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TABLE OF CONTENTS
History of Epilepsy Myths and Facts Famous People with EpilepsyPERSONAL ISSUES:
Coping Strategies
Memory Issues and Solutions
Epilepsy Friends
Seizure Response Dogs
Parenting Your Child with Epilepsy
Living with Epilepsy in the Teen Years
Success Stories, Plan to Succeed!
A Different Look at Epilepsy
Memory Issues and Solutions
Epilepsy Friends
Seizure Response Dogs
Parenting Your Child with Epilepsy
Living with Epilepsy in the Teen Years
Success Stories, Plan to Succeed!
A Different Look at Epilepsy
All chapters in PERSONAL ISSUES include true stories.
MEDICAL INFORMATION:
Tests
Seizure Types and Triggers
Treatment Options
Medications and Possible Side Effects
Children’s Epilepsy
Women and Epilepsy
Seizure Types and Triggers
Treatment Options
Medications and Possible Side Effects
Children’s Epilepsy
Women and Epilepsy
APPENDIX:Patient Assistance Programs
Websites and Resources
Glossary
paper back
Retail price: $19.00
Websites and Resources
Glossary
paper back
Retail price: $19.00
EXCERPTS FROM EVERY CHAPTER:
The History of Epilepsy:
Please note: The history of epilepsy provides information that may help you see your battle with epilepsy differently.
Epilepsy has always existed and has affected billions of people worldwide. It is one of the world’s oldest known health conditions affecting the human race which until recent years was grossly misunderstood. The word epilepsy comes from a Greek word meaning, “to possess, seize or hold.” Through the ages, people with epilepsy were isolated from society sometimes through imprisonment, committed into insane institutions, exorcised, and tortured only because people believed they were witches or demon possessed. Depending on what part of the world the “witches” lived, they suffered a variety of torture techniques including but not exclusive to, burned at the stake, forced to consume heated or scalding consumables such as hot coal and boiling water, crushed to death, buried alive, torn limb from limb, drowned by raising then dunking repeatedly until finally drowned.
People, who were believed to be demon possessed, were attempted to be cured by priests through magic and prayers. Most people with epilepsy were outcasts from society and punished frequently. But thankfully ancient physicians, Atreya of India and Hippocrates of Greece recognized seizures as a neurological dysfunction rather than a supernatural event therefore challenging the diagnosis of evil spirits. They recognized the cause of seizures was due to brain abnormalities not demonic powers. Unfortunately, the belief of demon possession continued throughout time. Negative attitudes continued even after proof that epilepsy was a health condition.
It’s safe to say, we are blessed to be living in modern times since epilepsy is now recognized as a medical condition. We now have the privilege to live without the fear that has gone before us in which we truly can’t comprehend. And best of all, we now have treatment that is functional not spiritual!
Epilepsy has always existed and has affected billions of people worldwide. It is one of the world’s oldest known health conditions affecting the human race which until recent years was grossly misunderstood. The word epilepsy comes from a Greek word meaning, “to possess, seize or hold.” Through the ages, people with epilepsy were isolated from society sometimes through imprisonment, committed into insane institutions, exorcised, and tortured only because people believed they were witches or demon possessed. Depending on what part of the world the “witches” lived, they suffered a variety of torture techniques including but not exclusive to, burned at the stake, forced to consume heated or scalding consumables such as hot coal and boiling water, crushed to death, buried alive, torn limb from limb, drowned by raising then dunking repeatedly until finally drowned.
People, who were believed to be demon possessed, were attempted to be cured by priests through magic and prayers. Most people with epilepsy were outcasts from society and punished frequently. But thankfully ancient physicians, Atreya of India and Hippocrates of Greece recognized seizures as a neurological dysfunction rather than a supernatural event therefore challenging the diagnosis of evil spirits. They recognized the cause of seizures was due to brain abnormalities not demonic powers. Unfortunately, the belief of demon possession continued throughout time. Negative attitudes continued even after proof that epilepsy was a health condition.
It’s safe to say, we are blessed to be living in modern times since epilepsy is now recognized as a medical condition. We now have the privilege to live without the fear that has gone before us in which we truly can’t comprehend. And best of all, we now have treatment that is functional not spiritual!
Myths and Facts:
Even with medical proof in modern times, epilepsy is still viewed in ways which misrepresent the truth behind the neurological disorder causing a stigma which glazes over truth about epilepsy. Despite the great amount of people affected by epilepsy, it is still extremely misunderstood. It can be the source of many emotional and social problems for people like you and me. These powerful negative stereotypes can affect a person profoundly. We all know what it’s like to feel the prejudice from the uneducated public concerning epilepsy. In an effort to dispel all the ridiculous common misconceptions, the following myths and facts will prepare you to defend our condition respectfully. The majority of the following myths won’t make you happy but they will give you ammunition to fight back against the idiotic comments and beliefs people still have in the 21st century
Myth: People with epilepsy are physically limited in what they can do.
Fact: In most cases, epilepsy isn’t a wall to physical achievement. However, there are some cases, where individuals are more severely affected due to the type and amount of seizures which may limit them.
Myth: Epilepsy is a psychological condition.
Fact: Epilepsy is a medical/neurological condition. Seizures are the result of an excessive and disorderly discharge of electrical energy in the brain. It is much like a thunderstorm within the skull.
Myth: Everyone with epilepsy can have their seizures controlled. Only people, who don’t take their medicine, still have seizures.
Fact: Epilepsy is a chronic medical condition and for some people can be successfully controlled. Some, however, regardless of their efforts continue to be plagued by them. Unfortunately, treatment doesn’t work for everyone.
Even with medical proof in modern times, epilepsy is still viewed in ways which misrepresent the truth behind the neurological disorder causing a stigma which glazes over truth about epilepsy. Despite the great amount of people affected by epilepsy, it is still extremely misunderstood. It can be the source of many emotional and social problems for people like you and me. These powerful negative stereotypes can affect a person profoundly. We all know what it’s like to feel the prejudice from the uneducated public concerning epilepsy. In an effort to dispel all the ridiculous common misconceptions, the following myths and facts will prepare you to defend our condition respectfully. The majority of the following myths won’t make you happy but they will give you ammunition to fight back against the idiotic comments and beliefs people still have in the 21st century
Myth: People with epilepsy are physically limited in what they can do.
Fact: In most cases, epilepsy isn’t a wall to physical achievement. However, there are some cases, where individuals are more severely affected due to the type and amount of seizures which may limit them.
Myth: Epilepsy is a psychological condition.
Fact: Epilepsy is a medical/neurological condition. Seizures are the result of an excessive and disorderly discharge of electrical energy in the brain. It is much like a thunderstorm within the skull.
Myth: Everyone with epilepsy can have their seizures controlled. Only people, who don’t take their medicine, still have seizures.
Fact: Epilepsy is a chronic medical condition and for some people can be successfully controlled. Some, however, regardless of their efforts continue to be plagued by them. Unfortunately, treatment doesn’t work for everyone.
Famous People with Epilepsy:
The problem with negativity toward epilepsy could be lessened if we would take the time to tell people about the famous people who had or have epilepsy. Share the names of the famous people in this list with your family and friends. Help them surpass their belief that people with epilepsy are so limited that they don’t have the ability to excel or make a difference in life. They will see by the following list, they couldn’t be more wrong!
excerpts from list:
**Bud Abbot, Comedian (Abbot and Costello)
The problem with negativity toward epilepsy could be lessened if we would take the time to tell people about the famous people who had or have epilepsy. Share the names of the famous people in this list with your family and friends. Help them surpass their belief that people with epilepsy are so limited that they don’t have the ability to excel or make a difference in life. They will see by the following list, they couldn’t be more wrong!
excerpts from list:
**Bud Abbot, Comedian (Abbot and Costello)
**Lewis Carroll, Author of Alice in Wonderland and Through the Looking Glass. Lewis had temporal lobe epilepsy. The experiences in which Alice encountered, such as when she is falling down a hole, growing or shrinking before her own eyes along with surrounding objects mimicked symptoms of his temporal lobe seizures!
**Alexander the Great, General and Macedonian king
**Ludwig Van Beethoven, Pianist and composer
**Michelangelo, Painter, sculpture artist
**Richard Burton, Actor
PERSONAL ISSUES:
Coping with Epilepsy:
Epilepsy can certainly change your life to the point in which you have to “adjust” accordingly. Regardless of the changes, many people live productive and satisfactory lives. It doesn’t seem quite as bad if you know what to do and how to do it. It’s much easier to live with when you accept it, along with the many unpleasant side effects that come along for the ride.
