All ages are affected by the chronic, noncommunicable brain disease known as epilepsy. And epilepsy, which affects about 50 million people worldwide, is one of the most prevalent neurological conditions.
What is Epilepsy? Symptoms, Causes, Diagnosis, Treatments, Precautions, & More
Epilepsy is a central nervous system (neurological) disorder. In epilepsy, abnormal brain activity results in seizures or periods of strange behavior, sensations, and occasionally loss of awareness.
What is Epilepsy?
A chronic brain condition called epilepsy causes recurrent “fits” or “seizures.” Sudden, excessive electrical discharges in the neurons or brain cells cause seizures. People of any age can develop this condition, and different issues arise for each age group.
Around 50 million people worldwide, 80% of whom reside in developing nations, are thought to have epilepsy, according to the WHO. Although it is a treatable condition, three-fourths of those affected in developing nations do not receive the right care. In India, there are roughly 10 million people who experience seizures linked to epilepsy.
A person is diagnosed with it after experiencing multiple seizures. Additionally, it is evident that not all seizures are caused by epilepsy. Other conditions, such as extremely low blood sugar, fainting, etc., can also cause seizures. The majority of epilepsy cases are diagnosed in children and adults over 65.
Epilepsy can be caused by both genetic and acquired factors, and these factors frequently interact to do so. While older people are more likely to experience brain tumors and strokes, younger people are more likely to experience epilepsies brought on by genetic, congenital, or developmental conditions.
Genetics
The majority of cases are thought to involve genetics, either directly or indirectly. Only 1-2 percent of epilepsies are caused by a single gene defect; the majority are brought on by the interaction of many genes and environmental factors. There are fewer than 200 single gene defects known, and they are all rare.
Phakomatosses
Phakomatoses are a class of multisystemic diseases that primarily affect the skin and central nervous system. They are also referred to as neurocutaneous disorders. They are brought on by abnormal embryonic ectodermal tissue development, which is typically the result of a single genetic mutation.
Acquired
Tumors, strokes, head trauma, previous infections of the central nervous system, genetic abnormalities, and birth-related brain damage are a few other conditions that can result in epilepsy.
Some other common causes of epilepsy are:
Infection in the brain.
Congenital abnormalities
Stroke and brain Tumors
Damage to the brain due to prenatal and perinatal injury.
Injury in the head or accident.
During childhood prolonged high fever.
Infections like encephalitis or meningitis.
Low oxygen during birth.
Some genetic conditions like tuberous sclerosis may result in brain injury.
What are the symptoms of Epilepsy?
Some evidence links epilepsy and celiac disease and non-celiac gluten sensitivity, while other evidence does not. The early signs and symptoms of Epilepsy are:
Loss of consciousness
Muscles of arms, legs, or face become stiffed
Different types of sensations like sort of pricking pins or needles in arms or legs
Uncontrollable jerking motions in arms or legs etc
How to deal with the seizures caused by epilepsy?
There is proof that epileptic seizures are typically not an arbitrary occurrence. The causes of seizures, also known as triggers, include things like stress, excessive alcohol consumption, flickering lights, and sleep deprivation, among others. The amount of stimulus required to trigger a seizure is known as the seizure threshold, and it is lowered in epilepsy.
And the tips to deal with seizures are:
Don’t panic.
Lose tight clothes near the neck.
Remove sharp objects from the person suffering from seizures.
Gently roll the person from one side so that any fluid present in the mouth comes out.
Under the head of the person put some type of soft cloth.
Do not give or push anything to the mouth of the person.
Remain with the person until any help arrives.
Allow the person to rest or sleep.
How to diagnose Epilepsy?
Epilepsy is typically diagnosed based on observation of the onset of seizures and their underlying causes. Initial investigations frequently also include an electroencephalogram (EEG) to check for abnormal brain wave patterns and neuroimaging (CT scan or MRI) to examine the structure of the brain. It is not always possible to identify a specific epileptic syndrome, despite frequent attempts. In complex situations, video and EEG monitoring may be helpful.
Remember that the right medications can be used to treat epilepsy. However, it’s crucial that we start the treatment right away. As soon as the illness is identified, the treatment can begin. By doing this, we can stop the person’s condition from getting worse.
