I first began having seizures when I was eleven years old. They were the result of numerous injuries to my head growing up, but one in particular damaged my brain enough to cause the seizure disorder. I was living in Vermont, in another "fixer-upper" with my family, and this place had a 56-stair covered walkway up the side of a mountain to reach the front door. This is the place, below:
Each day my brother and I rode our bikes to school, and when we came home, we were told to bring our bikes up to the second landing to prevent them getting stolen or damaged next to the road. We lived here in the winter of 1990, which was a bad one in Vermont, as most of them are, and the icy conditions led to my fall down that steep first flight of 14 stairs. I was carrying my bike up and slipped, falling backward all the way to the bottom, where my dad's Fiat was parked, and I slammed my head into the passenger door so hard you could have fit a cantaloupe in the dent I made. This resulted in a concussion, according to my symptoms, but we didn't have medical insurance back then, so I was not taken to a hospital. My father didn't even believe me at first that I had dented his car. He laughed it off and told me to head up to my room and relax. I fell asleep, which is not the best idea when you could possibly have a concussion. He of course realized that I was telling the truth the following morning, when he saw his car...
I know all these years later that I must have had a concussion from that impact, because it was soon after this event that I started to experience absence seizures. Absence seizures are different from tonic clonic, or grand mal seizures, in that you do not fall to the ground and twitch uncontrollably during an absence seizure. It basically appears as if the person is daydreaming, or just staring off into space for 10-15 seconds, sometimes up to a minute. My eyes tend to roll up into my head a bit, as well, when I am having them, but mostly there is little visible sign that anything is wrong. My parents noticed I was having these "staring spells," or as they called it "zoning out," some time later, in the Spring of 1991. I had already noticed headaches, dizziness, and bouts of moodiness before they brought the staring spells to my attention. I was always a stubborn, proud child, and quite vehemently refused to acknowledge that anything was wrong. My stepmother, who is always very pro-active when it comes to all things health-related, took it upon herself to discover what was happening to me, and her research led her to believe I was experiencing a reaction to preservatives and additives in food. She put me on a macrobiotic diet which eliminated anything artificial, and was very similar to the ketogenic diet recommended to epileptics. It was low-carb, high (good) fat, and completely free of food dyes, sugary substitutes, preservatives like MSG or BHT, or any other synthetic additives. This worked fairly well to control my “staring spells” for nearly a year, but every time I slipped and ate at a restaurant, or had some popcorn at the movies, I would fall right back into the spells. It got so bad that they eventually did take me to see a neurologist, and that is when I was first officially diagnosed with epilepsy, and began taking Depakote.
This drug was very detrimental to my young developing body. I hated taking it from day one, and it caused a myriad of side effects, some of which I still suffer today. I took Depakote for ten years, through my puberty and into my early 20s. I struggled with weight gain, insomnia, bleeding ulcers, nausea, vomiting, loss of appetite, dizziness and blurred vision, to name a few. It also wrought havoc on my menstrual cycle. I was very late in getting my first period, which could have been purely biological, but the Depakote caused my cycle to be completely random and unpredictable. I suffered my first grand mal seizure as a result of missing a few days of this drug, when I was 16. Again, the lack of insurance caused us to spend hundreds each month on my medication, and one month we just didn't have enough. I went the weekend without my pills, and Monday happened to be a holiday, so I was unable to get the pills until Tuesday. I was on my first date with a guy my friend had hooked me up with, and had a grand mal in his car. We stopped at a stoplight, and I blacked out. According to my friend, I suddenly went rigid, then thrashed violently, sputtering foamy drool all down my shirt, and he pulled into a gas station and called an ambulance while I was convulsing in the car. I woke up in the parking lot adjacent to the gas station, with an ambulance EMT at my side. I was very disoriented, and became violent, screaming at the people who were helping me until my father came to escort me home. Nice first date, I thought. There was not another after that.
I was better at taking my pills after this happened, but fear had taken over as my reason for doing so. I was afraid of having another grand mal, because they are truly horrible. You feel rotten for days afterward, like you just got over a bad flu, and it takes forever to recover mentally from the fog that envelops you during a major seizure. Some epileptics have grand mals all the time, for which I have no end of sympathy, and I count myself lucky for having a less severe form of the disorder, but every time it has happened to me, it leaves me feeling terror and pain and confusion.
I was better at taking my pills after this happened, but fear had taken over as my reason for doing so. I was afraid of having another grand mal, because they are truly horrible. You feel rotten for days afterward, like you just got over a bad flu, and it takes forever to recover mentally from the fog that envelops you during a major seizure. Some epileptics have grand mals all the time, for which I have no end of sympathy, and I count myself lucky for having a less severe form of the disorder, but every time it has happened to me, it leaves me feeling terror and pain and confusion.
I did not experience another grand mal until I was 20 years old. I was living in Missouri at the time, and working as a telemarketer. I was at work feeling ill and dizzy, but I had not had enough grand mal seizures yet to recognize an aura when it happened, so there was no warning when I fell face first into the floor of the hallway, walking back from break. I knocked out two of my front bottom teeth, and woke up covered in blood and very confused. Not a single person at that job had a clue what to do for someone having a seizure, and someone had tried to hold my tongue, or pry open my mouth, (I don't know exactly what happened,) but I was choking on my own blood and saliva when the ambulance arrived. That was the very first job I ended up leaving in an ambulance.
