What happens when we have a seizure? We lose control of our bodies. This is what happens to someone every time a person has a seizure. Such a person has no way to stop the seizures, is unable to stand up, to speak or once the seizure is over, to remember what happened. Imagine trying to get through life having to live with the constant fear of when and where your next seizure will occur.

 

Having to cope each day with these unsettling emotions is tough. Emotions such as fear, anxiety, and anger build up inside until you cannot deal with them any longer. Many people with epilepsy feel as though they are alone. They feel they are trying to battle the disorder all by themselves. People, who do not have the disorder, ask me “How can they feel they are battling epilepsy alone when they have doctors, family and friends to comfort them?” To live with the disorder, one needs to communicate with people who have the same disorder. It gives you the opportunity to open your heart and share your unsettled emotions about how it feels to have epilepsy.

 

One way of doing this is to subscribe to Epilepsy USA.  The Epilepsy Foundation writes this magazine. They send it to you every two months once you become a member. The magazine informs you about

what is going on with epilepsy. It has a section where it lists addresses of others with epilepsy that are looking for pen pals. The magazine also tells you about different events around the states that are constantly going on that you can participate in. For information, you can write to the main Epilepsy Foundation in Maryland.

 

The address is:

4351 Garden City Drive

Landover, MD 20785

 

If you do not already subscribe to this magazine, I strongly suggest that you begin to. It is one way to help give yourself encouragement so you can focus on your life and look at epilepsy in a positive way.

 

This is important because one can easily become depressed focusing on the negative aspects of epilepsy and wallowing in self-pity. This is why support from other individuals who suffer from the same disorder is so important. Understanding what someone with the disorder goes through is difficult, if you do not experience it yourself.

 

People with epilepsy from the United States and Canada have written the letters in this book. Their stories will help you understand that you are not alone and do not have to battle this disorder all by yourself. Many people with epilepsy struggle just the same as you do, but refuse to let the disorder control them. They have learned to enjoy life by making the best of what God has given them.

 

After reading these letters, your outlook on having epilepsy will begin to change and you will begin to view epilepsy more positively. They will comfort you. Others understand what you are going through and want to fight this battle by your side.

 

It amazed me to find that so many of the people who wrote me struggled with similar problems when it came to dealing with epilepsy.

Growing up I always felt that I had to prove I was the same as everyone one else. I should have realized from the beginning that I was no different. Many people in the world struggle daily to live a normal life in a society where people can sometimes be very cruel.

 

I hope these letters will be an inspiration and help you to realize that you are not alone. I hope you enjoy these letters and I hope they will help you as much as they have helped me.

 

Dear Stacey,

 

Hi! I received your letter today, and I was glad to get it. It sounds like you are taking care of yourself well. It is somewhat hard for me to think of babies because I am afraid that something bad would happen to the baby or me or to both of us. You seem healthy. I know the good Lord will take care of you and your baby.

 

I hope that this will cure my fear of having babies, when I see you and your bouncing joy, hand in hand or arm in arm. Depending on how you want to look it. It is great that you can stand on your own two feet, Stacey. Stacey, you have the talent to get other people started, too. Your writing is very powerful. Never forget that.  

 

 

 

I am finally able to stand on my own two feet with the medicine Pazil. It is an antidepressant. First, the Epilepsy Foundation is a brilliant place to go for people with epilepsy. They could find out what was wrong with me. I needed to get a sense of responsibility back. I am a more organized person. I get along better with people and even get a lot done in a day.

 

Praises are to God. I lost 49 lbs., and my heaviest was 205 lbs. Now I am down to 156, and I would like to get down to 130-135 lbs. The Neurontin I am taking is 1200 mg. Last week I had many seizures. I went to my doctor Monday. My doctor thought it was the bad news I received the previous Tuesday. I applied for a full-time job at a light factory. It would have been a great job for me. Unfortunately, they wrote me a letter stating that they filled the position. Therefore, I have to try harder next time. I know that someone out there has to give me a job. I have really come a long way. My husband and I could go over to my friend’s house and spend the day with her, and then we took her to group at the Epilepsy Foundation. There was a movie that night.

 

Take Care and God Bless,

Have a Great Day!!!!

 

I think the lovely woman who has epilepsy was able to turn her life around with the help of others. The Epilepsy Foundation helped her move on with her life. She was able to communicate with other people with epilepsy through the Epilepsy Foundation. The people she met through the Foundation filled her heart with hope and happiness. The Foundation made living with epilepsy much easier.

 

 

Dear Stacey,

 

Hello. How are things going? I am doing fine here in Grove City. Thank you for your uplifting letter and your article. You seem like a kind, loving person yourself. I come from a family of loving people. We are taught young in life to take care of ourselves and help each other. My parents not only taught, but also showed the way.

 

I am in the middle of eight brothers and sisters (five brothers and three sisters). I was born in 1953. I am right in the middle. My oldest sister died in 1963. She had a rare disorder that caused her major organs to age rapidly. My brother and I had rheumatic fever. I was five at the time. I learned how precious life is and how easily it can be taken away.

 

We were poor. Although my father had a good job, there were eight kids. We learned to depend on each other and to trust each other. Oh, we had our misunderstandings with each other. My oldest brother is one of my best friends in the world.

 

Well, so much for my family history. By the way I am the second oldest of the boys. All of my sisters were older. In 1989, I was walking home from work (about 1 mile), the temperature outside was thirty.  The first day of winter.

I arrived at my trailer, and I took my glove off my left hand. The next thing I know a cop (a good friend) was calling out to me, he was aware of my seizures. My hands were so cold, even the one with the glove on it. I was shivering.

 

 

Suddenly a squad came into the lot and over to me. I have never been that cold before. I had fallen from my seizures. (That is usual; I fall backwards and to the left a little when I have a seizure). Before I regained my awareness I got up and started walking, unaware of what was happening (also, usual). I walked into the trailer, hit my head and passed out. I was lying in the snow and as I said, it was 30 degrees for a half hour or forty-five minutes.

 

 They got me on the stretcher and started putting hot water bottles around me. They took my temperature. I heard one person say “Going into hyperthermia. His is below critical.” The next day I woke up in a hospital. The knuckle on my left hand (the one unclosed) was aching badly. Soon after the doctor came into the room with bad news and good news to tell me. Oh no! I thought. He said, “First the bad news: you have first degree frostbite.” I braced myself for the next sentence. “The good news: you get to keep your fingers.” I was so happy and relieved that tears were running down my face. First-degree frostbite is the mildest form of frostbite.

 

Now, it is still something I have to deal with. Yet I will exchange it for my fingers any time! I really do not like to tell these stories and do not want people to feel sorrow or pity for me. Hey, I have had seizures for going on a quarter of a century. I take care of myself. I am very independent.

 

For sure, I do not suffer as much as many other people with epilepsy. I am truly one of the lucky ones. I have had thousands of seizures over the years and I am here telling you about some. How many can say they never lost the ability to take care of themselves?

 

Keep up the faith and live the good life.

 

P.S. My dad had a saying about life; nobody gets out of this alive. He is right; we live life as full as we can. One Day at a Time! I learned from this letter that support from others can be very crucial in overcoming any obstacle from epilepsy that comes our way. Inner strength is something we need to overcome epilepsy. In addition, you can develop inner strength through support and love from the people who mean the most to us in life and who understand what we are going through. You need to take into consideration that  inner strength does not happen overnight, so be patient and live life “One Day at A Time!”

Dear Stacey,

 

Hi, I am forty-nine years old. When I first started having seizures, I had no aura, so I did not know when these seizures were about to happen. People were horrified when I had a seizure. They scattered as if they thought it was contagious. They never realized how much hurt and fear inside me was beyond their knowledge! When one of these seizures hit me, there was nothing I could do, but go through it. Not many people understand that even today! Sometimes when I am having a seizure, I can feel the blood because my head would hit the ground so hard like a 10-pound sledgehammer in full swing!

 

Stacey, the only way to get better is by God and your medicine in that order. You need to put your faith first. I believe if it were not for God that I would not be writing this letter today. I would be dead! I also believe that you need to think positively in this life. You should always look forward and never look backwards, tomorrow is another day.

 

I am fine for right now. I had two seizures in the chiropractor’s office and four coming home, which knocked me down each time. Nevertheless, being “mule-headed” I got right back up! Until the last, one knocked a hole in my elbow and I had to get a couple of stitches. I had to take a ride in the ambulance, which I really did not want to do.

 

I have had seizures for twenty-nine years. The medicine that I take is Depakene, Neurontin and Dilantin. Neurontin has been the best medicine that I ever took.

 

I believe this man did not let epilepsy control his life. He used God to help him develop his inner strength and to look at his life in a positive way. In order to develop inner strength, you need to have a clear mind so you can set productive goals for your life. You need to reach out for help. You cannot win this fight with epilepsy by yourself.

 

Dear Stacey,

 

Congratulations on your pregnancy! I am so happy for you; you must be thrilled! I was not on any medications during my two pregnancies, only because I did not know that I was having seizures. I never dreamed that I had epilepsy. My seizures started the month I turned twenty-six years old. (July 1980), when I first became pregnant with my first child, (my daughter).