What are the precautionary tips for Epilepsy?
Even though many cases cannot be prevented, efforts to lessen head injuries, offer proper care during childbirth, and eradicate environmental parasites like the pork tapeworm may be successful.
And some other preventive measures are:
If the epilepsy patient does not suffer from seizures then also it is advised to take proper medication as advised by the doctor.
Don’t discontinue medicine without the advice of a doctor.
Before taking any other medication, it is better to consult or take advice from the doctor.
Don’t drink alcohol because it provokes seizures.
With the use of the right medication, epilepsy can be cured as it is a treatable condition. National Epilepsy Day is observed on November 17 each year to raise awareness of the condition and encourage people to take the recommended medications. Through seminars, lectures, etc., this day also educates people.
Researchers from the University of Pisa have found that listening to Mozart’s music can reduce the frequency of epilepsy attacks. The concept that listening to Mozart’s music may have beneficial side-effects on mental health started with several ‘Mozart Effect’ findings in the 1990s. However many of the studies since then have been too small, or of variable quality, leading to mixed evidence overall and therefore regarded with scepticism by many clinicians.
Now two Italian researchers, Dr Gianluca Sesso and Dr Federico Sicca, have conducted a systematic review of works related to the effect of Mozart’s music on epilepsy. They looked at 147 published research articles and used scientifically approved methods to analyze clinical treatments in multiple published works. They then separated twelve research papers into nine groups representing the highest level of available science on Mozart’s music as an epilepsy treatment.
Listening to Mozart reduced epileptic seizures
The researchers found that listening to Mozart’s music, especially on a daily basis, reduced epileptic seizures by an average of between 31 and 66 percent and also reduced the frequency of interictal epileptiform discharges, the spikes that occur between seizures, in epileptic patients.
“This isn’t the first such review of the effect of Mozart’s music on epilepsy,” noted Dr. Gianluca Sesso. “But there has been a flow of new research in the last few years, so it was time to stand back and look at the overall picture.”
The original studies of the ‘Mozart Effect’ used Mozart’s Sonata For Two Pianos in D major, K. 488 and this has remained the music most used in studies. Mozart’s Piano Sonata No. 16 in C major, K. 545 also appears to be effective.
“All cultures have music, so it obviously fulfils some psychological need,” said Dr. Gianluca Sesso. “The mechanisms of the ‘Mozart Effect’ are poorly understood. Obviously other music may have similar effects, but it may be that Mozart’s sonatas have distinctive rhythmic structures which are particularly suited to working on epilepsy.”
Epilepsy drugs do not work for about 30 percent of patients
Epilepsy is a common neurological disorder affecting nearly one in one hundred people worldwide. Mostly it’s treated by drugs but they do not work for about 30 percent of patients. Listening to Mozart’s music may provide a viable, non-invasive treatment.
“We need to be open to other therapies,” said Dr. Gianluca Sesso. “The important thing is that these therapies can be tested and shown to work, and this is what we have shown here.”
This is a review of research, and not original research. One thing it shows is that we need more consistent studies into the effect of music on the mind.”
The results of this comprehensive meta-analysis (a study of studies) were presented at the 33rd European College of Neuropsychopharmacology Congress – an independent scientific association dedicated to the science and treatment of disorders of the brain.
Over on the ERUK Research Blog this month, we’ll be looking in more depth at treatments for epilepsy. We’ll hear more about why getting the right treatment matters so much, and how research will continue to help people live a life free from epilepsy.
Once a diagnosis of epilepsy has been made, treatment can begin. Anti-epileptic drugs are the first option offered to most people, with the aim being to reduce or stop seizures. However, these drugs can’t control seizures in about one-third of people with epilepsy – a figure that hasn’t changed in decades.
With so many different types of epilepsy, and every person having different needs, finding the right treatment and the right dose can take many years of trial-and-error. And even if the treatments work, the side-effects they cause can have a significant impact on a person, their daily activities, and the dreams they hope to put into action.
Paola knows how epilepsy can interrupt life’s plans. This week on the ERUK Research Blog, she’ll share her experience of how treatments eventually controlled her seizures, but not without disruptive side effects, until she started thinking about her future and having a family.
