Today is Epilepsy Awareness Day, a fitting time to shed some light on a common, varied, and poorly understood condition. Of course the science surrounding epilepsy is almost endless (as a sufferer I am all too aware of this), so this article is by no means exhaustive!
What is epilepsy?
The word “epilepsy” actually applies to a group of neurological disorders, and has many forms. 60 % of seizures are convulsive – the shaking and aggressive movement most people imagine when thinking about epilepsy. Other forms include “absences” – where consciousness is lost temporarily and the person “blanks out” or stares into space throughout, and focal seizures – where the person may experience a huge variety of effects such as stiff or floppy limbs, repeated actions such as picking at clothes, numbness or tingling, or sensing an unusual smell or taste.
While relatively little is known about the mechanism, we know that seizures are brought on by an abnormal, excessive, and synchronised firing of neurons in the brain.
Interestingly, epilepsy and seizures have distinct meanings. Anyone can have a seizure, and one incident wouldn’t be classed as epilepsy, nor would a seizure clearly brought on by a specific event or injury. The term epilepsy is then generally applied to people who experience, or have experienced, multiple seizures. It can onset at any time of life (quite commonly around puberty) and also stop affecting people at any time of life (for example some types of epilepsy mostly affect children).
A key fact to take home here is that epilepsy can mean many different things, and affects people in dramatically different ways.
What causes epilepsy?
The short answer is that we’re not really sure. A common misconception is that flashing lights are the trigger – for some people this is definitely true, but in fact only three percent of people with epilepsy have this as their trigger. Genetics, brain tumours, sleep deprivation, strokes, periods, stress, and alcohol are just a few of the causes or triggers of seizures – most of which aren’t really understood. For example, some people know their seizures are tied to sleep deprivation but their doctors can’t tell them why this is.
How do we treat and manage epilepsy?
Medication, brain surgery, and implants are used, and lifestyle management such as avoiding triggers and adopting the ketogenic diet can also be effective. For some people it seems that nothing works, while others can go for years without any seizures.
70 % of people have their epilepsy controlled by medication, including anticonvulsants, and there is a long list of possible options – the suitability depends on the type of seizure experienced, the age and gender of the person, side effects, and more. Alongside not quite knowing how epilepsy works, the mechanisms of action are often unknown for these medications.
Brain surgery is reserved for cases where medication is ineffective and it is known (through tests including brain scans and tests of the brains electrical activity) that the seizures originate from a small part of the brain. The surgery involves removal of part of the brain under general anaesthetic, and while often effective, of course it carries some risks such as memory problems and vision loss.
What other effects can epilepsy have on sufferers?
As with most medical conditions, epilepsy can mean many extra things for people with it. Here, just a few of those of a “scientific” nature will be covered.
SUDEP stands for Sudden Unexpected Death from EPilepsy and is applied to instances where a person with epilepsy dies suddenly with no apparent cause. It occurs most commonly during sleep, and those who experience convulsive seizures are at extra risk. SUDEP is obviously a tragic complication and while it is poorly understood, lots of work is being put into understanding and preventing it.
One of the most effective anticonvulsants, Epilim (sodium valproate) is known to cause physical birth defects (three times as many compared to the general population) and has been linked to autism, if women take it while pregnant – reducing the options women have for epilepsy treatment. On a similar note, many pairings of anticonvulsants and contraception are unsuitable or would need modification – for example those taking both Lamotrigine and the pill may be advised to take higher doses of both as there is a risk of reduced effectiveness due to interference between the drugs. Another example is warnings against using some medications and the contraceptive injection as both can lead to bone loss – meaning some people consider it a risky combination.
Unfortunately, people with epilepsy are also unable to give blood – while epilepsy is not a transmittable disease through blood or any other bodily fluid, giving blood comes with a chance of triggering a seizure, meaning that it is considered unsafe for sufferers.
Straying away from the science here, on Epilepsy Awareness Day it would seem wrong not to signpost to practical information. There are loads of amazing organisations which give information for the public, fundraisers, and sufferers alike – just a few are listed below:
The following is a general idea of what to do if you see someone having a seizure (taken from https://www.nhs.uk/Livewell/Epilepsy/Pages/Ifyouseeaseizure.aspx), and lots more information is available online.
If you’re with someone having a seizure:
· only move them if they’re in danger – such as near a busy road or hot cooker
· cushion their head if they’re on the ground
· loosen any tight clothing around their neck – such as a collar or tie to – aid breathing
· when their convulsions stop, turn them so they’re lying on their side – read more about the recovery position
· stay with them and talk to them calmly until they recover
· note the time the seizure starts and finishes
Dial 999 and ask for an ambulance if:
· it’s the first time someone has had a seizure
· the seizure lasts for more than 5 minutes
· the person doesn’t regain full consciousness, or has several seizures without regaining consciousness
· the person is seriously injured during the seizure
*** Myth Busted *** do not put a spoon, your fingers, or any object into the person’s mouth. They will not swallow their tongue, but they may well bite your fingers.