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Fighting for a Cure - The Battles of Living with Epilepsy

I got epilepsy at the age of five. I had contracted a sore throat and an ear infection. My mother had brought me to the doctor’s office that evening and the pediatrician had put me on penicillin and told my mother to have me rest in bed. No one thought much of it at the time. When one is young, your immune system is weak and catching any bug surfacing in the air is all too easy. Especially, sore throats and ear infections, the most common sicknesses afflicting young children.

I rested in bed and I was on the penicillin for about ten days. My mother recalls that on the tenth night when she put me to bed, my lips were more red than usual. The next morning about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She found me in my bed turning blue and having a convulsion. This was the first time I ever had a seizure

She ran to the phone to call the ambulance and had me rushed to the hospital. They brought me to the emergency room and hurried me to the isolation ward. They had no idea if any type of serious or contagious illness brought on the seizure. The doctors at the hospital diagnosed the convulsion as a grand mal seizure. We also know this type of seizure as generalized tonic clonic seizure.

I fell to the floor, my eyes rolled to the left and my whole body began to shake. My teeth began to chatter, and I started to foam at the mouth and choke on my saliva and my skin color began to turn bluish because of the lack of oxygen I was enduring. All I remember is waking up in a hospital bed. My parents were in the room with me.

They administered many tests to try to diagnose the cause of the grand mal seizure. The doctors finally concluded that the grand mal seizure came from a virus. The virus I had was not an ordinary virus. It was a virus known as encephalitis. The doctors had told my parents that the bacteria from the ear infection had traveled to my head and that the virus was still in my brain. Doctors had told my parents that the viral encephalitis had to leave my brain naturally on its own. Doctors were not sure when the germ would leave my brain. They said that while the virus was in my brain that it could possibly leave me with some type of brain damage. I was in an induced coma for four days after the grand mal seizure. The doctor had told my parents while I was in a coma that if I were to come out alive I would probably have severe brain damage or I could become paralyzed and need a wheel chair.

This horrible news devastated my parents, but they never gave up hope. On the fourth day while I was in a coma, my father lay by my bedside and began praying to a saint. My parents told me years later that after my dad finished praying a teardrop rolled off from my eye and down my face and I woke up. They tested me right away and found that the infection had traveled to my brain and caused left-sided scar tissue damage. The doctor told my parents I was very fortunate; they had expected the outcome to be much worse. That was the reason I developed epilepsy.

The scar tissue damage I generated is very small and does not interfere with the way I think or function. The only problem that developed was that I found some difficulties with my long-term memory and I have trouble with my usage of words occasionally. When I am talking, I have problems remembering the word I want to use. So instead, I need to compensate with another word. This could be because the part of the brain that controls vocabulary is right next to the memory. The scar tissue damage is probably between both areas, I am assuming. These two functions of the brain are close to one another, this is probably the reason I have difficulties with both areas. This is a minor handicap compared to other cases of epilepsy that were brought to my attention. I am very lucky. God was definitely watching over me.

Phenobarbital controlled my seizures, until the age of nine. Before I was nine, the only time I would experience a seizure was when I had a high fever. When I had a high temperature, I usually would have a grand-mal seizure. Phenobarbital is known today to be a barbiturate and is not used as frequently on epileptic patients.

At nine, my body began to go through the stages of womanhood. This is when I experienced puberty. Once my hormones started changing, I began developing more seizures. My seizures would occur around the time of menstruation and ovulation. My neurologist told me that I was retaining water on my brain during this time of the month.

My auras begin with a feeling of fear or paranoia. When I have an aura, I start to feel scared and begin to think that someone or something is going to hurt me. For instance, if I were in a car while a seizure was beginning to occur, and we were driving where there were many trees, I would begin to feel like someone was going to pop out from the trees and hurt me physically. After encountering that scared feeling, I would then start to feel ‘a tingling feeling in my feet.’ The tingling sensation would develop into a feeling of being electrocuted, as if one put your finger in an electrical socket. The electrical sensation would travel up my leg to my head. Once the current of electricity reached my brain, the aura would then end and I would lose consciousness.

When I endured a seizure, my eyes would roll to the left, my hands would move toward the left side also, my teeth would chatter and my mouth would foam with saliva. My seizures would occur almost any time of the day. My seizures mostly lasted for about thirty to forty-five seconds.