People with epilepsy like Paola deserve better. We need to find better ways to diagnose different forms of the condition so that people get the correct treatment quicker. We need to tailor treatments to individual patients, to ensure everyone gets the treatment that’s best suited for them. And we need to reduce side effects and provide new options for people whose epilepsy does not respond to existing treatments.
Research has a strong track record of delivering new medicines to control seizures. As we highlighted in ’#ALifeInterrupted – Shaping the Future of Research into Epilepsy’ report, we now have more than 30 drugs approved for different types of epilepsy, and over 50 additional drugs in development. Last month, we launched the SHAPE EPILEPSY RESEARCH NETWORK and already people living with epilepsy have told us how epilepsy treatments are a priority for them.
But how exactly are treatments for epilepsy invented? How do ideas and discoveries in the lab become the drugs that people take every day or the treatments of the future? Later this month, Professor Richard Baines will give an overview of the drug development process in his blog post – from the first discoveries in the lab, right through to developing new drugs and into clinical trials.
Drugs are not the only way that epilepsy is treated. For the one-third of people whose seizures can’t be controlled by medication, other options may hold more promise. Dr Rob Wykes, a researcher funded by Epilepsy Research UK, is using graphene – a material commonly used in the electronics and energy industry – to help improve potential treatments for drug-resistant epilepsy. Later this month on the ERUK Research Blog, he’ll share how his work could be used for treatments such as epilepsy surgery and gene therapy, to prevent and control seizures that are resistant to other treatments.
Research will help us better understand the causes of epilepsy and how seizures occur, which will lead to new targets for drugs. Research will provide new ways to monitor how well treatments are working, so that people get the right treatment at the right dose, sooner. Ultimately, we believe that research will help make sure that everybody gets the treatment they need to live the life they hope and plan for, free from epilepsy.
Look out for further insights into epilepsy treatment from Paola, Richard, and Rob throughout November on the ERUK Research Blog. And if you’d like to hear more from them, and their hopes for the future of epilepsy treatment, they’ll all be talking at our webinar later this month.
Epilepsy is not one single condition. Epilepsy is defined as a spectrum of disorders that involve the central nervous system (brain and spine). In epilepsy, abnormal brainwaves disturb brain activity, leading to seizures. Seizures may cause people to have unusual sensations or emotions, behave in unusual ways, or experience convulsions or loss of consciousness. Brain damage, illness, and irregular brain development can all cause abnormal brainwaves that lead to seizures.
Approximately half of all people who have had one seizure will have more. However, in order to be diagnosed with epilepsy, a person must have had more than one seizure, and doctors must consider it likely that they will continue to have seizures.
Some forms of epilepsy only last for a limited time, while others are lifelong. There are many treatments available for epilepsy; about 70 percent of people with seizures can control them effectively with medication.
There are many different types of seizures, and some people with epilepsy will experience more than one type. Learn more about epilepsy symptoms and seizure types.
The history of epilepsy
People have been aware of epilepsy and seizures for millennia. A Babylonian medical textbook made up of 40 tablets and dating to 2000 BCE contains a chapter that accurately describes many of the different types of seizures known today. However, seizures were thought to be supernatural in cause – each seizure type was associated with a different evil spirit or angry god – so the treatments prescribed were spiritual.
By the 5th century BCE, the Greeks still considered epilepsy a “sacred” disease. Yet, in the writing of Hippocrates, the ancient physician described epilepsy as a brain disorder – a radical idea for the time. He recommended physical treatments while also recognizing that if the seizures became chronic, the disorder was incurable. The word “epilepsy” comes from the Greek word epilepsia, meaning “to seize” or “to take hold of.”
Despite Hippocrates’ writings, epilepsy continued to be considered a supernatural condition for the next two millennia. People with epilepsy were subjects of immense social stigma, treated as outcasts and even punished as witches. In many places, people who suffered seizures were prevented from going to school, working, marrying, and having children. There were a few men with epilepsy who occupied prominent positions – including Julius Caesar, Tsar Peter the Great of Russia, Pope Pius IX, and Fyodor Dostoevsky – but most people with epilepsy were prevented from living as full members of society.
