In the introduction, I discussed the expense of Epilepsy, but I want to include that information in this section as well because it is very important that we come to understand how important it is that we overcome this health problem.
The amount of money spent on Epilepsy and seizure care is staggering. Every year, the U.S. spends more than $15 billion dollars on the care of those people affected by seizures. (Not millions of dollars- billions of dollars.) For every trip to the emergency room for a seizure, $700 dollars is spent. Over $450,000 is lost every year by the men and women suffering from seizures. Yet, even with lost wages, these individuals must pay out more than $30,000 annually for emergency room visits.
A seizure is a temporary interruption of brain activity that occurs at times of unusual and excess electrical flows in a personís brain cells. It results in changes in mental status, awareness, function and consciousness. The attack often begins suddenly without warning, though many people do have a warning, or what is known as an aura. A seizure may be momentary, or it may last several minutes. An attack like this is relatively harmless, though I promise you it is terrifying to onlookers and to any sufferer who remembers the attack. The general rule for concern is that the need to call for emergency personnel is when the seizures last beyond five minutes. The other cause for concern is possible accidents or other complications. These minutes may seem like an eternity if you are witnessing a seizure. This is especially true if the seizure is a violent one.
There are other things that may appear to be seizure activity having a root that is not physical, but emotional. These are known as Psychogenic, Non-epileptic Seizures (PNES). This type of seizure is not epileptic. The doctor may choose to send you to a psychologist to help resolve the emotional triggers. If you or a loved one have been diagnosed with PNES, this does not mean that your seizure are in your head, or not real. What it does mean is that the seizures are not caused by misfiring electrical impulses, as is the case in Epilepsy.
This is a condition of the brain that makes a person likely to experience repeated and unprovoked seizures. This will be diagnosed after an individual has had at least two unprovoked seizures, or if future seizures are likely to occur. Seizures can occur with other medical issues. These are provoked and not considered Epilepsy. Some of these medical issues are head trauma, substance abuse of any kind, fevers, and changes in a personís glucose level (such as in diabetes). There are also a number of medical conditions that may include seizures; such as meningitis.
Epilepsy has been regarded as a spectrum disorder among certain health professionals today (Noebels, Avoli, & Rogawski, 2012).
In a way similar to Autism, Epilepsy has many components, is complex, and differs in severity among individuals affected by the condition. Among the elements involved are; cognition issues, behavior issues, neurological and psychological issues, and the very real possibility of sudden death. For many years, I thought that if a person had Epilepsy, they had a seizure now and again- like me. If you were to find me on the spectrum, I would be at the beginning of the scale where you would find an individual with Epilepsy that is well managed using one medicine, and where the person is not sick. My case is very mild. In my worst years, I had about four seizures in a yearís time, and a few more when I was pregnant. Someone like me does not find Epilepsy to be disabling. There are many people whose Epilepsy is further along on the spectrum, making them far more disabled than I ever was. There are many issues that for the person affected, are even more disturbing than the seizures are, and that is saying something!
Earlier I said that psychological issues are common in Epilepsy. Depression and anxiety are fairly common for sufferers of Epilepsy. Also, an element of Temporal Lobe Epilepsy is hallucinations. This element is also found in Schizophrenia.
Typically, seizures are classified as either partial or generalized. With a partial seizure, there is activity in one portion of the brain. There can be movement (right arm jerking, for example), changes affecting the senses, (vision, or sound, or a feeling like electricity in the body). Speech may be affected during the seizure.
There is also a complex -partial seizure that causes brief confusion or a charge in awareness. This type is frequently misdiagnosed. These seizures may include strange motor movements and sensations. If you or your loved one smack the lips, have chewing motions, or pick absently at clothing or skin, this may indicate a complex-partial seizure.
These are the seizures that most people recognize as such. But these are classified into two categories. Here we find the primary generalized seizure, (which includes the absence seizure and the grand mal seizure), and what is known as a secondarily generalized tonic- clonic seizure. This last type is the one I am most familiar with, as I have had them myself, though not in a dozen years. My last seizure was a complex-partial seizure, which did not become convulsive. The last convulsion I had was in 2002. I remember it mostly because I was going through a divorce at the time.
The primary generalized seizure often starts in each hemisphere of the brain and typically has no well-defined region of beginning. Included in this type are the generalized tonic-clonic seizures (grand mal), absence seizures (petit mal), the myoclonic seizure, and atonic seizures.