Seizure free setbacks can be one of the hardest issues to cope with. When you’re enjoying a seizure free life and everything’s going great, a setback can cause a serious “melt down.” You might feel like you fell into a dark hole. But when you have breakthrough seizures, it doesn’t mean you’re back to square one. The first thing you need to do is contact your doctor. You might just need a medication adjustment with your present medication and/or add another medication to your present regimen. With time, and a few adjustments, you may become seizure free again.
Punishment: Do you feel epilepsy is a form of punishment? Punishment is a type of disciplinary action
for a wrong doing. You have not been personally chosen to suffer for any wrong doing. You have not done anything wrong to deserve or earn epilepsy. You’re living in a world that promises hardship no matter how good or bad you are, or by your status in life.
Do you catch yourself asking the ever so popular question, “Why me?” Instead of asking why me, ask, “What for?” When you ask “Why me?” you can get distracted and only see the negative side. You can end up wallowing in self pity. But when you ask the question, “What for?” you’ll slowly get an answer because there’s a purpose for every adversity in life. Ask yourself, “What can I learn from this situation? How can I take my affliction and turn it into something good?”
You are certainly experiencing a hardship that is more than challenging. However, challenges can be an asset to improve who you are and turn you into a better stronger person. Yes, it’s far from pleasant, but if you become a better person due to it, you’ll no longer see yourself as being punished.
Self worth: Look around at your peers. Are they acting like they are fortunate to have healthy bodies? Do they complain a lot about their features? Do they appreciate every seizure free day in which they have
the luxury to enjoy? Of course they don’t think about how precious every day is without a seizure but you do! You value life in a way they can’t possibly imagine. In a very unique way, you have more than them.
You know how to appreciate life especially every seizure free day. They don’t know that spike of enjoyment unless they go buy a new car! So the bottom line is it’s up to you to make the best of your life. Enjoy those special moments that are rare and precious.
If you struggle with your self-worth, step back and, see yourself in a different light. The following is an analogy to help you see the “big picture.” See yourself as a newly released movie with great reviews.
Everyone wants to see it. They expect to love it wholeheartedly. The beginning of the movie is bright and exiting. It’s loved by the entire audience. Then the dark scary scene comes, one that’s disliked by most. But after that scene is over, the movie is exciting again and the people are enjoying it. As a matter of fact, most of them walk away saying it was the best movie they ever saw! They want to go back and see it again! They didn’t care there was an unpleasant scary scene. The movie as a whole was still enjoyed, loved, and desired.
Picture yourself as that movie. The seizure is the dark scene in which the viewers feared and disliked. But when it’s all over, you’re still loved and desired. You’re the movie that everyone runs telling their friends about how great you are! Take time to sit back and see yourself that way. The seizures you have are just the dark scenes of your life. You’re still the person who everyone wants to see. They know that even the dark scary scene is just a small portion of the entire you. It’s time you recognize that, too!
PERSONAL ISSUES:
Coping with Epilepsy:
Epilepsy can certainly change your life to the point in which you have to “adjust” accordingly. Regardless of the changes, many people live productive and satisfactory lives. It doesn’t seem quite as bad if you know what to do and how to do it. It’s much easier to live with when you accept it, along with the many unpleasant side effects that come along for the ride.
Seizure free setbacks can be one of the hardest issues to cope with. When you’re enjoying a seizure free life and everything’s going great, a setback can cause a serious “melt down.” You might feel like you fell into a dark hole. But when you have breakthrough seizures, it doesn’t mean you’re back to square one. The first thing you need to do is contact your doctor. You might just need a medication adjustment with your present medication and/or add another medication to your present regimen. With time, and a few adjustments, you may become seizure free again.
Punishment: Do you feel epilepsy is a form of punishment? Punishment is a type of disciplinary action
for a wrong doing. You have not been personally chosen to suffer for any wrong doing. You have not done anything wrong to deserve or earn epilepsy. You’re living in a world that promises hardship no matter how good or bad you are, or by your status in life.
Do you catch yourself asking the ever so popular question, “Why me?” Instead of asking why me, ask, “What for?” When you ask “Why me?” you can get distracted and only see the negative side. You can end up wallowing in self pity. But when you ask the question, “What for?” you’ll slowly get an answer because there’s a purpose for every adversity in life. Ask yourself, “What can I learn from this situation? How can I take my affliction and turn it into something good?”
You are certainly experiencing a hardship that is more than challenging. However, challenges can be an asset to improve who you are and turn you into a better stronger person. Yes, it’s far from pleasant, but if you become a better person due to it, you’ll no longer see yourself as being punished.
Self worth: Look around at your peers. Are they acting like they are fortunate to have healthy bodies? Do they complain a lot about their features? Do they appreciate every seizure free day in which they have
the luxury to enjoy? Of course they don’t think about how precious every day is without a seizure but you do! You value life in a way they can’t possibly imagine. In a very unique way, you have more than them.
You know how to appreciate life especially every seizure free day. They don’t know that spike of enjoyment unless they go buy a new car! So the bottom line is it’s up to you to make the best of your life. Enjoy those special moments that are rare and precious.
If you struggle with your self-worth, step back and, see yourself in a different light. The following is an analogy to help you see the “big picture.” See yourself as a newly released movie with great reviews.
Everyone wants to see it. They expect to love it wholeheartedly. The beginning of the movie is bright and exiting. It’s loved by the entire audience. Then the dark scary scene comes, one that’s disliked by most. But after that scene is over, the movie is exciting again and the people are enjoying it. As a matter of fact, most of them walk away saying it was the best movie they ever saw! They want to go back and see it again! They didn’t care there was an unpleasant scary scene. The movie as a whole was still enjoyed, loved, and desired.
Picture yourself as that movie. The seizure is the dark scene in which the viewers feared and disliked. But when it’s all over, you’re still loved and desired. You’re the movie that everyone runs telling their friends about how great you are! Take time to sit back and see yourself that way. The seizures you have are just the dark scenes of your life. You’re still the person who everyone wants to see. They know that even the dark scary scene is just a small portion of the entire you. It’s time you recognize that, too!
Memory Issues and Solutions:
Can you remember when you had a memory?! Memory issues are one of the most talked about symptoms, and rightfully so! The memory process is much more than short term and long term. Your brain is far from simplistic. It is a complicated precious organ which helps to define you, and provides you with one of your most precious senses, your memory.
Ways to Remember and Store Important Data:
There are many ways to help you remember valuable information. Search for the ones that will work best for you, and enjoy remembering the bits and pieces of your life!
Physical Aids:
If you read your email faithfully, email yourself! If it's a short message, you can simply write the message in the subject line!
Keep a hand held digital recorder close at hand for quick verbal “notes.”
Keep a journal or diary.
Make a scrapbook for special events, especially family memories.
Write things down on a memo board.
Keep a notepad in the glove compartment, and/or pocket book.
Use a bright color highlighter to mark important messages on a notepad or calendar.
Mental Aids:
Stop what you're doing and focus!
Verbally repeat several times the information you need to remember.
Listen to important information repeatedly on a digital recorder,
C.D. or whatever source you prefer.
Always put regularly used items in the same place! Do not move them or you’ll lose them!
If possible when you need to remember a short list, use the first letters from each word to spell another word. For example, if you need to go to the store for paper, envelopes, notebook, and stamps you can spell the word pens! Say each item a few times with the corresponding letters and word. Just remembering one letter from each word may prove to be handy!
Use word associations. Try to use words that you can directly connect with. As far as people’s names, use the person’s appearance, personality, or connect their name with another word, situation or item.
For instance, if you want to remember names of people you've been eager to meet, and want to remember Ryan's name, you can think, I've been dyin' to meet Ryan! Situations and rhymes work great together! You can use features in many different ways, like Jim's thin so he's a slim Jim! Another option is to compare their appearance with someone you know that has some of the same features and the same name!
Can you remember when you had a memory?! Memory issues are one of the most talked about symptoms, and rightfully so! The memory process is much more than short term and long term. Your brain is far from simplistic. It is a complicated precious organ which helps to define you, and provides you with one of your most precious senses, your memory.
Ways to Remember and Store Important Data:
There are many ways to help you remember valuable information. Search for the ones that will work best for you, and enjoy remembering the bits and pieces of your life!
Physical Aids:
If you read your email faithfully, email yourself! If it's a short message, you can simply write the message in the subject line!
Keep a hand held digital recorder close at hand for quick verbal “notes.”
Keep a journal or diary.
Make a scrapbook for special events, especially family memories.