The time had come for me to try a new medication. I went to a neurologist to consult her on different options for me, because the Depakote never really stopped me from having petit mal seizures, and now it was allowing larger seizures to break through as well. This neurologist was someone who I feel damaged me forever. She proceeded to use me as a guinea pig for every drug in the book. This period of my life has been all but wiped from my memory by the selfsame drugs that were supposed to be helping me. I know I was put on Lamictal, Gabapentin, Clonazepam, Neurontin, Keppra, and Topamax one at a time, with very short weaning periods. None of them stopped the breakthrough seizures I have always had around my menstrual cycle. Some of the side effects were severe. Keppra induced psychotic rage and manic depression. Clonazepam made me so tired I couldn't function. Lamictal gave me a rash and made me too dizzy to walk. Topamax, however, was by far the worst. I vomited nonstop, losing 60 pounds in two months. I was the thinnest I have ever been in my life, but I was throwing up blood and couldn't speak or think properly. I lost my memory then. I couldn't remember my name half the time, or my birthdate. I used to speak both Latin and French, but that was wiped out, along with most of my knowledge of historical dates and events, along with my personal history. So much of that has never returned. My memory, once so crystal clear, is now shrouded in an impenetrable fog forever. I have had to re-learn the things I knew in high school, and have had to ask my friends and family about events in my life to attempt to recapture some of the memory. It is hell, and it is omnipresent. I know I am an intelligent woman, but living with memory loss on a large scale makes one feel extremely inept. I have that memory loss and cognitive difficulty still to this day. After two rounds of Topamax, it was at my mother's insistent urging that the doctor finally put me on a less dangerous medication called ethosuximide, or Zarontin.
The time had come for me to try a new medication. I went to a neurologist to consult her on different options for me, because the Depakote never really stopped me from having petit mal seizures, and now it was allowing larger seizures to break through as well. This neurologist was someone who I feel damaged me forever. She proceeded to use me as a guinea pig for every drug in the book. This period of my life has been all but wiped from my memory by the selfsame drugs that were supposed to be helping me. I know I was put on Lamictal, Gabapentin, Clonazepam, Neurontin, Keppra, and Topamax one at a time, with very short weaning periods. None of them stopped the breakthrough seizures I have always had around my menstrual cycle. Some of the side effects were severe. Keppra induced psychotic rage and manic depression. Clonazepam made me so tired I couldn't function. Lamictal gave me a rash and made me too dizzy to walk. Topamax, however, was by far the worst. I vomited nonstop, losing 60 pounds in two months. I was the thinnest I have ever been in my life, but I was throwing up blood and couldn't speak or think properly. I lost my memory then. I couldn't remember my name half the time, or my birthdate. I used to speak both Latin and French, but that was wiped out, along with most of my knowledge of historical dates and events, along with my personal history. So much of that has never returned. My memory, once so crystal clear, is now shrouded in an impenetrable fog forever. I have had to re-learn the things I knew in high school, and have had to ask my friends and family about events in my life to attempt to recapture some of the memory. It is hell, and it is omnipresent. I know I am an intelligent woman, but living with memory loss on a large scale makes one feel extremely inept. I have that memory loss and cognitive difficulty still to this day. After two rounds of Topamax, it was at my mother's insistent urging that the doctor finally put me on a less dangerous medication called ethosuximide, or Zarontin.
I have come to grips now with the loss of my memory, but occasionally I still feel pain and longing for what is missing from my brain. I still suffer short term memory problems, and I still get confused about things that happened to me throughout my childhood. Most of my teen years are now just flashes of moments that I saw in pictures, and only a few memories remain intact. The Zarontin worked better for me for the next ten years of my life. I still had breakthrough seizures on my period, that never changed, but it seemed to have less side effects overall than any of the others I had tried. Apart from the persistent insomnia, nausea and stomach ulcers, that is. I supposed after the severe vomiting caused by the Topamax, a little stomachache was a welcome change. During the time in Missouri that the meds were being switched around so often, I lost count of how many grand mal, complex partial, myoclonic, or absence seizures I had. It was like a tornado of misery, an apt analogy for where I was living, in tornado alley.
So begins the next decade of my life, on Zarontin. I got pregnant for the first time when I was 23, and was on that medication during my pregnancy. My son was born at 33 weeks. He was 3 pounds, 7 ounces, and only 16 inches long. He was in the NICU for the longest five weeks of my life. He was badly jaundiced, with underdeveloped kidneys, and had to have a blood transfusion when he was 3 weeks old. After that, he improved. He came home when he was 4.6 pounds, still tiny, but stable and healthy. He was on a sleep monitor for the first year of his life to prevent SIDS. It used to wake me with an insanely loud screech whenever he shifted in his sleep, or stopped breathing for even a moment. Though he made it safely through that first year, I will never forget how scary it was to have a premature baby. Or how much I blamed myself for being so ill-suited to childbearing.
Within six months of giving birth to my son, Damian, I found out I had cervical cancer. This, or my epilepsy, or the medication, or a combination of the three could have been the cause of my premature delivery. No one could be definitive on the subject. Although I had told doctors many times about my crazy menstrual cycle, excruciating cramps, and PMDD symptoms, every doctor I had been to claimed there was nothing wrong with me. It was my midwife who found the cancer at my post-natal checkup. Worst phone call I ever received. The office called to simply tell me I had to come back in, not giving me any information over the phone, but hinting at the seriousness of my immediate arrival in their office. I went in on the following day, to be told I had advanced abnormal cell growth that showed up on the pap smear. Thus began my battle with cancer.
So begins the next decade of my life, on Zarontin. I got pregnant for the first time when I was 23, and was on that medication during my pregnancy. My son was born at 33 weeks. He was 3 pounds, 7 ounces, and only 16 inches long. He was in the NICU for the longest five weeks of my life. He was badly jaundiced, with underdeveloped kidneys, and had to have a blood transfusion when he was 3 weeks old. After that, he improved. He came home when he was 4.6 pounds, still tiny, but stable and healthy. He was on a sleep monitor for the first year of his life to prevent SIDS. It used to wake me with an insanely loud screech whenever he shifted in his sleep, or stopped breathing for even a moment. Though he made it safely through that first year, I will never forget how scary it was to have a premature baby. Or how much I blamed myself for being so ill-suited to childbearing.