The secondarily generalized tonic clonic seizure starts as a partial seizure or a complex partial
seizure. It eventually extends to both cerebral hemispheres with a generalized convulsion being the end result.
I mentioned Temporal Lobe Epilepsy earlier. This form of Epilepsy has seizures that begin within the temporal lobe. These seizures often are comprised of changes in the personís senses. There may be unusual sights or smell, along with changes in memory. Seizures may be partial, or complex- partial. The seizure activity may spread throughout the brain, becoming generalized. It may be caused by brain injury, or illness, like meningitis. However, it is not mental illness.
Anticonvulsants (also commonly known as antiepileptic drugs) are a diverse group of therapeutic agents used in the treatment of Epilepsy. Anticonvulsants are also used in the treatment of Bipolar Depression, because they appear to function like mood stabilizing medicines, they also are effective for treating pain. Anticonvulsants control the rapid excess firing of neurons during convulsions. Anticonvulsants also prevent the spread of the seizure within the brain.
Specific Medicines For Seizure Control
The prescription medication known as Dilantin (phenytoin in the generic form) is used to manage grand mal seizures. This type of seizure produces a sudden loss of consciousness, followed by convulsions. These are often violent. There may be temporal lobe activity, as well.
Phenobarbital is helpful in controlling seizure and related anxiety, it is often used to reduce or eliminate withdrawal symptoms in addicts. It is a barbiturate and works by causing brain activity to slow down.
This drug is prescribed for patients suffering Bipolar Depression for help managing the manic phase. It is also useful in managing seizures and migraines. Please inform your physician if you have any changes in mood, as many seizure prevention medicines may cause suicidal thoughts. Depakote causes hair loss and weight gain.
Tegretol is used to treat seizures and nerve pain such as diabetic neuropathy. Carbamazepine is also prescribed to treat bipolar disorder.\
Lamictal is another anti-seizure medication. It may be used by itself or with other medications to treat epileptic seizures. It has been used in adults and children. Lamotrigine is also used in the treatment of adults with bipolar disorder (manic depression).
Gabapentin (Neurontin) is a medication used to control pain as well as seizures. It has been used for other conditions in addition.
Oxcarbazepine is an antiepileptic drug that decreases the electrical impulses in the brain that result in seizure activity. It is used in the treatment of partial seizures.
Ethosuximide is an anti-epileptic medication used to treat absence seizures (also called "petit mal" seizures)
Primidone is one of the medications known as barbiturate anticonvulsants. It helps to control irregular electrical activity in the brain that occurs during active seizures.
Keppra is another prescription medicine used to treat partial onset seizures. It is used for Epileptic patients over twelve.
Lyrica is used in the treatment of partial onset seizures.
Topamax topiramate) Topiramate is used to treat seizures in adults and children who are at least 2 years old. It is also used to control migraines.
There are other medications, but these are the ones that are most familiar. Please be aware that many anti-seizure medicines contribute to changes in mood, and may increase the risk for depression and suicidal thoughts or behaviors.
Surgical Techniques For Seizure Control
In about 30 percent of the epileptic community, medication does not seem to work. For some of these people, surgery might be a good approach. Surgery for the treatment of seizures goes back to the days when the surgeon would drill holes into the patientís skull for relief. This was extremely invasive and not always successful. The modern resection treatment is not nearly so barbaric. It is, however, expensive, and financially devastating.
Epilepsy surgery involves operating on the personís brain to remove the part of the brain that is producing seizures. Another surgical approach is to surgically interrupt the nerve pathways so that seizure activity cannot spread. There are also certain devices that can be implanted into the brain which help manage the condition. As I understand it, surgery is a last resort option. I am very thankful that I am one of those people for whom medication has been successful.
Family and Community Support
The difficulties of the concerns of the seizure sufferer are not limited to the patient. It is difficult for family members, as well. Some parents have a hard time understanding the hardships experienced by their epileptic children. For parents of older children, it may be even more difficult. Many of these parents do not have the coping skills or the knowledge to help their suffering loved one. Of course, we have all heard stories of the parent who tries to ignore the fact that the adult child has a real disability. Some of these parents simply want the issue to go away. Unfortunately, the young person living with the condition is now left feeling abandoned. This adds to the problem.