Write things down on a memo board.
Keep a notepad in the glove compartment, and/or pocket book.
Use a bright color highlighter to mark important messages on a notepad or calendar.
Mental Aids:
Stop what you're doing and focus!
Verbally repeat several times the information you need to remember.
Listen to important information repeatedly on a digital recorder,
C.D. or whatever source you prefer.
Always put regularly used items in the same place! Do not move them or you’ll lose them!
If possible when you need to remember a short list, use the first letters from each word to spell another word. For example, if you need to go to the store for paper, envelopes, notebook, and stamps you can spell the word pens! Say each item a few times with the corresponding letters and word. Just remembering one letter from each word may prove to be handy!
Use word associations. Try to use words that you can directly connect with. As far as people’s names, use the person’s appearance, personality, or connect their name with another word, situation or item.
For instance, if you want to remember names of people you've been eager to meet, and want to remember Ryan's name, you can think, I've been dyin' to meet Ryan! Situations and rhymes work great together! You can use features in many different ways, like Jim's thin so he's a slim Jim! Another option is to compare their appearance with someone you know that has some of the same features and the same name!
Epilepsy Friends:
Friends are indispensable because they are like angels, even though you can’t see them, they’re always there. It’s no big secret that everyone feels more comfortable around people with whom they have a
lot in common. Any function which reaches out to epilepsy friends can form a necessary bond. After all, we all seek love, help, and an avenue to vent our emotions. Don’t hesitate to reach out to other people with epilepsy and be their best friend. The options mentioned in this section are by far not the only possibilities! There are surely more ways to befriend people with epilepsy. Go beyond my recommendations
and use your imagination!
Attend or start a support group: You will most definitely receive benefits that will outweigh the distress you feel as you struggle on your own. Keep in mind, if you don’t step out of your unpleasant little world, you might get stuck there. Get around the people that will truly be happy to help you grow and become a better person! The greatest advantage is how enjoyable it is when you’re discussing similar situations and hearing you’re new friend(s) say, “I know exactly what you mean! I do that too!” or “I always thought I was just weird.” or “I’m so glad we talked about this.” And it goes on and on! It’s so refreshing to be able to sit down with other people and connect with them. After all, who else can you do that with!
Lead a support group: Open up the meeting with a thought provoking question. Or simply start with a theme. For instance, you can get your friends to open up by answering a question, such as,“What do you wish you knew from the beginning of your battle with epilepsy?” That simple question can open a lot of conversation. A good way to end each meeting is to have a “member” tell something good that’s happened since the last meeting. You can also end it by presenting great information and/or success stories from epilepsy magazines and/or websites. You may be able to update members about new studies, medications, and/or trials. The point of a meeting is to get refreshed. It can be done. It just takes a little bit of effort and
a lot of compassion for your friends.
Friends are indispensable because they are like angels, even though you can’t see them, they’re always there. It’s no big secret that everyone feels more comfortable around people with whom they have a
lot in common. Any function which reaches out to epilepsy friends can form a necessary bond. After all, we all seek love, help, and an avenue to vent our emotions. Don’t hesitate to reach out to other people with epilepsy and be their best friend. The options mentioned in this section are by far not the only possibilities! There are surely more ways to befriend people with epilepsy. Go beyond my recommendations
and use your imagination!
Attend or start a support group: You will most definitely receive benefits that will outweigh the distress you feel as you struggle on your own. Keep in mind, if you don’t step out of your unpleasant little world, you might get stuck there. Get around the people that will truly be happy to help you grow and become a better person! The greatest advantage is how enjoyable it is when you’re discussing similar situations and hearing you’re new friend(s) say, “I know exactly what you mean! I do that too!” or “I always thought I was just weird.” or “I’m so glad we talked about this.” And it goes on and on! It’s so refreshing to be able to sit down with other people and connect with them. After all, who else can you do that with!
Lead a support group: Open up the meeting with a thought provoking question. Or simply start with a theme. For instance, you can get your friends to open up by answering a question, such as,“What do you wish you knew from the beginning of your battle with epilepsy?” That simple question can open a lot of conversation. A good way to end each meeting is to have a “member” tell something good that’s happened since the last meeting. You can also end it by presenting great information and/or success stories from epilepsy magazines and/or websites. You may be able to update members about new studies, medications, and/or trials. The point of a meeting is to get refreshed. It can be done. It just takes a little bit of effort and
a lot of compassion for your friends.
Seizure Response Dogs:
Seizure response dogs are a special type of service dog, specifically trained to help someone with uncontrolled epilepsy. Each dog goes through a specialized training. The initial training is for qualification.
Then the dog goes through a second training with their potential owner in order to satisfy their specific needs. Labradors and Golden Retrievers are preferable “candidates” because of their natural interest in retrieving and pleasant temperament. That does not mean other dogs cannot be utilized, it simply means they are both known for successfully completing the trainings and fulfilling their “job” requirements.
Your assistance dog will:
Provide physical and emotional support.
Either summon for help, by activating a medical alert on a preprogrammed phone or find another person to assist you.
Block individuals who have absence seizures from walking into streets or other possible dangerous places as well as prevent them from walking into harmful obstacles.
Be able to pull potentially dangerous objects away from you.
Carry information regarding your condition.
Attempt to arouse you from unconsciousness after a seizure.
Retrieve a phone for you, prior to a seizure.
Stay with you during a seizure.
Instill confidence.
Provide companionship and contribute to your overall emotional well-being.
Be your best friend!
Seizure response dogs are a special type of service dog, specifically trained to help someone with uncontrolled epilepsy. Each dog goes through a specialized training. The initial training is for qualification.
Then the dog goes through a second training with their potential owner in order to satisfy their specific needs. Labradors and Golden Retrievers are preferable “candidates” because of their natural interest in retrieving and pleasant temperament. That does not mean other dogs cannot be utilized, it simply means they are both known for successfully completing the trainings and fulfilling their “job” requirements.
Your assistance dog will:
Provide physical and emotional support.
Either summon for help, by activating a medical alert on a preprogrammed phone or find another person to assist you.
Block individuals who have absence seizures from walking into streets or other possible dangerous places as well as prevent them from walking into harmful obstacles.
Be able to pull potentially dangerous objects away from you.
Carry information regarding your condition.
Attempt to arouse you from unconsciousness after a seizure.
Retrieve a phone for you, prior to a seizure.
Stay with you during a seizure.
Instill confidence.
Provide companionship and contribute to your overall emotional well-being.
Be your best friend!
Parenting Your Child with Epilepsy:
Raising a child with epilepsy is certainly not easy, and it will almost certainly change your life. Children are viewed as delicate little people who are easily harmed by the world. That is true to a degree but they won’t be able to learn how to protect themselves from the world unless you teach them to be aware of their own dangers. Small children already have typical dangers to learn about, yet alone having to deal with the threat of seizures. However, if appropriately supervised, an elementary age child is capable of living within
their environment with the assumption their environment has been made seizure friendly. Just because your little one has epilepsy doesn’t mean they aren’t capable of learning how to look out for themselves.
Especially if you teach them as well as allow them, to get minor injuries to learn from.
Yes, it’s difficult since it’s your nature to protect your child. However, over protection is not good for them because it can stunt them from growing up one step at a time. Since all children are not created equal, do not be quick to compare your child with other children who have epilepsy. Siblings may feel a sense of resentment towards your child with epilepsy due to the amount of attention they are receiving from you.
Some siblings might feel at fault or fear they’ll get seizures, too. So it’s up to you to provide an opportunity for them to vent their feelings. It’s important for you to demonstrate and reinforce attention and caring
feelings towards all your children. Since such a demand can be difficult to fulfill, request family members
and/or friends to allow you “time off” so you can take, one child at a time on a “date” once in a while.
You can go to the movies, the park, or where ever they choose. This will give them a sense they are just as
special. While you’re on the date, don’t bring up anything about your child with epilepsy. Only discuss them when your child brings them up. Even then, let them control the length of the conversation. Be
sure to be open and honest. Most children know when they’re being deceived. Be sure to provide them an opportunity to ask questions or address all their fears. But most importantly, do whatever you can to make the “date” special for them.
Raising a child with epilepsy is certainly not easy, and it will almost certainly change your life. Children are viewed as delicate little people who are easily harmed by the world. That is true to a degree but they won’t be able to learn how to protect themselves from the world unless you teach them to be aware of their own dangers. Small children already have typical dangers to learn about, yet alone having to deal with the threat of seizures. However, if appropriately supervised, an elementary age child is capable of living within
their environment with the assumption their environment has been made seizure friendly. Just because your little one has epilepsy doesn’t mean they aren’t capable of learning how to look out for themselves.
