Frequently Asked Questions about Epilepsy
Epilepsy is one of the most common neurological conditions, it can affect around 1% of the general population. A recent report from the US Center for Disease Control and Prevention concluded there are currently more people with epilepsy than ever before. Around 3.4 million people in the United States experience seizures, including 470,000 children. This represents a significant increase on previous data.
In fact, one of the main challenges associated with epilepsy is that it often goes unnoticed and is misdiagnosed because it may be accompanied by other medical problems.
The latest epidemiologic study published in Spain, “Epiberia”, was overseen by Dr Pedro Serrano (Serrano Castro et al., Scientific World Journal, 2015). The study aimed to determine how many people in Spain have epilepsy, to which end they selected three cities: Almeria, Zaragoza and Seville. The research team conducted over 1,700 telephone questionnaires. Possible diagnoses were made according to criteria established by the leading international scientific epilepsy society, the International League Against Epilepsy (ILAE).
An analysis of the study among population led to the conclusion that 15 in every 1,000 people will have epilepsy at some time in their life. However, there were less individuals with active epilepsy, 5.7 in every 1,000 people. Interestingly, they discovered a high percentage of people with inactive epilepsy who did not follow any treatment. This confirmed previous observations; as time goes by, seizures can disappear in some people. They did not find any clear differences based on the subjects’ sex, age or region.
This study has provided an up-to-date estimation of the frequency of epilepsy in the Mediterranean region and reinforces the idea that there is a need for greater public awareness of the symptoms and what to do in the case of a seizure.
Depression and anxiety are common symptoms among people with epilepsy. Despite this, in many cases they are neither diagnosed early nor treated suitably, and this significantly reduces the patient’s quality of life. There is also a misconception that all antidepressants exacerbate seizures, so some doctors are reluctant to prescribe them and a lot of patients are afraid to take them.
Dr Kanner, a neurologist and psychiatrist, investigated this issue in a recently published study (Ribot et al., Epilepsy and Behavior, 2017). The authors studied seizure frequency in almost 100 people with epilepsy who were taking selective serotonin reuptake inhibitors or serotonin–norepinephrine reuptake inhibitors. These are a modern class of medicines, they are well-tolerated and usually used as a first-line treatment for anxiety, depression or both.
The study revealed that none of the patients who had less than 1 seizure/month subsequently experienced a higher frequency or more severe seizures (convulsions) after they started taking antidepressants. Seizure-free patients did not suffer seizure recurrence after initiating treatment. Of the patients who had more than 1 seizure/month, almost a third improved and consequently suffered less than 1 seizure/month. Almost 50% of patients with more than 1 seizure/month presented a significant reduction in seizure frequency – they suffered half or less than half as many seizures. Furthermore, nearly 73% of patients reported a significant improvement in their anxiety or depression.
The study concluded that this type of antidepressants did not worsen the patients’ epilepsy, in fact they could increase control in patients with frequent seizures. In addition, they provided effective control over the psychiatric symptoms irrespective of their effect on the epilepsy.
If you feel anxious or have a low mood, it is important that you tell your doctor, so they may prescribe the most appropriate treatment – it will not affect your epilepsy and may even improve it.
In the past, people with epilepsy were advised not to practice sport, probably out of fear, overprotection and ignorance of its specific risks and benefits.
Scientific evidence shows that physical exercise and practising sport regularly can improve social relationships, self-esteem and overall health.
Consequently, attitudes towards sport and epilepsy have changed a lot over the last few decades, as have the recommendations patients may receive from their doctor.
The International League Against Epilepsy (ILAE) divides sports into different groups according to the risk for the patient and, occasionally, for spectators:
- Group 1. Sports that do not present any additional risk and in which people with epilepsy can participate, generally without restrictions. For example, tennis, golf, dancing, team sports (basketball, handball, etc.), cross-country skiing, bowling, etc.
- Group 2. Sports that involve a moderate risk for patients, such as swimming, ice hockey, horse riding, cycling, skating, weightlifting, skiing, high-intensity athletics, etc.