 

During both my pregnancies, I felt great, I worked all the time and I was very happy. The only “black cloud,” were the awful “spells” that I was having. I did not know that I was having seizures until one year after my second child, (my son), five years after my first “spell!”

 

They diagnosed me with simple-partial seizures, which eventually worsened to become complex-partial seizures. Twice I suffered status epilepticus resulting in generalized seizures, which required hospitalization.

 

I am still in school (Henry Ford Community College, Dearborn, Michigan). Last semester I had two (kind of) tough classes, but I loved them. Pathophysiology and Pharmacology and I was proud of my grades, B and A, respectively. This semester I have only one class, Medical Computer Information Systems, but I am finding this one class more difficult than last semester’s two classes combined.

 

I am hoping to take a spring and summer class. I have switched from medical transcription (a certificate), to Medical Information Technology (an associate’s degree). Therefore, I will have a better degree!

 

Take care, God Bless,

 

I believe this woman did not let epilepsy control her. She was blessed with two healthy children and is working on her college degree. You do not have to stop living just because you have epilepsy. She focused on her goals and looked positively at life. This is what you need to do.

 

Dear Stacey,

 

I am twenty-nine years old. I have had seizures for almost ten years now. My general experience with epilepsy has been interesting. When I first had the seizures, my family was completely shocked, including my grandmother who has since passed away. Nobody ever knew what caused me to have the seizures and they still do not know. There were tons of tests done and nothing came out of it. My experience with epilepsy was a painful one. My seizures came about very suddenly. At first, the neurologist put me on Dilantin. Bad move. Why? Because it caused my gums to swell like balloons. That required some surgery. Everyone in my family thought I would die of these seizures. After each one, I had become very light headed for a brief period.

 

When I was working, my co-workers were supportive of me. The same holds true for both my family and friends. My grandmother was alive at the time that I had the first seizures. She was supportive of me. She even came to the hospital to see how I was doing. She was like that until about two months before she passed away. This was three years ago. After that, her health failed rapidly. Any time I did not feel too good after having the seizures, all I had to do was call her. She would make me feel much stronger. I feel that living with epilepsy is easy!! With the combination of both my family and friends, and the fact that I take my medication religiously on time every day, my life is extremely easy! My family and friends continue to support me while I have epilepsy. You definitely have to think positively and forget the past! Think about your future!

I like bike riding, miniature golf, walking and flea markets, garage sales, archery and of course, shopping! I also collect Sylvester the cat stuff. My collection is big and it continues to grow. I am a 70’s music fan, and love music from the 80’s and 90’s as well. I am also an Elvis fan, a Beatles fan, and a U2 fanatic.

 

I think this young woman used support from her family and friends to help her gain a sense of inner strength. She did not fall into depression because she focused on her goals and interests. She also looked at life positively by not focusing on her past. She focused on the good things in her future.

 

Dear Stacey,

 

I often read the letters in Epilepsy USA, so I have found yours quite interesting. I found growing up what they finally diagnosed as psychomotor epilepsy rather than petite-mal.

 

I had removal of 2/3 of the right temporal lobe and graduated in 1958. Try explaining that to those many people who through the years looked at me as though (and thought) the devil possessed me or else I was a witch! People kept children in some cases from playing with me.

 

I could not really understand what was happening to me or why. It was not something that we discussed outside the family either.

 

In fact, to the day she died last year, my mother was horrified that I should tell my friends I had epilepsy! After all, what would her friends think?

 

I went off to college to major in agriculture. I found out that due to surgery my seizures were less. Nevertheless, the people with whom I was in contact accepted my epilepsy and my social life was great.

 

I am convinced students away for college drop the fear of their parents! Bosses, friends and, of course, my husband accept my epilepsy-that is the way it has gone.

 

I believe this woman had difficultly growing up with epilepsy because not until recently was epilepsy brought out into the open. Many people did not know what seizures were and when they saw someone go into a convulsion they did not know to react. People with epilepsy were looked at strangely and were singled out. This strong young woman did not let her past affect her. She went on with her life and got a college degree. She met friends who accepted her epilepsy. She got married and created a family for herself. She reached out for help through medical attention and the magazine Epilepsy USA.

 

Dear Stacey,

 

I have simple partial seizures. Sometimes they are borderline complex partial. Medication has not totally controlled my seizures and I am not a candidate for epilepsy surgery. My medication reduces my seizures from fifty to sixty seizures a day to seven to twelve a day. I had my first seizure at age forty-two. I am now age forty-seven. The doctors do not know why my seizures began. I have had many tests, but no answers. I still hope one-day new research will produce a new medicine that will give me freedom from seizures.

 

I face the challenge of dealing with my epilepsy in many ways. Number one is through prayer. Secondly, I use every chance to educate someone about the subject of epilepsy or seizures. I often find out that many people are surprised that I do not fall onto the floor or violently shake when I have a seizure. They are not aware that there is more than one type of epilepsy. They wrote me once up in a newspaper article for our local paper and I was featured in an article about epilepsy for Women’s Day magazine. Epilepsy still unfortunately, has many stigmas and until we can talk about it freely and educate the public, many of those stigmas will remain. A doctor or counselor can talk about it all day. You and I are the people who live with it and should explain to the public what it really feels like.

 

 

I believe this person has also realized that epilepsy is beginning to come out into the open, but there is still a lot of work to be done in educating the public on epilepsy. When I read this letter, I felt very proud of her because she used what she had to help others. She reached out so others could understand what the disorder is. By following her goals and dreams, she was able to pursue her life and not let epilepsy stand in her way.

 

Dear Stacey,

 

My seizures began around my 25th birthday. I had just become pregnant with my first child, (I have two children, my daughter Candice, sixteen years old, and my son Chad, thirteen years old. I have continued to work throughout and have raised my children, while I was living and dealing with epilepsy. My seizures were simple partial. During my years with epilepsy, I have had three generalized (grand-mal) seizures. One of those times resulted in an episode of status-epilepticus, which I am sure you are aware can be life threatening without hospitalization. Along with epilepsy, they diagnosed and treated me for panic attack disorder. I have my own theory about the connection between seizures and panic attacks. However, I hated what the seizures did to me (and my family) and the ways they made me feel, I was not afraid of them. I still experience a form of panic attack, but the logical reasoning behind them is that it happens when I am subjected to large crowds of people (I feel suffocated). This type of anxiety is very different (and feels different) from what I had when I was having seizures. (They worsened with my cycle and my pregnancies. Being a woman, you are probably very aware of the effect hormones can play on seizures.)

 

I have a recent pen pal who experiences the same anxiety with her seizure disorder that I did. At the time of my surgery, I was thirty-eight years old. My children were eight and eleven years old. They had a lot to deal with. I am forty-three years old (and proud of it), and last year, after being out of school for twenty-four years, I went to college! I love it! I just turned forty-three on July 3 and my son (who has the same birthday) turned thirteen! I have two teenagers! Am I nuts?  ! Oh yes, I am going for my certificate in Medical Transcription. Did I mention that I had continued to work, and had worked (starting after high school) for physicians, doing their billing and typing their narrative reports? They retired in 1994, and I went on to work for a pharmacist.

 

I prayed for, and received, the courage to go through with the surgery and to be able to reassure my family, as they were wheeling me into the operating room. Yes, I would do it again, you bet. During the almost five years since my surgery I have had only one seizure and that was when I was off all medicines, and had been for nine months. Therefore, I am back on my medicines, seizure-free again. I take only Dilantin 100mg for the seizure-control.

 

Two in the morning and two at bedtime.  Epilepsy?  I am not sick, are you? Of course not. We are nice people who have lived with epilepsy. I suppose people are afraid are afraid of the disorder. I did not have fits. I had seizures. The only fits I had, have been when I have been mad about something, I have been known to have a temper or when one doctor (intern, I think) asked me about my “fits.”

I believe this woman has had a lot to deal with, but through the help of prayer and three healthy children, she was able to receive the support and love she needed to go on with her life. She continued working. She developed productive goals that would make her feel good about herself. She did not use epilepsy as a crutch. She went on with her life.

 

Dear Stacey,

 

Hi! I am twenty-five years old. I am married and have two children. I have a six-year-old named David Cody and a one and a half-year-old girl named Morgan Elizabeth.

 

David had been sick for a couple of days with a cold. I remember we had a couple of feet of snow that night in January. Two of my girlfriends were visiting and we were all sitting around talking. My husband was holding David over his shoulder. I just happened to glance over at David and his eyes were rolled up in his head. I screamed to my husband, “There is something wrong with David!” At that point his whole body limbed” like a rag doll. I laid him down on the floor to see if he was breathing. I could not see his chest moving, so I started to give him CPR. I knew nothing about the seizures at the time. I remember then picking David up in my arms and his little body just laying there limp. I thought he was dead!

 

The ambulance got there finally and rushed him to Union Hospital, in Maryland. A little while after we got to the hospital, we found out that he had a febrile seizure. These are quite common for children his age I was glad to hear that! During the next two years, he had three more Febrile seizures, which was not too bad.

