FREQUENTLY ASKED QUESTIONS
Being a teenager is challenging enough, but having epilepsy adds a whole other level of uncertainty. Through my own experience as well as with the help of Mayo Clinic and The Epilepsy Foundation, I aim to offer answers to questions that those with and those close to others with epilepsy may have. **DISCLAIMER**: This is in no way professional advice, but simply based off of personal experience and other websites' FAQ pages.
GENERAL QUESTIONS
Q: What is epilepsy?
According to Mayo Clinic, "Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness." Kind of confusing, right? Because epilepsy can be caused by many different things (see question 3), it can be difficult to form a description of epilepsy that is easy to understand. It's important to note that not everyone experiences epilepsy the same way. Seizures are erratic and may occur more often for some people than others depending on the severity of ones epilepsy. Although seizures can include many different parts of the body, it all starts in the brain. Taking the Mayo Clinic definition, it can be said that Epilepsy is a neurological (dis)order, usually characterized by seizures of different size and proportion depending on the cause of epilepsy. It is often noted that people have to have two or more seizures to be diagnosed as epileptic.
Q: What is a seizure?
Seizures are generally characterized by convulsions, shaking, and sometimes loss of consciousness. The irregular quickness in synapse firing, or more generally, the irregular quickness at which information gets transferred and processed in the brain, is what causes a seizure. It is important to know that there are many different kinds of seizures, not just one. The location, size, and impact it has on the rest of the brain of the irregular synapse firing determines what kind of seizure one has. The kinds of seizures are classified into two distinct categories, focal and generalized, based off of the areas of brain which are affected.
Focal seizures occur when just one area of the brain is involved. There are two different kinds of focal seizures: focal seizures without loss of consciousness and focal seizures with impaired awareness
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Focal seizures without loss of consciousness: These seizures do not make one lose consciousness. They may temporarily alter a persons sense of taste, smell, sound, touch, or sight, as well as emotional state. Other characteristics of this kind of seizure include quick, jerking movements, dizziness, and a tingling sensation.
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Focal seizures with loss of consciousness: These seizures do make one lose consciousness or alter their awareness. This kind of seizure is characterized by staring into space, being non-responsive, and repetitive movements, such as chewing, swallowing, rubbing of hands, and walking in circles.
Generalized seizures occur when all areas of the brain are involved. There are six different kinds of generalized seizures: absence, tonic, atonic, clonic, myoclonic, and tonic-clonic seizures.
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Absence seizures: Previously known as petit mal seizures, children usually have absence seizures. Absence seizures include someone staring off into space, sudden and repeated body movements, and the possibility of loss of awareness.
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Tonic seizures: They are characterized by the stiffening of one's muscles, usually in the back, arms, and legs, causing them to fall down.
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Atonic seizures: These are also known as 'drop seizures', and are characterized by a loss of muscle control. If someone has an atonic seizure, they will suddenly collapse or drop to the floor.
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Clonic seizures: These are associated with repeated jerking and then relaxing movements. They affect muscles in the neck, arms, and face.
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Myoclonic seizures: These seizures are usually characterized by brief twitching in one's legs or arms.
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Tonic-clonic seizures: Previously known as grand-mal seizures, these are the most 'dramatic' and what people generally think of when they imagine someone having a seizure. Tonic-clonic seizures are characterized by a sudden loss of consciousness, as well as shaking and convulsing. People may lose control of their bladder or bite their tongue when they have this kind of seizure.
Different kinds of seizures may be difficult to tell apart from one another, as many of the characteristics from one another are very similar. It is important to fully understand what symptoms you are experiencing and report them to your doctor so they can correctly diagnose you. If you are witnessing a seizure, it is important to take note of the characteristics of the seizure so you can inform who had the seizure after the fact and once they are aware of what took place.
Q: What causes epilepsy?
Epilepsy can be caused by a number of different reasons. However, the main causes of epilepsy are sectioned into five distinct groups: genetic, structural, metabolic, immune, and infection.
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Genetic based epilepsy occurs when one has a genetic defect of some kind that is known to be associated with seizures and epilepsy. Genetic based epilepsy can come from familial inheritance. However, one can have possess a genetic difference which causes epilepsy and it not being present in either parent.
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Structural based epilepsy occurs when there is a physical difference in the brain, either since birth, or one that is caused at a later time. Structural differences from birth may also contain a genetic causation. Different head trauma, such as multiple concussions, head injuries, strokes, or tumors can be a cause of structural based differences that appear later in life.