During the Renaissance, some scientists tried to prove epilepsy was a physical, not spiritual, illness. It wasn’t until the 19th century when neurology became a recognized medical discipline (separate from psychiatry), and the idea of epilepsy as a brain disorder took hold in North America and Europe. In 1857, Sir Charles Lacock introduced bromide as the first anti-epileptic drug (AED). In the mid-to-late 1800s, a variety of epilepsy colonies and treatment facilities opened.
In 1873, a British neurologist named John Hughlings Jackson first described epilepsy as we understand it today. Jackson proved that seizures are caused by sudden, brief electrochemical discharges of energy in the brain. In 1909, the International League Against Epilepsy was founded as a global professional organization of epileptologists. By the 1920s, Hans Berger, a German psychiatrist, had developed the electroencephalograph (EEG) to measure brainwaves. It showed that each type of seizure is associated with a different brainwave pattern. The EEG also aided in the discovery that specific sites in the brain were responsible for seizures and expanded the potential for surgical treatments. Surgery became a more widely available option by the 1950s.
Phenobarbital was identified as an AED in 1912, and Phenytoin (sold under the brand names Dilantin and Phenytek) was developed in 1938. Both drugs continue to be used today. Carbamazepine (sold under the brand names Tegretol and Carbatrol) was identified in 1953. An accelerated drug discovery process began in the 1960s as scientists gained a better understanding of the brain. Keppra (Levetiracetam) was approved by the U.S. Food and Drug Administration (FDA) in 1999. Several newer drugs, including Vimpat (Lacosamide), Briviact (Brivaracetam), and Aptiom (Eslicarbazepine acetate) have been introduced in past 10 years. Other promising medications are in the pipeline.
Neuroimaging capabilities have also improved over the past few decades. Magnetic resonance imaging (MRI), computer tomography (CT) scans, and other techniques are able to detect more and more subtle brain lesions responsible for epilepsy.
The stigma around epilepsy has lessened as more people are able to effectively treat their seizures; however, epilepsy largely remains an “invisible” illness. Millions of people in developing countries do not have access to AEDs, and stigma and discrimination are still widespread, especially in places where people still believe that seizures have a supernatural cause.
How common is epilepsy?
Males and females of all backgrounds, races, ethnicities, and ages are equally affected by epilepsy. It is estimated that epilepsy affects 1 percent of the population of the United States and over 65 million people worldwide, making it one of the most common neurological disorders. Approximately 45,000 children under the age of 18 are diagnosed with epilepsy every year in the U.S., and roughly 10.5 million children worldwide live with epilepsy.
The majority of people with epilepsy live a normal lifespan. However, people with epilepsy do have a higher overall risk of dying than the general population. How epilepsy affects mortality depends on the frequency and severity of seizures. For people whose epilepsy has an unknown cause, life expectancy is two years shorter on average. People whose seizures have a known cause die, on average, as many as 10 years before the average life expectancy. Some early deaths may be a consequence of falls or accidents – people with epilepsy and no other health conditions are 30 percent more likely to be injured in accidents than members of the general population.
However, the most common cause of death among people whose seizures are uncontrolled is sudden unexpected death in epilepsy (SUDEP). In people with epilepsy, approximately one in 1,000 adults and one in 4,500 children will die from SUDEP. Because it is so rare, SUDEP is poorly studied. Researchers do not yet know what causes SUDEP, but one theory is that a seizure triggers a fatal change in heart rhythm.
Studies have found that people with epilepsy have a risk 3.5 and 5.8 times higher for death by suicide than the rest of the population. Depression is common in epilepsy, as in all chronic illnesses, and many anti-epileptic drugs (AEDs) are known to worsen depression and suicidal thoughts and behavior. Report any feelings of depression and thoughts of suicide to your doctor. A change in medication can make a big difference.
Can you drive if you have epilepsy?
It can be complicated for people with epilepsy to obtain driver’s licenses in the United States. Different states have different rules about issuing driver’s licenses to people with a history of epilepsy. In some states, doctors are bound to report diagnoses of epilepsy to the government. In order to qualify for a driver’s license, people with epilepsy generally need to provide medical proof that they have been seizure-free for a certain period of time, usually three months or six months. They may also be required to provide periodic medical updates proving their seizure-free status.
Can you qualify for U.S. government disability benefits if you have epilepsy?