 

A couple of months after he turned three years old, he started having seizures for no reason. The first time it happened, we rushed him to Dupont Children’s Hospital in Delaware. David had already had two at home. Then while the doctor was checking him out, he had another one

 

therefore, the doctor gave him Tegretol rectally. They kept David in the hospital for about four days to make sure his seizures were under control. It was a very scary time for us.

 

For the next year, he did well and his neurologist saw him every three months. After about a year, he started having them again, so they increased his dosage again to four teaspoons a day. This went on until he was on six teaspoons a day and he started to get into the toxic range to the point where he was totally zoned out, tired. He lost interest in almost everything and could not function.

 

Preschool was horrible. Even after being on six teaspoons a day, he was still having seizures, so his doctor put him on Depakote. The doctor weaned him off the Tegretol. At this point, we were very frustrated. We felt like all we could do was sit back and watch him suffer from the side effects of the medications he was taking. At five years old, my son’s mentality was delayed. At birth, they found that David’s corpus callosum was thinner then a normal child’s.

 

The corpus callosum is one of the most striking features of the brain. Each hemisphere is independently capable of processing and storing information. In humans and other mammals, the corpus callosum is the main pathway of interhemispheric communication. The corpus callosum is the largest fiber tract in the human brain, containing more than 200 million nerve fibers.

 

Ronald Myers and Roger Sperry demonstrated its critical role in the 1950s, when they showed (in cats) that information reaching one-half of the brain was unavailable to the other half when the callosum was absent.

 

In the 1960s in Sperry’s laboratory, Joseph Bogen and Peter Vogel cut the callosum in a group of patients with epilepsy in an effort to control their otherwise unmanageable seizures. The psychological follow-up of the patients by Michael Gazzaniga, Sperry, and Bogen confirmed the earlier mal studies. Studies of the left and right hemispheres in human beings have revealed the psychological uniqueness of the separate hemispheres.

 

The left hemisphere is normally dominant for language functions. The right one seems to be better equipped for handling spatial and other nonverbal relations. Such observations have led to theories suggesting hemispheric specialization through evolution. For example, investigators such as Gazzaniga and Joseph LeDoux suggest that human hemispheric differences can be accounted for in terms of the evolutionary acquisition of language by one hemisphere. The other hemisphere continues to process information essentially, as it did in prehumans. The superior performance of the right hemisphere on certain nonverbal tests would then be attributable to the sacrifice of nonverbal processing efficiency by the left hemisphere because of having acquired language.

 

Research shows that double consciousness exists in split-brain patients. Perhaps a fully integrated consciousness does not develop until a child is several years old. Research shows that the fibers of the corpus callosum do not begin to mature until one year after birth, and that the process continues until the age of ten or older. The corpus callosum has also been found to be about 11% larger in left-handed and ambidextrous than in right-handed people.

 

David also had other problems with his reflexes, and he had six toes on each foot. Three toes on each foot are webbed together and his two middle fingers on his left hand were webbed together. He had surgery on his fingers in January, to separate them. It was very successful. David has been going to a school that specializes in kids with special needs. He has been going there since he was ten months old. David’s fine and gross motor skills are at a four-year old level. His speech is at a three-year-old level.

 

 

At that point, in my son’s life, between the seizures and the medications, I started to look for alternatives to David’s problem. I was not quite satisfied with what the doctors had to offer my son. It seemed like it all revolved around drugs and that was the extent of it. Therefore, I went to one of my friend’s nutritionist, who firmly believes in the benefit of the Shaklee supplements.

 

These supplements are diet containing generous amounts of fresh vegetables, fruits, dairy products, and meat, which assures an adequate intake of vitamins and minerals, which my son had been lacking all along. Therefore, I sat and talked with her about all my concerns for David. She got very excited.

 

She said, “Marybeth, if you really get serious about rebuilding your son’s state of health, this means making sure he gets his food supplements every day and changes some of the things he eats in his diet.”

 

Naturally, I went home very excited. I started him on supplements right away, got rid of all my household cleaners, and replaced them with Shaklee Cleaners, which are all biodegradable and nonchemical. For the first thirty days, my son’s body went through a cleansing, because when you introduce organic foods and all those nutrients and minerals; the body will automatically eliminate toxins and start to heal. After about thirty to thirty-five days, boy, did I start to see drastic changes with David. On of the most vivid things was he had lots of energy, and he was not pale and washed out anymore. His cheeks became rosy and started to talk more and he was showing interest again in doing everyday things like going to the playground, swimming, and socializing with other kids. There was a major improvement in his health. He was always sick with something from the time he was one to five years old and taking antibiotics at least once a month. They hospitalized him at least twice a year with pneumonia or bronchitis. He was then of course having seizures. He was a very sick child!

 

 

 

It has been nine months since he has been on the Shaklee diet and has only been to the doctor for an ear infection once. At David’s school, his teachers were saying what an improvement David is making. They said that he stopped taking naps in class and his attention span was better. His concentration and balance showed major improvement! In as little as two months, my child went from being a very sickly, unhappy, tired and zoned out kid to being a child with energy. He is very healthy, he is alert and he has not had a seizure in over a year. He is on Depakote and we are still weaning him off the Tegretol. It is a very slow process. Let me tell you what we are currently giving David to supplement his diet:

 

 

 

EACH DAY

 

• Two tsp. a day of liquid tea (Panathonic Acid Biotin Riboxlauch Niacinvitamins A, D, B, B’s, Iron)
• Two glasses of Soy protein (very important in brain function and energy)Six EPA capsules (fish oil)
• 6 Lecithin Capsules (helps nervous system and brain function)
• 2 Formula I capsule (mixture of antioxidenenls and B’s that help boost the zinc selenium immune system vitamin C)4 GLA (essential fatty acid)
• Six chewable C 2 Bett Tacarotene (builds immune system and fights against cancer)
• Fiber Waters chewable-vitamin E 200 IU (The body’s natural broom.

 

It keeps the toxin out of the body.)This is what I give him every day. I just poke a hole in the capsules and squeeze them into the liquid tea and he drinks it down. The reason that I chose to give the Shaklee supplements to my son is that I know that they are safe. Shaklee is the only company that does clinical studies and scientific research on their product before they market them. Therefore, when I give Shaklee to David I know that he is getting the best out there!

 

I truly believe that they introduced me to Shaklee for a reason. It was definitely a work of God! I would really hate to think of the shape my son would be in now without the Shaklee products.

 

I feel like I have a mission here. Think about all the people out there stricken with epilepsy that not only have to deal with the seizures, but also have to deal with the side effects of the drugs!

 

This was a challenge, but I believe that God is in control of everything that happens in peoples lives. In know that my David is in Gods hands and God will take care of him better than anyone else will!

God does everything for a reason; we just have to have faith. We just have to have faith that there is a reason behind everything God does. When were going through bad times with David, I could have blamed

 

 

God, and said, “Why does this have to happen to our child?” Yet through it all, I have learned how to be thankful for the little things. It has made me a stronger person and has made my husband and me a lot closer and stronger together. Greatest of all, I feel that now I can be of great benefit to other parents who have children suffering from epilepsy.

 

I really believe that diet supplements and getting rid of chemicals in the home is vital to people suffering from epilepsy. David has shown amazing results!

 

I think everything happens for a reason. David’s parents can use this experience to help others. David’s parents used their faith in God to help them through this tough period in their lives. They did not give up hope and they used their inner strength to search for a solution to help their son’s seizure disorder. Diet supplements may not help everyone, but in this case, it was very helpful in David’s situation.

 

Another diet used to help children with epilepsy is called the ketogenic diet. Preliminary results from a multicenter study seem to indicate that it can be useful in controlling seizures of a percentage of children who had not been controlled with anticonvulsant medications. Approximately 33% of these children gain full control, and another 33% are able to get improved control and decrease their medications. Seizure type does not predict which child may benefit from the diet.

 

The other benefits of the ketogenic diet are mainly avoiding the side effects of anticonvulsants such as sedation or impaired thinking, as well as the cost savings. The downside to the diet is that it is very difficult to follow. The diet stipulates that for every 6 calories consumed, four must be from fats and the other two from both proteins and carbohydrates. It is

 

 

difficult for children to avoid carbohydrates. The serving portions must be carefully weighed and a dietician trained in the diet must oversee the diet. Further, the diet must be started with a 24 to 48-hour fast that is monitored while the child is hospitalized to prevent hypoglycemia.

 

Like anticonvulsants, the diet is not a cure, but merely another treatment mode for hard to control seizures.

 

Dear Stacey,

 

I am forty-four years old, and my first known seizure was at the age of twenty. At age five years, I had a high fever that caused convulsions. My older brother told me when he saw me have my first seizure that looked like when I was five years old and had convulsions. He was nine years old at the time.

 

I work at a grocery store. I do not drive and live alone. Therefore, I walk about 95% of the time. I do not want to drive. I worry about hurting or even killing somebody else.

