Seizure Diaries: My Story
My name is Charlie Hooper and this is my Seizure Diary.
Starting in the fall of 1986, several months after my mother died of cancer, I started having what I thought were “nightmares.” It felt as if the devil himself were trying to attack me! On a series of occasions I awoke and found myself out of my bed on the floor, shaking violently, and not knowing what had just happened! These nocturnal episodes continued about a dozen times over the next month. I was desperate, but afraid to find out what might be happening to me. I secretly went to a priest and asked his advice. He did not know what to do.
The night time shaking continued a couple of more times that fall. One night my father heard noises and came into my room. He found me on the floor shaking violently and lay me on my side, my head on a pillow. He dragged my body away from the bed and side-table.[1]
The next day my father made an appointment for me with a neurologist at Johns Hopkins. After a brief interview, the nurses took me to a clinic where I got a complete MRI, (Magnetic Resonance Imaging), and EEG, (Electroencephalogram). When the results were reviewed by the medical staff, it was like a convention of doctors surrounding my MRI and EEG! They were debating what to do. What they had noticed was that I had what they believed was a congenital arachnoid cyst in my brain.[2] The cyst was located on the frontal lobe of the left hemisphere of my brain. They also discovered an agenesis of the corpus callosum on my right hemisphere. The doctors were not sure what to do. After a vigorous consultation among the medical team, my neurologist came over to my dad and me. He said that he believed I was having “nocturnal episodes,” perhaps triggered by emotional trauma.
For the next nine years, from 1986 to 1995, I was prescribed various anti-seizure concoctions, none of which worked very well. I experienced an increasing volume of nocturnal episodes, with little relief in sight. I was able to work and drive and lived a near normal day-time life. The nights, however, remained either calm or torturous.
Taking matters into my own hands
Finally in the spring of 1995, at the age of 31, I made an appointment to see another neurologist. I wanted to see someone who specialized in epilepsy. After he gathered data for a baseline, we had a follow-up meeting. The doctor next took me off my seizure medications and scheduled for me to have a week-long stay in the hospital! For seven days I had wires and tape all over my head and body. I was under constant observation, night and day. My brain was having a V-EEG, (video EEG). During the nights I had a series of petit-mal seizures and several gran-mals. With each seizure I was asked to ring the bell for the nurse on duty. The nursing records pointed the doctor to the specific parts of the V-EEG where I felt the most impactful seizures. The doctor looked most closely at the recordings during these episodes. At the end of my hospital stay, the neurologist officially reclassified my nocturnal episodes as “Epilepsy.”
Twice more in next few years the doctors put me through the V-EEG. The next time was to determine if I were eligible for surgery. The neurosurgeons wanted to see if the could safely remove the portion of my brain that was causing the seizures. After weighing the options the doctors decided that the position of the arachnoid cyst was too close to a knot of blood vessels, the brain trauma might do more harm than good. The other V-EEG testing was scheduled to provide more data. My seizures were increasing in frequency and severity and none of the medicines were working. The doctors wanted to know why.
By 2011 I was in dire straights. In one year my seizures had increased 75% from 785 in 2010 to 1,037 seizures. The doctors kept changing the medicines I was prescribed, to stem the seizures. Instead the new meds threw me into wild swings of pain, sleep, and mind-numbing seizures. Since the year 2011, either due to or in spite of lots of different pills, my seizures have only come down slightly.
After that last V-EEG, I asked the neurologist if I could personally view the video. I felt it would give me keener insights into what my caregivers saw when I was seizing. After viewing the video, my heart went out to my wife. I now understand how hard it is for her to watch me thrash uncontrollably on the floor. Reading about it is one thing, watching it is a whole other matter. The new perspective as a spectator allowed me to witness the anguish and helplessness of those around the epileptic. The change in point of view made me more appreciative and understanding of the collective pain. All caregivers out there, who witness episodes of epilepsy, suffer alongside of their loved ones!
But what if…?
Over the last 30 years, I have had numerous MRI’s.[3] These periodic tests were to detect any changes to my cyst. From the baseline test, not much has changed. Lots of “IF’s” come to mind for me. If I had had episodes at a younger age, the doctors might have used the MRI sooner. And if the MRI were more acceptable in my youth, it seems possible that I could have had a shunt in my brain, draining it of harmful fluids. Without the cyst impeding its growth, my brain could have formed normally. However, I was 22 at the time of my first MRI. In my case it was too late for anything to be done. My cyst had grown to the point where blood vessels and my brain had formed around it. It was more dangerous to operate than to leave the cyst alone.
All things considered, I am proud of my relative success in school! My parents noticed that I was progressing more slowly than my older brothers and sisters. In the first and second grades, at the advice of our pediatrician, they sent me to school of special education. With a lot of tutoring, by third grade I was able to mainstream into regular elementary school. I was an average student and I enjoyed learning new things. When it came time for college, I went to community college and majored in Criminal Justice. I had always wanted to a police officer and it seemed like a natural fit! When I became a police officer, I worked as a patrolman for a small town in Maryland.