Then I would come out of the seizures, sometimes with memory loss, depending how severe the seizure was then. I would also feel fatigue after a seizure and would usually have taken a nap. My seizures were continuing to occur more frequently as I got older, so my neurologist felt that Phenobarbital was no longer controlling my seizures. The neurologists wanted to administer another medicine combined with Phenobarbital to try to stop my seizures from occurring.

When I turned twelve, they put me on another drug called Tegretol. The neurologists were hoping that the combination of the Phenobarbital and Tegretol would help regulate my seizures. I always kept a positive outlook, hoping this would be the medicine that would completely control my seizures. My body seemed to agree with this medicine. The combination of both drugs worked well in my body. My seizures were decreasing monthly. Unfortunately, I was taking large doses of both medications.

At the age of eighteen, my seizures were well under control and my neurologist gave me permission to drive a car, feeling that my safety was no longer in jeopardy or likely to endanger someone’s life while driving. I was so excited.

Unfortunately, after a few years, I had to stop driving because my seizures began to increase to two or three a month. The seizures occurred mainly at the time my hormones were changing during ovulation or menstruation, so I had to be always on guard. My seizures would occur four to five days before or after ovulation and menstruation. I was capable of having a seizure at anytime of the month.

I was not going to let the fact that I could not drive discourage me. I concluded that one needs to work with what one has and make the best of it. I was going to focus on just the positive aspects of my life and not let epilepsy get me down. I refused to let epilepsy depress or control me. If Vincent Van Gogh could be a famous painter despite having epilepsy, then I should be able to become something good in life too. I believe God does everything for a reason. We need to look at life on a positive note. My friends and family have been supportive and are willing to help me in any way they can. My family and friends are always willing to drive me anywhere I need to go. If they saw that, I was struggling and having a hard time dealing with my epilepsy for whatever reason they always offered their support and love. They understand that sometimes it can become stressful or frustrating when one wants to go somewhere and one has to rely on others to get there.

I feel uncomfortable sometimes-asking people for car rides because I know everyone has their own lives to live and responsibilities that they need to attend too. I do not want others to feel obligated to take me places when I have to go somewhere but I have gotten better when it comes to reaching out to others for help, though I have always been a self-reliant person. When one has epilepsy, one needs to realize that you cannot do everything by yourself. Having seizures does create problems, but it does not stop us from reaching our destinations. In order for us to do everything we want too, we need to realize that we have to reach out for other people’s support and love. Having other people’s love and support is a necessity in life. No one can make it through this life alone. My family and friends have helped make my life a lot less stressful. Dealing with epilepsy for once had become an easier and a more pleasant experience.

In my twenties, my neurologist and I decided to stop the Phenobarbital. I chose to stop the Phenobarbital because my seizures were persisting in addition, were not decreasing. New drugs came on the market for epilepsy and were working well with other people who had the disorder. They knew the newer drugs on the market to be healthier and safer to use.

I eagerly wanted to stop having seizures completely, so I decided to try a few new medications. If worse came to worst, I could always go back onto my original medication. I tried Depakote, Felbatol, Dilantin and Nervone with the Tegretol, yet nothing seemed to stop the seizures from coming.

My neurologist began to try to encourage me to go for temporal brain surgery. My family and friends gave me much support while I was making one of the most important decisions of my life. Surgery may be an option if a tumor is causing the epilepsy in the brain, or if the medication fails to control the seizures. Surgery usually becomes an option when the seizures begin in one small area of the brain. If such an area can be found, the surgeon will remove it, and usually the seizures will then stop, or reduce, but they will only operate when the possible benefits outweigh the risks.

I was so terrified when my doctor had suggested that I should go for testing to see if I were a candidate for brain surgery. Every time he mentioned that, I go for brain surgery I would ignore his comment and discuss the new medicines on the market for seizure control. I was terrified of the thought of brain surgery. My neurologist gave me phone numbers of other individuals with epilepsy who went through the surgery and had wonderful success. The names and numbers of the people he gave me had stopped taking seizures either completely or barely ever would have a seizure after having the surgery. One person whom I spoke to gave me detailed descriptions of what to expect. She helped motivate me and feel relaxed. The young woman I spoke with was enthusiastic about the surgical procedure that my neurologist wanted me to undergo. After the surgery, she would have seizures infrequently instead of constantly. Life became so much easier for her once her seizures decreased to the point where she was almost seizure free.