Whether you suffer seizures yourself, or are a relative of someone who does, the simple truth is Ė all of you need help and support. For Epilepsy Support Group information, please contact your local chapter of The Epilepsy Foundation, and get involved in educating yourself, your family, and your community.
A support group is a group that meets regularly to share life experiences and seek help related to a common issue. Over time, the group bonds and become a community. The sense of community that these individuals discover in the group leads to greater empowerment for its members. Additionally, the group develops coping skills, and learns to become a voice in advocacy for the shared concern. Support groups may be either formal in their structure, or they may be more casual. Some groups advocate for shared causes, while others focus on the peer group involved. I will be writing about the peer group.
Support groups meet together several ways. One way is in the physical setting. A time and place is agreed upon, and the members meet in person. Another way to meet is through the internet. This is useful because the members do not need to be online at the same time. Threaded posts are used to share views and add to the discussion. The members are free to respond at times convenient to each individual. An added benefit is the opportunity to share the experiences of people across the globe while ensuring the members can remain anonymous.
It is important for people with Epilepsy and other seizure disorder to find ways to connect with each other. We are stronger together and have a greater voice. We must learn to find that voice and advocate for our condition and for our lives.
My first online support group
It was the year that America first came online. if you wanted you to know that two people in the safest way possible on the internet, you were on AOL. I was there too. It was there that I had the honor of meeting the young man known as Steve Jobs. Yes I did say Steve Jobs. This is before he became the American icon we all have come to love. Back then, Steve was a young man with a computer like all of us. He often hung out in the chat area we called the lobby. He spent his time talking about Internet safety. he taught us how to keep our participants safe online. This was valuable information to have when I founded my first epilepsy chatroom. This group grew in size to about 300 members. Then I had to end it, because the dial up modem we had at the time caused the phone bill to skyrocket. I continue to talk to others with Epilepsy, encouraging them to live full and productive lives.
Creating Greater Awareness
A basic goal in epilepsy awareness campaigns is to reduce and eliminate humiliation with the promise of improving the quality of life people with epilepsy enjoy. Half-truths and misunderstandings about epilepsy remain common and powerful even today. The need to increase public awareness and knowledge about epilepsy and other seizure disorders is critical to address if this is to change. We must enlist the help of influential people, such as news reporters and journalists. We must reach out to members of the entertainment industry too. We simply must combine all our efforts to research and develop strong strategies to win this war against epilepsy. We must work diligently to eliminate stigma and bullying to keep all who suffer from chronic conditions safe.
I absolutely love the fact that there are celebrities reaching out and becoming more vocal about Epilepsy. There are quite a few well know public figures and historical people who have lived with Epilepsy.
Living Independently With Epilepsy
Many years ago, people who had epilepsy were thought to be demonized. The idea was that seizures were the work of demons. Some religious groups attribute seizures to demonic activity even today. People with epilepsy are not less intelligent, or less capable than other people. Epilepsy does not lead to aggressive behavior. It is not an emotional illness or mental defect. it is not contagious. People who have epilepsy have experienced prejudice in many forms. and this results in rejection and low self-esteem. Individuals with epilepsy can live successfully in their own. Some of them may impose restrictions on themselves (or well-meaning family members may do so) but this is not usually necessary. For example: People with epilepsy can have a drink at a social function, although drunkenness is not good for anyone. I do not ever drink personally, but that has more to do with the fact that my stomach does not tolerate alcohol well. It tends to burn my stomach. I have never developed the taste for it. My drink of choice is soda, which I have to watch because of the caffeine. We can cook. I personally make lasagna that is to die for. We can attend musical events, play video games, go to clubs, and even drive a car. I am still working on getting my license, but that has nothing to do with my seizure disorder. I haven't had a seizure in at least 10 years as of the time of the writing. But, learning new tasks is more challenging as we age. I believe that we should not set limits for ourselves, for this can be destructive. We need to increase each personís faith in his or her God-given abilities, enabling each person to have the greatest possible impact on his or her community.
