Hi.
Introduce Me To Neurology is the first chapter to a Novel I began writing 6 months ago and hope to finish by the end of the year. Contact me if you want to read other chapters I have completed.
Sam Inglese ambimind65@yahoo.com
INTRODUCE ME TO NEUROLOGY
Medications are a story that can stand on their own. I didn't start taking prescriptions until I was 20. 2 or three years after the attacks started, but this tale includes grammar school and 8th grade.
I grew up in a small 1 or 2 square mile town in N.J. There were less than 8,000 citizens. Nothing larger then a house. An ancient factory with a paddle wheel attached outside still in the river. They say for grinding whatever grain the farm used to grow. It was the end of the line for 1 old train to stop and pick up whatever with only 1 other stop where some tiny station no larger than your living room stood. Somebody turned it into a cool ice cream shop where everyone came even from out of town to get a cone. Ben and Jerry were probably only 5 years old. There was still a little bit of a farm left maybe 1 acre surrounding a small red barn falling apart slowly, large white house probably from the 1930's, and two old women that I would see on the porch every day. I never met them. Maybe they were ghosts because they never even appeared at the only church in town. As old as their home. And with only 1 priest. Mom and Dad insisted my 2 brothers and I be altar boys. Mass required two of us in white cloaks and I always got to see Father John wolf down the whole giant carafe of the Body of Christ at one of every three mass's on Sunday. I don't know what he really put in it but he was always drunk by the middle of the sermon.
OK. I'll stop myself before too much of my childhood comes back to me. Anyway the important stuff was 8th grade chemistry class. 7th and 8th grade had a really cool chemistry teacher with a very important speech on day 1. He discussed molecules and the formulas of everything in the world. And what to watch out for. He pointed to the chalkboard with the letters H and O and there was a blank white board above it. "Does anyone know what these two letters are? I raised my hand and he pointed to me. "H and O". " Nope. You are in Chemistry class now. H is Hydrogen. O is oxygen. What happens when you breathe either one of these molecules?" We were all clueless where he was going with this. "Oxygen is cool. We all need to breathe it to live. But if you breathe just Hydrogen… you get sick….. Now," he said pointing his stick which he loved to use all year to the chalkboard stepping up and erasing the O and writing it next to the H. "If you stick these two molecules together and ad an extra molecule of Oxygen." He wrote a small number 2 under the right side of the O. "In chemistry class you get (pause) Water. So what happens if you breath water?" Jesus Christ where is he going with this? I called out. "No you drink it. If you breath it you'll choke!" I called out. "Right. You will all be mixing things in this classroom never knowing what you could end up with. It could burn you, blind you and even kill you. NEVER in this classroom do you touch ANYTHING inside the petri dishes and vials especially after you've mixed them together! Got It?" Some of us shrugged our shoulders, some of us nodding our heads. "Great. Now put on the aprons I set on each seat and let's get started." Everybody was a bit spooked now and nobody misbehaved in this class the whole year.
OK Let's get back to epilepsy.
So 10 years later, in college when the attacks began Freshman year they were only a couple times a year and so I made 2 firm decisions. 1. There was no reason to believe it was not temporary, and I would not let it control my life. Ever! And whenever I had an attack, when I awoke the rule was that I would stand up, brush myself off, and state out loud, just enough for myself to hear; "OK, That's the last one."
Leaving me confident, strong and ready to continue my life where I left off without living in denial. I think it was Junior year when they started coming every 8 weeks that I finally listened to my Mother and went to see a Neurologist. But I did my own research first.
This was back in the 1980's. There were only 3 or 4 anti-convulsants on the market and I probably already understood more about a seizure than the neurologists. After my talk with my very first one, he said "Ok. We will try Phenobarbital 500 mg's a day and see what happens after 6 moths time for it to build up in your system. If you're still having attacks." He said. "We'll add another 200mg's a day and keep trying until you reach 1,500. If you still have attacks we'll try the second drug.
But I asked first; "So why are we trying Phenobarbitol?" Pointing at the poster on his door the neurologist said. "Because it is the first one on the list."
"So you aren't making a choice because of what my condition is like?" I asked.
"No. It's just the first on the list. That's how we do it."
I was pissed. "I read that people that have been on that drug for 20 years are losing their liver or just dying. I don't want it." I told him.
"That's the way it works."
"Well I'm not taking it! Tell me about the second one."
"OK. We can try that, but keep in mind that Dilantin has only been out 2 years, so we don't know yet what it will do to you in 20."
"Yeah, but we know for sure the first one will do things I don't want, so I want to start with #2"
So that's where we began. The FDA said it was safe up to 1,500mg a day and the pills came in 200mg tablets so it was 2 in the morning and 2 at night to begin Side effects were a misery. Neither the doctor or the companies that created these drugs gave you a clue. Who really knows how much they really knew.
