Teens & Epilepsy
Hey! Why Me?
Just found out about your epilepsy? Anyone can have epilepsy, regardless of age, race, sex or social conditions. Epilepsy may be part of your life, but it doesn't define who you are. There’s more - much more - to you than your epilepsy!
Lots of famous people - athletes, authors, artists, politicians, professionals - have epilepsy. Are you going to let epilepsy stop you from doing what you want?
It’s a Shock!
Admit it! Finding out about your epilepsy was a real shock. What can you do about it? Take charge of your life by learning as much as you can about epilepsy. Broadcast the news! Once you explain what epilepsy is, people are often more understanding and supportive. They’ll treat you - like everyone else!
What is EPILEPSY?
Epilepsy isn’t contagious. In epilepsy, the brain's electrical circuitry doesn't work properly. Normally, the brain sends electrical signals throughout the body to control movement. In epilepsy, the brain sometimes creates an electrical storm - called a seizure - that scrambles these signals. While it lasts, a seizure affects how your brain works. That's why you can suddenly experience uncontrolled body movements, unusual sensations, or changes in behaviour or awareness. During a seizure, you may stare into space or be unable to speak or experience strange smells, sounds or sights - without losing consciousness.
What Causes Seizures?
When it comes to epilepsy, this question doesn’t always have an answer. In most cases, no one knows what causes epilepsy. So, seizures are lumped into two groups: those with causes we don’t know (idiopathic or primary seizures) and those with causes we do know (symptomatic or secondary seizures).
Idiopathic (primary) seizures are more common in children and teens.
- No one knows what causes these seizures
- Some people may inherit a genetic tendency to develop epilepsy
- Environmental factors may trigger seizures in someone with a genetic susceptibility for epilepsy.
Symptomatic (secondary) seizures are more common in adults. They usually occur after a head injury or medical illness, such as:
- Brain tumour or stroke
- Head injury - the more severe the injury, the greater the chance of developing epilepsy
- Brain injury to the infant during delivery
- Infection or systemic illness in a pregnant woman, affecting the fetal brain
- Aftermath of infection (meningitis, viral encephalitis)
- Poisoning due to substance abuse (alcohol or street drugs) or other toxic substances
- Low calcium or abnormal metabolism
- Other metabolic cause.
What Triggers Seizures?
The most frequent cause of a seizure is forgetting to take your medication. The sudden withdrawal of anticonvulsant medications can trigger non-stop seizures. These are life threatening and are often difficult to control. (Status Epilepticus). Do not ever suddenly stop taking your medication. Medication should be gradually withdrawn or altered only under medical supervision.
Excessive stress may cause seizures, especially if combined with lack of food or sleep. You may want to try reduce your level of stress by learning simple relaxation techniques. There are several books about how to relax and avoid stress that you can find at your local library or visit our website www.epilepsy.org.nz
Lack of Sleep
Becoming overtired, fatigue and lack of food may cause seizures. A well balanced diet with regular meals that incorporate a good supply of vitamins and minerals is important to maintaining a healthy body and brain.
Some people find that reducing or eliminating caffeine from their diet results in much better seizure control.
Excessive alcohol intake may induce seizures. This is often associated with failure to take medications, sleep deprivation and with irregular and inadequate meals.
Drug abuse, poisons and toxic substances may also induce seizures.
Such as fear, frustration, anger, anxiety and excitement sometimes precipitate seizures, especially in older children and teenagers.
Some people are especially sensitive to flickering light or sudden changes in light. Watching television and/or using computers may bring on seizures in a few people. Sitting well away from the TV and not too close to the computer screen in a well lit room can be helpful. Adjusting the contrast setting in the computer and TV to a low setting is also useful. Flashing strobe lights may also have a seizure - producing effect on some people.
A variety of sensory stimuli can precipitate seizures, although these are quite rare. They include such things as certain types of music, noise, reading, math’s and chess, etc. Extreme heat or cold, or sudden changes in temperature may also trigger seizures.
Fevers and Infections
These can often bring on a seizure, particularly in children.
This is a type of epilepsy affecting women. Seizures only occur, or are more likely to occur, when the women’s hormone levels rise and fall. The greatest tendency to have a seizure is during the few days prior to the onset of menstruation. For more information refer to the ENZ pamphlet Epilepsy and Women.