Within six months of giving birth to my son, Damian, I found out I had cervical cancer. This, or my epilepsy, or the medication, or a combination of the three could have been the cause of my premature delivery. No one could be definitive on the subject. Although I had told doctors many times about my crazy menstrual cycle, excruciating cramps, and PMDD symptoms, every doctor I had been to claimed there was nothing wrong with me. It was my midwife who found the cancer at my post-natal checkup. Worst phone call I ever received. The office called to simply tell me I had to come back in, not giving me any information over the phone, but hinting at the seriousness of my immediate arrival in their office. I went in on the following day, to be told I had advanced abnormal cell growth that showed up on the pap smear. Thus began my battle with cancer.
With cancer, there are no easy solutions. There are sleepless nights, and endless worry. Your family and friends ask you every day if you are all right, when all you can do is cope with the fear and panic by trying not to think about it. No matter what your stage or type of cancer, you can be reasonably sure that with a diagnosis, something possibly dangerous to your overall health is imminent. Whether it be surgery, chemotherapy, or radiation, or one of several other invasive therapies, you realize you will have to undergo a frightening process if you want to get healthy again. When I was diagnosed, I started seeing a new doctor, recommended to me by my cousins, who had been seeing him for years. Dr. Dwight Im, who is a world renowned Gynecologist, and the Director of the Gynecologic Oncology Center at Mercy Hospital, in Baltimore, MD, as well as a pioneer in robotic surgery, was the man who effectively rid me of my cancer early in 2004. I was extremely lucky, because we caught it early enough for surgery to be a viable option. I underwent a LEEP procedure to remove most of my cervix, which Dr. Im performed expediently and expertly, and so far, it has worked. The laser surgery removed the cancer cells, and I have been in remission since. It was one of the few lucky breaks I got in my health over the course of my life.
I resumed my life with a much-altered perception of my mortality. I did my best then to cherish every moment, to hug my baby more, and to tell my family I loved them as often as possible. I was renewed, in a sense, and wanted so much to get back to work, and build a life for my son. In March 2005, I found a great job that I loved, working in a children's residential treatment facility as a receptionist and executive secretary. Being around those children was difficult at times, because they were all traumatized in some way or another, but it was a very rewarding job. At first, I did not work directly around the kids, because as a residential treatment center, they were sequestered into apartments within the building, and I was up at the front desk monitoring the comings and goings of staff and visitors. Gradually, though, I began taking on more duties, earning more money, and becoming more a part of that place. I used my artistic skills to paint murals in the locked ward of the facility, trying to brighten up the lives of the more severely disturbed children. I also won the right to organize the annual summertime event held every year since the facility opened with my proposal for a Summer Luau. Several other people were vying for the extra work, because it meant a big bonus to the paycheck, but I won the bid because I have had experience doing event-planning, and had the best proposal. I greatly enjoyed all this extra work, and my boss started grooming me to take on even more responsibility. A recently-vacated position opened up to be in charge of supplies, vehicles, phones, basically everything that made the place run, and my boss gave the job to me. Thrilled, I tried to do my very best to fill my predecessors shoes, as she was very good at her job. I think I succeeded, perhaps even surpassed her in some areas.
Unfortunately, during this time of progress I overworked myself. I was working 60 hours a week or more doing three different jobs at the RTC. I had also picked up a graphic design gig on the side, drawing monkeys for t-shirts, which took up much of my time at home. It all started to take a toll on me. I wasn't sleeping more than two or three hours a night, because the stress kept me from shutting down. My home life suffered. My son had slept through the night since he was five months old, so the only person awake at night was me. This left me alone with my thoughts, which added more stress, and eventually started to cause more seizures. I would have clusters of dozens of petit mals every morning, and every night. The insomnia got so bad there were days I did not sleep at all. I finally had to bring it to the attention of my neurologist. She decided to add Clonazepam to my medications. I agreed because I so desperately needed to sleep. After months of chronic sleeplessness, you are pretty much willing to try anything.
As I mentioned before, Clonazepam makes me very tired. Yes, I am able to sleep, but waking up is a challenge. For a few weeks, after beginning the medication, I was able to recuperate somewhat from the months of insomnia. My waking hours, however, were foggy and uncertain. My job suffered, because lapses in concentration or judgment can be very problematic when you have a lot of responsibility. As the Summer Luau I had organized came closer, I became increasingly concerned about being alert and active on the day of the event. The night before my big day, I skipped my Clonazepam, in the hopes that I would be able to think more clearly, and be more capable of performing my functions as event coordinator. People were relying on me to be sharp and organized, but skipping a pill had some disastrous consequences.
Little did I know that once an epileptic goes on Clonazepam, they cannot miss a dose or it will trigger a grand mal. I found out the hard way. At about 5 am, the morning of the Luau, I had a four-minute long grand mal in my home. I know from my family that it happened in my bed, and that I was not injured, thankfully, but everything else about that day is a complete blur. I know I forced myself an hour after this devastating seizure to go to work, and to function adequately throughout the day. I remember my mother bringing my son to the party, and letting him play on the bouncy house I rented for the kids. I remember that it rained out the event for the first time in over a dozen years, and that my contingency plan for an indoor festival came off without a single hitch. I barely remember the performance of the Hawaiian dance troupe I hired for the entertainment. These "memories" are brief, hazy flashes that comprise maybe 60 seconds of actual memory from the 10-hour shift I put in that day. I honestly, to this day, do not know how I managed it. I walked through the day in an engulfing haze, going through the motions I had planned so thoroughly. Had it not been for my exceedingly anal retentive tendencies regarding event-planning, the day would have been entirely different. There is no way I would have been able to handle unforeseen hiccups if I had not had a Plan B already written out, printed, copied, and distributed to every adult involved. Everyone with a binder had the plan in front of them, and was able to make that day wonderful for those kids without too much assistance from me. I was completely exhausted by the end of that day, and slept through most of the weekend afterwards.
