Living with Epilepsy
In some cases, the diagnosis of epilepsy continues to prompt rejection and difficulties in social, academic and occupational settings. Nevertheless, most people with epilepsy can follow a normal lifestyle and achieve satisfactory social and occupational inclusion.
Patients with epilepsy should follow a lifestyle that adheres to some common guidelines, such as drinking alcohol with precaution, following appropriate sleeping habits, avoiding stress, taking medication correctly and following the safety recommendations indicated by their neurologist.
These recommendations should be reinforced with others that are specific to the patient’s age, their family, school or occupational environment, the type, timing and frequency of seizures, the anxiety the seizures induce in the patient and/or their family, and their antiepileptic drugs. For some patients, especially those with drug-resistant epilepsy, the psychological and social consequences can be very significant and even more incapacitating than the actual epileptic seizures. Whereas others with well-controlled epilepsy do not experience significant psychosocial problems.
If necessary, an appropriate psychological intervention, either individually or in groups, helps patients accept their illness, adhere to treatment and reduce anxiety. Any concurrent psychiatric problems must be treated with the aid of an experienced psychiatrist, who may prescribe medication if necessary.
There should be clear communication between the patient with epilepsy and their neurologist, given that all antiepileptic drugs have a specific side-effect profile. Most are dose-dependent, so if any side effects develop the patient’s medication should be adjusted to rectify the problem (lower doses, substitution with another drug). It is important to recognise psychiatric (e.g., depression) and cognitive side effects (e.g., slow thought processes or memory problems), as they are very important factors in the patient’s quality of life.
Excessive alcohol consumption can trigger epileptic seizures. It has been shown that the risk of triggering a seizure increases after drinking 50 g of ethanol in one day; i.e., as more alcohol is consumed, the risk of a seizure increases. This explains the prevalence of epilepsy among alcoholics; in developed countries, it is almost triple the rate observed in the general population. Individuals who frequently consume a lot of alcohol can suffer a seizure (usually generalised tonic–clonic) within hours or days of being suddenly deprived of alcohol, along with other symptoms. Alcohol acts on neurotransmitters (with preference for NMDA and GABA receptors). Acute alcohol intake inhibits the former and increases activity at the latter, an impact that lasts for hours after consumption and can produce a rebound effect. Alcohol’s seizure inducing effect is also known to be enhanced through the potential for interaction with some antiepileptic drugs and, above all, due to the association with environmental triggers such as poor-quality sleep, amongst others.
Tobacco consumption has not been observed to provoke epileptic seizures. Nevertheless, smoking is discouraged.
People with epilepsy should follow a rich and well-balanced diet. Spicy condiments (pepper, chilli) or stimulating beverages (coffee, tea, mate, cocoa or colas) can rarely trigger seizures if consumed moderately. Patients should avoid energy drinks, especially those with taurine. Some very severe types of epilepsy, particularly during childhood, can be treated with low-carbohydrate diets (ketogenic diets).
Physical exercise is believed to be beneficial for people with epilepsy. The benefits are related to the improvement in cardiovascular and psychological health, greater social activity and reductions in stress levels, can translate to fewer seizures. Depending on their type of seizures, patients should not practise certain sports or perform them under close supervision if they imply a risk for the patient if they have a seizure. In principle, high-risk sports are also contraindicated in patients with epilepsy.
There is a very close relationship between epilepsy and sleep. All types of epilepsy are sensitive to insufficient sleep, particularly if the deprivation is over an extended period. Therefore, all epilepsy patients must follow an appropriate sleep–wake cycle, in other words, sleep 7–9 hours per day depending on their age, and according to a regular schedule. In some types of epilepsy, seizures occur almost exclusively when asleep or waking up.
The main changes in sexual function in people with epilepsy are hyposexuality, decreased libido and impaired fertility. Furthermore, men can experience erectile dysfunction and premature ejaculation. It is difficult to establish which effects are due to psychological upheavals, the epilepsy’s influence on the hypothalamic–pituitary–gonadal axis or the metabolic changes caused by some drugs (enzyme inducers). Patients should consult their doctor, since the treatments are similar to those used in the general population.
People with epilepsy should take precautions when travelling, for example, on airplanes or boats. It is recommendable to take a medical report indicating the patient’s current antiepileptic treatment and carry enough medication to last a few days in their hand luggage. Patients should also take care with the change in time zones, ensuring they maintain the correct number of hours between each administration. Regarding driving vehicles, regulations may be different between countries.
Intensification of epileptic seizures and an increased dependency on others often lead to passivity and low self-esteem. The main problem for people with severe epilepsy is a lack of social contacts and friendships. Some have never had an emotional partner. An excessive fear of being rejected means they do not always explain their condition to friends, neighbours and workmates. Appropriate psychological intervention, individually or in groups, decreases stress, helps manage anxiety and teaches patients integration strategies.
People with active epilepsy are exposed to a greater risk of home accidents (when showering or preparing food, or due to electrical appliances such as radiators and stoves) or suffering falls that result in head or facial injuries. The risk is greater in people with seizures involving a loss of consciousness. Patients must follow safety indications provided by their neurologist and comply with driving regulations.