Types of Seizures
Some people may get a warning (aura) beforehand, during most seizures, you’re totally unaware of what's going on. Afterwards, there’s no memory of what happened. That’s why reading about what happens during different types of seizures can be scary. With simple partial seizures, you are totally aware of what’s happening and do remember your seizures after.
Seizures aren’t painful, though some people who have simple partial motor seizures may experience muscle or abdominal pain, and they rarely cause brain damage. Knowing about seizures can help you to explain what happens to your friends and family. They can help you to monitor your seizures - instead of being afraid that you’ll get hurt. This information helps your doctor to know the facts about your epilepsy and to prescribe the most appropriate treatment for you.
Partial seizures start in one specific part or focal point of the brain.
Simple Partial Seizures
You may experience unusual sensations or movements while fully conscious, such as:
- Uncontrolled stiffening or jerking of the arms and legs
- An odd taste, smell or pins and needles
- Feeling like you want to throw up
- Intense emotions - like fear, sadness or anger
- A "rising" feeling in your tummy.
Complex Partial Seizures
You are not fully conscious or lose consciousness during these seizures. They usually last from 30 seconds to 3 minutes. Afterwards, you feel confused for a few minutes, have a headache or feel drowsy. You may experience:
- A dreamlike state - be unaware and unresponsive to questioning
- Unusual, repetitive movements - like picking at your clothes.
Generalised seizures involve the entire brain. A secondarily generalised seizure begins in one part, then spreads throughout the brain.
Tonic-clonic (Grand mal)
You may cry out, fall down, become rigid, and lose consciousness. Your arms and legs may jerk, and breathing may become shallow. You may lose bladder or bowel control, drool or bite your tongue. This seizure lasts anywhere from 30 seconds to a few minutes. Afterwards, you may feel confused or drowsy, need to sleep or have a headache.
This brief seizure resembles daydreaming. It happens so fast that it often goes unnoticed. You look like you’re not paying attention. If this happens at school, you’ll miss information or instructions.
A sudden startle movement may cause you to drop objects.
This seizure usually lasts less than one minute. You may lose consciousness. Your muscles stiffen, but there’s no jerking of arms or legs. If you’re standing, you may fall to the ground.
A sudden drop. Loss of muscle control makes you fall hard to the ground. This seizure lasts a very short time.
Tell Your Doctor IF YOU THINK YOU HAVE EPILEPSY!
Bring this information to your doctor’s appointment:
- A detailed description of your seizures
- How and when did they start? How long do they last? How often do they happen? How severe are they? What triggers them?
- What do you experience before and during the seizure? Do you have a warning (aura) before a seizure?
- Your past medical history
- Any problems at birth, serious infections or head injuries
- Family history of epilepsy or any medical disorders, including seizures
- Any history of drug use
- Your sleep pattern
- Do you have any trouble sleeping?
Some medical conditions are often mistaken for epilepsy. Ask your doctor, if you're concerned about any of these conditions:
- Lack of sleep
- Sleepwalking or night terrors
- Pseudoseizures (nonepileptic seizures)
- Panic attacks (caused by anxiety)
- Hyperventilation (rapid breathing due to stress)
- Angry outbursts
- Involuntary movements such as tics
- Other movement disorders
- Hypoglycemia (low blood sugar).
What you Need to Know About Medical Tests
Computerized Axial Tomography (CAT or CT scan)
- Uses low-dose x-rays
- Reproduces a 3-D computer image of the brain
- Shows what the brain looks like but not how it works
- Tracks an injection of dye to show more detail.
Positron Emission Tomography (PET)
Single-Photon Emission Computed Tomography (SPECT)
- Shows how the brain works
- Used when brain surgery is considered to treat your seizures
- Tracks an injection of radioactive material by computer scanning
- Shows how quickly the brain metabolizes certain substances.
Magnetic Resonance Imaging (MRI)
- Detects very small brain abnormalities, eg tumours or scar tissue
- Shows more detail than CT scans
- Is not an x-ray
- Uses a powerful magnet and computer to form a distinct image of brain tissue
- Helps to locate where seizures originate
- Is safe and has no side effects
- Shows a detailed picture of brain structures but not how they work
- Tracks an injection of dye to show more detail.