Especially if you teach them as well as allow them, to get minor injuries to learn from.
Yes, it’s difficult since it’s your nature to protect your child. However, over protection is not good for them because it can stunt them from growing up one step at a time. Since all children are not created equal, do not be quick to compare your child with other children who have epilepsy. Siblings may feel a sense of resentment towards your child with epilepsy due to the amount of attention they are receiving from you.
Some siblings might feel at fault or fear they’ll get seizures, too. So it’s up to you to provide an opportunity for them to vent their feelings. It’s important for you to demonstrate and reinforce attention and caring
feelings towards all your children. Since such a demand can be difficult to fulfill, request family members
and/or friends to allow you “time off” so you can take, one child at a time on a “date” once in a while.
You can go to the movies, the park, or where ever they choose. This will give them a sense they are just as
special. While you’re on the date, don’t bring up anything about your child with epilepsy. Only discuss them when your child brings them up. Even then, let them control the length of the conversation. Be
sure to be open and honest. Most children know when they’re being deceived. Be sure to provide them an opportunity to ask questions or address all their fears. But most importantly, do whatever you can to make the “date” special for them.
Living with Epilepsy in the Teen Years:
Being a teenager is tough. As you know, being a teenager with epilepsy can be even tougher yet. But it is something that can be worked out. That doesn’t mean epilepsy won’t promote struggles and obstacles but there are ways to work around them to make life a little easier and more enjoyable.
Having the right perspective needs to be first on your list of priorities. If you believe your problem is so big that you will never see true happiness and it will never get better, you are hurting yourself more than the epilepsy itself. The bigger you see the epilepsy you struggle with, the more difficult it will be to deal with. In other words, your perspective makes a big difference in dealing with epilepsy. You can and will succeed, if you have the right mindset and are determined and persistent regardless of your condition. Take note,
I called epilepsy a condition which means, existing circumstance. Simply stated, epilepsy is a circumstance that can be worked through. It can be either bigger or smaller depending on your perception. Make it smaller so you can enjoy the best years of your life.
It’s equally important for you to realize that epilepsy doesn’t define who you are, your personality does! Are you nothing but one big seizure? Of course not! Are you a person with feelings, desires, dreams, and plans? Of course you are! That means epilepsy is just an annoying fraction of your life. It’s a health issue. Don’t let it become a personality issue. Don’t let it change who you are. Epilepsy is what you have, not who you are!
Epilepsy certainly shouldn’t keep you from living out the best years of your life. Don’t let it keep you from expanding yourself. Yes, you struggle with a lot of major issues but the very issues that are holding you back are the same issues that can make you a stronger, more determined, and more insightful person. Manage your epilepsy don’t let your epilepsy manage you.
Being a teenager is tough. As you know, being a teenager with epilepsy can be even tougher yet. But it is something that can be worked out. That doesn’t mean epilepsy won’t promote struggles and obstacles but there are ways to work around them to make life a little easier and more enjoyable.
Having the right perspective needs to be first on your list of priorities. If you believe your problem is so big that you will never see true happiness and it will never get better, you are hurting yourself more than the epilepsy itself. The bigger you see the epilepsy you struggle with, the more difficult it will be to deal with. In other words, your perspective makes a big difference in dealing with epilepsy. You can and will succeed, if you have the right mindset and are determined and persistent regardless of your condition. Take note,
I called epilepsy a condition which means, existing circumstance. Simply stated, epilepsy is a circumstance that can be worked through. It can be either bigger or smaller depending on your perception. Make it smaller so you can enjoy the best years of your life.
It’s equally important for you to realize that epilepsy doesn’t define who you are, your personality does! Are you nothing but one big seizure? Of course not! Are you a person with feelings, desires, dreams, and plans? Of course you are! That means epilepsy is just an annoying fraction of your life. It’s a health issue. Don’t let it become a personality issue. Don’t let it change who you are. Epilepsy is what you have, not who you are!
Epilepsy certainly shouldn’t keep you from living out the best years of your life. Don’t let it keep you from expanding yourself. Yes, you struggle with a lot of major issues but the very issues that are holding you back are the same issues that can make you a stronger, more determined, and more insightful person. Manage your epilepsy don’t let your epilepsy manage you.
A Different Look at Epilepsy:
Epilepsy is like a roller coaster ride, full of ups and downs and sudden turns! Even though the ups and downs and sudden turns sometimes get the best of us, we can take advantage of the ups and/or create some! Many of us tend to come up with a few silly comments in order to take the edge off a very serious moment. With that in mind, the following comments were made by my friends at Myspace.com.
Epilepsy is definitely serious but humor helps when all else fails. It also helps other people feel a little more comfortable after witnessing a seizure. When we use humor they find it easier to relax and/or recuperate from their emotional trauma. Please note, I am not saying it’s alright for other people to make fun of you, your seizures, or epilepsy. People in the outside world probably aren’t doing it to take the edge off. They may be doing it to be mean and callous. Remember the following comments are for personal use. They are not being promoted through me or any organization, so please don’t get insulted or offended by any of them. If you do, you’ll be missing out on the purpose of this chapter.
“I have a great memory, it’s just short!”
I’m okay. This happens all the time when I think of my mother in law!
People who have seizures make the best break dancers!
After a seizure someone would say, “You just had a seizure!” So I’d throw them off balance and say, “I didn’t have a seizure, my brain did!”
I don’t understand why people today get all upset over seizures. I thought “rock and roll” was popular!
No one told me the weather was supposed to be bad today. I guess I’m the only one that got struck by lightning!”
MEDICAL INFORMATION:
Epilepsy is definitely serious but humor helps when all else fails. It also helps other people feel a little more comfortable after witnessing a seizure. When we use humor they find it easier to relax and/or recuperate from their emotional trauma. Please note, I am not saying it’s alright for other people to make fun of you, your seizures, or epilepsy. People in the outside world probably aren’t doing it to take the edge off. They may be doing it to be mean and callous. Remember the following comments are for personal use. They are not being promoted through me or any organization, so please don’t get insulted or offended by any of them. If you do, you’ll be missing out on the purpose of this chapter.
“I have a great memory, it’s just short!”
I’m okay. This happens all the time when I think of my mother in law!
People who have seizures make the best break dancers!
After a seizure someone would say, “You just had a seizure!” So I’d throw them off balance and say, “I didn’t have a seizure, my brain did!”
I don’t understand why people today get all upset over seizures. I thought “rock and roll” was popular!
No one told me the weather was supposed to be bad today. I guess I’m the only one that got struck by lightning!”
MEDICAL INFORMATION:
Doctors can say what he or she thinks but that isn’t good enough! Seizures are serious business. Every seizure you experience, adversely affects you. You do not have the luxury of playing guessing games with your precious brain! Your doctor shouldn’t either! If they have not performed any tests, you need to take charge of your health. Insist on well-rounded testing which will be the introduction to getting the medical care you deserve.
The purpose of initial testing is to not only prove or
disprove seizure activity but also to determine the seizure frequency, duration, types, and clues of abnormalities. Even if you think, you know what types of seizures you are having and how often, you may be wrong! You could be having subtle seizures undetected by you. Once you have received all the necessary information, you can get started with the best treatment plan designed specifically for you.
Each test available and/or expected is included in this chapter. They are described step by step from beginning to end and provide detailed lists walking you through before, during, and after the procedure, including the appearance and sound of each machine used! Risks and benefits are also included.
Example:
S.P.E.C.T. (single photon emission computed tomography) is a large circular device, which contains a special camera that detects the amount of radioactive tracer absorbed by your body. Concentrate at the seizure region, can help identify the location of your seizures and assist physicians concerning the blood flow to your brain tissue.
Analyzing blood flow to your brain may help determine how specific areas are functioning. For example, blood flow increases to an area of the brain in people with epilepsy when on the other hand a person with out epilepsy shows a decreased blood flow. The pictures go to a computer that uses the information to create 3-D images.
Preparation:
Wear comfortable clothing.
Prepare to stay for one to two hours.
No restrictions on what you can eat or drink.
Procedure:
You will receive an injection through intravenous for a small amount of radioactive tracer called radiobled.
In some cases, you may inhale the substance through your nose.
You will need to rest for about 10-20 minutes until the tracer reaches your brain.
Then you lay comfortably on a table-like bed on the scanner.
The scan will not hurt. However, you may feel uncomfortable lying still for an extended period.
The machine will rotate around you. You will not be in a tube-like machine.