A few years into the job, I had to stop driving because my seizures were interfering with my work. I was given the ultimatum of either taking at a desk job or leaving. I spoke to my neurologist and reluctantly decided to give up my dream job. I ended up doing the next best thing — working in retail security. During these years I got married, my wife had two boys, and we moved to Pennsylvania. Things were good. Although I was not directly in law enforcement, I was able to provide for my family by working as a retail security guard.
During my years in retail, there were two occasions when I had to assist employees, trained in first-aid, with the right procedures treating someone with petit-mal or gran-mal seizures. Both times the seizures happened to retail customers. I instructed my fellow employees on how to position the customer, what items to get, how to place clothing under their heads, and how to bring the customer out of the seizure. I knew to time how long the customer was in the seizure. The rule of thumb? If a seizure last for five minutes, it is an emergency. Call 9-1-1 for an ambulance.
It had taken me a number of years to let any one of my employers know about my epilepsy. The myths were so wild: “Someone with seizures is possessed by the devil.” “Imagine the bad publicity an epileptic can bring on the company.” I feared that telling the truth would ruin my chances of getting hired. However, in 2002 I took my chances. With very little digging the company could find out about my medical history. I decided that it time to tell them about my condition. To my shock, my medical history did not bother them at all! I was so relieved.
The job sustained us for eighteen years. For the first seventeen years, I never once had a seizure on the job. Eventually, though my seizures started getting worse and worse and I experienced one on the job. More seizures soon followed. My doctors told me I had to stop working. I was devastated! What do I do, if I can’t work? So many questions raced through my mind. Deep depression set in.
I reflected on my situation and the cause of the increased seizures came into focus. In retail, I was under a lot of stress: I was responsible for safety of all employees, investigation of internal theft, cash management monitoring, and shipping and receiving oversight. I was also responsible to oversee customer safety, shoplifting, and security. Many times I had to confront and tackle shoplifters in the store parking lot. It was physical and mental work and I averaged between 65 and 70 hours per week on the job.
During that last year of employment, I think everything caught up to me, especially the stress. I had gotten divorced a few years back and my ex-wife had moved out of the country. She took primary care of our two children and I had limited visitation rights. I started having gran-mal seizures along with petit-mals at work. I consulted with my doctor and he told me to set an emergency office appointment.
In the office I told him exactly what my recent seizures were like. They followed a similar pattern: first I would get an odd smell in my nose, next my head would fog, I would lose my balance, and then my seizure would begin. They had occurred only at night, however, they were now happening wherever and whenever. After the emergency visit, the seizures increased in number, length, and severity. Instead of only an occasional gran-mal, they were happening all the time. They seemed to be non-stop. My neurologist then told me to stay at home and not drive. I believe he wanted to see what direction my seizures were headed. After that first week my doctor ordered me to stop working. He wrote a note to my employer with his diagnosis and medical evaluation.
Financial stress
Without the ability to work, the bills started mounting. I tried some strict financial dieting, but things were getting away from me. My home mortgage and medical bills never abated and I was in trouble. I tried to close some accounts, negotiate some bills, and cash- in some holdings to shore up my assets. The credit card companies called me every day. All the while, I needed to get approval to receive Social Security Disability Income (SSDI).
It took me nearly nine months to get through to the Social Security agents on my case and to start receiving money. One of my sisters helped me, but it was still a long hard fight to get what I had earned. My father helped me the most, relieving some of the financial stress from my credit card debt and mounting medical bills. He also helped with my mortgage, which made it so that I did not have to declare bankruptcy.
I also began to write what I call my “Seizure Diary.” In 2005 by my records I ended up with 532 seizures. During the previous nineteen years I had experienced one or two seizures a year. WOW! In the my diary I record the type of seizure, how long it lasts, and a full description of my symptoms. To this day I keep a diary of my seizures. I give a copy of my diary to my neurologist during my doctor’s visits. I have added a monthly chart and graph of my seizures, which give a powerful visual image of my brain activity. That way everything is broken down and can be deciphered. I can easily tell what type of seizure I have had, and collectively how many I have had between visits.
Vagus Nerve Stimulator
I also have an implanted Vagus Nerve Stimulator, VNS for short, which can be helpful in stopping petit-mal seizures. They do not help with gran-mals, which take over my body. The VNS is also helpful with its electric lead to my heart. It can let my doctors know if I have a heart problem with the voltage. I also have a magnet on my wrist which can trigger the VNS to activate the Vagus Nerve. That activity shuts down the impact of petit-mals.
Those of us with epilepsy love to boast about how many days it has been since our last seizures. Right now my record is 26 days seizure free. I can boast about that!
Click Here to Download My 2015 Seizure Diary
Footnotes
[1] I later found out from my father that he had had a roommate at Kent School in Connecticut who experienced seizures. He had learned how to perform first-aid in case of seizures for his prep school roommate.
[2] An arachnoid cyst is spinal fluid covered by arachnoid AL cells and collagen. The cyst develops either between the surface of the brain and the cranial base or on one of three membranes. These three spiderweb-like arachnoid membranes cover the brain and the spinal cord.
[3] The MRI takes pictures of the affected area. In my case the scan looked deep into my brain and captured numerous sliced images. They gave the radiologists good views of that specific area.
Henry E. Hooper 