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Metabolic based epilepsy occurs when the bodily process in which food is transferred to energy is disrupted. Similarly, if a body is not able to break down specific nutrients in food, this can cause a build up in the brain, resulting in seizures. Like specific structural based epilepsies, some metabolic based epilepsies can have roots in genetic differences.
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Immune based epilepsy occurs when a specific protein causes the brain to become inflamed, altering its excitability and leading to seizures. Many people with immune based epilepsy have an abnormal antibody, which is what changes brain excitability.
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Infection based epilepsy occurs when different infections of the brain lead to seizures.
Q: What are common seizure inducing triggers?
Seizure inducing triggers can be found in the form of things from flashing lights to an overload of stress on oneself. Although not complete I've compiled a list of common triggers are from personal experience as well as more general, widely known ones:
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Flashing Lights
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Increased amount of stress
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Lack of sleep
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Hard hits to the head
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Abuse of drugs, including but not limited to marijuana, LSD, etc
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Abuse of alcohol
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Changes in weight
Because not everyone is triggered by the same thing, it is important to keep a journal to document every time you have a seizure. Knowing your relationship to triggers during the time of your seizure can help you understand and realize what your specific triggers are.
Q: What are common misconceptions about people with epilepsy?
Many misconceptions about epilepsy stem from the fact that not too many people know exactly what it is. Because of this, misconceptions about epilepsy are often very general and imply that people with epilepsy are very limited insofar as what they can do in their everyday lives.
The misconception that I've come across and have heard people express the most is that people with epilepsy are unable to do things that 'normal people', or people without epilepsy, can do without a second thought. This is false. Although there are certain things that have aspects which may be triggering for certain people, such as photo and light sensitive events, people with epilepsy can do whatever they set their minds to. Many successful people, such as Lil Wayne and Dai Greene have had successful careers in music and athletics, respectfully, while living with epilepsy. Only certain things which are dependent on the last date of having a seizure, such as operating a car, could someone with epilepsy not do.
Another misconception about people with epilepsy is that they are disabled and cannot work. As mentioned above, people can hold positions and have successful careers in many different facets. In fact, former governor of Hawaii, Neil Abercrombie has epilepsy. He, along with many other notable people, have epilepsy and still lead lasting professional lives. Aside from epilepsy, it is important to remember that everyone has something; your coworker may be living with something you have no idea about.
One thing to keep in mind is that depending on the severity of one's epilepsy, they may be more limited as to what they can and cannot do. Aside from this, people with epilepsy are very able to do anything anyone else can do.
Lastly, seizures and epilepsy are not contagious. You cannot 'catch' a seizure or epilepsy from someone else.
FOR TEENS WITH EPILEPSY
Q: Who should know that I have epilepsy?
There's no specific list of who you should or shouldn't talk about your epilepsy with; it all depends on your comfort level. However, certain people, such as athletic coaches, mentors, friends and others who you are oftentimes around are a good place to start as far as telling others goes.
Q: How do I tell someone I have epilepsy?
Although it's challenging determining who to tell about your epilepsy, actually telling them can sometimes be even more difficult (I was once so hesitant to tell someone I had epilepsy that I had a mutual friend of ours tell them for me!). The first thing to remember when telling someone you have epilepsy is the reason you're talking to this person in the first place: you trust them, are close to them, and know they will unconditionally care about your wellbeing. It's easy to be concerned that people will judge you because you are 'different', but remember that everyone has something and people are empathetic. So please, learn from my mistake of being afraid so that when you are ready, you can tell whoever you choose that you have epilepsy.
Q: What specifically should I tell people about my epilepsy?
Again, this is all dependent on your own comfort level. From personal experience, I've learned it's important to ask what others would like to know. Remember that people may not be as knowledgable about epilepsy as you are, and it may be necessary to tell them some 'basics' about it, such as what your kind of seizure looks like, how long your seizures usually last, and what your triggers are. Upon asking my own friends and close confidants, they've told me they would like to know my past history with epilepsy (how many seizures I've had), as well as what to do when one has a seizure.
You can make a seizure action plan (SAP) with your doctor, which lists out what people should specifically do when you have a seizure. This can be helpful to give out to adults or supervisors you are often around, such as teachers, coaches, and other mentors. SAP forms are available on the Epilepsy Foundation website.
Q: What should I do to lower my chances of having a seizure?