Little did I know that once an epileptic goes on Clonazepam, they cannot miss a dose or it will trigger a grand mal. I found out the hard way. At about 5 am, the morning of the Luau, I had a four-minute long grand mal in my home. I know from my family that it happened in my bed, and that I was not injured, thankfully, but everything else about that day is a complete blur. I know I forced myself an hour after this devastating seizure to go to work, and to function adequately throughout the day. I remember my mother bringing my son to the party, and letting him play on the bouncy house I rented for the kids. I remember that it rained out the event for the first time in over a dozen years, and that my contingency plan for an indoor festival came off without a single hitch. I barely remember the performance of the Hawaiian dance troupe I hired for the entertainment. These "memories" are brief, hazy flashes that comprise maybe 60 seconds of actual memory from the 10-hour shift I put in that day. I honestly, to this day, do not know how I managed it. I walked through the day in an engulfing haze, going through the motions I had planned so thoroughly. Had it not been for my exceedingly anal retentive tendencies regarding event-planning, the day would have been entirely different. There is no way I would have been able to handle unforeseen hiccups if I had not had a Plan B already written out, printed, copied, and distributed to every adult involved. Everyone with a binder had the plan in front of them, and was able to make that day wonderful for those kids without too much assistance from me. I was completely exhausted by the end of that day, and slept through most of the weekend afterwards.
Pictured above is one of the T-shirts I designed and had printed
for the event. I still have it a decade later.
for the event. I still have it a decade later.
I was rattled by the grand mal, having had a respite from them for almost 4 years. I went right back to my neurologist and asked her to take me off the Clonazepam, because I did not want to risk that happening again. I had a baby to take care of. What if I forgot a dose again, and was holding my child the next morning when a seizure struck? What if I forgot a dose, and was crossing the street to catch the bus when a seizure struck? Thoughts like these raged in my mind and caused so much fear in me that I would rather risk sleepless nights for my foreseeable future rather than tonic clonic seizures occurring any time I was forgetful, which, as any epileptic can tell you, is a frequent problem.
She told me that weaning off the Clonazepam would be a lengthy and unstable process. There was no guarantee that I would not experience more grand mal seizures while I was weaning myself off the drug, no matter how slowly or carefully we did it. She tried to talk me out of it, keep me on the drug. She only agreed to a six-month weaning regimen after my unrelenting insistence. I did not want to be on something that was so volatile, that could cause me to seize if I missed a dose. Even after 15 years of being on medication, I was not always great at remembering to take it, and I couldn't take the risk.
Over the next few months, we reduced the Clonazepam by incremental degrees. I did indeed experience more seizures, and a few grand mals during this time. I learned to understand my aura, (the precursor to a big seizure, where an epileptic feels it coming on by certain cues in their physiology), and each time I felt something coming, I got to a safe place in time to avoid serious injury. I got married to my son's father, in October of that year, and he also did what he could to keep me from harm. It was during the final stages of the weaning that disaster struck once more.
Winter had come, and I was still working around 40 hours per week, but I had started missing days more and more often due to the seizure activity. I received a written warning at the start of 2006, letting me know they were ill-pleased with my absences. At this time, I took it upon myself to print out information and collect brochures about epilepsy to hand out to my co-workers and supervisors. I was not looking for special privileges, but I was hoping for some understanding as I was switching medication. I wanted people to understand that this was a temporary situation, and that I should be better when the process was over. I was run-down, foggy, and slow, whereas I used to be much more efficient in completing my tasks. I knew it was affecting my job, but there was nothing I could do about it except to explain myself as thoroughly as I could. My body was my prison, and I couldn't shake the feeling of impending doom lurking around the corner.
Finally, in February of 2006, it happened. I was at the front desk, doing my reception duties, when I felt a distinct aura that a seizure was coming. I immediately called my supervisor, and told her I had to go home. I explained in no uncertain terms that I felt a seizure coming on, but as with most people, she neglected to respond to the urgency of my claim. I called her over and over and told her I couldn't be there any more. I was feeling loads of seizures, one after the other, for almost an hour, before she finally pulled someone from downstairs to cover my desk. With relief and trepidation, I asked a girl from my office to walk me to my mother's car, when she pulled up about 120 feet away from the front door. That walk appeared so very long to me that day. The girl I was walking with failed to catch me when I fell, ten feet from the car, and into the pavement. She stared in shock and disbelief as I slammed my face into the ground again and again, in the throws of the longest seizure I had ever experienced. My mother, who is a nurse, rushed forward from the car, but it was too late to save my face. She cradled my head in her lap, bleeding everywhere, and had the dumbstruck girl call an ambulance while she timed the seizure. According to her it was at least ten minutes long. I woke up in a screaming ambulance on the way to the hospital, to realize my worst nightmare. My teeth had all been shattered, and my lips were torn and shredded from the impact into the sidewalk. I had shards of my teeth embedded in my lower lip, which had to be removed before they put a line of ten stitches in my lip to close up the gaping hole that was once a pretty mouth. To this day I can still feel the lump of scar tissue rimming my lower jaw every time I run my tongue around my mouth.
