A was diagnosed with dyspraxia as an adult and later with sleep apnoea. His first epileptic seizure took place when he was in his mid-50s; by this he means that he was seen by a consultant and his description of how he felt afterwards and a brain scan led to the diagnosis. This seizure, termed, tonic-clonic, took him several days to get over. However, looking back A thinks he may have had seizures in his 30s but he didn’t realise it then.
A’s seizures are characterised by absences where time has passed but he can’t account for what he was doing. “Sometimes I come out of an absent period and I have been chewing my teeth or muttering incoherently”.
He takes lamotrigine, a type of epilepsy medication, twice a day and this helps to keeps his condition under control. However, A cannot drive at present because you must provide evidence to the DVLA that you have been seizure free for a year. This affects things like the school run for his son. Epilepsy also affects the type of work you can do as the person cannot put himself/herself or other staff at risk. A was a window cleaner but returning to that work would be too risky for him whilst he still has seizures.
Living with epilepsy
It is possible to recover from epilepsy and it can be controlled by medication. There are over 20 drugs which can be used on their own or in combination though it may take a little while to find something that works for each individual.
If you want to return to work following diagnosis you can request adjustments to your working practice and staff can be trained in epilepsy awareness through the Access to Work Scheme.
It is not unusual to have difficulty remembering things when you have epilepsy or any number of neurological conditions – when to take medication, appointments, what you went shopping for and there are a number of memory aids that may help you.
A range of apps is available on line or through google, android or apple stores or through the charities listed above. It is important to check whether these suit your needs, for example, the range of medication entries you can make, and records of the frequency and duration of your seizures. Apps can be helpful in different ways: there are apps that work with visual prompts; apps that allow you to create a profile of a person to remind you how you know them; apps that just remind you to do something on a certain day or time; or apps that speak to you or help to locate something such as your keys. There are several apps to help remind you to take your medication including one by the Epilepsy Society which is free.
In addition, you can find apps that work with motion sensors which speak to remind you where you are going in your house or where you might find something such as the fridge.
Low tech aids such as notice boards, sticky notes, alarm clocks, pill dispensers, calendars and diaries that may prove just as helpful to you and your family. It is all about identifying your needs and how to meet them.
The impact of epilepsy
The impact of A’s epilepsy on his family has been quite major. His wife, who suffers from another painful condition, fibromyalgia, relied heavily on him. Since being diagnosed with epilepsy she says:
“Epilepsy has certainly had a major impact on us all, but with treatment it can be possible to lead a reasonably normal life. A still gets strange symptoms like smells and tastes and occasional absent periods, but the biggest ongoing problem we have is our joint difficulty with our memories. It is not funny when you can’t remember anything. We both now have to write everything down.”