My first epileptic episode occurred after I had retired. I had been a health professional for many years working in hospitals and in the community. Latterly, I’d worked with my husband, in his business, undertaking a variety of office activities such as accounts, HR and sales.
It occurred in March 2023 as I was getting out of the shower. I proceeded to dry myself and dress, but I was unresponsive to my husband all this time. I even continued downstairs. My husband followed me, concerned at my strange behaviour. I eventually came around, remembering nothing, but feeling a little sleepy and confused.
My husband was concerned that I’d had a Transient Ischaemic Attack (TIA), or "mini stroke". He phoned 111 for advice and got a GP appointment. By the time I saw the GP I was back to normal and only had my husband’s account of what had happened. The GP undertook routine observations, such as blood pressure and an ECG, then referred me to the stroke clinic where I was seen quickly and underwent an MRI and other tests associated with stroke diagnosis. The results were all negative. The consultant diagnosed Transient Global Amnesia (TGA) and reassured me that I was unlikely to have a recurrence.
A few days later, I did, so I saw a different doctor and a nurse who referred me for an EEG, advising me to go to casualty if it happened again. The technician could see nothing obvious in the EEG, and I guessed it was OK as nobody contacted me to say there was a problem.
Throughout the Summer and Autumn, I had several recurrences a month. My husband kept a spreadsheet! My GP still didn’t seem interested, and certainly didn’t ask any searching questions, so I saw a different GP and took my husband armed with his spreadsheet. By this time, I had come to recognise signs of an oncoming episode, that I now know is an aura. I had also started to lip smack according to my husband. This rang alarm bells. It obviously did for the GP as she referred me immediately to a neurologist. Given how long it had taken to get this far, we opted to go private.
I did some research and opted for a consultant whose resume stated that he had a special interest in Epilepsy, as by this time I had self-diagnosed utilising my own medical knowledge.
I attended an appointment in July 2024. The consultant listened carefully, asked lots of questions of my husband, and looked at the spreadsheet. It was at the appointment that my husband disclosed that I had recently been waving my left arm during an episode. Another symptom.
The consultant had no hesitation in diagnosing Late onset Left Temporal Lobe Epilepsy. He was very clear that the diagnosis must be made based solely on patient history and no tests would assist in the diagnosis. Clearly some health professionals were not asking the right questions.
I started medication almost straight away, and since fine tuning the dose, I have had no further episodes. However, epilepsy has left me with significant memory loss, especially of events around the time of seizures. With medication my memory is a little better, but we take lots of photos (so my husband has the evidence, when I don’t believe him). I write a diary for significant events, as this reinforces the memory in my brain, as well as having something to go back to. Occasionally, I can’t reach for words when speaking, but I have adopted strategies to deal with this.
My husband has been a huge support, reminding me to take evening medication, keeping me straight with memory issues and, as I still can’t drive, ferrying me about. Most of all, I think he’s just relieved to have got a definitive diagnosis and not to be hanging in mid-air any longer!
Even with my knowledge base, I had issues getting through the system, so I worry about whether others are able to get timely interventions. According to the consultant, many people remain undiagnosed. It is essential that those working in healthcare are aware that epilepsy can occur at any stage of life. More research is vital in understanding why this happens, and the medical fraternity need to know that it does.