Under certain conditions, people with mental or physical impairments caused by epilepsy or epilepsy medication that make it impossible for them to work may qualify for social security benefits. Whether you qualify for disability benefits depends on several factors, including the type of seizure(s) you have, the type of work you do, your age, and your work history. Other factors may include whether you are eligible for a driver’s license and whether side effects from anti-epileptic drugs make it difficult for you to drive or work.
Can you live alone if you have epilepsy?
Most people with epilepsy can safely live alone. Some people install monitors and alarm systems that can detect seizures and call for help if one occurs.
How is epilepsy diagnosed?
To diagnose epilepsy, a doctor will take a detailed history of the symptoms, behavior, and seizure duration provided by their patient or their caregiver. The diagnosis process may involve brainwave monitoring with EEG, imaging scans, and blood tests. Learn more about how epilepsy is diagnosed.
How is epilepsy treated?
There are a wide range of epilepsy treatments, with most falling into one of three categories: medication, diet, or surgery. Before prescribing a course of treatment, a physician will take into account your age, overall health, medical history, severity of condition, and type(s) of seizure. Read more about epilepsy treatments.
Kelly leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.
Epilepsy is a spectrum of brain disorders which cause the development of abnormal activity of convulsions. Herzliya Medical Center Private Hospital conducts progressive minimally invasive techniques for the treatment of epilepsy.
What Is Epilepsy
Epilepsy is a disease of the central nervous system, characterized by a violation of the physiological activity of the brain cells. The main manifestation of epilepsy are seizures; the severity, frequency and nature of the disease can vary significantly.
Focal seizures are caused by abnormal activity at one part of the brain. The seizures appear in the form of sensory disorders, a brief loss of consciousness or involuntary contractions of the muscles of the upper or lower limbs. The seizures develop in response to pathological activity of the brain and may be accompanied by falling, twitching muscles and involuntary urination. Brain surgery for epilepsy is done to people to reduce or to stop the number of seizures they have. Surgery for epilepsy involves removing the part of the brain which causes the seizures or separating the part of the brain which causes seizures from the rest of the brain.
Epilepsy Diagnosis
A single convulsive seizure is not regarded as a sign of epilepsy. An indication for an in-depth diagnosis is a history of two or more seizures not caused by any objective reasons.
Diagnostic Measures:
Neurological examination
Electroencephalography (EEG). EEG is a graphical recording of the electrical activity of different brain regions. EEG can be performed in the waking state, during sleep, alone or under the influence of a trigger – factor, artificially stimulating seizure activity.
Computed tomography of the brain (CT). Before planning brain surgery in Israel, neurosurgeons recommend carrying out a CT test; it lets the neurosurgeon visualize the structure of the brain, as well as to diagnose tumors, hemorrhage, cystic formation, against which the patient may develop seizures.
Magnetic resonance imaging (MRI), both standard and functional. Epilepsy surgery usually requires a functional MRI to determine the areas of the brain that regulate the processes of speech, motor skills and other critical functions.
Positron emission tomography (PET)
Single photon emission computed tomography (SPECT). Experts in the field of neurosurgery in Israel recommend having a SPECT scan as well.
Epilepsy Surgery and Treatment in Israel
Treatment of epilepsy usually begins with medication. For most patients, the chronic long-term administration of antiepileptic drugs (AEDs) can reliably control the disease and prevent attacks or significantly reduce their frequency. With the ineffectiveness of drug therapy, a possible epilepsy surgery is considered. The indications for surgery are seizures that occur despite medication. Brain surgery in Israel for the treatment of epilepsy is carried out in cases when the source is located outside the areas of the brain responsible for vital functions: speech, motor skills, vision or hearing.
Surgery may be performed to isolate a certain part of the brain. Neurosurgery in Israel widely uses intraoperative MRI capabilities; during surgery, MRI is used for monitoring to ensure that the impact is applied on the selected area of the brain.
Herzliya Medical Center practices innovative methods of surgical treatment for epilepsy, which is a kind of stereotactic surgery. For the destruction of the convulsive center in the brain a laser beam is used, which causes the heating of tissues and their destruction. The laser beam serves as a thin catheter and is conducted into the cavity of the skull. Minimally invasive laser techniques do not require prolonged hospitalization, the patient can return to normal life within a couple of days.
