Simply put, epilepsy is a neurological condition characterized by abnormal brain activity.
Abnormal brain activity commonly results in seizures, episodes of strange behavior and sensations, as well as the occasional loss of consciousness. This can affect a wide variety of mental and physical functions, but for many epileptics, epilepsy is about more than just experiencing seizures.
Since epilepsy can affect anyone regardless of gender, age or race, that also means it can affect all parts of life. Let’s dive a little deeper into other co-occurring issues someone with epilepsy may face.
Problems That Epilepsy Can Cause
Although many might associate epilepsy with seizures alone, the truth is epilepsy can affect a person’s physical safety, mental wellbeing, individuality and even their social life. Although patients with epilepsy are encouraged to live a normal life as much as possible, they can sometimes pose a risk for themselves and others, especially in a periictal phase (a period of active epilepsy).
Being Prone To Injury
Injury is a common problem in patients with epilepsy. Experiencing seizures at an inopportune time can lead to dangerous situations for epileptics as well as those around them. For example:
- Car Accidents: When operating machinery or driving a car, a seizure that results in loss of awareness or control could be fatal for the driver, passengers, and anyone else on the road.
- Drowning: Those with epilepsy are roughly 15x more likely to drown while swimming and bathing than those without due to the possibility of seizure in the water.
- Falling: A seizure that occurs at a height could lead to broken bones, a head injury, even death.
- Burns: Cooking, tending to a fire, lighting or being in the vicinity of lit candles, are all actions that can pose a higher burn risk for those with epilepsy or seizures.
According to a 2013 NIH study, soft tissue injuries, fractures, dental injuries, head trauma, traffic accidents, burns and drownings are the most frequently reported seizure-related injuries.
With that said, it is imperative that patients and family members educate themselves on prevention measures in order to keep themselves and those around them safe.
Sleep is necessary for safety, quality of life, and both physical and mental health. Although most people are well-aware of the value that sleep offers and its significance for overall health and wellbeing, many don’t make it a priority.
Since sleep and epilepsy are inextricably linked, sleep deprivation is a common trigger of seizures. The frequency, timing, and duration of seizures can all be influenced by sleep, and in turn epilepsy can impair your ability to sleep and exacerbate existing sleep disorders. Individuals suffering from benign rolandic epilepsy and autosomal dominant nocturnal frontal lobe epilepsy have seizures while sleeping. Others, such as epilepsy with generalized tonic clonic seizures, occur within the first 1-2 hours of waking up. Epilepsy medication can also interfere with sleep, they may cause drowsiness and make it difficult to fall or even stay asleep.
Generally speaking, long-term sleep deprivation can lead to myriad health concerns on its own. This means that on top of seizures, epileptics are also subject to:
- heart attacks
- high blood pressure
- mood disorders
- obesity and weight gain
If you’re someone with epilepsy and are struggling with sleep deprivation or sleep-related issues, it’s important to reach out to your doctor to see what options may be available to you.
Side Effects From Medications
While epilepsy medications can help a person gain control over their seizures, they may also cause their own set of unwanted feelings and physical symptoms. As previously mentioned, some epilepsy medications may interfere with sleep. Some cause drowsiness, while others make it difficult to maintain a solid sleep schedule. In addition to sleep-related issues, epilepsy medications can cause:
- feelings of nervousness
- hair loss
- hypersensitivity to light and noise
- swollen gums
- weight gain
If you have epilepsy and are struggling with side effects from your medication, be sure to discuss options with your doctor and develop a new plan of action together. Your doctor may even be able to reduce your dosage, or prescribe a new medication altogether.
Brain Damage Caused by Seizures
Fortunately, the majority of seizures do not cause permanent brain damage. That said, a prolonged, uncontrolled seizure can be dangerous. Because of this, it’s important to treat any seizure that lasts longer than five minutes as an emergency and seek medical attention.
Research indicates that juvenile and adult brains are more vulnerable to damage and rewiring following convulsions than newborn brains, which implies that seizure-induced brain injury is highly reliant upon developmental age.
Prolonged seizures may alter the brain’s structure and cognitive functions. The location of the brain where seizures begin may indicate which function(s) may be affected. Seizures that begin in multiple locations or become generalized can affect a wide range of processes. For example, if seizures occur in the area responsible for language, the person may be unable to name an object when they see it. Even if they know what an object’s name is, the part of their brain that knows cannot tell the rest of their brain.
Developing Status Epilepticus and Seizure Clusters
Status epilepticus occurs when a patient experiences frequent and repeating seizures without regaining consciousness in between each seizure, or if they are in a continuous state of seizure activity for longer than five minutes. People suffering from status epilepticus are at a higher risk of permanent brain damage and death. Seizure clusters, on the other hand, are seizures of any type that occur in groups or clusters over a number of hours or days. A person usually recovers between seizures and the clusters end on their own. Seizure clusters may not be an emergency in and of themselves, but a cluster of seizures that becomes longer or more frequent may develop into one.