Nothing can describe the horror and mortification an epileptic goes through when they get seriously injured from a seizure. The worst part is, you are unaware of actually being injured. You simply wake up from the seizure with blood flowing and bones broken, without a clue as to how you ended up that way. It can take hours, or even days, for you to even realize you had a seizure. They are so disorienting that you generally don't understand for quite a while how injured you are. The worst part is, people around you tend not to understand at all, and in fact prefer not to think about what happened to you, because it is easier for them to say, "Oh just forget about it," than to face the reality that you are completely damaged from the few minutes your consciousness was obliterated. While they go on about their lives, trying to forget that "freaky" scene in the parking lot, you are faced with the mirror every day, faced with the fading bruises, healing cuts, and eventual scars that mark you as being different from the rest of them.
This event marked the conclusion of my time at my most favorite job. I underwent several reconstructive surgeries on my teeth, and my mouth, to attempt to return it to what it once looked like. In the interim, however, I looked like a medieval gargoyle, with shards of broken front teeth causing me to never smile for fear of the recoil I was sure to witness if I bared my mouthful of fangs. I tried to return to work with my head held high, and tried to hand out more pamphlets to ease the trauma those who had witnessed my fall felt at my presence. It was to no avail. A month after my seizure, a few days before I had reached one year in the employ of this company, I was fired for incompetence. I tried to fight it legally, but the company had a one-year probationary policy for new hires, so I fell into their discretionary period, and could be let go for any reason. No lawyer was willing to take my case, and I was once again thrust into the morass of unemployment.
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A few months later, after I had fully weaned off of the Clonazepam, when I felt I could return to work, I found a job at a High's convenience store a few blocks from my house. Unfortunately, it was a minimum-wage, part-time job, which was insufficient to recover my lost months of wages, or to sustain me on my own. I lost my apartment, and had to move back in with my mother. My husband, son, and I moved into her 8'x10' den in a one-bedroom apartment, with a futon on the floor, and a small tv in the corner. All of our belongings had to be put into storage, and eventually sold. I was to remain in that little den until 2008.
In the fall of 2006, I decided to try once again to be a contributing member of society. I found an overnight job at an alarm-monitoring company, figuring that since I never slept anyway, I could at least make money while I was up all night. I would be able to spend the days with my son, and sleep in the evenings before work. I was only there a couple of weeks before things started getting difficult once again. I discovered I was pregnant with my second child, after a few bouts with morning sickness prompted me to go to my doctor. This pregnancy was as much of a surprise as the first one, because my husband and I used protection. I was on birth control pills, but for me they were always iffy, as they had a slew of side effects of their own, and I was in between switching brands of pill when I got pregnant.
The morning sickness became all-day sickness, until I was unable to hold down any food at all. I started to lose weight, rather than gain it. I had bouts of dizziness and double-vision, hot flashes, and was unable to sleep at all. About five weeks into my new job, I experienced a complex-partial seizure at work, and had to leave that job in an ambulance as well. They were very understanding, having hired me knowing of my condition, and giving me a chance anyway, but they asked me to resign because they needed someone reliable, and that was not me. I understood, although I was devastated at being let go again because of my condition. It was the last time I have ever held a real job.
At home, I proceeded to get worse, starting to vomit blood from a torn esophagus and damaged stomach lining. I could not hold down my medication, the ethosuximide I was still taking at the time. I worried about the effects it would have on my unborn child, and I worried that my cervix would be incompetent to hold the baby in my womb. The worry only made the symptoms more pronounced. There were nights that I felt I would not wake up in the morning, and there were moments when I was in agony with cramps, and would bleed afterwards, increasing my fear that a miscarriage was imminent. I experienced worsening nausea, dizziness, and seizure activity over the next two months, losing almost 20 pounds during the first trimester. I saw my doctor every two weeks, and was put on a medication to stem the nausea, so that I could hold food down, but it didn't work. To make a long and painful story short, I had to terminate my pregnancy at 18 weeks. I made this incalculably difficult decision because I was very unsure if either the baby or myself would survive this pregnancy. Or if we survived at all, what would the long-term effects of my illness have on my daughter? Yes, I knew it was a girl, I was into my second trimester, and no, I have never gotten over her loss.
I had to go to an abortion clinic for this procedure, because my gynecologist, Dr. Im, worked at a Catholic hospital, and was not allowed by their regulations to perform the termination. With his eyes full of sympathy, he directed me to a Planned Parenthood office in Baltimore. I will never forget that day as long as I live. There were two teenage girls there, bragging that this was their second or third abortion, giggling as if it were all good fun, while I sat there crying hysterically one minute, and sitting in numb silence the next. To this day, I still cannot watch Pirates of the Caribbean, because that movie was playing in the waiting room as I sat there awaiting my daughter's doom. I lost my daughter, and there is no balm for that pain. Knowing that I made the right decision, to keep myself alive for my son, to keep my daughter from being born damaged or worse, doesn't assuage the long-term regret and misery that one decision caused me. Sometimes, I wish my brain would wipe out that particular memory, as it has so many others, but this one, it holds onto with morbid relish. I had lost my baby, and I had lost my job, and eventually, I also lost my husband.
It took me a long time to recover from this latest surgery physically, and an even longer time to recover mentally from losing my little girl. Immediately I stopped throwing up, and although relieved, it caused severe bouts of depression. I felt intense guilt and anguish over losing my baby. Guilt because I had to choose myself over her, because I was so incompetent as a mother, and anguish over my son never knowing what it was like to be a big brother. I decided to undergo another surgery, a tubal ligation, to prevent this type of pain from ever happening to me again, so that eliminated any chance that my son would be a big brother to anyone. This still hurts me when I think about it too much. My relationship with my husband fell apart, and we split up a few months later. I was inconsolable for a long time, and it was very difficult to maintain any relationships while I mourned. My son still talks to his father, but he lives in the Midwest, so they have not seen each other since.