It is more like a large x-ray machine over your head with just a few inches clearance. However, the sides are open so it is not as confining as many other scans.
You will need to remain as still as possible.
You will have a strap on your head to keep your head in the correct position.
In some cases, you may receive a sedative before the test to help keep you more comfortable while lying still.
In some cases, you may receive another injection and undergo another scan 24 hours later. Your doctor then compares the two scans.
The scan can take between 30 to 90 minutes.
After Procedure:
Once the scan is complete, you can leave.
You will need to drink plenty of fluids in order to flush out any tracer left in your body.
Benefits:
Comparable to a P.E.T. scan in providing medical information but less expensive.
Most of the radioactive tracer leaves your body through your urine within a few hours.
Your body breaks down the remaining tracer over the next day or two.
Risks:
For most people, S.P.E.C.T. scans are safe. The threats are minimal.
The amount of radiation your body endures during the scan is less than the amount you receive from a chest X-ray or CT scan.
In general, the radiation levels are similar to those you might encounter naturally in the environment over the course of a year.
If you receive an injection or infusion of radioactive tracer, you may experience bleeding, pain or swelling in that particular site in your arm.
Seizure Types and Triggers:
The brain runs on chemical and electrical signals. A seizure is an electrical storm in the brain. Seizures can cause involuntary changes in body movement, function, sensation, awareness, and behavior. Symptoms experienced during a seizure depend on where the disturbance in electrical activity occurs. There are many variables for seizure activity. The numerous epileptic seizure types are most commonly defined and grouped according to a scheme proposed by the International League against Epilepsy (ILAE). Distinguishing between seizure types is important since different types of seizures may have different causes, prognosis, and treatments.
Aura is a type of simple partial seizure, which sometimes signals the
onset of a generalized or complex partial seizure.
Characteristics may include:
Déjà vu
Dizziness
Odors Sounds Stomach discomfort
Uneasiness/fear
Visual illusions or misconceptions
Primary Generalized Epilepsy
Primary generalized epilepsy is a type of epilepsy, which occurs when electrical discharges begin in both sides of the brain at the same time. Myoclonic “Myo” means muscle. “Clonus” means rapidly alternating
contraction and relaxation of a muscle.
Characteristics:
Brief jerks of muscle group, usually no longer than a second or two, could be just one. (Sometimes many will occur within a short
time).
Hiccups or sudden jerk that may awaken the person presently while falling asleep (normal)
May or may not be associated with loss of consciousness, abnormal movements or behavior
Tonic clonic, formerly known as “grand mal” or convulsion is an electrical discharge, which involves all or most of the brain. They can usually be controlled by (AED) anti-epileptic drugs.
Characteristics:
Falling
Lose consciousness
Air is forced past the vocal cords causing a cry or groan
All the muscles stiffen (tonic)
Arms and legs jerk rapidly and rhythmically (clonic)
Jerking
Stiffening
Bending and relaxing at the elbows, hips, and knees
Bladder or bowel control sometimes lost
May turn blue in the face
Cheek or tongue may be bitten
Consciousness returns slowly (may be drowsy, confused, agitated,
depressed)
Generally lasts one to three minutes
Partial
Partial seizures begin with an electrical discharge in one limited area of the brain (focal onset). Depending on where they start and which parts of the brain they involve, they may alter consciousness or
awareness. They are the most common type of seizures experienced by people with epilepsy.
Characteristics:
Remain alert
Remember what happened
May be tired and confused
May not return to “normal” for up to 15 minutes
Complex Partial
Complex partial means awareness is altered. They used to be known as psychomotor seizures.
Characteristics:
Begin with “funny” feeling or emotion or sometimes without warning
Stares blankly
Performs automatic unconscious repeated movements such as lip smacking, pulling on clothes, wandering around aimlessly
Usually lasts between 30 seconds to two minutes
Awareness is altered or lost
May be confused and tired for 15 minutes after the seizure
May not feel fully “normal” for hours after the seizure
Inability to speak, understand, and respond
Simple Partial
Simple partial seizures affect a small area of the brain. A person suffering from simple partial seizures remain aware. Each seizure can be exceptionally different from one person to another as well as one
seizure to another. They are separated by three different classifications, which include motor, sensory, and psychic.
All seizures include a description followed by their characteristics.
The brain runs on chemical and electrical signals. A seizure is an electrical storm in the brain. Seizures can cause involuntary changes in body movement, function, sensation, awareness, and behavior. Symptoms experienced during a seizure depend on where the disturbance in electrical activity occurs. There are many variables for seizure activity. The numerous epileptic seizure types are most commonly defined and grouped according to a scheme proposed by the International League against Epilepsy (ILAE). Distinguishing between seizure types is important since different types of seizures may have different causes, prognosis, and treatments.
Aura is a type of simple partial seizure, which sometimes signals the
onset of a generalized or complex partial seizure.
Characteristics may include:
Déjà vu
Dizziness
Odors Sounds Stomach discomfort
Uneasiness/fear
Visual illusions or misconceptions
Primary Generalized Epilepsy
Primary generalized epilepsy is a type of epilepsy, which occurs when electrical discharges begin in both sides of the brain at the same time. Myoclonic “Myo” means muscle. “Clonus” means rapidly alternating
contraction and relaxation of a muscle.
Characteristics:
Brief jerks of muscle group, usually no longer than a second or two, could be just one. (Sometimes many will occur within a short
time).
Hiccups or sudden jerk that may awaken the person presently while falling asleep (normal)
May or may not be associated with loss of consciousness, abnormal movements or behavior
Tonic clonic, formerly known as “grand mal” or convulsion is an electrical discharge, which involves all or most of the brain. They can usually be controlled by (AED) anti-epileptic drugs.
Characteristics:
Falling
Lose consciousness
Air is forced past the vocal cords causing a cry or groan
All the muscles stiffen (tonic)
Arms and legs jerk rapidly and rhythmically (clonic)
Jerking
Stiffening
Bending and relaxing at the elbows, hips, and knees
Bladder or bowel control sometimes lost
May turn blue in the face
Cheek or tongue may be bitten
Consciousness returns slowly (may be drowsy, confused, agitated,
depressed)
Generally lasts one to three minutes
Partial
Partial seizures begin with an electrical discharge in one limited area of the brain (focal onset). Depending on where they start and which parts of the brain they involve, they may alter consciousness or
awareness. They are the most common type of seizures experienced by people with epilepsy.
Characteristics:
Remain alert
Remember what happened
May be tired and confused
May not return to “normal” for up to 15 minutes
Complex Partial
Complex partial means awareness is altered. They used to be known as psychomotor seizures.
Characteristics:
Begin with “funny” feeling or emotion or sometimes without warning
Stares blankly
Performs automatic unconscious repeated movements such as lip smacking, pulling on clothes, wandering around aimlessly
Usually lasts between 30 seconds to two minutes
Awareness is altered or lost
May be confused and tired for 15 minutes after the seizure
May not feel fully “normal” for hours after the seizure
Inability to speak, understand, and respond
Simple Partial
Simple partial seizures affect a small area of the brain. A person suffering from simple partial seizures remain aware. Each seizure can be exceptionally different from one person to another as well as one
seizure to another. They are separated by three different classifications, which include motor, sensory, and psychic.
All seizures include a description followed by their characteristics.
Treatment Options:
Epilepsy is a battle in itself, yet alone finding the right treatment. Unfortunately, not everyone will reach his or her goal of seizure free living, at least not with the first try or type of treatment. The beauty is there are many options for treatments and maybe even cures. Even if you have struggled with epilepsy your entire life with little to no seizure control, it does not mean you should quit trying. Research continues to bring new
options to the table giving you a fresh chance at living your life seizure free!
Antiepileptic Drugs (AED):
There is a large range of medications on the market with more to come. Medication is the first line of defense against seizure activity. Treatment through medication is a tricky balancing act. You need enough medication to stop your seizures. However, too much medication can cause negative side effects. The key is to find a happy medium.
Before you get started, you need to accept there is no “rhyme or reason.” When it comes to finding the right medication at the right dose, it's a guessing game. You may need to try a few different medications, mix of medications, and dosing adjustments. All the “fine tuning” can take a few months.
Dietary Therapy:
Sometimes seizures are intractable and continue despite medication, even with aggressive medication treatment. As childrens precious little brains are being attacked by seizures, they can be gaining ground over possibly controlling them with a special diet! However, it is important to note, therapeutic diets are just as serious as medication and need to be monitored. No diet to treat epilepsy should be done without a neurologist’s and dietitian’s involvement.
