The ILAE British Branch held its Annual Scientific Meeting in Gateshead at the start of October. There was a packed agenda of talks and events organised by the International League Against Epilepsy over three days, hosted in the Glasshouse overlooking the Tyne. Tom Shillito looks at some of the highlights.
Dr Paul Cooper, a neurologist and chair of the DVLA medical panel for neurological disorders, gave an update on the driving regulations around epilepsy.
People with epilepsy were first banned from driving in the 1930s. This ban remained in place until the 1970s, when driving regulations started to come into place that allowed for people with epilepsy to drive under certain conditions. Currently, people with epilepsy are allowed to drive if they have been seizure free for a year, or if their seizures don’t affect their consciousness. For more details about the driving regulations, see www.epilepsy.org.uk/driving.
While the DVLA manages driving licences, the laws that decide who can and can’t drive are created by the UK government, and can only be changed by parliament. This means it can be very difficult to make changes to those laws, even when we learn something new about epilepsy or discover a new treatment. There is also a difference in the way those laws define epilepsy, and how it’s defined by doctors and medical professionals. In driving law, you are considered to have epilepsy if you’ve had two or more seizures that were more than 24 hours apart within a five year period. In medicine, epilepsy can be defined as having two seizures more than 24 hours apart over any period of time, or having the probability of seizures, or having a diagnosis of an epilepsy disorder. This mismatch between the definitions and the misunderstandings that can occur from it, can make it difficult for people with epilepsy and their doctors to understand what is needed to get a driving licence, and when driving needs to be stopped.
If you have a seizure for the first time, you must tell the DVLA and stop driving. If you only have one seizure, and don’t have any more for six months, you can ask the DVLA for permission to drive again. If you have more than one seizure, you need to be seizure free for 12 months before you can ask for your licence back. The rules are slightly different for different types of seizures, so for more information, check www.epilepsy.org.uk/driving, and if you’re not sure what to do, you can ask the DVLA and your doctor.
The DVLA receives more than 3,000 medical forms a day, and there can be long waiting times to hear from the DVLA when you submit a form or ask for advice. Dr Cooper’s advice was to always contact the organisation by email, and to make sure that you and your doctors are providing any information you’re asked for as quickly as possible. Many of the delays are due to the DVLA waiting for responses from doctors, so it is a good idea to keep in regular contact with your doctor when the DVLA may need information from them.
Juvenile myoclonic epilepsy
Prof Arjune Sen from the University of Oxford gave some updated findings about juvenile myoclonic epilepsy (JME) and the differences between men and women who have this condition.
JME is a relatively common type of epilepsy, affecting about one in ten people with epilepsy. It usually begins when someone is a teenager or young adult, and it affects slightly more women than men. Everyone with JME experiences seizures that cause sudden jerks in the limbs, called myoclonic jerks. People with JME may also experience absence seizures (where they ‘switch off’ and look like they are daydreaming) and tonic-clonic seizures (where they stiffen, lose consciousness, fall to the ground and jerk).
This research aimed to find out what different features might be helpful to look for when predicting how helpful a course of treatment might be. It looked at a large amount of data gathered from both men and women with JME, including what their seizure triggers were and whether they’d been able to become seizure free using anti-seizure medications (ASMs).
The research found that for men with JME, the only factor that could predict whether they might have drug resistant epilepsy (meaning their seizures couldn’t be stopped by taking ASMs) is whether they had absence seizures. Men who had absence seizures were more likely to have drug-resistant epilepsy.
For women, the picture was more complicated. Women with JME were more likely to have drug-resistant epilepsy if their seizures began before they were 12 years old. Similarly to men, women who experienced absence seizures were also more likely to have drug-resistant epilepsy than those who didn’t. Among the women who had absence seizures, those who did not have photosensitive epilepsy were more likely to have drug-resistant epilepsy than those who did. Women with JME who didn’t have absence seizures were more likely to have drug-resistant epilepsy if their seizures were triggered by stress, sleep deprivation, their menstrual cycle and concentration. Photosensitivity also played a role – if their seizures were triggered by one of those things, and they did not have photosensitive epilepsy, they were even more likely to have drug-resistant epilepsy.
This research does not mean that every woman with JME who has absence seizures will not be able to control her seizures with medication. Neither does it mean that every man with JME who doesn’t have absence seizures will be able to become seizure free. Each person’s epilepsy is different, and this research can only give us some clues as to what is more likely in a group of people with JME. However, this research does give us some clues as to the possible treatment options for people with JME. If a man who does not have absence seizures doesn’t manage to become seizure free after trying two different ASMs, it might be a good idea to try a third one, as he’s more likely to be able to find a drug that can help him. However, if a woman who has absence seizures and isn’t photosensitive is not seizure free after trying two medications, it might be worth exploring treatment options that don’t involve medications, such as surgery or vagal nerve stimulation. This information can help doctors understand what options might be best for patients with JME.
Variation in prognosis and treatment outcome in juvenile myoclonic epilepsy: a Biology of Juvenile Myoclonic Epilepsy Consortium proposal for a practical definition and stratified medicine classifications | Brain Communications | Oxford Academic (oup.com
Transient epileptic amnesia
Professor Chris Butler from Imperial College London gave an overview of transient epileptic amnesia. This is a rare but very recognisable condition that can affect people with temporal lobe epilepsy. People who experience this will have short (usually 15-30 minute, but sometimes longer) periods when they can’t remember anything from that day or the previous few days. This often happens just after they wake up. During this period they can’t form new memories, and may ask the same question many times as they can’t remember the answer. They are usually able to remember who they are and who their family is, and can communicate and move around as normal. Once this period is over, their memories from the last few days will return.
Alongside these short episodes of amnesia, people who experience this may also feel more emotional in general, and cry more easily. They may also experience other memory problems. It is common for them to experience accelerated long-term forgetting, which means their memories fade much more quickly than usual, particularly memories of events. They also very commonly experience autobiographical amnesia, which is where they lose memories of events from their past (such as holidays and weddings). These are symptoms that are easily missed in normal testing. The standard memory tests that are used only test how well a memory lasts over half an hour, whereas in accelerated long-term forgetting and autobiographical amnesia, memories will fade much faster than usual, but that fading can take days, weeks or months.
More than two thirds of people who have transient epileptic amnesia are men, and it usually starts when they reach their 60s. Episodes generally happen roughly once a month. People who experience transient epileptic amnesia are not any more likely to develop dementia, hypertension or have a stroke.
Transient epileptic amnesia can be treated using the same ASMs usually used in any type of epilepsy. People who experience transient epileptic amnesia can usually become seizure-free using ASMs. One study found that 98% of people with transient epileptic amnesia had their seizures either become less frequent or stop completely by using medication.