 

On February 3, 1994, I went to my neurologist. I was using a new anti—convulsion medicine called Felbatol. I got a bad side effect from the medication so the doctor put me back on Tegretol. Later he added Neurontin to try to help control the seizures better.

 

During the change over, I had a seizure while walking to work. It was cold and snowing (I fall to the left slightly, then backwards with my seizures) I fell and landed in the snow and slid into the street under a car.

  

When I have seizures, I do not become mentally aware until five to ten minutes afterwards. I never remember any of my seizures. I pulled myself from under the car and kept going to work I heard people yelling for me to stay. They were asking, “Is your head all right?” I did not understand because I was still dazed from the seizure. About two or three minutes later, a police officer pulls over to the curb and walks over to me. He said, “Are you OK?” I said, “Yes”. He said, “Don’t you know where you were, being dragged down the street by a car? I said, “A car?” He said, “You did not know it, did you?” I said, “No sir.” I did know my hip area was starting to hurt and I felt I was walking funny. The police officer said, “Well, an ambulance is on the way.” I said, “I don’t have time, I have to get to work before 9:00 p.m... I also have to pick up my medicine before the pharmacy closes.” By the time, we were through the squad car arrived. They said, “Lie on this, so we can take you to the hospital.” I said, “No thanks,” and went on to work. I lasted about a half hour. Sitting, standing, and lying down; nothing would ease my pain.

 

While I was trying to work, the man who was driving the car noticed me. He was going to the store. He said, “Excuse me, sir.” I said, “Yes, sir.” He said, he was driving the car that took me down the street. My heart ached for him, I was stunned!

 

I said, “Please forgive me, but I just had one of my seizures. Do not worry, I think we both should feel lucky that it is just my hip and you did not run me over. I feel bad when others are involved this way. It does not seem fair.

 

This person was not doing anything wrong. We need to consider others who, by being in the wrong place at the wrong time are feeling, caring people and need help too.

 

Well, after about half an hour of work, I asked one of my coworkers to call a squad car. They did and I went to get medical attention. To this day, I still feel bad for the driver. My area between my waist and knees are a problem. Nevertheless, I still walk 95% of the time and work full time. I take no painkillers. I just go on.

 

 

I told you about my high fever, but that is not the source of the seizures (or not the main source). Sometime between 1953 and 1962, I had a hit on the head above the right eye; so hard that the retina right ripped and partially detached from the optic nerve. This may be one of the causes of my epilepsy. My right frontal lobe is where my seizures start. When the doctors looked in my right eye, they said they could do nothing because the detachment was not fresh enough. I started to fall on the left side first. I knew this because it is my left hip that is hurt from the falls 98% or more of the time. It was not until 1973 my first known seizure occurred.

 

My neurologist told me that I am not a candidate for surgery. It was not worth the risk because my seizures are under good control with medicine. I dropped from hundreds of seizures a year to two or three dozen. Therefore, I am close to seizure-free. I also have aura. My auras are scary. The taste in my mouth is terrible and my tummy feels like I have gas in it. I get goose bumps from head to my toes with the exemption of the very top of my head.

 

I think epilepsy has put quite a few obstacles in this man’s life, but as you can see he has not let having epilepsy get him down. He has focused on the positive aspects of his life and this has given him the strength that he needs to go on with his life. He has accepted that he has epilepsy and he knows epilepsy is a part of his life. This is why he is able to cope with his epilepsy.

 

Dear Stacey,

 

I am forty-five years old. I am presently living with my parents since my dad is in a wheelchair. My dad has diabetes. I help take care of him. I have petite-mal seizures and have been having seizures since I was sixteen months old. I have tried all kinds of medications, but none seems to work.

However, I am now trying the new drug called Topamax. I usually have a few seizures at the time of my menstrual period.

 

My parents and I have gone to support group meetings. They discuss new medicines and ways to control seizures. I enjoy the support group meetings and can meet other people who also have seizures.

 

I believe support group meeting are beneficial people who have epilepsy in their families. Many people find them informative and comforting.

 

Stacey,

 

The weather has been perfect for me to get out and get busy. The only downside is that I overdo the work or play and finds me with a head that feels like a sparkler on July 4. I noticed three things you said in your last letter that I can relate to:

 

1. Those without seizures do not understand completely. I use to tell my doctors, “I wish you could live one month with my symptoms Maybe then you be more sympathetic.” You are right! Family and friends listen, but they do not really understand! Only another person with the problem can fully understand what we go through. That is my big problem. People think I should be the “superman” I used to be. I cannot. They do not understand why. I try to keep going, but I am destroying my body. I have fallen so often during the last few years, it is a wonder I can still walk. I used to like to stay on the road, and do weekend trips. I know now, a 50mile trip will put me in bed for a day or two. I do not like my brain feeling like oatmeal, sparking, or feeling like it is spinning in six different directions, in addition to all the other symptoms. I do not like feeling bad, so I am avoiding things that hurt me. People do not understand.

 

1. You mention about what is “Normal.” I have had doctors ask me if I feel normal after taking a different medication. I replied, “What is normal? What is normal for you surely is not normal for me.” Stacey, I thought I was normal for twenty-eight years. You know why you have seizures, and I do not. I guess the only difference is that you are not in the dark and you knew you had a problem since youth.

 

1. Mind over matter…when I was much younger and into the martial arts, I learned a great deal about mind over matter. I could direct pain out of my body by focusing on something else. I used to be able to obtain an 8-hour sleep in five minutes. (Sounds goofy, but it works.) I know all about mind over matter, but when the mind does not function right, you cannot control anything. When my brain shorts out, I am done. No control, I am at the mercy of what happens next. I have tried to control the seizures. I have not been able to, so far, any more than the medication controls it. I will not give up. I still do more than I should, but that is me. I never give up. I do not like having no control of my thoughts. Sometimes I have no thoughts at all. I also experience temporarily and short term memory loss. This started five to seven years ago. This is not good either. I feel like you have a good handle on life. You make the most out of life that you can. I wasted too many years, trying to deny my problem, then being depressed. I am now trying to figure what the future holds for me.

 

I am stubborn, I will not give up and I keep Jesus in my heart. It did not matter how tough it was; when my life did a one hundred and eighty degree turn, he was the only one who understood. He was the only one that was there when I needed someone the most.

 

 

I believe this person is still struggling with epilepsy, but with the help of religion and by reaching out to other person, she has begun to see the brighter side of life. She has opened her heart and her mind and has begun to listen to what other people with epilepsy have to say. She realizes that she is not the only one who feels the way she does.

 

Dear Stacey,

I am a 66-year-young female. I was first diagnosed to have some form of epilepsy at the age of forty-seven. This was very shocking to me.

 

I saw a neurologist who then diagnosed me as having psychomotor seizures or complex partial seizures. I have been on many medications; Dilantin, Phenobarbital, Mysoline, just to name a few, and have seen many neurologists. I went through all the side effects and the medication did not help.

 

I have been on Tegretol for seven years and thank God, I do not have any side effects. It seems to agree with me, although my seizures are not under complete control. Of course, I do not know what it is doing to my inside. Time alone will tell. I really do not like changing medications, because of all the side effects.

 

I have to agree with you when you say friends and family members assume that whenever something is happening to you it is because of the epilepsy. It drives me crazy. They immediately say, “Did you take your medicine?”

 

When they told me originally I was epileptic, I cried for days. My family could not understand why it was so upsetting to me. When I look back, I can only say that I was ignorant about epilepsy. I thought of this as a horrible curse coming over me and did not understand that there were all types of seizures. My family and friends accepted me for who I was and never let it interfere with our relationship. They were and still are very caring.

After a long while, I finally accepted that I am epileptic and live as normal a life as I can. Yet I realize that there is nothing I can do to change that, so I do not think about it any more. I worked in the telephone company for thirty-seven years before retiring in 1985. The last six years were difficult. I could not drive anymore and it was tiring getting back and forth to work. Again, my friends came through most of the time.

 

I was driving for years. I had a motor vehicle accident in 1979 and hit a police car! I did not wait for my license to be taken away; I gave it up myself. Years later, I began to drive again. I had a second accident after having a year free of seizures in 1983. This convinced me that I would never drive again. It is very discouraging at times because I live alone. I use to feel sorry for myself, but that is all over now. My friends, family and neighbors help with the transportation. I also use public transportation, when necessary.

 

Before they diagnosed me with seizures I always remember feeling very strange on and off, but it was my stomach that bothered my intestines or me.

 

Whenever I would tell the doctor he would say, “It is your nerves.” Don’t you love it? Always your nerves. Nevertheless, my mother would always look at me and say, “Are you having a problem with your stomach?” Because she said, I always looked a little strange for just a few seconds. This went on for years. My sister said I was being very rude and just ignoring people.

 

I do not know when I am getting a seizure and I do not know that I have had one, unless they tell me.  They last anywhere from thirty seconds to two or three minutes. I get very tired after having one. I sometimes get up and walk around or just stare. I do not feel sick, just tired. I live a normal life and my friends are aware of my problem, so I am not afraid to get involved in projects etc.