When a seizure lasts for a long period of time or when seizures occur close together and the person does not recover between seizures, it is considered an emergency. Epileptics who have experienced the following are more likely to experience a seizure emergency in the future:
- have been diagnosed with status epilepticus in the past
- have repeat seizures
- have poorly controlled seizures
- have difficulty remembering their medications
- have started or stopped medicines without medical advice
- had a generalized seizure lasting five minutes or longer
- live alone
It’s important for all epileptics to make sure they have a plan for preventing seizure emergencies and managing their medications. A customized seizure response plan can be developed with the help of a doctor or epileptologist.
H3: Limitations on Social Life and Independence
Living happily and healthily is a realistic goal for many epileptics. However, life with epilepsy is not without its challenges. Depending on the severity and frequency of someone’s seizures, their social lives and independence can be greatly impacted.
For epileptics with uncontrolled seizures, some restrictions can include:
- limitations around transportation which impacts where a person can live and work
- inability to sleep in a room alone due to nocturnal epilepsy and seizures
- limitations around diets; fitness and nutrition can play a large role in managing epilepsy
- limitations around family planning (see pregnancy complications below)
- limitations around employment as seizures may prevent a person from performing certain actions
- limitations around privacy
In addition to external limitations, there are also internal limitations that epilepsy can bring on. People who have epilepsy frequently report memory and thinking difficulties. The ability to perform well at home, at work, and in school may be impacted by these issues, which can in turn affect your mental wellbeing. Since seizures can affect so much of a person’s day-to-day life, some may worry about what their community, family life, and future will look like. It can be difficult to navigate this all while trying to teach your friends, family, and co-workers what epilepsy is, and what they can expect.
Additionally, receiving an epilepsy diagnosis can be distressing and leave a person feeling alone and isolated. This can lead some epileptics to become anxious, depressed and even develop mood disorders.
Mental Health Conditions
Although major depression and dysthymia (a persistent depressive disorder) are the two mood disorders that epilepsy patients experience the most frequently, psychological conditions such as ADHD, anxiety, anergia, depression, mood disorders, OCD, paroxysmal irritability, psychosis, and suicidal thoughts are all more prevalent in people with epilepsy.
Whether it’s caused by the disorder itself, or it’s a side effect of medication, even those who have well-controlled epilepsy are more vulnerable to psychological complications. This is true even before an epileptic’s first seizure, which shows that a person’s increased susceptibility to depression and other mental health conditions may be caused by the same abnormalities in the brain that make them susceptible to seizures.
If you’re experiencing bouts of depression, anxiety, or any other mental health condition, it’s important to reach out to a doctor for assistance. A physician can help reassess your epilepsy management plan, and may even be able to provide additional treatment options.
Patients with epilepsy have a number of unique concerns during pregnancy. While many will be able to become pregnant and carry healthy children, seizures during pregnancy can endanger both the parent and the child. Seizures during pregnancy can cause decreased oxygen to the fetus, fetal injury, miscarriage due to trauma, slowing of the fetal heart rate, preterm labor and preterm birth. In addition, certain anti-epileptic medications increase the risk of birth defects and even make it more difficult to conceive.
If you have epilepsy and want to get pregnant, it’s important to discuss options with a doctor beforehand. Throughout your pregnancy, you’ll need to be closely monitored, and your medications may need to be adjusted. Keeping seizures in control during pregnancy will be critical.
The CDC (Center for Disease Control and Prevention) reports that 1 in every 1,000 people with epilepsy pass away from SUDEP each year. SUDEP refers to the sudden, unexpected death of someone who suffered from epilepsy but was otherwise healthy. Although the exact cause of SUDEP is unknown, recent research suggests that problems with breathing, heart rhythm, and brain function may result in SUDEP-related deaths.
SUDEP is the leading cause of death for those with uncontrolled and frequent tonic-clonic seizures. It is most common in people who have severe epilepsy that isn’t responding to treatment. Although SUDEP can not be prevented in all cases, there are things that can be done to reduce the risk; for example, taking medication regularly and at the correct dosage, avoiding known seizure triggers, getting the proper amount of sleep, utilizing some form of nocturnal supervision, and ensuring that those around you are trained in seizure first aid.
Help End Epilepsy with The Cameron Boyce Foundation
Sharing accurate information and supporting organizations dedicated to ending epilepsy and SUDEP is one of the most effective steps we can take to help cure this life-altering condition. For more information, consider my most recent affiliation: The Cameron Boyce Foundation, which aims to cure epilepsy via research, education, and awareness campaigns in honor of the late Cameron Boyce’s legacy.
Support the Cameron Boyce Foundation directly by visiting: https://kindest.com/cameron-boyce-foundation