At age twenty-two, in January of 1995, I finally decided to go for testing. I traveled to Chicago with my fiancée and father to Rush-Presbyterian St. Lukes Medical Center to have the doctors specializing in epilepsy surgery; to test me. According to statistics, of the 150,000 people with epilepsy who are candidates for surgery, only about 1,000 a year have it done. To be a candidate for surgery, they must trace the seizures to one small area of damaged brain tissue and the seizures cannot be controlled with medication. Before pre-surgical evaluation is completed, anti-epileptic drug treatments are fully explored Statistics also show that medication does not work for at least a third of those who have the disorder.

They scheduled me for diagnostic work up at the hospital. Upon admission, they took me to my room where they gave blood tests and hooked me to an EEG for continuous twenty-four hour (EEG) monitoring. They monitor the 24-hours-a-day EEG on an audio-video. A team of registered EEG technologists and electrical engineers maintain the recording equipment. Electrodes always remain attached, but the patient is free to move around the room. They may monitor the patient up to two or three weeks before desired results are conclusive.

One of the doctor’s goals is to find the exact location of the scar tissue damage and the depth of the scar tissue. To do this they gave me a test called the magnetic resonance imaging (MRI). Neuropsychological tests were also done. These are IQ, memory and speech tests. These tell the doctors more about where the seizures, (or the brain damage, that is causing the seizures), are found. They administered many other tests to see if I were a qualified patient for epilepsy brain surgery.

My fiancée and father were great support. They stood by my side day and night. The emotional stress of the tests and thinking that it was a possibility that I could be going through the surgery made me feel terrified. Having my fiancée and father there released so much anxiety and made the whole time at the hospital easier.

The neurologist was unable to tell if the seizures were coming from the left frontal or the left temporal part of the brain. The next test scheduled was minor surgery to evaluate where the scar tissue was located. The anesthesiologist came in to give me an aesthetic and inserted a little too much into my face. My one side of my face became numb and stopped functioning. It was not a big deal. Nevertheless, I became frantic, told my fiancée and father that I had enough, and wanted to go home. I was young at the time and the whole surgery notion was very hard for me to handle. I was not strong enough emotionally to go through brain surgery. When that incident happened, I kept thinking to myself what if something happens to me while I am in surgery. What if they make a mistake? I am so young and I have a whole life ahead of me. Maybe I should be appreciative and be happy with the things God has given me. No matter how easy my fiancée and father made it for me by being there, I could not go undergo anymore testing or surgery. I decided to fly back home the next day.

For me brain surgery was not the answer, but for some it is the solution. Cindy, a wonderful young woman who has shared her epileptic experiences with me, has given some valuable information on brain surgery.

In a study, of eighty-nine patients with medically refractory epilepsy whom they consecutively treated with anterior temporal lobotomy between 1986 and 1990. Dr. Michael R Sperling, reports in the Journal of the American Medical Association (470), that “five years after surgery, of sixty-two patients, followed, 70% were seizure-free, 9% had seizures on fewer than three days per year or exclusively had nocturnal seizures, 11% greater than 8% reduction in seizure frequency and 4% died of causes unrelated to the surgery.

If one were to ask, the people how they feel, most likely, they will say, “never better!” If one asks them if they would go through the surgery again, they will say without a doubt, yes, they would! To meet these people, to see them, to talk to with them, one would never know what they have been through.

When I came home from Chicago, I scheduled an appointment to go see my neurologist. My doctor put me in two research medicine programs. I was about 85% seizure-free at this time. I was in college at this time; I figured this would probably be the best time to participate in new lab research study programs. I would try any new epilepsy medicines that the FDA in the United States has not approved for commercial use and maybe I would get lucky. If these medicines had a positive effect and helped control my seizures then they would sponsor the medication after the study. If nothing good comes out of the lab research programs, this would be the time to start experimenting with new medicines that recently came on the market. I wanted to participate in the research study also because I had tried every medicine on the market and none of them had helped me become seizure free.