 

When they diagnosed me, I was married, but my husband could not accept the fact that I was epileptic so we went our separate ways. I have been alone since 1981. As much as I have accepted the fact that I cannot drive again, it is the only thing that really frustrates me. I love to drive.

 

 

I find myself at times feeling very angry because the medicines could not get my seizures under control. I read and talk to many people who have different types of epilepsy and they are under complete control. Most of them are grand-mal, which is a lot worse than mine is.

 

I often wonder why we have so many organizations and celebrities who donate time and money to help find a cure for AIDS, but it seems people have forgotten epileptics. I wonder how others feel about this?

 

I think there many issues in this letter that I can relate to personally and I am sure others can too. I have learned from this letter that many individuals do not realize how lucky they are until certain things become impossible for them due to epilepsy. I did not realize how lucky I was to be able to drive until I had to give up my license because of my seizures. Luckily, there were no major injuries due to the car accident she was involved in. It is better not to drive at all if you are going to put your life or others at risk. When my license was taken away, I had to look for other ways of transportation. Nevertheless, the way to deal with this problem is to accept that you have epilepsy and include it into to your life.

 

You cannot put yourself in denial. You must accept your epilepsy and be grateful for what God has given you. In our world full of billions of people, I guarantee there is someone out there worse off then we are. In addition, this letter teaches us that because so many people are not educated on epilepsy people tend to think that every time you may not feel well it is because of your epilepsy. This can be frustrating to someone with epilepsy. This is why we all should take time out from our daily schedule to try to help others understand epilepsy. Finally yet importantly, remember that if anyone in our lives does not want to accept us for who we are then they do not deserve to have us in their lives.

 

 

Dear Stacey,

 

My husband and I have a newspaper route. It is seven days a week. It makes me feel good about myself. My old self is back! My friend gave me her support. That really did a great job for my self-esteem. Now I feel like I can CONQUER THE WORLD!

 

I am on Neurontin too for my epilepsy. I see circles at times and I did have a seizure or two. I called my doctor, and he made me increase the Neurontin. That darn epilepsy will always be in my life. Nevertheless, I cannot harp on this. I feel too good about myself.

 God Bless,

 

I believe epilepsy can lower your self-esteem if you let it. This is why you must get out into the world and do things that make you feel good and proud of yourself. Remember in order to help the people around you that you care about, you must first help yourself.

 

Dear Stacey,

 

Busy, Busy, Busy! I am trying to find a little time for myself. My daughter is tracking scholarship information and I am working on college financial aid for her. My husband can always find oodles of things for me to do for him.

 

So naturally, with the holidays and shopping on everyone schedule. I am bonkers since I cannot drive now. You should see me walking the stress off. I exercise like a “wild woman!”

 

I loved your article. How inspiring! I have shared it with some people I know will appreciate it and benefit from it. You are now one of my heroes!

I wish more people would share their experiences. We need to know how others have felt the same feelings. We have and you know others need to read about it too.

 

I believe this letter shows the importance of reaching out to others and how it can help change the lives of others who have epilepsy.

 

Dear Stacey,

 

I went to Riverside, California. To meet the love of my life. After traveling thirty-six hours on the bus, it was love at first sight for me. We had such a nice time together in California. I really did like it there. Nothing else mattered.

 

I do not think that I have ever worked as hard in my whole life as I did to get to California. Then something came over this bachelor. The wind was light. It was blowing through the palm trees and the smell of different flowers was in the air. As I turned to her and asked her, “Will you marry me?” The look that came over her face was one of great joy. She said, “Well-let me think about it O.K.?” I thought to myself, she would give me a week or so at least to discuss it with her mother. However, I was wrong. She turned to me and said, “Yes.” I almost fell like a big oak tree. She asked me if I were all right. I told her yes, just a little “all shook up.”

 

We did not have an engagement ring. Therefore, she looked through her jewelry box and found this old ring, which we went and had polished. This ring was so pretty that neither one of us believed it. It was a ruby with pink flowers on all four sides. Now after forty-nine years I finally face the situation.

 

After we had such a great time, then, bad luck hits. At 12:03 p.m. The following morning I went to the rest room and afterwards a second later I was thrown against a wall. Somehow, I had suffered a bad injury to my right foot. I elevated my foot and then went into several other continuous seizures. When I could get some medicine that my fiancée administered, the seizures than stopped. At six o’clock the next morning, I was looking at my foot and I knew that I had to go to the hospital.

 

The doctor at the hospital told me that I just had a bad sprain and put a splint on the foot. It was tight though; after riding a bus for thirty-six hours, my fiancée and I finally got home and then, we went to the ER.

 

This time they threw away and replaced the splint with a new splint that would allow for the swelling. After taking X-rays, the next morning, I went to my doctor. The doctor told me that I had torn ligaments and had a fractured ankle. The doctor put a fiberglass cast on my right foot up to my calf muscle.

 

My family likes my fiancée very much, and her friends liked me. I do think that this all means that I have found my partner for life. Epilepsy wise, I have been having five to eight seizures a month, but I am built tough. I hope! Stacey, everyone has his or her difficulties, because we are all human. I am proud of you for getting off that medicine. I had always had faith in you as a friend and am always your “cheerleader.” It will happen, if you believe in the Lord and let him show you the way. Trust me,

I had a rough trail, but without the Lord I would have had never made it. The words “give up” are not words as they are thought. One must think positively when preparing to face the black knight called epilepsy. Because when you look at epilepsy negatively, it will end up controlling your life.

 

I believe this man’s letter is very inspiring. He shows that you can have a happy life living with epilepsy. He is able to live a productive and happy life because he does not look at his disorder negatively.

 

 

 

 

Dear Stacey,

 

Hi! How are you? I am doing OK for now, but October has been a terrible month for me. I took something called Cholestin, an herbal for high cholesterol. I did not think it would harm me, but boy did it ever. I

 

34 • Epilepsy You’re Not Alone

 

took a dose, and the next morning I started having many seizures. I had about eighty seizures in two days and the left half my face got numb and I lost the ability to talk. That was a reaction to the drug, but it also caused a severe gall bladder attack. I spent four days in the ICU and one day in a regular room at the hospital, then one day for laser surgery at another hospital. They moved my gall bladder and found more than forty gallstones. Now I know that the abdominal pain I had over the past year was my gall bladder! I had no idea. Now I am doing OK and other than two to three seizures a week, I am feeling better.

I enjoyed the article you sent and thank you for it! It was very interesting. I tried those research medications and many others, too.

 

Sometimes I felt like a drunk and other times the medication would make me wonder if I were crazy because I would have weird thoughts and do strange things. Still, most of the time when I took Tegretol I was like in a shell, having panic attacks just about every time I left the house. Yet a lot has changed since they put me on Klonopin (Clonazepam) and Neurontin.

 

You are right about how hard is it for others to grasp what epilepsy can do to a person. We cannot give up or let it get the best of us! My philosophy is just like yours. The support group I started has helped me just as much as it has helped others. Thank you for saying such kind things about me. Expressing my true emotions is easy for me, especially in writing. You seem to be a very warm, thoughtful person yourself.

 

I believe this woman struggles, but her philosophy to cope with epilepsy helps her. Her ability to express her emotions verbally with others is helping her become stronger. Expressing yourself verbally is important because you cannot hold your feelings of having epilepsy inside. You need to share your feelings with others so you can heal yourself and get on with your life.

 

Stacey Chillemi • 35

 

Dear Stacey,

 

How are you? Last evening I had a seizure in the bathroom. I fell against the bathroom tub. We do not use the tub in our house. The tub is covered with a board and a rug is on top of it, so I do not fall hard against the bathroom tub.

 

When I was younger, the doctor had put me on Dilantin. I would act crazy. Once when I was a child I put a wasp down my brother’s back. He got stung. I got punished and now have a fear of being stung myself. I did things like kick mud on my grandmother’s leg. I wet my pants. I was nine years old at the time in school. The teachers would punish me and I would have to stay in for recess. I hardly ever got to go out for recess. I got to the point where I never wanted to go to school.

 

Now I do not have to take Dilantin that gave me those side effects. That medication would make me sleep all day. I also gained a lot of weight from the medicine, and I had a weight problem when I first developed epilepsy. Now, I go on six-mile long walks every day. When I took Dilantin, I felt dizzy. When I would go upstairs, I would have to hold on to the walls to keep my balance. I hit my mom; I quit hitting her once I got off Dilantin. I took Dilantin for thirty years. My parents and my brother thought that the way Dilantin made me act was normal. When they changed my medication, my family found out that they were wrong! I noticed my personality change for the better. I am forty-one years old and got epilepsy at the age of seven years old.

 

I believe medicine can do a lot to your body both mentally and physically. If for any reason you feel that the medication you take for seizures is making you feel or act funny, you should approach your neurologist immediately. If you do not like what your doctor has to say than you should get a second opinion. Never give up hope.

 

 

36 • Epilepsy You’re Not Alone

 

Dear Stacey,

 

Hi! How are you doing? I am thirty-one years old. I have had epilepsy since I was five years old and am on Dilantin and Neurontin. My seizures seem controlled now.