Researchers recently published an article in TheLancet Neurology discussing the difficulties facing seizure detection in patients with epilepsy.
Epilepsy is a neurological disorder that is characterised by short repetitive epileptic seizures. These seizures can be harmful to the individual depending on the circumstances in which they occur, such as a seizure while driving. This disorder is set apart from other neurological disorders since there is a broad range of different physiological changes that can cause it, leading to a large variation in symptoms and making it difficult to treat. While 70% of sufferers can be treated with pharmacological agents, 30% have no reliable anti-epileptic drugs that are effective for their particular type of epilepsy.
In a recent study, Christian Elger and Christian Hoppe determined that a key challenge facing patients is that over 50% of patients under-report the number of seizures they experience, which has a serious impact on how well doctors are able to determine what treatments are most suitable for them. This also calls into question many of the previously published research on epilepsy treatments. They recently published this report in The Lancet Neurology.
Why are Epileptic Seizures Difficult to Detect?
In this personal view, the writers determined that the cause of under-reporting is primarily due to patients, or their caregivers, being unable to identify when seizures are occurring. Seizures can impair consciousness, may occur at night, or the physical symptoms may be so subtle that they are not easily noticed unless professionally trained to do so.
Technologies for Epilepsy DetectionThe gold standard for epilepsy detection is video-electroencephalography (VEEG), where patients have their brain activity monitored for epilepsy-specific activity and trained technicians can test for impairments to consciousness, cognition, language, and memory. Video footage from the VEEG can also be viewed at a later time to spot slight body movements indicative of a seizure. The limitation of this method is that it requires a hospital visit, increasing associated costs, and is only suitable for identifying how frequent a person has a seizure over a given time, it does not address the issue of a person (or their caregiver) being aware they are having a seizure in real time.
Automated System Required
It is clear that the future of seizure detection requires an automated system, preferably one that patients can wear over the long-term and that will notify them or a nearby center when a seizure occurs. The main barriers to this technology is that a number of the current ambulatory systems for monitoring brain activity can be limited in monitoring time (72 hours) or require labor-intensive analysis of data, although as algorithms for analyzing brain activity improve this limitation will also decrease.
An analysis of movement via home-based video systems, or of various physical data outputs (i.e. accelerometry, magnetometry, gyroscopy, or pressure data) derived from worn sensors have some promise but so far the results have not been consistent.
Surface Electromyography
It appears that one of the most promising methods, which is also viewed favorably by patients, is surface electromyography (SEMG). This method involves self-adhesive sensors that are attached to muscles in areas of the body affected by seizures. Furthermore, multi-modal approaches that combine SEMG, EEG, and electrocardiography have a detection rate over 85% for the majority of seizure types.
Improved Seizure Detection Necessary
It is clear that improved seizure detection is necessary for ensuring that doctors provide the most appropriate treatment to individual patients, as well as ensuring that patients are protected from life-threatening seizures. Improving wearable, ambulatory technologies and advancements in algorithms for the analysis of seizure data will help provide comprehensive support to both physicians and to the patients that they monitor.
Written by Michael Healy, BSc, MSc
Reference: Elger C.E., Hoppe C. Diagnostic challenges in epilepsy: seizure under-reporting and seizure detection. Lancet Neurol 2018; 17: 279–88.
In assessing the effectiveness of prescribed medication there is a strong emphasis on the ability of the patient to adhere to the regime recommended by the clinician. For individuals with epilepsy, adherence to medication is crucial in preventing or minimizing seizures and their cumulative impact on everyday life. Non-adherence to antiepileptic drugs (AEDs) can result in breakthrough seizures many months or years after a previous episode and can have serious repercussions on an individual’s perceived quality of life. Reasons for non-adherence are complex and multilayered. Patients can accidentally fail to adhere through forgetfulness, misunderstanding, or uncertainty about clinician’s recommendations, or intentionally due to their own expectations of treatment, side-effects, and lifestyle choice.
Adherence in epilepsy
Adherence is acting in accordance with advice, recommendations or instruction. Ways that adherence can be optimized;
Educating individuals and their families and carers in understanding of their condition and the rationale of treatment, reducing the stigma associated with the conditions.
Using simple medication regimes.