One research study I took part in was for Tiagabine H.L. Three hundred patients with partial seizures will took part in this nationwide study. The research study took seven months to complete. The research study was a two-part analysis. They called the one part of the study the baseline phase. This is where one goes for tests to master your level of intelligence and see where your strengths and weaknesses lie.

While I was in this study, they required me to see a neurologist twice a week for examinations and blood tests. I had to keep track of all my seizures by using calendars developed by the study. The calendars would keep track of my seizures to see when I was taking them and the type of seizures I was experiencing. The study consisted of two unrelated types of medicines; Tiagabine and Dilantin. They called this portion of the study the double blind phase. One had no idea what medicine they were going to receive. You received either Tiagabine H.L. or Dilantin. If they gave them Dilantin and the medicine fails, then they would slowly wean the individual off the drug and put them on Tiagabine (which was the experimental drug).

The first medication they put me on was Dilantin. I had developed a strong reaction to the drug. For the first few days, I felt fine on the medication; however, once the medicine began to circulate in my blood stream, I then developed a fever and a horrible skin rash from head to toe. I started to develop cold sores around my mouth and on my tongue. The sores were exceedingly painful. It was so painful that I was unable to eat anything for a week or so. The only thing I could put in my system was water. They put me in bed rest for a couple of weeks. I lost much weight during this time because I was not eating anything.

When they put me on the Tiagabine, I felt optimistic that my seizures were going to get better. My complex partial seizures lessened to focal seizures. I was hoping that the intensity of the seizures would keep decreasing until I became seizure-free on the medicine. During this time, the seizures were so slight I was not even experiencing any memory loss after a seizure or feeling fatigue after encountering a seizure, two side effects I struggled with ever since I developed epilepsy. My memory began to feel sharper and I felt much more energetic. The emotional frustration and pain of having a seizure started decreased and I was finally better able to cope with my epilepsy. My only problem was that my seizures were still occurring two to three times a month.

I decided to try another new medicine that came on the market. I did not want to have even two to three seizures a month, though my side effects from the seizures went away. The reason I started to try all these medicines in the first place was to find a drug that would control my seizures 100 percent. I was very eager to try to find a medicine that would control my seizures. They called the medicine I was about to start Tegretol RX. When I was on Tegretol, I seemed to respond well to the medicine. The only side effect I had on this medicine was that I felt a little tired on Tegretol. I had not experienced any other side effects and the medicine controlled my seizures 90 percent. Tegretol RX was exactly like Tegretol except that it is supposed to stay longer in your blood stream.

My neurologist thought that this medicine would be a good medicine to try. He weaned me off the Phenobarbital I was currently taking at the time and put me on just Tegretol RX with a water pill called Diamox at 250mg.

Diamox is a water pill that relieves fluid from the brain. My neurologist had instructed me to take Diamox four days before and after my ovulation. He also had me take Diamox four days before and after my menstruation process. This is the time when I would accumulate water on my brain, which caused pressure that would cause the seizures to occur.

At twenty-five, Tegretol RX, Diamox and the small dosage of Phenobarbital were controlling my seizures the same as the Tegretol and Phenobarbital, which I was using before. My neurologist had mentioned to me that I should not get discouraged.

These drugs were not good for your body. Phenobarbital is not good because it is a barbiturate. Tegretol is not good because it eats away the liver, muscle and bones. It takes a long time for the side effects of Tegretol to start, but eventually it will affect major parts of your body. I was worried because I started to use Tegretol at the age of nine; it has only been recently since I started to experiment with other drugs. Tegretol helped me the best out of all the other medications, but it did not fully control my seizures.

My neurologist had another research drug that came out that he had access. He suggested that I participate in the study lab research program for Oxcarbazepine, a new medicine that had many positive responses among people with epilepsy in Europe. This study program is similar to the one I mentioned earlier. When they put me on this medicine, I was not 100% seizure free and I still had an average of three complex partial seizures a month. Although I liked this medication better than the Tiagabine. I was feeling even more energetic with the Oxcarbazepine. When they were administering me all the other medications, I had almost the same degree of stamina. The Tegretol RX I tried right before this made me feel the most lackadaisical. I was constantly taking naps. On this medication, I felt no need to have to stop what I was doing because of fatigue. My memory is even sharper on Oxcarbazepine than the Tiagabine. I can respond quicker to things. I feel alive and for the first time in a long time, I can appreciate life and enjoy the wonderful things that life has blessed me. I have a deep sense of care inside myself and I had not felt this way in a long time. I decided that although I am still having seizures, I am not going to stop this medicine. The few seizures I have are worth it, if I feel this wonderful.

