“Epilepsy arises from many sites within the brain and the form it takes is influenced by this. The commonest site for epilepsy to originate from is the temporal lobe”.
Yes there are many types and half of us will see an attack or know someone with epilepsy. The public base their perception of what a seizure looks like from TV and film portrayals. These show some one falling to the ground, going rigid and shaking, and biting there tongue. However the majority of seizures are not like that and may just take the form of staring vacantly into space and appearing confused. Epilepsy can be a symptom of many conditions and there are over fifty different types of epilepsy and syndromes. Attacks can be classified by their appearance or by their cause.
Make sure that they are safe. If they are unconscious and fitting turn them onto their side and make sure their airway is not blocked. If they are wandering and confused don’t force them to sit down of leave the room, as this will heighten confusion, just gently reassure and keep them safe until they become aware once more of their surrounding.
The public, because of TV announcements, think that flashing lights are the commonest trigger but this is only the case in a minority. Most seizures are unexpected and unannounced. Sleep deprivation, such as on a long haul air flight, stress or certain foods may trigger in some but this is very variable.
On average seizures are relatively infrequent but the range is enormous. Children with certain conditions (or syndromes) can have dozens of attacks a day whilst an adult might have only one or two attacks a day.
The aim of drug and surgical treatment is to stop seizures from happening at all. We call this seizure control and many with appropriate drug treatment will become seizure free. Management is not just about counting the seizures. It is also about improving the quality of life of someone with epilepsy. This involves understanding and help with the social and personal issues that epilepsy can throw up.
There is a suggestion that certain severe childhood epilepsies can be helped and some parents have gone to great lengths to obtain these treatments as a result of the improvement that they have witnessed in their own child. More work is needed to identify the specific ingredient of CBD oil that works and clinical trials are needed in children and adults. However it is difficult to ask a parent to wait for trial results when they see their child fitting, often several times a day.
Epilepsy is not invariably a lifelong condition and in countries where drug treatments are limited a proportion of untreated persons can spontaneously stop have seizures. When epilepsy has been controlled by drugs for some years it is possible to slowly stop drug without it coming back. Decisions on doing this should always be made in conjunction with a specialist who can advise on what the risk of seizure recurrence might be. Finally surgery, if the source or site of origin of the seizure within the brain can be pinpointed, may be curative.
In the past the risk of inheriting epilepsy was overstated and led to many being advised not to have children. Now we know that a small number of persons with epilepsy have an underlying genetic condition of which seizures may be a manifestation. These are often epilepsies that begin in early childhood and there may be a history of seizures in other family members.
In those whose epilepsy is not controlled there may be significant effects on relationships, employment, education and recreational activities. Those with active epilepsy are more likely to be single and on low income or unemployed.
Certain careers are impossible especially those were lapse of concentration or loss of awareness might endanger others. A heavy goods vehicle can only be obtained if someone has been ten years free of seizures and no longer on medication. Flying a commercial airliner is out of the question. There is no reason why there should be a restriction to most careers but the application form and interview process can be unpredictable. The declaration of a health issue when applying for a post can be a thorny issue.
People no longer go on a disability register as such. They apply for Universal Credit and a judgment is made by others as to whether their epilepsy is severe enough to warrant receipt of the benefit. This is a very contentious area where the frequency of epilepsy and the severity of attacks are taken into account but not necessarily the psycho-social consequences of the condition. Epilepsy is referred to as a “hidden disability” because between attacks there are no visible features of being impaired and consequently its impact is underestimated.
There are several national and UK wide epilepsy charities. These may provide help lines, advocacy and written advice on issues such as driving and employment. They also lobby to change legislation and monitor issues such as Universal Credit. Charites also provide training programmes for those with epilepsy and awareness and medication training for professional care organisations.There are also self-help groups and blogs.