Having epilepsy should not prevent a person from being able to travel, whether it’s for work or to enjoy a much needed holiday. However, for many people with epilepsy travel may be problematic, particularly when it involves flying.
Many people with epilepsy may have their seizures triggered when they’re tired, which is likely to be the case if you’re catching a late/early flight or are feeling jet-lagged from the time difference. Some people may also have seizures when they feel excited or anxious, both of which are common to experience when you’re flying. In all, this makes airports a more likely place for seizure activity.
If you have had had a diagnosis for some time, you may already be aware that a trip to the airport could potentially trigger a seizure. It’s crucial that you let the airline know about your epilepsy so that they can ensure the cabin crew are aware and can be prepared. This is particularly important if you’re travelling alone as the airline should make special considerations to ensure your safety both in the airport and whilst you’re onboard.
Ensure that you take all of your medication in its original packaging as a nondescript medication is likely to be scrutinised in more detail at the airport security. Also, research whether your particular medication is available in the country you are visiting or whether it has another name. Your prescriber should be able to help with this.
You are allowed to carry up to 100 ml of medication in your hand luggage if your main luggage is lost en route. If you require more than 100 ml you need to contact the airline before you arrive at the airport, you may require a letter of confirmation from your prescriber or epilepsy specialist in order to secure special dispensation.
Be mindful of timezones
If you are required to take your medication at regular intervals, it’s important that you plan ahead for the shift in timezone. You may need to gradually adjust the times to ensure you are still able to do so in a different time zone. For shorter journeys, this may be easier, but if you’re travelling further afield the time difference will be much greater and you may require advice from your prescriber or pharmacist on how best to plan for this.
Securing a reasonable travel insurance quote with epilepsy may be difficult. Travel insurance companies assess each individual for risk so you may need to look around to find a quote that is acceptable for you.
GLUT1 Deficiency Syndrome is a genetic disorder that affects the brains metabolism by inhibiting the flow of glucose from the blood into the brain. GLUT1 is the protein that’s responsible for ensuring that the brain receives adequate glucose, which is the main source of fuel for the brain. A lack of glucose can lead to an impairment of brain function and growth.
It’s actually a mutation of the SCL2A1 gene, which is the gene that provides instructions to produce protein, that causes GLUT1 Deficiency Syndrome. It’s a rare condition that is most likely to have no family history as it most commonly happens because of a new mutation. However, rarely one parent might be affected.
For most children, seizure activity will start to occur after the first few months of life, although it can also happen later in life for children between 2 to 4 years of age. Seizures can be of any type, however, most commonly they will be myoclonic, atonic and tonic-clonic.
Balance and coordination, as well as abnormal limb and eye movement may also provide telltale signs of the syndrome. Children may also appear to be dazed and confused, especially when they wake up before breakfast or when they haven’t eaten adequately.
Babies who develop the syndrome will likely exhibit slow head growth as a result, alongside developmental delay. This can manifest itself as stiffness of the limbs and abnormal posturing. Older children may also experience imbalance, confusion, lethargy, total body paralysis and movement disorders.
GLUT1 Deficiency Syndrome is diagnosed using a lumbar puncture, also known as a spinal tap. This allows a comparison between the glucose levels in the cerebrospinal fluid with those in the blood, if there is a discrepancy less than 0.4 this can be a strong indicator of GLUT1 deficiency.
It’s also possible that genetic testing and an electroencephalogram (EEG) may be arranged to further confirm the syndrome.
Unfortunately, with this particular syndrome it’s highly unlikely that epilepsy medications will be able to fully control seizures in children.
There is no known cure for this syndrome, however, a ketogenic diet can be the most effective form of treatment. A ketogenic diet is a low carbohydrate, high fat diet that allows the body to make ketones that the brain can use as an alternative to glucose.
With the aid of a ketogenic diet, seizures may be controlled and may also help to improve any developmental issues. However, in most cases learning will still be inhibited to some degree and children will likely need assistance with education, feeding and other physical activities. In most cases, the ketogenic diet may need to be continued throughout childhood and quite possibly into later life to help manage the syndrome.
There are approximately 20,000 people in the UK who have photosensitive epilepsy. At present, there are guidelines on warnings for films and TV to warn those who may be affected by flashing images. However, there have been recent calls that the government needs to do more to safeguard people who are watching videos online.