Diet example:
Modified Atkins diet is a modification of the ketogenic diet. The foods are similar (high in fat and low in carbohydrates) however there are key differences between the two. The diet may help children with intractable seizures. Blood and urine should be monitored every three months, and urine ketones once or twice a week. Like the ketogenic diet, if your child is seizure free for a period, the diet can stop successfully.
Differences from ketogenic diet:
No weighing and measuring foods
No restriction of fluids or calories
Fats are strongly encouraged
No restrictions on proteins
Do not have to follow specific meal plans
Typical carbohydrate intake is 20 grams
Hospitalization is not required
Fasting is not necessary
Foods can be eaten more freely in restaurants
and outside the home
Process:
10 grams of carbohydrates daily for first month (may be 15 – 20 if 10 is too restrictive).
Example of a typical daily menu:
Breakfast:
Omelet with cheese
Cream
Butter
Tomato
Lunch:
Cream of chicken soup with vegetable of choice
Supper:
Sausage
Parsnip chips
Mushrooms
Raspberry cream yogurt
Possible side effects:
High cholesterol
Low bone density
Infertility
Weight loss
Benefits:
Reduction in seizures after six months
Reduction in medications
The following information is provided for each diet:
the process
materials needed (if any)
possible side effects
benefits
example of typical daily menu
Diets:
Ketogenic diet
Low glycemic index treatment (LGIT)
Modified Atkins diet
Surgery:
There are two kinds of surgery, curative and palliative. Curative attempts to stop the seizures, and palliative restricts the spread of the seizures. Most patients with epilepsy do not require surgery. However, if medications are ineffective after a certain period, surgery can be an appropriate option for treatment for some types of epilepsy. If there’s no control over your seizures with medication, you may be a candidate for surgery. However, surgery is an individual decision and not all patients are candidates for surgery.
Evaluation Prior to Surgery:
If it has been determined, that your seizures relate to epilepsy and you have not improved after aggressive medication therapy, and surgery is the next appropriate option, a range of tests will be the next step! The testing will help locate the seizure focus and provide the surgeon with valuable information about your brain. The tests needed depend on the type of epilepsy and type of surgery planned.
Typical tests include:
E.E.G. (external)
E.E.G. (subdural/depth electrodes)
Video E.E.G.
M.R.I.
P.E.T.
S.P.E.C.T
Complete physical
Extensive medical history (review of seizure type, frequency, and seizure duration)
Neuropsychological testing
Psychiatric evaluation
Visual field evaluation
Wada
If you have exhausted all your options for treatment with little or no seizure control, do not give up hope! Scientists have not quit searching for new devices, surgeries, and a cure. Since the medical world will never give up, you shouldn’t either because it’s not over yet.
Keep your eyes open for new treatments! Keep asking your physician and searching the web. Never tire, the next treatment might be the right one for you!
All tests are explained in detail in the Tests chapter. All surgery types, including implants are included in with details from beginning to end, as well as risks and benefits.
Epilepsy is a battle in itself, yet alone finding the right treatment. Unfortunately, not everyone will reach his or her goal of seizure free living, at least not with the first try or type of treatment. The beauty is there are many options for treatments and maybe even cures. Even if you have struggled with epilepsy your entire life with little to no seizure control, it does not mean you should quit trying. Research continues to bring new
options to the table giving you a fresh chance at living your life seizure free!
Antiepileptic Drugs (AED):
There is a large range of medications on the market with more to come. Medication is the first line of defense against seizure activity. Treatment through medication is a tricky balancing act. You need enough medication to stop your seizures. However, too much medication can cause negative side effects. The key is to find a happy medium.
Before you get started, you need to accept there is no “rhyme or reason.” When it comes to finding the right medication at the right dose, it's a guessing game. You may need to try a few different medications, mix of medications, and dosing adjustments. All the “fine tuning” can take a few months.
Dietary Therapy:
Sometimes seizures are intractable and continue despite medication, even with aggressive medication treatment. As childrens precious little brains are being attacked by seizures, they can be gaining ground over possibly controlling them with a special diet! However, it is important to note, therapeutic diets are just as serious as medication and need to be monitored. No diet to treat epilepsy should be done without a neurologist’s and dietitian’s involvement.
Diet example:
Modified Atkins diet is a modification of the ketogenic diet. The foods are similar (high in fat and low in carbohydrates) however there are key differences between the two. The diet may help children with intractable seizures. Blood and urine should be monitored every three months, and urine ketones once or twice a week. Like the ketogenic diet, if your child is seizure free for a period, the diet can stop successfully.
Differences from ketogenic diet:
No weighing and measuring foods
No restriction of fluids or calories
Fats are strongly encouraged
No restrictions on proteins
Do not have to follow specific meal plans
Typical carbohydrate intake is 20 grams
Hospitalization is not required
Fasting is not necessary
Foods can be eaten more freely in restaurants
and outside the home
Process:
10 grams of carbohydrates daily for first month (may be 15 – 20 if 10 is too restrictive).
Example of a typical daily menu:
Breakfast:
Omelet with cheese
Cream
Butter
Tomato
Lunch:
Cream of chicken soup with vegetable of choice
Supper:
Sausage
Parsnip chips
Mushrooms
Raspberry cream yogurt
Possible side effects:
High cholesterol
Low bone density
Infertility
Weight loss
Benefits:
Reduction in seizures after six months
Reduction in medications
The following information is provided for each diet:
the process
materials needed (if any)
possible side effects
benefits
example of typical daily menu
Diets:
Ketogenic diet
Low glycemic index treatment (LGIT)
Modified Atkins diet
Surgery:
There are two kinds of surgery, curative and palliative. Curative attempts to stop the seizures, and palliative restricts the spread of the seizures. Most patients with epilepsy do not require surgery. However, if medications are ineffective after a certain period, surgery can be an appropriate option for treatment for some types of epilepsy. If there’s no control over your seizures with medication, you may be a candidate for surgery. However, surgery is an individual decision and not all patients are candidates for surgery.
Evaluation Prior to Surgery:
If it has been determined, that your seizures relate to epilepsy and you have not improved after aggressive medication therapy, and surgery is the next appropriate option, a range of tests will be the next step! The testing will help locate the seizure focus and provide the surgeon with valuable information about your brain. The tests needed depend on the type of epilepsy and type of surgery planned.
Typical tests include:
E.E.G. (external)
E.E.G. (subdural/depth electrodes)
Video E.E.G.
M.R.I.
P.E.T.
S.P.E.C.T
Complete physical
Extensive medical history (review of seizure type, frequency, and seizure duration)
Neuropsychological testing
Psychiatric evaluation
Visual field evaluation
Wada
If you have exhausted all your options for treatment with little or no seizure control, do not give up hope! Scientists have not quit searching for new devices, surgeries, and a cure. Since the medical world will never give up, you shouldn’t either because it’s not over yet.
Keep your eyes open for new treatments! Keep asking your physician and searching the web. Never tire, the next treatment might be the right one for you!
All tests are explained in detail in the Tests chapter. All surgery types, including implants are included in with details from beginning to end, as well as risks and benefits.
Medications and Possible Side Effects:
(Generics are in parentheses)Antiepileptic medications can cause unwanted side effects in some people. The majority of the time the effects are mild and short lasting. Finding the correct medication(s) and dosage amounts can be a tedious time to go through. However, just because side effects exist does not mean you will experience them. Inform your doctor as soon as possible if any side effects develop or change in intensity. Only your doctor can determine if it is safe for you to continue, discontinue or change your medication. Do not make any medical decisions based on the following information. If the information provided in this chapter causes you concern, it’s in your best interest to discuss it with your doctor and/or their nurse. They can go over the symptoms in which they see more often or not at all! Serious side effects are rare.
Do not hinder yourself from trying a medication due to the possible side effects. In addition, do not stop taking your medication unless your doctor instructs you to do so. Please remember, your risk of harm from a seizure is far greater than the risk of side effects from medication. If insurance and/or finances are an issue and you cannot afford your medication. See: Patient Assistance Programs. Many pharmaceutical companies offer help to cover the cost of medication. Some even offer a discount card for specific medications. Another option is to use a generic version. As a last resort, you can request trial packets from your doctor for a temporary situation.
Generics versus Brand Name
There is reason to believe there is a big enough discrepancy between brand name and generic medication that can be incompatible with seizure control. Some people’s seizure activity is so vulnerable that a minute change from brand name to generic or vice versa can cause preventable seizure activity. Therefore, continuing with either generic or brand name appears to be the best method now until research offers more information. In other words, if the brand name medication successfully controls your seizures continue using
it! On the other hand, if generic medications work keep using them! Generics get a bad name but are not automatically the problem. It is the switching around that appears to be the problem.