What to do in the event of a seizure
Always stay with the person until the seizure ends:
- Seizures can be unpredictable, and it is hard to guess how long they will last or what will happen during each one. Some can start with minor symptoms but develop into a loss of consciousness or fall, while others may be very brief and end in seconds.
- The patient could be injured during or after a seizure and they may require help from others.
Pay attention to how long the seizure lasts:
- Time the duration of the seizure, from the onset up until the end of the “active” part (e.g., the spasms during a convulsive seizure).
- Note how long they take to recover and return to their normal level of activity.
- Get help if the seizure lasts for longer than usual.
- It is important to know when to use rescue medications, such as Stesolid® or Buccolam®. Follow the instructions given by the neurologist.
Stay calm, most seizures only last a few minutes. How you respond to a patient’s seizure could affect how other people react. If you are calm, it will help others to remain calm as well. Talking calmly and reassuring the patient during and after the seizure.
Remove dangerous objects from the surrounding area. If the patient moves around and is confused, try to make sure they do not injure themselves. For instance, keep them away from traffic, train platforms or elevated locations.
Make them feel comfortable. Help the patient sit down in a safe place. If it looks like they may fall over, get help and work together to lay them on the floor. Support their head to protect it from blows.
Do not restrain the patient firmly.
- Restraining the patient forcefully or trying to restrict their movements will not stop the seizure, in fact these actions could injure them and make them feel more confused and agitated.
- Generally, patients do not behave aggressively during seizures. However, if you restrain a patient while they are confused, they may react aggressively. Let them move around if they want to, but within a limited and safe area.
Do not put anything in the patient’s mouth. Remember that people cannot swallow their tongues during a seizure. Therefore, do not put anything in the patient’s mouth because they could break and swallow the object, damage their teeth or bite the fingers of the person trying to help them.
Observe their breathing.
- If the patient is lying down, place them on their side with the mouth facing towards the floor. This will help them breath and stop saliva from accumulating in the mouth and airways. In the case of a convulsive seizure, you may notice the patient stops breathing. This is because the respiratory and throat muscles contract during the tonic phase of the seizure. When this stage of the seizure ends, the muscles will relax, and the person will start to breath normally once again.
- These breathing changes do not call for mouth-to-mouth resuscitation, but once the seizure has ended you should move the patient and try to arouse them to aid their recovery.
Do not give the patient water, tablets or food until they have fully recovered. If the person is not fully conscious and aware of their surroundings, they may not swallow correctly. They may choke if given food, liquids or tablets. If you think they are choking or having trouble breathing normally, lay them on their side and call emergency services.
Call emergency services if:
- The seizure lasts for over 5 minutes.
- The seizures recur, and the person does not recover between each one.
- The seizures recur more frequently than is normal for this patient.
- The person is not breathing very well.
- The patient seems to be choking.
- The seizure occurs in water (e.g., in a swimming pool or bathtub).
- The person is injured during the seizure.
- You believe it is the first time the person has suffered a seizure.
- The patient asks for medical attention.
Prediction of epileptic seizures
The unpredictable nature of epileptic seizures is one of the factors that causes the most anxiety. If there were some way of knowing when seizures were going to occur, most patients would be able to go about their daily activities with greater freedom and confidence. They could also take steps to ensure they were less intense (by taking extra medication, for example) or less dangerous (by sitting or lying down to avoid falling).
Here are some of the areas that are currently being explored to help predict epileptic seizures:
Electroencephalogram (EEG). Electrodes are placed on the skull to take a constant measurement of the brain’s electrical activity and detect any changes that occur before a seizure, which are unique to each patient and may vary from seizure to seizure. Hence, neurologists perform some very complicated calculations to predict seizures accurately and avoid that they go undetected, or conversely, there are a lot of false alarms.
Heart rate. In some patients their heart rate changes just before and during the seizure. These changes can help predict when a seizure will occur. However, they must be measured accurately to avoid confusing them with other situations associated with changes in heart rate, such as anxiety or exercise.
Skin. Some patients’ seizures are related to thermal and electrical changes transmitted through nerves and sweat in the skin (electrodermal activity); these may be accompanied by changes in their breathing rate. These changes can be detected using wristbands or belts which may help anticipate seizures.
Personal electronic devices. Efforts are underway to develop apps, for example for smartwatches, that could help predict seizures by analysing changes in heart rate and wrist movement patterns before, during and after seizures.
Dogs. It seems some dogs, by means of unknown mechanisms, can help detect when their owners will have a seizure. However, trainers are yet to develop a method for training dogs to carry out this task. Nevertheless, there are programmes that train dogs to help their owners during the seizure and look for help after it has occurred.
The actual patient. Many patients with epilepsy can sense when they are going to suffer a seizure. Some report that on certain days they feel “unusual” for a variable length of time and this tends to indicate a seizure will ensue. These are called “prodrome” symptoms and differ from auras which only occur for a short time and at the beginning of the actual seizure. Patients with prodromes should be taught to implement measures that result in less intense and/or less harmful seizures.