-1000).

The Resources page on this site lists further mental health support in both countries for men experiencing the psychological dimensions of a new diagnosis.