However, since there is no clinical evidence to confirm there is a dilemma amongst epilepsy patients and generic medication, both pharmacies and insurance companies can change your medications without foreknowledge or authorization. Nevertheless you can take charge of the situation. If the brand name proves to be successful, have your doctor write, ‘brand name medically necessary’ on every prescription. And if the generic is successful, have your doctor write ‘generic name medically necessary’ on every prescription. You need to include the manufacturer’s name on every prescription since many companies make generics for the same medication! (Manufacturer names can be found on the prescription bottle). This will prevent flip flopping with your medication.
The following medications cause bone loss:
Tegretol, Carbatrol (Carbamazepine)
Dilantin (Phenytek)
Phenobarbital (Phenytoin)
Primidone (Mysoline)
Topamax (Topiramate)
Depakote (Valproate)
Example of medication and possible side effects:
Carbatrol (Carbamazepine)
Anxiety
Back pain
Constipation
Drowsiness
Diarrhea
Dizziness
Dry mouth
Headache
Heartburn
Memory problems
Unsteadiness
Upset stomach
Vomiting
Do not take this medication, if you are taking MAO inhibitors or have stopped taking them within the past two weeks.
Childrens Epilepsy:
Epilepsy is one of the most common chronic conditions treated by pediatric neurologists. Twenty percent have an intractable condition. Most children with epilepsy have the same range of abilities and
intelligence as other children. However, some children with epilepsy will develop learning difficulties. This may be due to a coexisting condition, such as a brain abnormality, or it might be related to the child’s
seizure severity. Many times the medication is a contributing factor. When learning difficulties are identified, there are both medical and educational strategies available.
A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like, the age at which the seizures began the type of seizures, whether the child is male or female, and whether they experience difficulties with learning. They can be either symptomatic of underlying brain damage or disease or idiopathic (of unknown cause). In general, idiopathic forms have a better prognosis in terms of both seizure control and eventual remission than do symptomatic forms.
Aicardi syndrome is very rare. It does not appear to run in families. It’s
suspected to be due to spontaneous mutation during conception.
Characteristics:
Abnormally formed bones (backbone and scoliosis).
Asymmetry of the face (uneven, lopsided).
Only occurs in girls.
Caused by brain cysts or other brain abnormalities.
Seizures are commonly infantile spasms.
Physical features are cleft lip and palate.
Typical eye abnormalities on the retina.
Partial motor seizures and complex partial seizures are less
common.
Structural abnormalities include partial or completely absent
corpus
callosum.
Developmental delay.
All syndromes and other childhood epilepsies are included in this chapter.
Epilepsy is one of the most common chronic conditions treated by pediatric neurologists. Twenty percent have an intractable condition. Most children with epilepsy have the same range of abilities and
intelligence as other children. However, some children with epilepsy will develop learning difficulties. This may be due to a coexisting condition, such as a brain abnormality, or it might be related to the child’s
seizure severity. Many times the medication is a contributing factor. When learning difficulties are identified, there are both medical and educational strategies available.
A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like, the age at which the seizures began the type of seizures, whether the child is male or female, and whether they experience difficulties with learning. They can be either symptomatic of underlying brain damage or disease or idiopathic (of unknown cause). In general, idiopathic forms have a better prognosis in terms of both seizure control and eventual remission than do symptomatic forms.
Aicardi syndrome is very rare. It does not appear to run in families. It’s
suspected to be due to spontaneous mutation during conception.
Characteristics:
Abnormally formed bones (backbone and scoliosis).
Asymmetry of the face (uneven, lopsided).
Only occurs in girls.
Caused by brain cysts or other brain abnormalities.
Seizures are commonly infantile spasms.
Physical features are cleft lip and palate.
Typical eye abnormalities on the retina.
Partial motor seizures and complex partial seizures are less
common.
Structural abnormalities include partial or completely absent
corpus
callosum.
Developmental delay.
All syndromes and other childhood epilepsies are included in this chapter.
Women and Epilepsy:
All women have bone health threats as mentioned by the United States Surgeon General in 2007 when he predicted, “Half of all American women over the age of 50 would suffer an osteoporosis related bone fracture in their lifetime.” I predict women with epilepsy will be excluded, that is if you take care of your bones now! Everyone with epilepsy is at risk for bone density loss (BDL) due to antiepileptic medications. However, women have the greatest risk. But the turnout doesn’t have to be dismal since you can avoid all the complications by consuming enough calcium 1200 to1800 mg. daily with vitamin D at 600 mg. intervals. Do not put it off! Your bones won’t put it off, so you shouldn’t either!
Smoking, alcohol consumption, and obesity are all threats and challenges for your body to consume and utilize calcium. So, if you’re guilty of one or more, achieve control over them now! They’re already a risk to your body and certainly not worth broken bones, a hunched back, and a shorter body! Don’t give the threats a helping hand at destroying your bones, as well as the possibility of causing seizure activity.
Maintaining healthy bones is no joking matter. You need to have a bone density scan to check for osteopenia (thinning of the bones) and osteoporosis (reduction in bone mass). You don’t have to be
50 years old or over to be concerned about your bones.
When you have epilepsy, your concern starts after you take the first pill. So get concerned now, not scared, just concerned. Use your concern to stay on track with taking your calcium, and getting your bone density test (DEXA) regularly. The regularity for testing depends on the result of your last test. If bone loss has already begun, vitamin D and calcium are usually adequate to resolve the problem. Your doctor can also prescribe selective estrogen receptor modulators (SERMS), non-hormonal oral medication. They mimic estrogen’s effects on bone with potential risks.
Do not consider the short term hormone replacement therapy, pill or patch because they increase seizure activity.
Birth Control: You should be aware that some AEDs can interfere with the effectiveness of oral contraceptives so you should discuss this with your doctor. They may be able to prescribe a different kind of medication or suggest other ways such as an intra uterine device (I.U.D.) to avoid an unplanned pregnancy. It’s very important to take responsibility to get educated and discuss it with your doctor. If you’re sexually active, an unplanned pregnancy is possible even while on birth control. With that in mind, you should take at least 400 mcg. folic acid (folate) daily.
The following AEDs can cause a deficiency in folic acid by interfering with the way it’s absorbed:
Depakote
Dilantin
Tegretol (including XR)
Carbatrol, and
Phenobarbital
APPENDIX:
Patient Assistance Programs:
As you are surely aware, medication can be so expensive without insurance that it can be almost impossible to purchase. If you’re in a situation to choose between buying groceries or medication you need to review this chapter carefully. If you work, you need to investigate whether or not your state provides medical assistance for workers with disabilities (M.A.W.D.) by contacting your local welfare office. Not all states provide this desperately needed program. Many had them at one point but in time were cut back or simply discontinued.
Patient assistance programs are often available for certain individuals who are uninsured or have significantly limited health insurance. Reimbursement assistance is sometimes available for patients who
have health insurance and need help securing appropriate coverage. Since help can be limited in your state or simply in your personal situation, you might be eligible for help to get your medication through
a patient assistance program. When you receive medication from a P.A.P., you need to review your medication closely to be sure your prescription has been filled accurately.
Brand Name Medication, P.A.P. Provider, and Pharmaceutical Company:
Celontin myrxadvocate.com
Cephalon (866) 209-7589
Carbatrol Shire US Inc.
C Dainippon Pharmaceutical no P.A.P. data was found at time of
research.
Eisai Co., Ltd. (866) 694-2550
Please note the federal government provides the income poverty guidelines. Therefore, if you do not qualify for one company regarding your income you will probably not qualify for other companies. To review federal income poverty guidelines go to http://aspe.hhs/. gov/poverty/index.shtml Rarely companies determine their own income guidelines instead of using the federal government’s. Although eligibility differs from program to program, they all have three universal criteria which include proof of income, lack of prescription insurance, and United States citizenship.
All women have bone health threats as mentioned by the United States Surgeon General in 2007 when he predicted, “Half of all American women over the age of 50 would suffer an osteoporosis related bone fracture in their lifetime.” I predict women with epilepsy will be excluded, that is if you take care of your bones now! Everyone with epilepsy is at risk for bone density loss (BDL) due to antiepileptic medications. However, women have the greatest risk. But the turnout doesn’t have to be dismal since you can avoid all the complications by consuming enough calcium 1200 to1800 mg. daily with vitamin D at 600 mg. intervals. Do not put it off! Your bones won’t put it off, so you shouldn’t either!