- Measures and records electrical brain activity on a graph
- Takes one or two hours
- Shows abnormal brain activity, such as abnormal changes in brain-wave voltages
- Produces normal results in about 20% of people with epilepsy, because their seizures arise from deep in the brain.
- Records brain's electrical activity on EEG
- Records what you experience during a seizure on video.
How Do You Treat Epilepsy?
There are 4 Ways to Treat Epilepsy:
- Antiepileptic (anticonvulsant) drug therapy
- Vagus nerve stimulation
- Ketogenic diet
Medication for Epilepsy
- What type of seizures do you have?
- How often do you have seizures?
- What drugs are best for someone of your age and weight?
- What other medication are you taking?
- What other medical condition do you have?
After selecting a medication to treat your seizures, your doctor will figure out how much of it you’ll need- the right dosage to control seizures. Usually, the dosage is gradually adjusted until your seizures are controlled without side effects.
Help your Doctor to Find the Medication That’s Right For You
Everybody reacts differently to medication. If you have side effects, your doctor may change your medication to get it right for you.
- Pay attention to how your body reacts to medication
- Take notes of any changes, even if they’re not related to your medication
- Be honest with your doctor - with team work, you can find what’s right for you!
Take Your Medication!
It’s the best way to live with epilepsy. When your seizures are controlled, you can hang with your friends, drive, do sports - and more. Keep your seizures under control, so you can enjoy life!
Most common side effects:
- Weight gain or loss
- Learning and/or attention deficit disorders
- Sleep disturbances
- Poor coordination
- Allergic reactions (eg rash).
Make the most of your medication:
- Use self-discipline. Control your epilepsy - don’t allow it to control you
- Stick to a schedule - use a pill box to remind you
- Never stop taking your medicine suddenly. It’s dangerous. Talk to your doctor first
- Be patient! You’ll probably have to try different drugs before finding the right one
- If you take any other medications or supplements, ask your doctor or pharmacist about drug interactions
- Ask about side effects
- Always refill your prescription on time.
What’s the KETOGENIC DIET?
When seizures don’t respond to drug therapy, a doctor may recommend this high-fat, low-carbohydrate diet. It is not often recommended for teenagers. It causes metabolic changes in your body. NEVER start it on your own - without supervision. This very strict diet may be harmful, if not followed properly. Your doctor will refer you to a specialist.
How it works:
- Blood sugar levels will be closely monitored
- A certified nutritionist carefully calculates food intake
- At first, blood sugar level are checked every 4 to 6 hours
- You must take sugar-free vitamins and calcium
- You must weigh and record all food
- You must drink lots of water or caffeine-free soda.
- Kidney stones
- Poor immune response
- Low blood sugar.
DARE to Talk About Epilepsy
As a teen, you’re dealing with lots of issues - like dating or what your friends think about you. You may feel like you have to change who you are to fit in - just be part of a group. You don't want to stand out or be different because you have epilepsy. But epilepsy doesn’t define who you are - it's just one of many special things about you. Differences are what makes the world an interesting place.
Who? And When?
Who do you want to tell? When's the best time? The people who care most about you and whom you see more often will want to know about your epilepsy - family, friends, roommates, neighbours, and co-workers are great sources of support.
Ask these questions when you're trying to decide:
- Who loves me and wants me to live the best possible life?
- Who do I see most often?
- Who will notice changes that signal the start of my seizures or a reaction to my medication?
- Who can help me with small chores or errands that may not be safe for me to do by myself?
- Who can I rely on in an emergency to get help, check my medication record, and contact my family and doctor?
- Who can I trust with a key to my home to come and check on me?
- Who can I count on to drive me to my doctor’s office or emergency?
When it comes to dating, everyone gets nervous. The more comfortable you feel about yourself, the more comfortable others will feel with you. You're the only one who can decide when the time is right to talk about epilepsy. If you have frequent seizures, you may wish to tell your girlfriend or boyfriend about epilepsy early in your relationship. If you do, they’ll know what’s happening and how to help when you have a seizure.
Certain People - Your teachers and swimming instructors - Should ALWAYS know about your Epilepsy
By talking about epilepsy, you can help people to understand it and teach them how to help you to stay safe during a seizure.