When I told my neurologist how I was feeling and the few seizures I was still having monthly he decided to try to combine the Oxcarbazepine with another medication. He wanted to see if two anti-epileptic drugs would control my seizures better.

They called the first medicine my neurologist used Topamax. They gave me 25rng. This medicine did not agree well with my body. The medicine made me feel tired. All I wanted to do was sleep. This medicine made me feel the most fatigued of all the medicines I have attempted in the past. My thinking capacity became much slower and my speech became a little slurred. I was unable to function at work or anywhere for that matter. I was constantly in a daze and felt horrible. There was no way I could have gone through the rest of my life feeling this way. I was in my own little world, unable to enjoy the life that God gave me. Although I was feeling this way, I still felt it was only fair to give my body time to adjust to the medicine. I thought if I gave the medicine time, the side effects would eventually wear off, so I could function better. Six weeks later, I was still having the same side effects. Emotionally, I was not able to continue feeling this way. I spoke to my neurologist and he had me weaned off the Topamax and used Phenobarbital as a second medicine. This combination worked wonderfully. I was still having seizures, yet the intensity of the seizure was decreasing.

It may sound like I have everything under control. It may also sound like epilepsy has not affected my life. However, I will be honest with you; it has been hard to learn to live with epilepsy. I have had my highs and lows. Epilepsy has made me feel depressed at times and has gotten me down.

Sometimes, having epilepsy has made me feel like an outcast. I have realized in the past couple years that you can do anything you want in life, if you try hard enough and put your mind to it. You need to understand that you can become your worst enemy if you let yourself. YOU CANNOT GIVE UP. You need to keep trying until you succeed. Very rarely does anything come easy. The percentage of people that are seizure-free from medications is not that high. Although, there are people out there who are seizure-free due to anti-epileptic medications on the market and this is what we need to focus on. It has been tough for me with all the testing and medical let downs, but I focus on the positive and try to avoid the negative. I have grown as a person from all these experiences both mentally and spiritually.

Mentally it has helped me mature and accept myself for whom I am. Accepting yourself is one of the most important steps to healing. You need to understand that yes, and I have epilepsy and nothing is going to change that fact. Yes, I may find a drug that controls my seizures, but that does not change the fact that I have epilepsy.

Spiritually I have learned a lot about myself; I learned what my wants and what my needs are. I have also learned that one cannot let having epilepsy control their life. Yes, I have epilepsy, but I do not have to stop living. Life goes on! One needs to be proud of who they are.

I am determined to live a normal life. You cannot compare your life to someone else’s life. If you do that, you are going to be unhappy. You need to love yourself and be satisfied with the life you lead and if you are not satisfied than change it! You need to realize also that there are plenty of people who take medicine and many individuals do not drive for lots of reasons. You should not feel ashamed or feel different from others. We all have a special beauty within us. No one is perfect or has a flawless life.

I truly believe that all things happen for a reason. I believe that our lives are planned for us ahead of time. There is nothing wrong with having epilepsy. Epilepsy is something that you should not be ashamed of or hide. Having epilepsy has taught me to appreciate life and appreciate what God has given me. It has helped me develop confidence in myself and to love myself for whom I am. Epilepsy has also made me want to reach out and help others.

Today, at 43 I am seizure-free and I have dovoted my life to helping others.  I have written over 30 books, I am a professional writer and I run a website called The Complete Herbal Guide.  I have devoted my life to helping other and I participate with various groups runed by the Epilepsy Foundation of NJ.

My disorder helped me to realize that we are not perfect, we are the same inside and all roads lead to the same God. By becoming seizure free and over coming my triumphs and battles I have realized that my destiny is to help others through my writing and I'll keep helping others until the big guy up in the heaven says I'm done.  

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