From day one I was always bumping into walls which I didn't understand because I still mostly had my balance and was pretty good at thinking clearly even through the headaches until I realized I had lost my sense of depth perception. So I never knew exactly how close I was to something and although we're only talking 3 or 4 inches, that is too much of a difference when turning corners or going through doorways. My shoulders always had bruises. But there were times when my skull would be the victim.
12 months passed. I had reached 2,000mg./day. I had maxed out on the FDA limit of testing a drug and I was still having GM's every 6 weeks and so it was time to move on to drug #3 on my doctor's poster on his wall.
The story is practically the same. Just this time it was more slurred speech than depth perception that was tied in with the headaches and drowsiness. It was considered extremely dangerous to shock the system by immediately stopping one med and starting the next, so the process was to reduce the present prescription by 100mg a week while starting up the next drug at half the dosage and adding a hundred a week until the full prescription was reached. The months spent with the drugs' levels crossing paths were astounding.
But now there was nothing left on the chart. The Neurologist said to just stick with what I've got until something new was introduced. Unless I wanted to go back to #1 and try Phenobarbitol.
So I waited. Until I read about a clinic in NYC that had a med in its last year of testing now needing humans before the FDA would approve it. So I took the subway and knocked on their door. I never saw an office with more than 2 Neurologists before. This was a clinic at NYU that still exists just even larger. The department that was doing the testing though had the head honcho Dr. Orrin Devinsky and a younger assistant. I filled out all the forms and set an appointment to come back for a number of days to have everything inside and out of my brain and body tested so they could have a chart at the end of the 18 months to compare even my psychological issues to find anything good and bad this new chemical was doing for us and to report to the Food And Drug Association (FDA). Back then, Dr. Devinsky and one other neurologist out in Europe were the only brain surgeons in the world! And after 12 unsuccessful months building my level to 2,000 mg. a day and my attacks very slowly increasing in size and severity anyway, he asked me to consider surgery. Their approach to brain surgery back then was limited. The idea of opening my skull was frightening and I needed to read about it first. There was not much of an internet and few people even had their own computer back then so I searched medical magazines and the medical journals in his office that only doctors get to see. What I found was astounding.
Back then, the theory was that seizures only happened on the left side of your brain and that brains were so smart and big that humans had not yet evolved to using a third of the neurons. So we had lots of them to spare. Neurologists had yet to discover any consistency as to what areas of everyone's brain were responsible for what job and believed that every part of the brain was smart enough to do any job. So the neurological community was proud to announce that it was safe to kill the right temporal lobe, responsible for the whole left side of your brain, confident that the right side of the brain had the memory space for and ability to do everything the left side did. And that it would choose to do so, at least the important things.
I met with different post surgical patients at every of my weekly appointments and found that everyone lost things. Permanently. It could be as big as control of a foot Memory issues. Ability to calculate or speak. One person's eyes were slightly out of sync. so I asked the doctors what they thought I might lose? And they had no answer except that some people got everything back and it was just wait and see what responsibilities the right side of the brain would decide to take over. They were confident it could do everything if it chose to. And what is lost could be worth never having another attack. But plenty of the people in the waiting room were still having them. Just differently.
It wasn't worth the risk for me so I just kept my promise and continued to take Med #4 increasing when they asked, visiting regularly answering questions about mind and body and emotions. Health, opinions, strength etc. while they sucked my blood and urine and saliva for numerous tests. In the end I was at 2,000mg's a day. How can the FDA decide the limit until the find out how much is too much?
And when we got to the last few weeks of the study, the second neurologist invited me into his office to discuss my next options. He wanted me to consider adding med #3. He talked about other patients finding success in mixing medications. It was a new thing back then. Not like today where everyone mixes at least 2 or 3. I asked him if they had ever taken this new medication, mixed it with med #3 and fed it too a rat? He actually looked excited as he sat up straight and said "No. You're the first one!"
So I told him what my chemistry teacher taught me years ago and left. I started taking half my prescription to reduce all the side effects while I waited for med #5 to turn up. I would steel the medical journal from offices that was distributed only to people in the medical profession.
Mysoline and Tegretol were introduced and I moved on, one gave me a full body rash, the other had too many different things going on at once and I continued to try and wait. And then I moved to Chicago for my acting career. The film industry had a number of productions scheduled to film the next 2 years, the Gangster Chronicles were shooting their 3rd season and my brother moved their already for work in the corporate world so I went to join him and see if I could get my foot in the door finally there as an actor.
I found a new neurologist and got my hands on the next journal only to see an article about the drug I was a test patient for. It was approved by the FDA finally. I told my doctor it was too late for me to try but when the next journal came out, there was an announcement that the FDA changed its mind and was removing it after 12 people died in 2 weeks because of combining it with other medications. Next year a tiny article maybe 3 paragraphs long announced they were reinstating the drug but with a different name.