Smoking, alcohol consumption, and obesity are all threats and challenges for your body to consume and utilize calcium. So, if you’re guilty of one or more, achieve control over them now! They’re already a risk to your body and certainly not worth broken bones, a hunched back, and a shorter body! Don’t give the threats a helping hand at destroying your bones, as well as the possibility of causing seizure activity.
Maintaining healthy bones is no joking matter. You need to have a bone density scan to check for osteopenia (thinning of the bones) and osteoporosis (reduction in bone mass). You don’t have to be
50 years old or over to be concerned about your bones.
When you have epilepsy, your concern starts after you take the first pill. So get concerned now, not scared, just concerned. Use your concern to stay on track with taking your calcium, and getting your bone density test (DEXA) regularly. The regularity for testing depends on the result of your last test. If bone loss has already begun, vitamin D and calcium are usually adequate to resolve the problem. Your doctor can also prescribe selective estrogen receptor modulators (SERMS), non-hormonal oral medication. They mimic estrogen’s effects on bone with potential risks.
Do not consider the short term hormone replacement therapy, pill or patch because they increase seizure activity.
Birth Control: You should be aware that some AEDs can interfere with the effectiveness of oral contraceptives so you should discuss this with your doctor. They may be able to prescribe a different kind of medication or suggest other ways such as an intra uterine device (I.U.D.) to avoid an unplanned pregnancy. It’s very important to take responsibility to get educated and discuss it with your doctor. If you’re sexually active, an unplanned pregnancy is possible even while on birth control. With that in mind, you should take at least 400 mcg. folic acid (folate) daily.
The following AEDs can cause a deficiency in folic acid by interfering with the way it’s absorbed:
Depakote
Dilantin
Tegretol (including XR)
Carbatrol, and
Phenobarbital
APPENDIX:
Patient Assistance Programs:
As you are surely aware, medication can be so expensive without insurance that it can be almost impossible to purchase. If you’re in a situation to choose between buying groceries or medication you need to review this chapter carefully. If you work, you need to investigate whether or not your state provides medical assistance for workers with disabilities (M.A.W.D.) by contacting your local welfare office. Not all states provide this desperately needed program. Many had them at one point but in time were cut back or simply discontinued.
Patient assistance programs are often available for certain individuals who are uninsured or have significantly limited health insurance. Reimbursement assistance is sometimes available for patients who
have health insurance and need help securing appropriate coverage. Since help can be limited in your state or simply in your personal situation, you might be eligible for help to get your medication through
a patient assistance program. When you receive medication from a P.A.P., you need to review your medication closely to be sure your prescription has been filled accurately.
Brand Name Medication, P.A.P. Provider, and Pharmaceutical Company:
Celontin myrxadvocate.com
Cephalon (866) 209-7589
Carbatrol Shire US Inc.
C Dainippon Pharmaceutical no P.A.P. data was found at time of
research.
Eisai Co., Ltd. (866) 694-2550
Please note the federal government provides the income poverty guidelines. Therefore, if you do not qualify for one company regarding your income you will probably not qualify for other companies. To review federal income poverty guidelines go to http://aspe.hhs/. gov/poverty/index.shtml Rarely companies determine their own income guidelines instead of using the federal government’s. Although eligibility differs from program to program, they all have three universal criteria which include proof of income, lack of prescription insurance, and United States citizenship.
Websites and Resources:
American Epilepsy Society Education Program
aesnet.org
Antiepileptic Drug Pregnancy Registry
aedpregnancyregristry.org
888-AED-AED4 (888-233-2334)
Fax: 617-724-8307
Assistive Technology Foundation
888-744-1938
They will search their data base to find organizations that may be able to help you with your specific needs. (helmets, assistance dogs, etc.)
Epilepsy Foundation
National No. 800-332-1000
epilepsyfoundation.org
Epilepsy U.S.A. Magazine
To subscribe, epilepsyfoundation.org (click subscriptions)
Family Caregiver Alliance/National Center on Care Giving
info@caregiver.org
caregiver.org
415-434-3388
800-445-8106
Epileptologist Registry
aesnet.org/go/find-a-dr/epilepsy-foundation
American Epilepsy Society Education Program
aesnet.org
Antiepileptic Drug Pregnancy Registry
aedpregnancyregristry.org
888-AED-AED4 (888-233-2334)
Fax: 617-724-8307
Assistive Technology Foundation
888-744-1938
They will search their data base to find organizations that may be able to help you with your specific needs. (helmets, assistance dogs, etc.)
Epilepsy Foundation
National No. 800-332-1000
epilepsyfoundation.org
Epilepsy U.S.A. Magazine
To subscribe, epilepsyfoundation.org (click subscriptions)
Family Caregiver Alliance/National Center on Care Giving
info@caregiver.org
caregiver.org
415-434-3388
800-445-8106
Epileptologist Registry
aesnet.org/go/find-a-dr/epilepsy-foundation
Glossary:
Adjunct therapy (add on therapy) Additional treatment used together with the main treatment to make that treatment work even better.
Anticonvulsant Medication used to control or prevent seizures either acutely or chronically. Not synonymous with antiepileptic drug.
Antiepileptic drug, procedure, diet or other substance used to prevent or stop seizures or convulsions.
Aphasia Defect in or loss of the ability to express oneself using speech, writing or signs or to comprehend spoken or written language as a result of injury or disease of the brain’s speech centers.
Apnea Stop breathing.
Ataxia inability to coordinate muscle movement caused by neurological impairment
Idiopathic epilepsy seizures for which there is no known cause; also called primary, inherited, genetic or true epilepsy
Incision cutting into, cut made into an organ or tissue
Interictal time period between seizures
Intractable not responding to treatment
Kindling is a theory that not all neurologists agree on. It means the brain “learns” to seize by seizing
The following are examples of sections within the glossary:
Terminology Breakdown:
The following prefixes and suffixes are more likely to be used in the world of epilepsy. Attempt to learn the prefixes (beginning of the word) and suffixes (end of the word.) If you come across words “on the spot” that are in a “different language” you will be able to decipher the word to at least have a basic understanding of its meaning. Learning terminology provides you with a great advantage to understand the mumbo jumbo of medical language!
Prefixes:
a, an = no, not
cephal = head
neuro = nervous system
path = disease
peri = surrounding
neuro = nervous system
path = disease
peri = surrounding
Suffixes:
algia = pain
clonic = rapidly alternating muscular contracting and relaxing
ectomy = surgical removal of part or all
“Initially” Important!
AED = anti-epileptic drug
AEEG = ambulatory e.e.g.
CNS = central nervous system
DBS = deep brain stimulator
Prescription Breakdown
bid = twice daily
tid = three times daily
qid = four times daily
Adjunct therapy (add on therapy) Additional treatment used together with the main treatment to make that treatment work even better.
Anticonvulsant Medication used to control or prevent seizures either acutely or chronically. Not synonymous with antiepileptic drug.
Antiepileptic drug, procedure, diet or other substance used to prevent or stop seizures or convulsions.
Aphasia Defect in or loss of the ability to express oneself using speech, writing or signs or to comprehend spoken or written language as a result of injury or disease of the brain’s speech centers.
Apnea Stop breathing.
Ataxia inability to coordinate muscle movement caused by neurological impairment
Idiopathic epilepsy seizures for which there is no known cause; also called primary, inherited, genetic or true epilepsy
Incision cutting into, cut made into an organ or tissue
Interictal time period between seizures
Intractable not responding to treatment
Kindling is a theory that not all neurologists agree on. It means the brain “learns” to seize by seizing
The following are examples of sections within the glossary:
Terminology Breakdown:
The following prefixes and suffixes are more likely to be used in the world of epilepsy. Attempt to learn the prefixes (beginning of the word) and suffixes (end of the word.) If you come across words “on the spot” that are in a “different language” you will be able to decipher the word to at least have a basic understanding of its meaning. Learning terminology provides you with a great advantage to understand the mumbo jumbo of medical language!
Prefixes:
a, an = no, not
cephal = head
neuro = nervous system
path = disease
peri = surrounding
neuro = nervous system
path = disease
peri = surrounding
Suffixes:
algia = pain
clonic = rapidly alternating muscular contracting and relaxing
ectomy = surgical removal of part or all
“Initially” Important!
AED = anti-epileptic drug
AEEG = ambulatory e.e.g.
CNS = central nervous system
DBS = deep brain stimulator
Prescription Breakdown
bid = twice daily
tid = three times daily
qid = four times daily
Tests:
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