Several more big seizures occurred while I was living with my mother, one of which happened in 2007, when I was alone with my son, while my mother was at work. He was four years old at the time, and came into the bathroom to find me bloodied up and twitching on the floor, having fallen off the toilet, and smashing my reconstructed face off the corner of the sink. My four-year-old child had the wherewithal to call an ambulance. This trauma, I fear he will never outlive. I again woke up with an EMT standing over me, half-naked on the floor, wedged between the laundry basket and the tub, bleeding from my upper lip, which had been ripped in half by the sink. Another dozen stitches and a permanent change to my appearance were the result of that last seizure. It was in fact the last major seizure I have had to date. I experienced one more grand mal early in 2008, but it was not as severe, and I sustained no injury.
In October of 2008, I moved to Bremerton, Washington, just across the Puget Sound from Seattle. This marked the biggest change in my life. Moving 3,000 miles from the east coast was just what I needed to start afresh, beginning a new life with my son. I found new doctors, that were willing to be open-minded about my treatment. Washington State has medical cannabis, and I was able to see a doctor who prescribed it to me right away. This was truly the first medication I had ever taken without side effects, and that worked to control my seizures. It also eliminated the nausea and constant stomach pain I experienced from the Ethosuximide. I was finally under control, and beginning to believe I could be normal. I started to work for a friend at her clothing store, part-time for cash, because I was unable to find employment anywhere with my history. I also cleaned houses once or twice a week for cash, to make ends meet. I did a fairly good job of it, with help from my mother and the annuity she received after my grandmother's passing, the entire time I lived in Washington. I was able to successfully garner disability after a three-year legal rigmarole which left me with a reasonable income to keep a roof over our heads and food in our bellies. It wasn't awarded to me until June of 2011, but in the hiatus between application and dispensation, Washington has really amazing financial aid programs out there for the disabled, and any time I fell short on the bills, I was able to get assistance to cover them.
With the addition of THC to my medications, I was finally able to breathe a sigh of relief. I stopped having even the petit mal seizures as often, and was able to quell them when they occurred with an extra dose of cannabis oil, or by smoking. I finally decided to stop taking my pharmaceutical medication, ethosuximide, in 2011, after winning my disability allowed me to reduce my financial stress. This is not a decision I came to lightly, because I had an abiding fear of my disorder by this time in my life, but I also had a conviction that it was the medication I had been on for twenty years that caused the worst of my symptoms and seizures. I did not do this with the blessing of my neurologist, but rather with his disapproval. I still decided to do it.
I had learned about weaning off of medication from the many times it had been done to me over the years, and I weaned myself off very gradually. It took me about eight months before I finally took my last pill in March of 2012. It coincided with the start of a new relationship, with my current fiancee, John, along with moving to a new condo, and starting my son at a new school. All these good things happened in the beginning of 2012, and I was happy then, for a while. I still had petit mal seizures around my period and ovulation, which is when I have always had breakthrough seizures on any medication, but I was content with my choice to use cannabis as my sole means for controlling my disorder. It was working.
In October of 2008, I moved to Bremerton, Washington, just across the Puget Sound from Seattle. This marked the biggest change in my life. Moving 3,000 miles from the east coast was just what I needed to start afresh, beginning a new life with my son. I found new doctors, that were willing to be open-minded about my treatment. Washington State has medical cannabis, and I was able to see a doctor who prescribed it to me right away. This was truly the first medication I had ever taken without side effects, and that worked to control my seizures. It also eliminated the nausea and constant stomach pain I experienced from the Ethosuximide. I was finally under control, and beginning to believe I could be normal. I started to work for a friend at her clothing store, part-time for cash, because I was unable to find employment anywhere with my history. I also cleaned houses once or twice a week for cash, to make ends meet. I did a fairly good job of it, with help from my mother and the annuity she received after my grandmother's passing, the entire time I lived in Washington. I was able to successfully garner disability after a three-year legal rigmarole which left me with a reasonable income to keep a roof over our heads and food in our bellies. It wasn't awarded to me until June of 2011, but in the hiatus between application and dispensation, Washington has really amazing financial aid programs out there for the disabled, and any time I fell short on the bills, I was able to get assistance to cover them.
With the addition of THC to my medications, I was finally able to breathe a sigh of relief. I stopped having even the petit mal seizures as often, and was able to quell them when they occurred with an extra dose of cannabis oil, or by smoking. I finally decided to stop taking my pharmaceutical medication, ethosuximide, in 2011, after winning my disability allowed me to reduce my financial stress. This is not a decision I came to lightly, because I had an abiding fear of my disorder by this time in my life, but I also had a conviction that it was the medication I had been on for twenty years that caused the worst of my symptoms and seizures. I did not do this with the blessing of my neurologist, but rather with his disapproval. I still decided to do it.
I had learned about weaning off of medication from the many times it had been done to me over the years, and I weaned myself off very gradually. It took me about eight months before I finally took my last pill in March of 2012. It coincided with the start of a new relationship, with my current fiancee, John, along with moving to a new condo, and starting my son at a new school. All these good things happened in the beginning of 2012, and I was happy then, for a while. I still had petit mal seizures around my period and ovulation, which is when I have always had breakthrough seizures on any medication, but I was content with my choice to use cannabis as my sole means for controlling my disorder. It was working.
After taking that last pill, I was very nervous about ever running out of my alternative medication, and although it may be legal in Washington State, it was not covered by medical insurance. I was hard-pressed to keep myself in supply of this expensive medicine, as well as keep my bills paid and the fridge full. My fiancee helped quite a bit during that time, but the cost quickly took its toll on us both, and we eventually had to face the realization that I just could not afford it. Six months after I had taken my last dose of ethosuximide, and been relatively seizure-free and healthy for the years I had spent in Washington, I was faced with having to move again to be able to survive. My fiancee is also from the east coast, and his family lives in Northeastern Pennsylvania, which is not a medical marijuana state, but was our only real choice to move to in our time of need. He had been unable to find employment in Washington, and he wanted to bring me back to his hometown to try to get a fresh start where he was in familiar territory.