There has been an increasing number of complaints from those with photosensitive epilepsy who have been affected by videos with fast-paced and flashing imagery that leaves them vulnerable to seizures. The argument is that a simple warning before the video starts would be enough to prevent many people from watching content that could trigger a seizure.
More worryingly, there have been reports of ‘malicious content’ surfacing that seeks to actively encourage people with epilepsy to watch content that may trigger a seizure. These videos have been developed with flashing lights but tagged with epilepsy-related keywords to increase the chances they will be viewed by people who have photosensitive epilepsy.
Photosensitive epilepsy is most common in children and young people, which makes them even more susceptible to online content as they typically consume more than the older generations.
The rise of social media has made it easier than ever for those with photosensitive epilepsy to be subjected to potentially harmful content. On most sites, it’s common for videos to autoplay making it more difficult to avoid this type of content. Everything from homemade videos to professional film trailers has been reported to have triggered seizures, which highlights the sheer scale of the problem. This creates a minefield situation, especially for teens for whom the temptation to participate socially online is often stronger.
What can be done?
New regulatory measures to help protect people with photosensitive epilepsy from potentially harmful online content could be introduced. This could form part of the government’s Online Harms White Paper. This would enable fines for tech companies and online content creators that fail to provide suitable warnings about flashing images.
Should the content be deemed as malicious and created with the intent to harm people with photosensitive epilepsy it could even lead to prosecution. A deliberately cruel act such as this is not only careless, it’s particularly dangerous and should be treated in the same way as any other kind of aggression against a specific group.
What has been done so far?
A letter has been written urging Secretary of State for Digital, Culture, Media and Sport, Jeremy Wright to implement new measures within the Online Harms Whitepaper. Within he is asked to make the dangers of flashing imagery clear and encouraged to make it mandatory that all online posts should carry a warning similar to those on more traditional media sources, such as TV and films.
Epilepsy is a rather broad terminology for a group of symptoms that has one thing in common, seizures that arise in the brain. As such, there is a broad range of potential causes that can lead to a person being diagnosed with epilepsy.
Causes of epilepsy can be incredibly complex and are often difficult to identify, with many people unsure of the cause. In fact, it’s only within the minority of cases that the cause is apparent with up to 70% of all cases having no clear cause.
Genetics can play a role in epilepsy. Many people are born with epilepsy as a genetic defect that has been passed down from one or both parents, also known as inherited epilepsy. However, it’s not always inherited, epilepsy can be caused by a genetic mutation where there is no family history of epilepsy.
Genetic disorders, such as tuberous sclerosis or neurofibromatosis can also be an underlying cause of epilepsy. Both of these disorders can cause tumours on the brain and nerves that can create a structural change to the brain.
Some researchers believe that the cause of epilepsy is always genetic on some level and that a person may be predisposed to seizures. If true, this means that there are people who are more susceptible to developing epilepsy, even if it happens later on in life. It’s believed that there is a scale where people can range from high to low risk.
Often a person will develop epilepsy as the result of a brain injury, this is known as a structural or symptomatic change to the brain’s chemistry. This could be caused by a head injury. Seizures will usually start to occur during the first week after a person sustains a brain injury, however, it’s not entirely uncommon for a person to start having seizures months or even years after. In many cases, seizures will become less frequent with time, although for some it can be much more long term.
Illness or Infection
Infections, such as meningitis, as well as strokes and tumours can also be a structural change that results in the development of epilepsy. All of these can create structural and lasting changes to the brain that can be the basis of a person developing epilepsy.
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For more advice or information epilepsy and the potential causes or to enquire about our care services and training courses, please call us on 01706 373075 or email email@example.com.
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For many people with epilepsy, this may mean taking lifelong medication, also known as AEDs. In many cases, this requires taking the medication consistently at regular times of the day. After all, a missed dose or accidentally taking an extra dose can potentially lead to a seizure.
Keeping track of medication can be a challenge for many people with epilepsy, especially those who experience memory impairment as a result of their epilepsy. In this post, we’re going to discuss some practical advice on taking your medication consistently.
One of the most simple tips we can offer is to organise your medication into labelled medication boxes each day. You can even purchase ones that have multiple containers for each day. This may be an effective way to ascertain your medication routine and this can help you to avoid taking too little or too much.
