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I must have been 7 or 8 years old, playing in the front garden, when I had my first seizure. An intense feeling of familiarity was followed by a rising sensation, an anticipation of pleasure that never came but was gradually replaced by a sinking feeling in the pit of my stomach, a fear that something bad was going to happen. When I became older, this feeling would try to grip me and pull me away from awareness, away from consciousness.
When I told Dad, he said, “Ah yes; déjà vu!” He seemed more interested than worried. My father was a radiologist who had a tendency to ignore major neurological and psychiatric symptoms in family members, although he was happy enough to irradiate our chests and limbs. Fortunately for me, he decided I had ‘petit mal’ and waited for me to grow out of it.
For a while, I thought they must have stopped, but there were entries in my teenage diaries recording, “Had a lot of déjà vues [sic] today, feel awful.” A couple of years later, I was at medical school in St Andrews (not graced by royalty at that time, I’m afraid) and listened to my first lecture on epilepsy. When I heard about complex partial seizures, I had a different feeling of familiarity: I didn't have petit mal after all.
In my third year, they started up again. I remember riding my bike around a roundabout in Salford and struggling to stay on. I got myself referred to a neurologist, who was in no doubt that I had temporal lobe epilepsy despite normal EEG and CT scan results (this was in 1985)—an example of the importance of a clinical diagnosis of epilepsy. The neurologist phoned my Dad and gave him a hard time. Dad asked about temporal lobectomy. Maybe he had kept quiet all along because he was worried that this might be inflicted upon me; maybe he had worried about the shadow that a diagnosis of epilepsy might cast upon my future. We never discussed it, and now he's not here to be asked.
It took a year after diagnosis for me to become seizure-free on phenytoin. However, the pressures of working 28 h shifts on neonates meant I kept forgetting to take it and, by 1991, had stopped taking it at all. Five years later, after I’d had surgery for parotid adenoma, the seizures started again; my partial seizures became more prolonged, resulting in my first generalised tonic–clonic seizure. The advent of MRI revealed a temporal arachnoid cyst with distortion of the left hippocampus (figure 1A,B)—not an ‘incidental finding’ in my case. Further trials of antiepileptic drugs followed, and I’ve now been seizure-free for 15 years, on my sixth antiepileptic drug.
I started to tell parents and children that I had epilepsy when I was working as a paediatric trainee. Many parents witnessing a first febrile seizure think their child is going to die,1 and my instinctive response was to try to reassure them. Twenty-three years later, I think my motivation in so doing is better expressed by Candib:2 ‘to alleviate the loneliness, isolation and despair that can afflict people with chronic diseases and allow patients to feel that they are truly understood.’
I've recently asked teenage patients and their families what they thought when I told them I had epilepsy. Their answers included disbelief and amazement, but most of all reassurance that people with epilepsy did not have to be disabled, that they can have a good job, that they can have children and that they can be ‘normal’ people. Their concerns were more about these things than medication or side effects. Nobody thought that it was inappropriate for me to have told them I had epilepsy: ‘the ethical commitment underlying self-disclosure must be to the enhancement and empowerment of the patient.’2
My experiences as a patient and as a doctor have led me to believe that most people with epilepsy suffer more from the ignorance, fear, discrimination and legislation of others than from the seizures themselves. Don't think that my epilepsy has been an easy ride; some very bad things have happened to me, and I know that it's still there, lurking in the corner of my brain. I am lucky though in that I have never felt stigmatised in any way, and, as far as I am aware, I have never had ‘known epileptic’ written on my medical notes. I think my patients see this, and I hope it reassures them that they, too, can live a ‘normal life’.
My thanks to Dr Khalid Hamandi and the Cardiff University Brain Research Imaging Centre for the magnetic resonance images.
Competing interests None.
Provenance and peer review Commissioned; not externally peer reviewed.
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