I must say, this is one of the hardest decisions I ever had to make in my life, including those I have already mentioned. For four years, I had been in a place that I loved, that made me happy, and where I felt I belonged. I had discovered that I was able to be normal, like anybody else, when I had access to a certain medicine that was illegal elsewhere. I had weaned myself off the medication that I thought was detrimental to my health, and was unwilling to go back on it. I had to make a choice between losing my relationship and quite possibly my home, along with my possessions, or moving back to the east coast, and conceivably losing my newfound health. Many screaming matches, bouts of tears, and ultimatums later, my fiancee and I started planning to return to his hometown in Pennsylvania.
I tried very hard to be optimistic about the move, but in my soul I was full of trepidation and sadness. I longed for an easier solution, where I could stay in Washington, and continue as I had the past few years, without losing either my relationship, or my home, or my medicine. I wished for a lottery win, or a random bequeathing of a fortune, to bail me out of having to make this change. Nothing miraculous happened, and with a heavy heart, I said goodbye to my Port Orchard condo, and climbed into a Penske truck for the road trip that returned me to the east coast. The trip itself was stressful and exhausting, and many bad omens occurred that left me with an even more pronounced feeling of disquiet.
We arrived at his father's house in October of 2012, and we were there maybe a week before we realized we had made a terrible error in judgment coming back at all. I did not feel welcome in his father's home, and his father seemed to feel a great imposition at our presence there. It was tense and unpleasant, and got worse as the weeks passed. Every day it seemed there was some argument or another, or some nasty words spoken. My seizures were coming more frequently and lasting longer, and I was out of medication. I tried to make things work out, using all my skills at people-pleasing that I could muster, but it just was not to be. We remained there for five weeks, before a major blowout happened between us, due to the levels of stress we were both feeling at the time, and not in small part by my terrified rage and mood swings that became my constant companion after I ran out of my medicine, and started seizing again nonstop. I was in perpetual migraine pain, out of my element, in a place that was too remote to be accessible to someone without a driver's license, and my patience was worn thin by the ceaseless petit mals that plagued me day and night. This eruption between us was enough to make me leave with my son and return, once again, to my mother's little apartment in Baltimore.
It was a different little apartment, to be sure, she had moved to the Loch Raven area while I was out west. She had also lost her nursing job after two unsuccessful back surgeries left her right hand paralyzed and her body wracked with constant pain. She was also now on disability, and unable to get around her own little apartment. I did my best to clean the place up and organize her things while I was there. I rid the house as best I could of the chronic mice infestation that so plagues Baltimore housing, and I washed all her linens and clothing to get her feeling better. Even while I was going through my own personal hell with migraine pain, and seizures, I did everything I could to make my stay with her as pleasant as possible. I knew, though, that this was also not the right place for me, or for my son. Once again, we were living in a one-bedroom place with my mother, our cats had to stay with my fiancee and his father, and all our belongings as well. We had lost everything, and were both desperately miserable. I wanted nothing more than to change that reality.
I must say, this is one of the hardest decisions I ever had to make in my life, including those I have already mentioned. For four years, I had been in a place that I loved, that made me happy, and where I felt I belonged. I had discovered that I was able to be normal, like anybody else, when I had access to a certain medicine that was illegal elsewhere. I had weaned myself off the medication that I thought was detrimental to my health, and was unwilling to go back on it. I had to make a choice between losing my relationship and quite possibly my home, along with my possessions, or moving back to the east coast, and conceivably losing my newfound health. Many screaming matches, bouts of tears, and ultimatums later, my fiancee and I started planning to return to his hometown in Pennsylvania.
I tried very hard to be optimistic about the move, but in my soul I was full of trepidation and sadness. I longed for an easier solution, where I could stay in Washington, and continue as I had the past few years, without losing either my relationship, or my home, or my medicine. I wished for a lottery win, or a random bequeathing of a fortune, to bail me out of having to make this change. Nothing miraculous happened, and with a heavy heart, I said goodbye to my Port Orchard condo, and climbed into a Penske truck for the road trip that returned me to the east coast. The trip itself was stressful and exhausting, and many bad omens occurred that left me with an even more pronounced feeling of disquiet.
We arrived at his father's house in October of 2012, and we were there maybe a week before we realized we had made a terrible error in judgment coming back at all. I did not feel welcome in his father's home, and his father seemed to feel a great imposition at our presence there. It was tense and unpleasant, and got worse as the weeks passed. Every day it seemed there was some argument or another, or some nasty words spoken. My seizures were coming more frequently and lasting longer, and I was out of medication. I tried to make things work out, using all my skills at people-pleasing that I could muster, but it just was not to be. We remained there for five weeks, before a major blowout happened between us, due to the levels of stress we were both feeling at the time, and not in small part by my terrified rage and mood swings that became my constant companion after I ran out of my medicine, and started seizing again nonstop. I was in perpetual migraine pain, out of my element, in a place that was too remote to be accessible to someone without a driver's license, and my patience was worn thin by the ceaseless petit mals that plagued me day and night. This eruption between us was enough to make me leave with my son and return, once again, to my mother's little apartment in Baltimore.