We should warn, however, that although most medication can be safely stored in a medication box, some should not as they are advised to be stored in their original packaging. It’s worth checking with your prescriber to ensure you are safe to do so beforehand.
There are many quick and effective ways to set yourself a reminder, especially in the 21st century! Most modern mobile phones will enable you to set recurring reminders with an optional alarm to alert you that it’s time to take your medication. In addition, there are specialised apps that are designed to help you keep a consistent schedule with your medication.
Create an association
This is known as the ‘if this – then that’ technique, which means that you should create a routine that you associate with taking your medication at the right time. It needs to be something that you do every day and ideally at a certain time. For example, you may choose to take your medication just after brushing your teeth every morning. Over time, you will create a strong association between these two activities which makes it far less likely that you will fail to do it.
Keep a diary or chart
Many people find keeping a simple diary or chart is an effective way to manage their medication. It doesn’t have to be an in-depth record (although this could be helpful for other reasons), but even simply marking the dates and times of your medication and dosages will give you a reference point should you become confused or unsure of your medication intake.
Charts and diaries are especially useful for those who are new to taking regular medication, which is when a person is most likely to forget. They can also be really useful if you are changing medications or dosages and are still adjusting to the new prescription and its requirements.
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It’s around this time of year that many students will already be making plans to go to university at the end of Summer. There’s a lot to consider: which university to go to, where to live, what to study and much more. It’s an exciting time and is often the first time that a young adult will step out into the world on their own and start to gain their independence. Similarly, for older students, it can be a chance to retrain and pursue a different career path. However, for those living with epilepsy, there are a few additional things to consider.
Should you attend university?
We would answer this question with a very clear, yes, if that’s what you want to do then there is absolutely no reason to let your epilepsy stand in the way of seeking further education. Of course, like most things in life for people with epilepsy you may need to weigh up your decision a little bit more carefully. In this post, we’ll some up some of the key considerations to help you make the decision that is ultimately best for you.
Which university should you attend?
For people with epilepsy, it may come down to a lot more than which city has the best reputation. It might be that you want to consider those universities that are closer to home so that you have family and support nearby should you need it. However, if you have your heart set on travelling further afield then universities have a duty of care to ensure you have the support you require on campus. This can include specialised residencies, on-campus healthcare and ensuring all of your tutors are aware of your epilepsy and trained to respond in the event of a seizure.
Staying near home gives you the option to carry on living at home and commute. For many though, this isn’t the independence that they are seeking and we would advise that you make your own choice here, but ensure that if you are further afield (and even if you are close to home) that you ensure the university is aware of your epilepsy and steps have been taken to meet your requirements.
Disruptions to learning
University may be academically tough, and many people with epilepsy will, unfortunately, have their learning interrupted. This could be due to seizures and recovery that simply means missing classes and deadlines. The possibility of falling behind in a university environment can be a very real concern for many,
Only you will truly know whether this consideration affects you. Although many do experience disruptions, it’s entirely possible to stay up-to-date with course materials. It’s also highly likely that you could be given some special considerations in respect of your epilepsy which can often lead to longer deadlines and additional tutoring if required.
Finally, as previously mentioned, choosing to go to university is a big life decision that can have an effect on your wellbeing, whether positive or negative. There is a multitude of things to take into consideration in this area, including a possible change in sleeping and eating patterns, increased alcohol intake (in some cases) and additional stress. If you do choose to attend university, it’s incredibly important that you take steps to ensure your wellbeing, both physical and emotional, is also considered.
13 UK healthcare bodies have combined to provide new guidance on the prescription of sodium valproate medications for women of childbearing age. These medications include those under brand names such as Epilim, Epival, Episenta, Convulex and Orlept.
The risks of prescribing sodium valproate
The prescription of sodium valproate to women of childbearing age has long since been known to carry inherent risks, with a 40% increase in risk for neurological disorders and a 10% increase for physical disabilities of unborn children.
Previously guidelines had stated that sodium valproate should not be prescribed to women of childbearing age unless there was no other alternative. Should this be the case they should be fully informed of the risks and ideally enrolled into a pregnancy prevention plan. However, these guidelines have come under scrutiny after a series of complex situations have thrown the debate about patients wellbeing and their best interests.