 

I have a story to tell. It started January 1, 1984. I will never forget it. I was in a snowmobile accident. My friend drove up to the water plant at the dam, and then told me to drive back. Like a fool I did. I was all right driving straight, but the road turned, and I went into a seizure and twisted. I rammed into a tree and flew 10 feet. My friend moved me. I got a compound fraction of my spine, and luckily, I am not in a wheelchair. A tree branch almost poked my left eye out. It gave me a scar. I knocked my four front teeth out and had to get a plate. God was watching over me. I do not drive anymore. I use a bus to get where I have to go. My husband helps too. He brings me where I want to go. I do not want to hurt myself or anyone else. I got off easy.

 

I used to live with my parents and they took good care of me. When I got married, I thought things were going to be different. I thought I could get my license and could drive and thought I could focus on my career. Things did not turn out that way.

 

Someday I hope things can be different. For now, I need people like you in my life. Then someday I can turn my life around. I have the Epilepsy Foundation in my life. My therapist is teaching me many things. Then my husband is a sweetheart. He is a big part of my life. I am glad that I met him and that we fell in love with each other.

 

I hope that my story can help other people. As you said, “There are different cases out there.” Take care and God bless.

 

Stacey Chillemi • 37

 

I think this letter shows you the importance of love and support. You cannot cope with epilepsy by yourself. You need the help of others. Never feel embarrassed or ashamed to reach out. Even the people without epilepsy need the help of others to survive.

 

Dear Stacey,

 

I am a 46-year-old single bachelor. I have had epileptic seizures for the past forty years so far. My seizures started in New York City, when I was playing ball on the street with the other boys that time. I was the only six year old on June 1959. When I tripped and hit my head against a large rock. When I came home, I did not really feel that well. I began to get seizures one after another.

 

My parents had to call our family doctor, he came over to our home, and he looked at me. He said, “Michael is having epileptic seizures.” Therefore, he called an ambulance to have me admitted to Columbia Presbyterian Medical Center. I had to stay in the hospital for two weeks and they did many tests on me. The doctors tried all kinds of medicines on me, but none of them controlled my seizures at all. The only medication I am taking is Dilantin 150 mg. Phenobarbital 100 mg. and Valrium 50mg…

 

I have been taking these medications for the past twenty-nine years, since 1957 to June of 1986. A year or two later, I went to my new neurologist in Kingston, New York. He did many experiments on me. Then the FDA in Washington, D.C. approved more drugs that are new and my physician had prescribed me Depakene (valproic acid) 250 mg. and Tegretol (carbamazepine) 200 mg. four times a day. These medications help get my seizures under control and I feel just great. I have been taking these medications for eleven years so far.

38 • Epilepsy You’re Not Alone

 

I believe this man did not give up hope. He kept trying to find that wonder drug that would help him become seizure-free. Through his strength and determination, he was able to find the right drug for himself.

 

Dear Stacey:

 

How do I feel about having epilepsy? When I first started through all the MRI’s and the EEG’s, it was scary. Still, to know what you are really dealing with is less scary. At least, I know it was not a brain tumor. I think anyone with epilepsy just needs to remember we need to practice discipline in our lives. If your life has no discipline you are in much trouble if you have to deal with epilepsy from day to day. I never thought of myself as a discipline person until I had to deal with having epilepsy and I learned how disciplined I was, or maybe how disciplined I have to be! My sketching is really therapy for me. I can sit and do it for hours. I am no great artist, but it relaxes me. I go back to the doctor at the end of October and we will see where I go from here. I feel sure my doctor will want to change the dosage of my medication.

 

Take care.  It was good hearing from you.

 

I think everyone needs some type of discipline in his or her lives. Discipline helps us put our life into perspective. You need a clear mind to focus on your mind, body and spirit. You need to understand yourself so you are able to develop inner peace with yourself and have clear direction on where you are going in life.

 

Stacey Chillemi • 39

 

Dear Stacey,

 

Hi! How are you doing? I am OK. I was five when I came down with epilepsy, too. My seizures are under control with Dilantin and Neurontin; thank God. I have Grand-mal seizures where I shake all over. I do not feel so good before and after a seizure. I know when a seizure is going to come.

 

It sounds like you do not let your epilepsy run you. It sounds like you are a happy person. My friend went for surgery. She has been seizure-free for a long time. I asked my doctor about surgery and he said that I did not need it. He said that my seizures are OK. I was terrified about it too. You do the best you can; that is all you can do.

 

Well, I am going to go. Take care and God Bless.

 

What I liked about this letter is that this person said, “You do the best you can; that’s all you can do.” You do not have to prove to anyone who you are and what you are capable of doing. What you need to do is make sure is that you are happy with yourself. That is all that matters.

 

Dear Stacey

 

I hope you and Michael have a happy Valentine’s Day and that life is treating you well. I would give anything to have 2-3 seizures a month. Consider yourself lucky in a way. I have been having so many I lose count.

Nevertheless, I am happy to hear that you are doing better.

 

It is good that you are willing to stay on the drug study; more research does need to be done. I hope God will be with you and your baby, so that everything will be okay. I took Tegretol for about ten years and it did not control my seizures-but the doctor would not change it. It caused me to

40 • Epilepsy You’re Not Alone

 

have panic attacks and I was afraid to be around people. Nevertheless, I came off it last year and my family said that my personality has really come out now! Mentally I feel so much better. I am on Neurontin and Klonopin and still have poor seizure control.

 

In addition, the past few days I have had a virus and ran a fever- that makes my seizures worse. Since I cannot take cold/flu medicines, I have been taking some herbs that are helping some. I quit going to V.A. for a neurologist because of mistreatment of prescribing meds that conflict with each other and sent me into seizure clusters. So now I go to a neurologist who specializes in epilepsy, one the Epilepsy Foundation recommended. She is good and will have me monitored in the hospital for a few months.

 

Keep me informed on how your pregnancy goes. I know a married couple who have epilepsy and take many medicines, yet have three healthy children, which should be encouraging to you. Keep in touch. In love & friendship

 

I believe this person received advice through the Epilepsy Foundation. The foundation offers many things to people who have epilepsy. In addition, this letter tells us to have strength, stay strong and do not give up hope. Our prayers will be answered.

 

Dear Stacey,

 

I was at my daughter’s dentist the other day. She is back from her maternity leave and was showing me pictures of her baby. She told me to tell you that if a woman of thirty-nine with epilepsy can make it, you will too. It is her first baby, she said, she was surprised that she did not even have a slight seizure while in labor.

 

Stacey Chillemi • 41

 

Maybe now that you know you can stay on the Oxcarbazepine, your stress will be less. I just think it is great that your EEG shows your seizures are better. I went to the doctor’s last week. Well by the time she walks in and sits down, I have a major seizure, get rigid and cannot talk. I have not had one like this in ages. She immediately orders an EEG. She was on her way to lecture and I got the “pleasure” of talking to a neurosurgeon. He told us about strip surgery on the brain or VNS. My dad was in the room with me and when he left, we both shook our heads. I am not ready for this and did not feel comfortable with it. I went home, prayed about it, and decided it is not what I want right now. When I get to the point where I cannot live with my seizures, then I may reconsider. Yes, my seizures have worsened. My doctor is taking me off some of my medications because I feel so drugged. I am getting ready to go to my medical doctor for a hormone checkup. I wake up in the night and I do not know whether it’s “hot flashes” or the seizures waking me up. I sleep very little and that is not good for me. Naturally, with little sleep the next day I have seizures all days. Something has to give!

 

I have a funny story for you. You know I sell Avon. Well, we have monthly meetings and last month a little old woman sat next to me during the meeting. She is close to seventy yrs. old and has been selling Avon for many years. We got to talking and somehow she mentioned that she took thirty pills a week. I told her I took 133. Of course, I explained that I have epilepsy. She said that I did not look like that kind of person who had epilepsy and she was sorry for me. Well, I could not be mad at her because she was so uneducated about epilepsy and it gave us a little chance to chat and I told her a little more about it. I still think she felt sorry for me. I guess that is sweet, but it just goes to prove again how people do not know anything about epilepsy.

 

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I love my doctor. Nevertheless, she does not have epilepsy and let us face it; she does not really know how I feel inside. Nor does she feel the same emotions associated with having epilepsy. I am sure they try to understand, but as I said before, she does not walk around with epilepsy, not knowing when she will be seized and have no control over it.

 

When you say something in a letter and it hits home, I stop and say I am okay she feels that excessively. It is so easy to start to wonder if what you feel is almost not real, especially for me as an adult who developed epilepsy. Well, take care of yourself and the baby too. Your friend,

 

I believe it is important for us to educate individuals who are unaware about epilepsy. Many individuals have many misconceptions about epilepsy. If we do not take the time out to teach the public about epilepsy then who will? This woman was able to have a baby. Epilepsy does not stop you from doing the things you really want to in life; you just have to take good care of yourself.