It was a different little apartment, to be sure, she had moved to the Loch Raven area while I was out west. She had also lost her nursing job after two unsuccessful back surgeries left her right hand paralyzed and her body wracked with constant pain. She was also now on disability, and unable to get around her own little apartment. I did my best to clean the place up and organize her things while I was there. I rid the house as best I could of the chronic mice infestation that so plagues Baltimore housing, and I washed all her linens and clothing to get her feeling better. Even while I was going through my own personal hell with migraine pain, and seizures, I did everything I could to make my stay with her as pleasant as possible. I knew, though, that this was also not the right place for me, or for my son. Once again, we were living in a one-bedroom place with my mother, our cats had to stay with my fiancee and his father, and all our belongings as well. We had lost everything, and were both desperately miserable. I wanted nothing more than to change that reality.
My fiancee and I started talking again a few months later, and eventually reconciled in January of 2013. He helped me find a small apartment back in Pennsylvania to move into, and he helped me move from Baltimore back up nearer to him. The apartment we found together was not the one I ended up moving into. I got swindled by a slum lord into taking a much less desirable apartment than the one I had agreed to, but in a desperate bid for freedom, I agreed to move in there anyway, because I couldn't stay in that tiny Baltimore apartment with my mother any longer. I missed my independence, and I missed my fiancee, and I sorely missed my cats. I was able to have all of those things back if I were to move into this crappy little place in Forest City, so that is what I did.
In one month of living in this slum, I discovered a multitude of things wrong with it. My headaches were awful while I was there, and I soon found out why. There was black mold everywhere, hiding behind a bad paint job. There was no insulation, huge gaps in the doors and foundation which let the freezing winter inside, and there were cubbyholes and cabinets full of filth everywhere I looked. On top of that, the propane that fed the only heater in the house was $400 to fill up the tank, which they said ran empty twice a winter. I tried to clean it, but it was all too much, and I knew that this place was going to be the death of me, so I had to move once again. The jerk refused to return my deposit, even though I was absolutely justified in my desire to leave, especially since I was originally supposed to be in a totally different apartment. But this slumlord was a professional in taking advantage of the desperate, and he saw in me an easy mark. I lost $800 and had to borrow money once again to move.
I found the apartment in which we still reside in February of 2013, and moved in right away. The rent is reasonable, but the utilities are very high. I pay $205 a month, on a payment plan no less, for my electricity here. It's electric baseboard heating, so winter bills shoot up to $400-500 monthly. I have had to go on an assistance program to even out my payments, but it is still difficult to keep it going. Water and internet are not too bad, and I don't subscribe to cable tv, as I find it to be a waste of money, so I basically just juggle my bills every month to make it work. John helps where he can, but after a great deal of soul-searching, he decided to return to college to study psychology and build a better life for himself, as well as for me and the kid. His ambitions will take many more years to reap their rewards, if we can all hold out that long. So I am pretty much on my own right now, trying to make a go of it.
After that fateful few months at my mothers, and the move to this apartment, my seizures have settled into a rhythm. They occur mostly around menstruation and ovulation. I get clusters throughout the day of dozens of petit mals, for three to five days, every two weeks. My period has become a bit more regular as I reached my 30s, so I can predict when I will be having seizure activity and adjust my life accordingly. Basically, I record the start of my period every month, and know that the day before I get it, I will have the most seizure activity. I can also predict my menstruation by the increase in seizures. I almost always get a migraine that day as well, which can occasionally last the duration of my period.
This type of seizure disorder, I have discovered, is called catamenial epilepsy, when women experience an exacerbation of seizure activity around their menstrual cycle. I realize now I must have always had it. My seizures began at the onset of pubescence, and were most terrible during my time of the month, throughout my life. It also explains why birth-control pills (made of hormones) were always so disastrous for me when I took them. Any time I took anything with hormones, it caused me to have an increase in seizures. I never had full control of them on any medication, because when my period came, I have always experienced breakthrough seizures. Many of my grand mals occurred when I was having my cycle, as well, those not triggered by medication issues. I have never been fully free of them, but the latest EEG and MRI taken of my brain have seemed clear. I recognize that this is only the case because when they were taken I was in between my period and ovulation. My next step is an Epilepsy Monitoring Unit at a local hospital, where I will have to spend a week having my seizures induced to prove to the disability people that I still have epilepsy.
Disability is "reviewing my need for assistance." They want to take it away from me, only a few short years after I got it. They have taken the fact that I stopped my medication as an indication that I am all better. Epilepsy in adults does not just go away. I lost that hope when I reached adulthood, because I was told that some children do outgrow it. Not in my case, because I had severe head trauma on top of a genetic predilection for the disorder. I stopped my medication solely because it has always done me more harm than good, and because I knew there were alternative treatments available to me. I am back on a diet free of preservatives, additives, and chemicals, which has helped a great deal in keeping my seizure activity reduced, and knowing when to expect them allows me the ability to keep myself safe. I never go anywhere alone, I do not drive, and I have no social life whatsoever. I do try to stay active as much as possible, in between those times of the month that I have to be more wary. I get out and walk, ride a bike, or hike with my family whenever I can. So far, I have not had any grand mals as a result of stopping all medication. I have absence, petit mal, seizures on an almost daily basis, with the occasional myoclonic jerk, but my experiment has proven to me that the medications I was on for all those years have actually been the cause of my greatest troubles. I have not had anything besides ibuprofen in my system for over two years now, and I do not drink or smoke or do anything that could provoke a major seizure. I am careful with my health, but I fear for that I will be punished.
I created this website to tell my story, and to share my struggle with others who may be going through the same thing. I am hoping for the best with my disability, but I am expecting the worst, because if you expect the worst, you are at least prepared for it. I don't want to lose everything and have to move again. When I move again, I want to be going back west, where I was once happy, and where I know I have the ability to keep my seizures under control and build for my family a better life. I don't want to be stuck on the east coast, homeless, with a 12-year-old son to raise. I don't smile much any more, or laugh, or feel much of anything besides anxiety. However, I still have hope that I will be able to amend this story with a happy ending.