If you have a seizure, your friends can make sure you’re safe by:
- Staying calm
- Moving things away from you
- Putting a pillow or cloth under your head
- Turning you on your side
- Loosening things around your neck
- Never putting anything in your mouth
- Not holding you
- Never leaving you alone.
What you Need to Know About Sex
You & Your Period
Catamenial epilepsy occurs when seizures increase around the time of menstruation. Keep a record of when your seizures occur during your menstrual cycle, for many months, to find out if you've got catamenial epilepsy.
HORMONES and Seizures
- Estrogen may excite brain cells, increasing the risk of seizures
- Progesterone has the opposite effect.
If you’re sexually active but not ready to start a family, ask your doctor or nurse about birth control. Some antiepileptic drugs can reduce the effectiveness of birth control pills. If that’s the case, your doctor may prescribe a stronger birth control pill or suggest a different contraceptive method, eg a diaphragm, spermicidal cream or condoms.
Pregnancy should always be planned, and you should talk to your doctor before deciding to get pregnant. If planning a family, visit your doctor as soon as you hear the news. Don't stop taking your medication without your doctor's consent. If you do, you’re taking a big risk. During pregnancy, more frequent seizures may cause serious damage to your health and the baby’s.
It is recommended that all females of childbearing age take folic acid, and a higher dose is required if you take AEDs.
Epilepsy, Drugs and Birth Defects
Most babies born to women with epilepsy are healthy. There is a small risk that epilepsy or the use of antiepileptic medication will affect the foetus. Talk to your doctor about these risks.
- Antiepileptic medication can increase the risk of serious birth defects
- Pregnant women with epilepsy have a 4-6% risk of having a child with birth defects
- The risk increases if you're taking more than one type of antiepileptic medication.
Your Sexual Health
For Women Only
If your seizures start in the temporal lobes, you're more likely to have reproductive disorders. The temporal lobes are closely linked to areas of the brain that regulate hormones. Common types of reproductive disorders are:
- Polycystic ovaries (many cysts on the ovaries)
- Early menopause
- Irregular or no ovulation.
Not interested? No sex drive? Trouble during sex? Hey, it's a common problem for men and women - not just people with epilepsy. Your medication may directly affect regions of the brain that control sexuality or reproductive hormones.
Some teens fear that sex will spark a seizure, especially if seizures are triggered by hyperventilation or physical activity. Are you afraid that your partner will find out about your epilepsy during sex and reject you? Stress can cause sexual problems.
You and School
Most teens with epilepsy finish high school and go on to college or university - if that’s what they want.
You and the Teacher
Your teachers and the school administration need to learn about first aid for seizures. Help them out! Give them pamphlets and information on epilepsy. Some associations offer information sessions for schools - to demystify epilepsy. When you start university, get a letter from your doctor that details your medical history and medications.
Do you have memory problems? That's common, particularly if you have tonic-clonic seizures or take high doses of antiepileptic meds. If remembering is a real challenge and source of frustration - there are helpful strategies that you can use.
Living on Your Own? Living in a University Residence?
- Tell your fellow residents about your epilepsy, and make sure they know about first-aid treatment
- Telling your roommates will help them be better prepared to handle a seizure
- Eat healthy and exercise
- Get enough sleep
- Avoid typical on-campus “me-too” traps like alcohol and drug abuse.
Tips for Success
- Stay ahead - don’t leave things ’til the last minute
- Take a lighter class load
- Keep a monthly schedule of deadlines to meet
- Avoid all-night cramming sessions.
Getting a Job
You can find work and be a good employee - epilepsy doesn’t have to get in the way. People with epilepsy are often more productive on the job. They take less time off than their co-workers. The BIG question is: When do you tell the boss about your epilepsy? ONLY YOU can make that choice, depending on the job and your comfort level.
Do it Now or Later?
Before you’re hired
- Peace of mind
- Discuss epilepsy
- Reduce risk of discrimination.
- Emphasis on epilepsy.
On the job
- Can prove yourself first
- Control information
- Reduce risk of discrimination
- Educate others about epilepsy.
- Boss’s distrust / fear
- Inability of co-workers to respond
- Safety concerns.