Positive relationships between healthcare professionals, the individual with epilepsy and their family and /or carers.
Other measures are; manual telephones follow up, home visits, special reminders, regular appointments/ refill reminders.
While failing to adhere to treatment plans can adversely affect individuals with any general medical condition, Non- adherence to anti-epileptic drugs results to increased risk of status epilepticus (prolonged seizures) resulting into brain damage, SUDEP, risk of injuries, increase rates of admission to hospital due prolonged seizures. The consequences of not taking medication can be more immediate with epilepsy.
Epilepsy as a chronic condition relies heavily on adherence to medical advice in order to maximize an individual’s quality of life by controlling seizures more effectively while avoiding unwanted side-effects. Treatment of those diagnosed with epilepsy the vast majorities are treated with AEDs and approximately 70% can become seizure-free once the most effective regime is followed.
Monotherapy is viewed as the initial and preferential option for treating epilepsy, the choice of drug depending on seizure type and effectiveness of the drug balanced against possible side-effects. It is difficult to find estimates of how many people are on monotherapy or polytherapy at any one point in time.
However, in one of the cases I encountered that of Sarafina Muthoni from Banana, Kiambu County, she was diagnosed with Epilepsy at a very young age in her primary school days. With no history of such a condition in her family, it got everybody thinking what could have gone wrong with their lovely daughter. After days of trying to figure out, the family had to adapt to reality of their daughter living with Epilepsy. She was lucky to have very supportive parents ready to see her through the long journey of treating the condition. The motivation and support from her loved ones to access medication improved her status by far as she continued to adhere to the prescribed treatment. Unfortunately, the support didn’t last long and the burden of continuing with treatment squarely relied on her. This adversely contributed to the beginning of non-adherence to medication for lack of funds to buy drugs. Not only were finances a challenge but also finding a good hospital to comply was a problem.
Muthoni had to live with the sad reality of pain every time she experienced a seizure. Pain which she clearly knew with access to medication the situation could by far be controlled. At the very worse of her situation she found help. Cheshire Disability Services Kenya (CDSK) a Non-Governmental Organization in Kenya whose objective is to empower an inclusive society of persons with disability and develop their full potential to lead a quality life, in partnership with Kenya Association of People with Epilepsy (KAWE) came for Muthonis’ rescue.
Under CDSK’s program to help Epilepsy patients’ access medication and ensure compliance, Muthoni benefited and today she leads a life full of potential and energy as she explores her skills as a beauty and hair stylist.
As we celebrate International Epilepsy Day on Feb 12th 2018, themed on “Life is beautiful”, Muthoni’s story is a highlight of what beauty is all about. Hers’ is just but one of the many inspiring stories to celebrate during this season of Epilepsy Awareness.
Managing Adherence
Adherence to medication regardless of medical condition remains an important problem in treatment. Factors that have been discussed here – side-effects, drug regime, family support, impact on everyday life, relationship with the clinician – are unlikely to be the only predictors of adherence. While adherence to treatment within the context of epilepsy has been the focus of this review, these factors can equally be applied to various chronic conditions.
Assessment of adherence should be a routine part of management of epilepsy. Further recognition and support should be given to patients who have poor seizure control since they are more likely to be more anxious and have unhelpful illness and treatment beliefs.
Finally, patients may be fully aware of the importance of taking AED medication and the benefits gained by altering their lifestyle choices in order to prevent seizures, but will make a decision about the degree to which they follow advice. Patients only have a small amount of time in contact with the clinician in their “patient role”, after which they return to the practicalities of their everyday routine where their adherence fluctuates based on how they feel their medication affects their quality of life.
Strategies to manage adherence originate from different perspectives. While the medical model may advocate less complex drug regimes, the use of measured pill containers, and minimization of side-effects, the psychosocial model analyzes non-adherence in terms of patient attitudes to medication, stigma, family and peer influences, and ability to manage self care. Neither model can adequately improve adherence independently. Perhaps the best approach is to offer a “menu” of adherence-enhancing strategies. However, what is increasingly clear from both models is that total adherence is an unrealistic goal. The emphasis has shifted away from total adherence towards a compromise with both patient and clinician involved in a joint process of treatment negotiation and decision-making in order to achieve the best outcome for the individual.
TBI Rehabilitation 