 

Dear Stacey,

 

I have had a couple of bad seizures, one that really scared my husband. I remembered it started as an aura, but then on into a seizure. So my neurologist has put me on Tegretol XR (a time-release version of the old Tegretol), which I have to take twelve hours apart. I think I am too worried about too many things, and this does not help.

 

I have psychomotor epilepsy. My neurologist of many years just looks at me over steeple fingers. Shaking his head, he tells me, “If the stress you are under because of your mother’s affairs continues, you will continue to have health problems!”

 

My mother guarded the fact that I had epilepsy like some terrible secret! She never thought I should tell my friends I had seizures! My neurologist in

 

Stacey Chillemi • 43

 

San Antonio, TX sent me off to college at Texas Tech in ‘59. He gave me the instructions, “You must tell your roommate you have a seizure problem, and not to be alarmed, and what to do to help you. You must also tell aside your professors and caution to them not to be alarmed! I have always done this. It horrified her when I was on the Epilepsy Society Speakers Bureau. “Oh what will my friends think if they find out?” She cried to me.

 

I feel we all helped in the last thirty years to get epilepsy far out and beyond the old beliefs that people suffering from epilepsy were possessed by the devil or had some kind of evil spell cast over them! Lord, only knows it was hard going through school because kids did not understand what was wrong. My seizures were far more frequent and worse before I had brain surgery in ‘57. The doctor says they missed a small section and that is what now causes my seizures. He says I need another surgery! Aloha,

 

I think this woman is a strong individual. She accepted the fact that she was epileptic and knew that she needed to use her experience with epilepsy to help others. She also had the strength to go through brain surgery. It is scary when you know someone is going to cut into your head and do a surgical procedure on your brain. Many thoughts cross your mind. What if something goes wrong? How will I feel afterwards? Will I be the same person that I was before the surgery? In addition, most of all, she was able to handle her mother being in denial. It is very hard to go through life knowing that your mother does not fully accept you for whom you are, yet that did not stop her. I am very proud this woman.

 

 

44 • Epilepsy You’re Not Alone

 

Dear Stacey:

 

How are you? I have had a cold the last week to ten days. I usually have more seizures during a cold. I had a reaction to a DPT shot when I was seven months old. I had a fever of a 100, with convulsions. I became epileptic when I was seven years old. The doctor traced the epilepsy back to the reaction (fever) from the DPT shot.

 

I took Dilantin for thirty years. It had the same effect as if I were to drink four beers. I use to hit my mom and I sat around half asleep lost in fantasy. I felt like a different person after they changed my medication. None of my family (including me) knew my actions were related to Dilantin. We all thought that was just the way I was. We found out different when they changed my medication.

 

I no longer have to wait until 2:00 am for the hangover feeling (I felt like a drunk at the end of the day). I had to have both arms on the walls to keep my balance on our stairs. Come night I was never tired. I no longer have to live that way. I can put on my coat, my shoes and go for walks.

 

When I was in high school, kids that did not understand epilepsy made fun of kids that had epilepsy, even kids I knew since I was eight years old. Therefore, when I go on my long walks I try not to worry about what will happen if I have a seizure on my walk. Most of the time nothing will happen.

 

I am the only member of my family that does not drive (because of epilepsy). Sometimes I wish I could drive, but on other days like today I put on my coat, hat, and shoes and I went for a long walk.

 

I strongly believe that if you feel your body is not functioning right or you are personality seems to have changed then you should go see your neurologist for some advice. Many people have to go through many different anti-consultant drugs

Stacey Chillemi • 45

 

before they find the right medication. Any medication can alter the way you feel, think or act. Never be afraid to approach your doctor. Your doctor cannot read your mind. You have to tell him how you feel. In addition, there is nothing wrong with disagreeing with your doctor. You have a mind of your own.

 

Dear Stacey,

 

I have an average of four or five auras a month. I usually have auras due to stress. I have no children, but work with preschoolers since the 1970’s. Down below I have listed things that have helped me with my epilepsy.

 

1.      Seizures are not new. Mark 9: 17-29 tells of a boy who had seizures.

2.      Famous people had seizures.

3.      Working with preschoolers, who accept me for who I am.

4.      I once had fear of who would see me have a seizure. Now I tell myself stay calm and trust in the Lord.

5.      I accepted Christ as my savior in 1959. I trust in the Lord and I have felt safe and secure since. I know there will not be any epileptics in heaven. I believe you should hold these encouraging five statements in the back of your mind and think of them when you are feeling down.

 

This is a letter someone sent me telling me how he or she lives with epilepsy.

 

Epilepsy in simplistic terms:

 

Do not get behind a wheel of a car. You could kill someone and yourself. If you drive, you put everyone that is on the highway in danger.

 

46 • Epilepsy You’re Not Alone

 

Do not take a bath or shower when all by yourself. You could die in a teaspoon of water. In addition, drown before anyone would find you.

My experiences about having the disorder: When I was in school, I told my friends that I had epilepsy. They said I would never finish school, get married or have kids. I have done all three. I finished all in 1990 and had a perfectly healthy boy in 1992. I just was remarried this past November to a wonderful, good-looking man that loves me with all his heart. He can handle my epilepsy. I also have a wonderful stepson. I was remarried November 24, 1997. I proved I could do what they are capable of doing and sometimes better. Having epilepsy: realizing you are not alone:

 

I had epilepsy since I was nine years old. When the doctors told me, I had epilepsy I believed I was the only one that had the disorder. I started reading about epilepsy. I found out there were millions of people that had epilepsy. If you talk about your epilepsy, you will find out that you are not alone. You will discover that you can write and talk to people who have epilepsy that would love to help you and tell you about their experiences with the disorder.

 

Accept the disorder and learn to live with it:

 

At first, accepting that you have epilepsy seems hard, but I have learned to live with it in a positive manner. I put my faith in God and live day by day. I take time out of my busy day to thank God that I am healthy as I am, and for the things, I do have: a wonderful husband and two little boys I love with all my heart. The three of them can handle my epilepsy. You will know who really loves you when they find out about your disorder. My friends and family helped me to think positively and not to give up.

 

Stacey Chillemi • 47

 

 

These five things helped me to learn to live with my disorder in a positive manner:

 

1.      Put your faith in God

2.      Know you are not the only one with the disorder.

3.      Set your goals high.

4.      Be happy who you are.

5.      Think positively.

 

I believe this letter talks about what I have been saying in this book all along. This woman has the right idea on how to cope with epilepsy and because she knows how to live with epilepsy, she was able to accomplish the goals she set for herself.

 

Dear Stacey,

 

I have been really busy taking care of my husband (he is finally back to work on light duty), helping my daughter get ready for college, tending to my Avon business and trying to find a little time for myself. (Training new reps for Avon: that is a real trip in itself!)

 

I am doing much better now that I took it upon myself to modify my own medication. That is something I would normally never do, but it was that or go crazy! My doctor had increased the dosage of one of my medications. I felt like I was on a terrible drug high, or at least what I think one would feel like! My doctor was in Montreal for a week, I was talking with her head nurse, and she was talking to the doctor each day about my situation. She was gradually reducing the dosage. Yet, it was not enough to help. The day came when the office was closed. The doctor was still in Montreal and I had the whole day to get through. That was it! Now my seizures are no better but I had to live with that for a long time.

 

48 • Epilepsy You’re Not Alone

 

I am so excited about your book! It gives me a sense of pride to think that I might have made a small contribution to it. You know I may get down a little, but I pull myself back to reality and, like you, I know that I am not going to let epilepsy control me. I am bigger than that. Yes, I may have to change a few things in my life to live a little better with it. Still, I know that I can have a better quality of life by doing so.

 

I went to a seminar with a motivational speaker from Avon today. I am selling more and it has been a real hurdle for me to get over not driving, but I enjoy selling Avon and I decided I would do my very best. My business has really grown in the last four years. My manager passed around an article that was in the Woman’s Day magazine at one meeting we have each month. So many women after the meeting were in awe that I would even sell Avon without driving. At that point, I would like to have made a little motivational speech of my own to tell them that you can do anything you want to do, when you put your mind to it. This is one for your book.

Not to long ago, I was at my hairdressers and one of my customers who apparently did not know that I had epilepsy was there. She overheard another woman in the Salon ask how my seizures were and right aloud where everyone could hear she blurted out that she did not know that I had epilepsy. How in the world could I be on Avon Lady with epilepsy? Guess I was so astonished that I could not really even think of anything to say.

Yet, that it was not a problem for me. I had a husband and daughter to help me get to my customers. I was really taken back!

 

I will continue to keep you in my prayers. You are most wonderful and happy years are ahead of you, as you become a mom!

 

I like this woman letter because even though she has a tough time with her epilepsy she does not let it get her down. She focuses on the positive things in her

 

Stacey Chillemi • 49

 

life and concentrates on making the people she loves the most happy. She also has her job, which she enjoys, and by molding her life the way she has; she has increased her strength, self-esteem and self worth.

 

Dear Stacey,

 

Ten years ago, they diagnosed me with epilepsy. I was thirty, now I am forty-one. The medicines I am currently taking are Felbatol, Lamictal and Tegretol. Of course, I had tried so many medications before these. I used to take Phenobarbital, but it just did not seem to help.