Choosing a Career
Human rights codes prevent any discrimination against people with epilepsy. Only a few professions are off-limits to people with epilepsy in most countries (for safety reasons):
- Airline pilot
- Transportation driver
- Military services
Most businesses have safety rules to protect you and your co-workers from on-the-job injuries. Check them out! Some businesses levy fines for breaking the rules.
Common safety “rules & regs”:
- Discuss epilepsy with your co-workers
- Provide information about first aid for seizures
- Avoid heights
- Check for safety features when working with heavy machinery
- Limit exposure to flashing lights and use dark glasses, if needed
- Reduce stress as much as possible
- Give your doctor's phone number and names of relatives to contact
- Wear a Medic Alert bracelet.
Can’t wait to drive? To have the freedom to go where you like, when you like? You can look forward to driving - and that independence - when:
- You are seizure-free for 12 months - on or off medication
- Your doctor says your epilepsy is stable.
Safe at Home
Worried about safety issues around the house? That’s common - especially when you're newly diagnosed with epilepsy. You can improve your safety by changing a few old habits.
If you live alone, think about getting a monitor or safety device that works like an alarm or connects to a central security system. Wear an identification bracelets or pendants. Ask your doctor or pharmacist about new services or products for independent living.
PLAY IT SAFE at Home
- Keep bathroom and bedroom doors unlocked
- Take showers rather than baths to avoid the possibility of drowning during a seizure
- Any glass doors should be made from safety glass or plastic
- Don’t walk around with boiling water
- Take your plates to the stove instead of taking the saucepan or fry pan to the table
- Microwave cooking is safer than gas or electricity
- Use cooker, fire and radiator guards
- Turn pot and pan handles inwards
- Keep away from fireplaces and radiators to avoid getting burned
- Avoid sharp-edged furniture.
Thinking about holding back? Forget it! You can participate in all kinds of sports. Take a few precautions - yes - before you start any activity. Your coach, close friends and team mates - tell them about your epilepsy, so they are prepared to help during a seizure.
Each sport has specific safety rules that must be strictly obeyed - for your security. Moderate-and high-risk sports require supervision AT ALL TIMES. You know it sucks, but ALWAYS WEAR YOUR HELMET!
- Field hockey (helmet)
- Most track and field events
- Baseball (helmet).
- Horseback riding (helmet)
- Bike riding (helmet)
- Ice-skating or hockey (helmet)
- Roller-blading (helmet).
- Mountain or rock climbing
- Bungee jumping
- Scuba diving
- Football moderate
- Boxing moderate
- Hang gliding
- Surfing / windsurfing
- White water boating / kayaking.
- ASK ABOUT VACCINATIONS - How will they affect your epilepsy and the effectiveness of your medication?
- YOU CAN TAKE IT WITH YOU! Carry your prescription, names of contacts and a doctor's letter that explains your type of seizures
- Find information about the health-care system at your travel destination - ARE YOU COVERED?
- TRAVEL INSURANCE - Shop around to find the best deal
- WEAR a medical bracelet or necklace for epilepsy
- Keep medication in its original packaging (shows your name, drug name, prescribed dose)
- WATCH OUT for a TIME CHANGE - Take your medication every 12 hours
- PLAN for rest / nap time
- Inform your travelling companion about FIRST AID for seizures
- Avoid TOO MUCH alcohol and TOO LITTLE sleep
- FIND OUT if your medication is available where you’re going.
Photosensitivity means you’re super-sensitive to natural and artificial light - it can trigger seizures. Only 3 to 5% of people with epilepsy are photosensitive - girls more often than guys. Mostly, it develops in kids and teens between 9 and 15. People usually stop reacting to light in their late 20s or early 30s. If you’re photosensitive, be careful in places with flashing lights - night clubs or night driving.
Facts About TV
- Watching TV is the most common photosensitivity trigger for seizures
- Reduce your risk by watching television in a well-lit room
- Sit at least 2.5 meters away from the TV (depending on screen size)
- Use a remote control
- Smaller screens (less than 14") reduce your exposure to light.
Did You Know?
Computer and video games:
- They are not normally a threat for people with epilepsy
- The risk of seizures depends on the material being displayed
- The higher the frequency of the display screen, the less risk.