Claire Glazebrook, Director of Fundraising, Marketing and External Affairs at Epilepsy Society, said: “Over the last year our Helpline has received multiple calls from women, parents and healthcare professionals, all struggling to interpret the guidelines and what they mean for them as individuals. And we know that this experience is replicated across other patient organisations and clinics.
“I hope this guidance will help to answer some of their questions and provide clarity in what can be a very emotional and challenging decision.
“For some girls and women, they have no option but to take sodium valproate as it may be the only drug that will control their seizures. But that, of course, means there are some very important and potentially heartbreaking issues to consider around planning a family.
“All these women and girls deserve consistency in the advice and information that they receive.”
The new guidance
It is hoped the new guidance will allow healthcare professionals to implement the Medicines and Healthcare products Regulatory Agency’s (MHRA) original guidance more effectively when prescribing to varying age groups and help to remove some of the doubt that has been created. This will be a welcome relief to those prescribing physicians who have been in difficult situations when deciding whether to prescribe sodium valproate.
Sanjay Sisodiya, Director of Genomics at Epilepsy Society and Professor of Neurology at University College London said: “In some cases, the new regulations have lead to situations where the best interests of the patients may not appear to be best served. Some of the points raised by the regulations are also complex ethical issues. We do not attempt to address all these issues in this document but hope that it will bring greater clarity for clinicians leading to better care for women and girls with epilepsy. All women and girls have individual needs and where possible should be involved in the choices they make about their own health and plans to start a family.”
Of course, it’s essential that people with epilepsy get the best possible care and receive the medication that is in their best interest. These new guidelines are aimed at aiding healthcare professionals to decide more clearly where the line is for patient wellbeing versus risk to a potential unborn child.
Professor Dame Sally Davies, Chief Medical Officer for England said: “I am very pleased that the Medical Royal Colleges have come together to produce this important and helpful guidance, so that doctors and other healthcare professionals across primary and secondary care are on the same page regarding the use of sodium valproate – including around instances where its use is still appropriate.”
This rare form of epilepsy is slightly more prevalent in males than in females. Epilepsy with myoclonic absences is a syndrome that has no known cause, however, it’s believed that it is likely genetic as 25 out of 100 children with this particular syndrome also have a relative who also has epilepsy. Myoclonic absences are also commonly seen in children with brain abnormalities and genetic disorders, but may also be present in children with no clear cause.
What are the symptoms of epilepsy with myoclonic seizures
There are a number of symptoms that are associated with this syndrome. Perhaps the most typical will be a loss of awareness in surroundings, as is suggested by the name ‘absence’. The severity of this loss of awareness can vary from child to child. This is often accompanied by rhythmic jerking and stiffening of the arms, causing them to become raised above the head. Facial jerking around the chin and mouth is also a common symptom.
Myoclonic absences will normally last a relatively short amount of time, between 5 and 10 seconds, although they can last longer. Seizures are most common when the child is tired or has recently woken up.
Diagnosis for epilepsy with myoclonic seizures
The first stage of diagnosis will normally require an eye witness account of a seizure that will enable the doctor to identify its type. If possible, a video would be even more helpful and enable the doctor to make a diagnosis. It may be necessary for the doctor to provoke a seizure in order to ensure an accurate diagnosis, this is often done by asking the child to hyperventilate for up to 4 minutes.
An electroencephalogram (EEG) test will likely be ordered as well, which should be able to capture the absence and record information that should enable a diagnosis. It’s also possible that a blood test and brain scan may be ordered to establish rare genetic disorders that may be the underlying cause, such as GLUT1 deficiency and Ring Chromosome 20, which are both incredibly rare.
Treatment for epilepsy with myoclonic seizures
Treatment for this particular syndrome can be difficult as it can often be resistant to epilepsy medications (AEDs). However, it’s likely that these will be tried first. Common AEDs for this syndrome include sodium valproate (Epilim), ethosuximide (Zarontin) and lamotrigine (Lamictal) or a combination of different AEDs.
The outlook for epilepsy with myoclonic absences can vary considerably from child to child. Unfortunately, approximately 50% will continue to have seizures into adulthood. Those who don’t respond to treatment are the most likely to develop into other types of seizures. Evidence for learning difficulties and behavioural issues as a result of this syndrome are limited but do exist.
National Epilepsy Training can help
For more advice on epilepsy with myoclonic absences or to enquire about our training and care services, please call us on 01706 373075 or email firstname.lastname@example.org.