- Group 3. High-risk activities such as flying airplanes, scuba-diving, motorsports, climbing, paragliding, surfing, windsurfing, etc.
The neurologist should discuss with patients whether it is advisable to practice sports in groups 2 and 3 depending on their type of epilepsy, the type of seizures, seizure frequency and the possibility of medical supervision.
In the case of just a single seizure, factors that indicate the risk of recurrence, such as the presence of a structural injury, must also be considered.
Recommendations concerning practising different sports are valid for all age groups. In fact, as long as the different levels of risk are evaluated, and the patient is suitably supervised, there is no need to restrict the physical activity of children and adolescents either at or outside school.
Many female patients with epilepsy (approximately half) experience an increase in seizures at certain points during their menstrual cycle, above all around the time of ovulation and roughly one week before menstruation. This is known as “catamenial epilepsy”.
It is thought that this reactivation of seizures is due to hormonal changes that occur during the menstrual cycle. Neurons are influenced by female sex hormones, the oestrogens and progesterone. Oestrogens are known to trigger or worsen seizures, while progesterone helps protect against seizures. At certain moments of the menstrual cycle, some women have very little progesterone or imbalanced levels of oestrogens and progesterone, which leads to increased neural irritability.
Increment the dose of antiepileptic medication slightly when you expect an increase in seizure frequency (only in patients with regular cycles and always under medical supervision); take fluid retention reducing medicines during the premenstrual period (this works in some patients); take an additional medication (usually benzodiazepine) when you expect the seizures; taking hormonal agents such as oral contraceptives or progesterone may help, but only in certain patients.
Throughout these stages, it is also important to control certain factors that can bear an influence over your epilepsy, such as sleeping well, avoiding stress and remembering to take your medication.
Besides the potentially harmful effects of antiepileptic drugs on the baby, another concern of patients with epilepsy is uncertainty about how well their seizures will be controlled during their pregnancy. Seizures, especially convulsive ones, are dangerous for both the mother and foetus. Therefore, particularly useful studies are those based on records containing reliable information about a significant number of patients.
A recently published paper (Vajda et al., Epilepsy and Behavior, 2017) analysed data taken from an Australian register between 1998 and 2016. After excluding pregnancies lost in follow-up or due to miscarriage, they were left with 1,939 pregnant patients. Some 42.8% of the subjects suffered a seizure, of which 19.9% were convulsive. Patients who had endured a seizure in the preceding year had a higher seizure frequency (78.4%) than those with inactive epilepsy (22.3%). Of the patients who did not take medication at the start of their pregnancy, 54.9% had some sort of seizure (31.7% were convulsive seizures) compared with 45.5% of patients who took antiepileptics throughout their pregnancy (22.3% were convulsive seizures).
The study concluded that subjects with active epilepsy in the last year or who were not taking medication at the onset were 3 to 4 times more likely to suffer a seizure during pregnancy. Patients with focal epilepsy and those treated with several drugs also experienced more seizures, probably because there are more cases of active epilepsy in these groups.
A recently published scientific paper conducted in the general population analysed the causes of death among patients with epilepsy (Keezer et al., Neurology, 2016).
There is particular concern about preventing sudden death in patients with seizures, especially those with poorly controlled epilepsy and generalised tonic–clonic seizures, since they present the greatest risk.
However, the study revealed that patients with epilepsy generally die due to similar causes as the rest of the population.
The research, carried out in the United Kingdom, found that only 3.2% of the 189 deaths that occurred during 25 years of follow-up on 558 patients were caused directly by epilepsy (status epilepticus or sudden unexpected death in epilepsy, SUDEP). Of the remaining deaths, in 22.8% the cause of death was also the cause of epilepsy (e.g., a brain tumour or stroke that caused seizures).
The most common causes of death were cancer, cardiovascular disease and cerebrovascular disease, which were responsible for 55.8% of all deaths. Other causes were brain tumours, external causes, congenital neurological diseases and neurodegenerative diseases.