From personal experience, there are three things I have done that have dramatically reduced my risk of having a seizure. The first is consistently taking my medication. Keeping a routine and even setting an alarm to ensure you don't forget a dose is extremely helpful. Other than taking medication, the second thing I do to lower my risk is get enough sleep. The recommended amount of sleep for someone is eight hours, but again, the right amount of sleep varies person to person. However, it's important to be conscientious how you feel after a night of sleep and how many hours you did sleep. Additionally, not only is reducing stress as much as possible beneficial for your overall health, but also lowers your risk for having a seizure. Tracking your stress levels per day and identifying when you are more stressed than normal can help with this. Finally, alcohol and substance use may increase the risk of having a seizure. Although obviously not legal for minors to consume, it's important to be realistic about what teenagers experiment with and try for the first time. Along with all of these risk management factors, alcohol may affect you in different ways, but is important to understand how it does or does not contribute to your susceptibility of having a seizure.
It's important to make a plan with not only yourself, but with your doctor for the best way to prevent a seizure. Finding the medication that is right for you, possibly going on a medically prescribed diet, as well as taking extra precautionary steps are essential to living with epilepsy.
Q: What can I/can I not do because of my epilepsy?
Just because you have epilepsy doesn't mean you are limited in any way- it's all about being smart. As a teenager, there are a lot of new and exciting things to try and partake in. Certain things may need be done more cautiously and carefully for people with epilepsy.
Oftentimes, teenagers are introduced to and invited to try new substances, such as alcohol and marijuana. These should always be used with caution, but especially with those who have epilepsy, as they are known to be maleffective when mixed with certain anti-seizure medications.
Driving and getting one's license is a big step towards independence for teenagers. However, depending on state laws, you may have to wait from six months to one year after your last seizure before being able to drive. Once you are cleared by your doctor to drive, exercise caution, but again, you are free to get behind the wheel. (Side note on this - when I was a Junior in high school and I had a seizure, I had to stop driving. I was so embarrassed that I told people my car broke down and was taking a long time to get fixed, which was why my mom, instead of me, was now driving me everywhere. Remember to not be ashamed, people will be and are understanding.)
Extracurricular activities outside of school is a big area to traverse in general, but especially for people with epilepsy. Because maintaining low stress levels and a regular sleep schedule are essential for people with epilepsy. Time management is is key when juggling other activities outside of school. One thing about extracurriculars, such as sports, clubs, and community organizations- there is no limit to what someone with epilepsy can and cannot participate in. In high school, I personally played volleyball, was in a handful of different clubs, student government, all while taking advanced classes. Knowing one's limit as to what they can manage throughout the day and how much time they can commit to different activities is again, extremely individual. Teens with epilepsy can be as involved as anyone else, but health is always the number one priority. Never be afraid or fearful to take a step back and focus on yourself, but also, have the confidence knowing you can do more than just school or the bare minimum.
Whatever your route is after high school, college, trade school, or anything else, it often involves leaving home and becoming more independent. People with epilepsy can do all of this and more, but it is important to hold yourself accountable during this time in your life. Big life changes after high school are exciting, but are often stressful. It's important to recognize when you are feeling stressful and manage it to the best of your abilities. Additionally, these post-high school changes often include differences in who you see from a day to day basis, or even who you live with. Remember to tell those you are comfortable with and are often around of your epilepsy and what they can do to accommodate you in any way. Finally, after high school, new opportunities may present themselves in abundance, such as parties and other events. These events are great and tons of fun, but remember to prioritize your health, including your sleep, which often gets thrown to the side when freedom increases.
FOR LOVED ONES
Q: What do I do when someone has a seizure?
When someone has a seizure, there are several different 'dos' and 'do nots' to follow. However, the main thing to remember when someone has a seizure is to remain calm.
Several 'dos' when someone has a seizure includes 1) turning them onto their side 2) removing anything around them that may hurt them or cause injury 3) keeping time of how long the seizure lasts (if it is longer than 5 minutes, call 911) 4) staying with them through the duration of the seizure. Several 'don'ts' include 1) restraining them on the ground, 2) placing something in their mouth 3) giving them food or water. The bottom of this page provides a video with basic seizure first aid for both tonic clonic and focal seizures. The Epilepsy Foundation offers seizure first aid courses (now via Zoom), which goes more in depth of what to do and not do during different kinds of seizures.
Q: How do I act around someone with epilepsy?
The answer to this is simple: act as you would around anyone else.