Next month marks the start of Ramadan, which begins on the 5th of May and ends on the 4th of June. During this time, Muslim’s from around the world fast for a month to commemorate the first revelation of the Quran. Those observing the tradition will abstain from food and drink during the hours that fall between dawn and sunset.
However, it’s not just for religious reasons that people fast. Many people will also fast for dietary and health reasons. It’s also quite common to do so before an operation where anaesthetic will be used.
Why is it dangerous?
Recent research has found that people who have epilepsy and fast are more at risk of having seizures. The study focused solely on those who were fasting during Ramadan. At present, it’s not 100% clear why this is, however, there are a number of theories that are most likely.
As we have discussed in previous blog posts, sleep and epilepsy are quite commonly linked with some people having the majority of their seizures whilst asleep. Fasting during Ramadan, for example, means having to wake up early to eat before dawn and perhaps going to sleep later after sunset.
Changes in the way epilepsy medication are taken
Some epilepsy medications need to be taken on an empty stomach, however, some medications must be taken with food. This can clearly present a problem for someone who is fasting should their medication require to be taken with food.
Stress and tiredness
Going without food for long periods of time can often lead to people becoming irritated and tired as their body struggles for energy. It’s quite commonly known that with many types of epilepsy a person is most at risk of a seizure when they are tired.
What to do if you are planning on fasting…
Whether it’s for religious or dietary reasons, it’s important to know the potential risks associated with fasting. We would advise that you consult with your doctor or specialist dietician prior to fasting. Medical advice is paramount in minimising the risk of fasting and the possible change in seizure frequency.
For those who are fasting for religious reasons, this can be particularly worrying as there is a strong desire to complete religious duties. However, exceptions are often made when a person’s health is at risk, which could certainly be the case for those with epilepsy.
Finally, if you are fasting before an operation for which you require anaesthetic we would recommend you discuss this with the referring consultant or your epilepsy specialist to discuss your concerns.
ESESS is a particularly rare epilepsy syndrome that develops in mid-childhood, around 4-5 years and normally affects children who already have epilepsy. It accounts for just 0.2% – 0.5% of childhood epilepsy syndromes and it’s slightly more common in males than females (62%). The cause of this syndrome is still currently unknown.
What are the symptoms of ESESS?
There are a number of symptoms that are synonymous with ESESS, one of the first things is that the child’s learning development will slow significantly. This can mean that their ability to understand speech and language is impaired, also known as receptive dysphasia. They can also have trouble expressing their own feelings and thoughts in speech, also known as expressive dysphasia.
There are different types of seizures that can occur, particularly during sleep. However, despite the name, some children will not have any seizures during sleep. Types of seizures may include:
One interesting characteristic of ESESS is that even though sleep patterns are often heavily disturbed with seizures, children will usually wake up feeling refreshed and appearing to have slept well.
An electroencephalogram (EEG) test will usually determine ESESS by monitoring the electrical brain patterns during sleep. The test will show a continuous spike and wave pattern, which is especially prevalent during the part of sleep commonly known as ‘slow wave’. It’s this finding that gives the syndrome its name, however, the abnormal patterns will often show whilst the child is awake too.
With ESESS, metabolic tests, such as blood tests and brain scans will often give normal results.
What’s the treatment for ESESS?
If the seizures are a problem, then it may be that epilepsy medicines (AEDs) are prescribed. Common AEDs for this syndrome include sodium valproate, ethosuximide and clobazam. Prednisolone, which is a steroid medication, has proven to be effective at treating ESESS, however, it requires close monitoring. Sulthiame may also be effective, but only a specialist in paediatric epilepsy can prescribe these two medications.
Unfortunately, for some children, ESESS will not respond to any medication. If the child has this syndrome and frequently experiences prolonged or repeated seizures (status epilepticus), then it’s crucial that a rescue plan is put in place.
For most children who have ESESS, an improvement will be seen during their early teenage years as they enter pubity. In many cases, the EEG results will return to normal and seizures will become less frequent or stop altogether. However, in some cases, ESESS may persist through childhood and into their adult life.
National Epilepsy Training can help
For more information on Electrical status epilepticus during slow-wave sleep (ESESS) or to enquire about our training and care services. Please contact us on 01706 373075 or email email@example.com.