The message is that both doctors and patients must pay close attention not only to adequate seizure control to reduce the risk of sudden death or status epilepticus, but also to risk factors associated with cancer and cardiovascular disease (as should the general population). Furthermore, they must remember that certain antiepileptic medications can have a negative effect on some of these risk factors, such as cholesterol.
Many applications have been made available to health services in order to help patients control their diseases. Various apps and wearables have been designed to help control epileptic seizures:
SeizAlarm. SeizAlarm is an Apple Watch™ application developed by Greg Pabst which can send out an alert if the user suffers an epileptic seizure. Pabst conceived the application after he was diagnosed with epilepsy, so that he could warn his relatives whenever he was suddenly overcome by a seizure. The app can emit an immediate or delayed request for help, the latter is in case the user notices the onset of symptoms but is not sure if they will develop into a full seizure. Download for iOS.
Control Diario Epilepsia. Designed by the Carlos Slim Foundation, this app aims to provide a better quality of life for patients with epilepsy by offering them tools to help monitor their condition. It also includes functions for alerting emergency services, recording the time and date of seizures, logging medication administration, recording videos and noting important information for the doctor. Download for iOS and Android.
EpiWatch™. This device was developed by neurology professors at the John Hopkins University. It forms part of a research study and focuses on interoperability, self-care, health professional participation, ease-of-use and usefulness. EpiWatch™ allows patients with epilepsy to track their seizures and predict future episodes using the Apple Watch™ to record their heart rate, body movements, etc. Download for iOS.
App Epilepsia DCA. This application, developed by a student at the University of Alicante, helps detect nocturnal epileptic seizures in children with acquired brain injury (ABI). It is the first application of its kind designed in Spain.
Embrace. This wristband was developed a few years ago by scientists at the Massachusetts Institute of Technology (MIT) to monitor convulsions. It features a sensor that measures heart rate, another which records electrodermal activity, an accelerometer to record patient’s movements, and a cell that also records peripheral skin temperature. The wristband interprets this information to emit vibrations and an alert.
EpiDiary (formerly My Epilepsy Diary). This is a straightforward, free app developed by Irody. It provides epilepsy tracking with real-time data transmission to relatives and health professionals. The app records information on the type and frequency of seizures, medication and side effects. It also reminds patients when they must take their medication. Download for iOS and Android.
Epycare. This is an app project that arose from the I Hackathon de Salud (health ‘hackathon’) conference. It is a prototype app designed to help people with epilepsy improve the management of their condition and treatment, while also describing some routines that could have a positive effect on their health.
Beyond the daily use of technology, graphene sensors were presented at the World Mobile Congress with the intention of detecting epileptic seizures. They are still a vision of the future, but significant progress is being made in the field. The pilot project used the sensors to record brain activity in animals and could therefore be used to warn the patient about an impending seizure by means of their mobile phone.
Either way, it is important to remember that no application or wearable can replace the information provided by health professionals and if you have any doubts or worries about your condition, you should always discuss them with your doctor. What is more, many of these apps still have room for improvement given each patient’s wide range of symptoms and the high number of false positives that can occur (warning signs but without really experiencing a seizure).
Patients with epilepsy often report that their seizures are more frequent when the seasons change, especially during spring and autumn. However, there is very little research into these observations. One study conducted by a group of German researchers (Rakers et al., Epilepsia, 2017) and published in the scientific journal Epilepsia analysed the effect of atmospheric pressure, relative air humidity and ambient temperature on the onset of seizures in patients admitted to hospital between 2003 and 2010.
The authors found a negative correlation between atmospheric pressure and seizure risk. For every 10.7 hPa reduction in atmospheric pressure, seizure risk increased in the study population by 14%. This risk increased further in patients with less severe cases of epilepsy treated with just one antiepileptic drug (by 36%). Relative humidity of above 80% also increased the seizure risk (by up to 48%) in the entire study population 3 days after exposure. However, ambient temperatures of over 20 °C were associated with a lower risk of seizures, up to 46% lower, across the entire population and in different subgroups, particularly men.