 

I have the grand—mal and petite—mal seizures. My reactions are the same as yours, but my memory loss lasts a lot longer than yours. I am so proud and thankful that you are writing this book. I have been through a lot since they had diagnosed me with epilepsy. My life before was an active life. I was never home. My friends would pick me up, since I do not drive and I would go out to eat or just hang out. Nevertheless, since I had a few seizures around them, they have stopped calling to go out. It seemed like I had a plague. I would embarrass them, but they would never say it to me. My co-workers were acting this way at first, but they helped me out by treating me as if I was normal. Yet in 1995, my doctor finally demanded me to quit work. He said that it was the stress that was causing my seizures. I really doubt that because everyone has stress in his or her lives.

 

It took me about one and a half years before I really got over the fact that I could not work any more. Of course, the seizures returned every once in while. That is when I really started to write letters to the Epilepsy USA Newsletter. These people have really helped me out. I do not feel so alone. I have started planting a garden to help my self—esteem. It is working I just want everyone to know that I am not dead. I still can do things for myself.

 

50 • Epilepsy You’re Not Alone

 

I am so proud of those that are still working. I just wish that I could work, but I have just placed my faith in the Lord and he will help me along the way.

 

My family had been supportive of me. The only thing that I need to conquer is going out to eat or shop. They are major things. Nevertheless, as I said before the Lord is helping me so, when I do go out I pray for his help.

 

Your friend,

 

I believe the Epilepsy Foundation can help any one with epilepsy get their life back on track. When your seizures are occurring frequently it is hard to go about your daily activities. This could become depressing. Yet if you have support from others with epilepsy and individuals who can help you create a life suited to needs, then you can overcome the obstacles put in front of you.

 

Stacey,

 

I am giving a lot of thought about doing something goofy. I would like to hike the entire distance of the Appalachian Trail. I need to do something for me. I need to feel a sense of adventure flowing through my veins again. Since I had to stop working, I feel like I only exist. I feel like I am in a void and cannot break out. I do not know if I could get ready to go by next year, but it would be a fine way to celebrate my fiftieth birthday in the year 2000. When and if you have time, let me know your thoughts about it. If you know someone that made the hike, maybe you could connect me with him or her to get information on how to get ready. My doctor will probably flip out when I tell him my plans. I see him next month.

 

May God fill your life with peace and happiness.

 

Stacey Chillemi • 51

 

I think it is great that this man is searching for something to fill his inner needs. We all have dreams, hopes and wishes. We need to always be aware of what of what are mind body and soul are trying to tell us. We always need to please ourselves because if we cannot please ourselves than how can we make the people around us who we care about happy?

 

Stacey,

 

Hi, how is everything going? I am doing well over here. I am glad to hear everything is doing well with you and the baby. I had one seizure this month so far. I believe everything happens for a reason. When I got my divorce, I believed no one would marry me because of my seizures, but I asked God to send me a good man and he did. He is a great man.

 

It took me a long time to realize I was not the only one with seizures. Nevertheless, when I finally realized I was not the only one, I knew I could write to people who also knew how I felt. So far, I have gotten much support from other people. These people really understand me, they are epileptic, too. I believe other people need to realize that people with seizures can do everything except drive and take showers by themselves. I have been lucky so far to have a wonderful man who loves me for myself, and who can handle my seizure disorder, and a wonderful son. I love all three with all my heart. That is all for now. I will be praying for you and your family. May God be with you all!

 

I think if you have determination and hope anything is possible. This woman, through prayer and hope, found herself a man who accepted her epilepsy and wanted to spend eternity with her. Through reaching out to others, she was able to develop strength and a higher self-esteem. It is so important to understand

 

52 • Epilepsy You’re Not Alone

 

that you are not the only one with epilepsy. Many individuals who have epilepsy go through the same thoughts, feelings and physical trauma as you do.

 

Dear Stacey,

 

It sounds like an exciting time for you and the baby. Sorry to hear you are still having seizures, but hopefully one day you will find the right medicine to stop them together. I still have seizures occasionally. Sometimes, it makes me feel depressed and sometimes it does not bother me at all.

 

I have not been feeling too good and cannot figure out what is wrong. I am anemic and this could make me feel bad. I am now on hormones and it can make you feel depressed. It is always something!

 

How did you know you were having seizures? Are your seizures mostly frequent when you are sleeping? I agree with you about the support. We need to help one another-which the family does not fully understand. I lacked support groups, but could not find any close enough for me. Driving is my problem, as you know.

 

I respect you for not letting epilepsy get you down and you should not. You are young, married and about to become a parent, and that is what life is all about!

 

I think when you have trouble reaching support groups because you are unable to drive, and then you must reach out to others and ask for help. As friends or family members to take you to the support groups. If you are unable to get rides during the time of the meetings, then you have to look for other ways to help you and your epilepsy. Have the Epilepsy USA delivered to your home so you can find out about other events in your area or write to other people with epilepsy. There are

 

Stacey Chillemi • 53

 

0ther addresses listed in the magazine. Call the Epilepsy Foundation and find out how you can become involved. There is always a solution.

 

Stacey,

 

Congratulations, how is your new little one doing? Last weekend I

went on an epilepsy retreat. I met many people. We played volleyball, softball, made beads, went on a hayride, practiced archery, and climbed a wall. It was so interesting meeting people with all different types of epilepsy. Last week I was in the hospital for testing because I am really considering surgery.

My medication is just not working. My seizures are found on the left temporal lobe. Now next week I had to have on MRI done and a Grid test to decide where they are going to take the piece out that needs to be removed. We are not sure where we want to have the surgery done. That is what we are investigating right now. I am so happy that my new boyfriend is staying by my side through all of this.

 

I think going on retreats is a good way to meet other people and develop self-confidence in yourself. Doing different physical activities is great for the mind, body and soul. It helps you realize that epilepsy does not stop you from living and enjoying the wonderful life, which God has given us.

 

Dear Stacey,

 

Thank you very much for writing. I also have epilepsy. I do have the partial complex seizures.

 

54 • Epilepsy You’re Not Alone

 

I am twenty-three years old and started having seizures at the age of thirteen in 1986. I still have them to this day. I am now seeing a new Dr. and he is very wonderful. You mentioned that you could become pregnant! They told me that I was never was going to be able to have children unless my seizures were 100% controlled. Well, I have not had any luck! I have been with my fiancée for three years and no luck at all. We are planning to get married sometime this year or at the beginning of next year.

 

As for my medications, I am taking Neurontin 400mg and Tegretol 200 mg. I just had Neurontin increased, so I am taking another. Together I am taking fifteen pills a day. Nevertheless, it is helping me a lot more! I have not had any seizures lately ever since they have moved my dose up! I have to go six months without having a seizure before I can get my driver’s license. Well, we will see what happens.

 

I was on a much better medication before! I was taking Felbatol. I was almost to the point where I was close to getting my license then I read that it was not good for the body so then I went to my doctor and told her that I wanted to be off it. Therefore, they then put me back on Tegretol. Nevertheless, it is helping me for now.

 

Well I have to get going now. Take care and hope everything goes great with the baby.

 

I believe this woman had the right idea when they decided to switch medications. Every medication has its drawbacks. What matters is that you have to feel comfortable taking the drug. This woman was not pleased with the drug because of what she heard, so she took the initiative and approached her doctor.

 

Stacey Chillemi • 55

 

Dear Stacey,

 

I am glad you are still on Oxcarbazepine. It sounds like a good drug for you and the baby. I am so proud of you and how you held up through your pregnancy. If this drug is the one for you, try to stay on it. I appreciate knowing that some neurologists help you with your research program. Your prayers are already said, girl. I have prayed for you, believe me.

 

I have some good news for you. I was having some bad seizures. Then the doctor put me in a clinic for eight days. They took all my medicines away from me, keeping me up to 2:00 A.M. and waking me up at 7 A.M. I had a bad seizure, splitting my head open between my eyes. Now I am on Depakote and seizure—free.

 

God Bless,

 

I believe in order to reach our goals and dreams we need to put a sincere effort into what we want in life. This person had a tough time with her epilepsy, but she had the strength to go into the medical clinic and go through extensive testing to help her epilepsy. She was also able to achieve one of her main goals in life. She achieved her goal by being hopeful, using her religion to help strengthen her and having the ambition to succeed.

 

Chapter 2

 

POETRY STRAIGHT FROM THE HEART

 

 

HAPPINESS CAKE

 

·         1 CUP OF GOOD THOUGHTS

·         2 CUPS OF SACRIFICE

·         1 CUP OF KIND DEEDS

·         1 CUP OF CONSIDERATION

·         2 CUPS OF YOUR THOUGHTS

 

Combine the ingredients and mix thoroughly. Flavor with love and kindly service. Fold in prayers, faith and enthusiasm. Spread all into your daily life. Blend with human kindness. Serve with a constant smile and it will satisfy the hunger of many people

 

Thank the Lord,

For all of his mercy,

And love,

Amen