Many people ask if it is possible to live independently if you have seizures. The answer is simply yes. Yes of course a person can live a successful independent life even with a seizure disorder. The question really is, how is this achieved? I think for the most part, it is simply maintaining the desire to do so. Faith in yourself is important too. In order to do a thing, anything, a person must believe that he or she can do it. So this is the key to a successful life with a disorder of any kind. Now , obviously there are some considerations. The most important of these is safety. Honestly if you are having seizures a hundred times a day, just saying, obviously now is not the time for you to be living alone. However for someone who has been on medication for a long while, whose seizures are well-managed , it is possible to live independently and to do it well. It is simply a matter of knowing where the limits are and where they are not When you live with a disorder you have to learn how to manage your tasks. For example, learning to cook meals, whether for yourself or for family is one of many tasks that must be performed each day. So my question to a person who is exploring this possibility for the first time is this. How prepared are you to do this task? Are you comfortable with it? Do you feel you can become comfortable with it? What is your backup plan for those times you cannot perform the task? To the extent that you can answer these questions you can make the determination you are readiness for independent living. What about shopping? Are you able to get out to the store on your own? Are there buses available ? How will you handle an emergency, whether it is yourself in trouble or someone else in the house? What will you do if something needs to be repaired? Do you have the financial capability for independent living?
Some people make the assumption that because we have a seizure disorder that we shouldn't be left alone , as though we are invalids. We are not. We are as capable of doing almost anything as anyone else. The problem really isn't our lack of ability but our lack of faith in ourselves.
Epilepsy is what is known an invisible disorder. It is not seen all the time the way that some conditions are. It is easy to tell if a person is blind, deaf, or is in a wheelchair. However, unless you actually see a person having a seizure, you might never know the person has the condition. Most of my own seizures were not seen. They happened in my home. Therefore, most people in my life have not witnessed my seizure activity.
I had one seizure in school, and one in a restaurant. I have had one seizure in each of two nursing homes. All the rest of the seizures I had been at home. That means that some of those seizures occurred when I was alone. I was never afraid of living alone, although I lived with a seizure disorder. I learned to develop the confidence I needed to live independently. You can too.
There is very little that a person with Epilepsy cannot do. Flying a passenger aircraft, or driving a train are two things that come to my mind right away. Obviously, one should not drive a car when the seizures are not under control, but many people with Epilepsy do learn to drive. One simply has to determine the risks involved, and understand his or her own limitations, without expecting that others must live by the same limitations. Using driving as an example- if you feel that driving involves too great a risk- great. However, that doesnít mean that others with Epilepsy should never drive. It is important to not allow generalizations like that to govern oneís thinking. To do so turns back the clock on awareness and acceptance.
Epilepsy and Pregnancy
It is very important to care well for yourself when you are expecting the birth of a child. This is especially true of the woman living with a seizure disorder. Pregnancy does come with its own issues. Having a condition such as Epilepsy increases these in those women of child bearing age. It is important for a woman to know how to increase the possibility of having a successful pregnancy and a healthy baby, as I did.
When I was young, my doctors told me that my medicine could contribute to infertility over time. At the same time, he said that my medicine would interfere with the use of birth control pills by lowering its effectiveness. Barrier methods were the recommendation for me. I had my children before the age of 21, and I have been grateful for that. My children were born healthy in every way.
I did say earlier that I experienced an increase in active seizures during my pregnancies. My doctor sent me to the high risk clinic for pregnancy care. It was a good choice for me and my children. Now, each pregnancy is different, and so is every woman. Some women will not experience any change is the number or frequency of seizures during her pregnancy. It is important to be faithful to taking your medication throughout the pregnancy.
It is true that taking anticonvulsant medication during pregnancy increases the possibility of the child being born with birth defects. However, that increase is only slightly higher. Not all medications carry the same risk, so discuss this with your doctor.
I will not discuss every possible thing that might go wrong if you have a seizure while pregnant. I will say that having a seizure could cause premature labor, as well as affect the babyís heart rate. So, it is critical to have good care throughout the pregnancy. Your health care team will likely consist of your primary care physician, an obstetrician, your gynecologist, a neurologist, and an epileptologist as needed.
Seizures during pregnancy are dangerous and frightening, but I and many other women with Epilepsy have given birth to healthy babies. It is very important to tell your doctor about every seizure you have, so that you continue to get the best care. This is doubly true in pregnancy. Women with Epilepsy can and do go through the delivery of the baby without incident. We are able to have the same approaches used in the labor and delivery rooms as any other woman. We do not need to fear that seizures with happen during delivery. The doctors are prepared to handle that possibility. As I said earlier, my delivery of both children was without any problems. One final note, many seizure prone mothers can and do breast feed their babies. I did.
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