The authors concluded that low atmospheric pressure and high relative air humidity correlate to a greater seizure risk, whereas high ambient temperatures seem to decrease the risk. Yet they also asserted that study populations in other areas of the world with different climates should be studied before drawing definitive conclusions and making treatment recommendations.
The ketogenic diet is a well-known treatment commonly used to treat severe cases of epilepsy in children. However, its use in adult patients is still not very widespread, probably due to a lack of multidisciplinary teams that include endocrinologists and dietitians specialising in the ketogenic diet. Also, adults will find it hard to follow this diet because of the constraints it places on what they can eat.
Yet, in fact, the following would make good candidates for this treatment:
- Adult patients with diseases that may respond well to this diet and which you usually develop in childhood (e.g., Rett syndrome, tuberous sclerosis, glucose transporter deficiency syndrome, Lennox–Gastaut syndrome, Dravet syndrome, etc.).
- Patients with drug-resistant epilepsy that cannot be treated surgically.
- Patients with drug-resistant epilepsy who do not want to be treated surgically.
- Adult patients who wish to reduce their medication burden.
- Patients with refractory statuses that do not respond to other treatment.
Studies have shown the diet has a similar effectiveness in adult patients as it does in children.
Depending on the patient, their state of health and dietary preferences, they can choose between variations of the diet that include different proportions of fats, proteins and carbohydrates. The version most used in adults is the modified Atkins diet, which limits carbohydrate intake to 10‑30 g/day. There is no need for a hospital stay when starting this diet, unlike the case of the traditional ketogenic diet.
This diet is contraindicated in certain metabolic diseases. During follow-up, patients must control their weight, take vitamin and mineral supplements and have their fat levels (triglycerides and cholesterol) in blood monitored, especially if they are on the diet for prolonged periods. The medical team also needs to pay attention to the appearance of kidney stones (calculi).
Thanks to the diet’s development for paediatric patients, it is worth noting there are several recipes available (in specialised books or on the Internet) to make it less monotonous and help patients adhere to the diet.
In short, this treatment option can be offered to adult patients with epilepsy that does not respond well to drug therapy.
Mindfulness is a type of psychotherapy that is currently very popular and based around being strongly focused on the present moment. Mindfulness teaches people to accept their current thoughts and bodily sensations without judging them or becoming anxious. It also instructs them not to worry about past events or future concerns. The technique has proven useful in many aspects of health, including pain and stress management and cognitive function.
It is known that patients with epilepsy may have a series of problems besides the actual seizures. They often have depression and anxiety. The fear of enduring a seizure in public can lead to social isolation. All of these factors affect their quality of life and eventually aggravate their seizures.
A group of researchers recently conducted a study (Tang et al., Neurology, 2015) to determine the possible benefits of mindfulness in 60 patients with poorly controlled epilepsy. They divided the patients into two groups, one received social support (standard psychotherapy) and the other received social support plus mindfulness coaching. The sessions were carried out twice a week for 4 weeks.
Patients trained in mindfulness were taught to use active acceptance as a means of dealing with epilepsy-related problems and advised to perform daily exercises at home. Patients who received merely social support participated in a support group where they could talk openly about their illness.
At the end of the study, it was apparent that patients who received mindfulness therapy were less anxious, less concerned about seizures, had a better quality of life and higher energy levels. Additionally, their memory had improved. Seizure frequency decreased in both groups.
During mindfulness training, patients learnt to recognise and accept, rather than ignore, their feelings linked to their seizures, such as fear or unease. By accepting these feelings, patients were able to reduce their anxiety levels and improve their ability to retain information. This suggests mindfulness may be particularly useful for patients who also suffer anxiety (Shapiro and Karceski, Neurology, 2015).
In any event, this study indicates that both social support and mindfulness improve wellbeing, mental health and seizure frequency in patients with epilepsy.