Charlotte, who is now 26, was diagnosed with migraine at the age of ten when both EEGs and ECGs were unable to detect any abnormalities. However, this diagnosis was over-turned when Charlotte’s parents caught one of her episodes on film. It transpired that she had temporal lobe epilepsy and had been experiencing ‘absences’, during which she would become vacant but could still function – walking and talking as normal.
So, at the age of 12, Charlotte began to take medication and up until the age of 16 Charlotte’s absences were regular but infrequent, taking place every 10 months or so. As she got older they became more frequent, and she now experiences 3-4 absences a month – often in ‘clusters’.
Over the last 14/15 years Charlotte has tried 10-12 different anti-epileptic drugs, many of which have not really helped but have given her significant and unwanted side effects. The most debilitating of these include cognitive impairment, weight gain, depression and extreme tiredness and lassitude, which have made coping with her demanding job very difficult. At the moment Charlotte is taking carbamazepine and is coming off perampanel, which will slowly be replaced by lacosamide. More recently – within the last couple of years – Charlotte has been seen by a specialist in London who assessed her for the possibility of surgery. It was decided that in Charlotte’s case this would be inappropriate as the benefits were outweighed by the possible side effects.
Charlotte has tried to work out what may have caused her epilepsy as there is no-one in her direct family who has the condition, although a second cousin has it very badly. Looking back on the onset of her epilepsy, Charlotte believes she may have had an inherent susceptibility, and that it was triggered by intense stress and anxiety due to being bullied at school. As a consequence, during her school years she tended to play down her epilepsy as she did not want to be defined by the label. Once at Oxford University, she had a very supportive environment with good pastoral care. But even now she only tells people on a ‘need to know basis’ as she does not want people to treat her differently.
Charlotte’s diagnosis did not make any difference to her family and they have adopted a very pragmatic approach to her epilepsy. Charlotte herself does everything that she wants to do, although she is sensible in all that she does. She is aware of her triggers but does not wrap herself up in cotton wool: “Life is a balancing act, don’t let it (epilepsy) define who you are”. She enjoys cycling, riding, skiing, and generally just “gets on with it”, but is careful never to bathe or swim on her own. She has good friends and frank discussions, which means that she gets very good support from a small group of people. She recognises that she has a high quality life and that her episodes are few and far between. In addition, she normally has a 10-minute warning before an absence occurs and before she briefly loses consciousness.
After an absence, Charlotte typically feels very tired and sometimes goes to sleep. She also finds it difficult to find or articulate the right words for a short period, as her seizures originate from the left side of her brain, which is dominant for language.
For Charlotte, one of the most difficult things to reconcile is the ‘balancing act’ that has to be performed in weighing up the pros of taking the medication against the cons of the side effects. As she herself puts it, “My situation is tantalisingly close to normality. I get side effects from the medication, which may make me feel exhausted, but I have to perform in the work environment, so I have to deal with it”. At times she has wondered whether she should live unmedicated, but all things considered she has decided to remain on medication in the hope that one day her epilepsy will be completely controlled.
Charlotte acknowledges that there are now many more drugs available to help treat epilepsy and hopes that there will be a real breakthrough in her lifetime. However in her experience there is not enough information available about possible interactions with other medications, e.g. carbamazepine and the contraceptive pill. She also finds it frustrating that she has to face people’s ignorance about epilepsy all the time. “People just do not know about, or understand the condition; there is a general lack of awareness and knowledge.”
Charlotte feels that there is still a very long way to go before epilepsy, and how/where seizures originate, are properly understood. So for her, continuing research is vital.
NB: names in this account have been changed