Cleveland Clinic

Cleveland Clinic in Black and White (Photo credit: Wikipedia)

EEG shows abnormal activity in some types of seizure disorder, but may or may not display abnormal findings in PTE. (Photo credit: Wikipedia)

There came a point in my life that my epilepsy became just to much. I had been searching for control for years and had no luck. I had tried so many different medications in hope of at last finding control that my doctor was running low on ideas. Previous tests really hadn't been much of a help. He had now brought up the option of being tested for surgery.
When I first heard that option I freaked out a little. The idea of some doctor operating on your brain can be scary. So I firmly told family and friends that I wasn't about to let a bunch of know-it-all doctors play with my brain and screw me up even more. I even thought that hey having seizures all the time and never being able to drive wouldn't be so bad, but I was at point now where the battle was something I was having trouble keeping up with.
The added stress at work wasn't much of a help. I felt like I was in the wrong for working there while my epilepsy wasn't under control. The horrible nightmares I had at night where I would die, be tortured, or kill someone I cared about was another load of stress I really didn't need. The dreams were vivid and often had me worrying about them longer than I needed to. Simply put I was miserable and fighting to find happiness was taking a lot of my energy and I didn't think I had the strength to keep fighting with incompatible meds and having seizures that would take away hope.
So I told my mother that I was considering the surgery the Dr. had mentioned and my mom asked the Epilepsy Center for information about the surgeries. We were given a very detailed packet about what goes on. I thought about looking through the information, but I already knew what my decision was going to be. I was going to tell my Dr. I was ready to be tested for surgery. I was afraid that the contents of the packet would change my mind so I never opened it. I didn't want to know.
The appointments leading up to my week long stay at Cleveland Clinic are a bit of haze because I was trying to block out the information given to me. I just wanted to show up and let them do what they needed to do to fix me.
The current meds I was on seemed at the time to be controlling the seizures, but the side effects were hard to deal with. The meds actually hindered my ability to communicate with people and absorb information. For example if someone asked my opinion of a movie I recently saw I was unable to tell them my opinion  I wasn't able to find the words to describe it verbally. So I would usually respond with generic answers like Good or see for yourself. The only way I was able to communicate like normal was in my writing. My parents described it like I was two different people. One had trouble communicating and the other was excellent at communicating and putting fresh images into your mind.
This wasn't the only draw back of the meds either. If the Rx would give me a generic brand I would seize. Or if I took a pill a little late or dropped a pill while taking them without realizing I would seize. So the meds offered an illusion of control that I didn't really have.
So when I did check in for my stay at Cleveland Clinic I knew that I wouldn't be taking my meds for the week and that I would be hooked up at all times to an EEG machine so that they could record my seizure and be able to tell how to best help me and to determine if I could have surgery.
Most of the stay was a blur  Mostly because of the seizures I had there make it nearly impossible to remember the stay. I mostly remember some really bad food and my mother who stayed with me having to go get me some decent food. I remember them giving me a drug to temporarily stop any seizures while they ran a test of some sort, but the reaction I had to that medicine was not a good one and I don't remember it to well. The drug they gave me made everything move and wave at me. This includes the pizza they served me to the walls, ceiling, and my own skin. Imagine little things with smiley faces suddenly rising out of your skin and waving at you. I was freaked out and just decided to sleep it off. That really is all I remember of my stay.
When all was said and done I found out that I was not eligible for surgery. That they were about 90 percent sure that I had generalized epilepsy and that I had been trying medicines for the wrong kind of seizures and they changed my meds that continue to work today. There was a small chance that I have a harder to spot focalized epilepsy that spreads throughout the brain so fast that it appears to be generalized. They decided not to do more tests unless the meds I'm on were to fail for some reason.
Although I don't remember much about my stay. Cleveland Clinic marks the point of a turning point in my life. After that I slowly regained control of my life and that would not have happened if I hadn't gone. My one regret is that I was so stubborn for so long. The whole mess could have ended sooner if I had just asked for the necessary help.

Related articles

• How Epilepsy Surgery Can Control Seizures
• Diagnosing Epilepsy: The EEG Test

Kroger Wars

I started working at Kroger in the summer of 03. I was excited to be working there. I had agreed to pay half my college tuition so having a job after high school was important. This job seemed to be a good fit. I was going to be a full time college student who had a part time job to help pay for school. It seemed reasonable. I was getting enough hours to help with tuition, but not so many hours that I didn't have time for school work. They agreed to be flexiable with my schedule.
When I intereviewed for the job I had been seizure free for almost year so I didn't mention my eplipsey. Besides according to state law I didn't have to mention it and if the employer were to ask questions about my health it would've been illegal. One thing I did do was research on if I had to say anything about my eplipsey before I applied anywhere.
On my first day I wore a med. bracelet and that is when they found out. This was in the days my parents were determined to get me to wear a med bracelet or necklace. I've always found the things hideous and hated wearing them. I had a tendency to play with them till they broke and after they broke I always hoped they wouldn't be replaced. I didn't like advertising I had a health problem on a piece of jewlery. So the braclet I wore that day was my fifth or sixth one and this one had lasted longer than others because it had a stretch band making it much harder to break. Which meant about 50 percent of the time I "forgot" to put it on or I took it off when my parents weren't around.
In this case I forgot I was wearing it and a manager asked me about it. I told them what it was for and after I told them it wasn't a big deal. That it had been a long time since anything happened they seemed fine and we proceeded.
The job was simple enough. I was working in the non foods department. Which meant I stocked items in the store that weren't considered food. Like the shampoo aisle, pharmacy, or light bulbs. The few things we stocked that were for eating was the candy and baby food.
When I first started I worked at Ticketmaster and only stocked if they really needed my help. After maybe a year Ticketmaster became part of customer service and I was stocking all the time.  I had seizures after being hired within my first year or so but they weren't at the store. So it wasn't a big deal.
I did eventually have one at the store and of course they were required to call 911. They also called my parents. They handled the situation beautifully and I went home early that day and crashed.
When I went back to work no one really made a big deal. Which made me happy. I did give them a letter eventually telling about my condition and what to do. They needed it for my file. After that everything was fine. My first couple years were fine. The work wasn't exciting, but it was work. I made a fair amount of friends and recieved good scores at employee review time.

A few years down the line all the managers I started out with had either transferred elsewhere or been promoted. Their had been a number throughout the years but they were usually really good about respecting department heads and how they schedule and manage their employees. None of them really had a problem with my eplipsey. Not even when I had to miss several months of work because I was so toxic on medication it was a challenge just to stand. My neurologist actually wrote them a letter explaining everything. Basically saying we were having trouble finding the right mixture of medication and to please be patient. That at the moment I wasn't able to work but would return when things became more stable.

Eventually a batch of managers came in that weren't as tolerant about health issues and had plans to change everything. The worst thing was they didn't respect each other's areas. They were constantly going to departments they weren't in charge of and knew nothing about and telling us do something the wrong way only to have the department head have us tear everything down when finished and do it right. The rate of how fast we worked decreased becasue everyone was confused. One person would tell someone to do something and another would tell them to do something that contradicted the other thing. It was like they weren't on the same page and more concerned about marking territory.

Eventually I had a very small partial seizure at the store. I was concious , shaking , and lost control of my emotions. They handled everything fine, but when I returned things changed.
There was a steep decrease in my hours. Such a big decrease that I lost health coverage for a few months.
Then everyonce in a while they would give me over thirty hours. So I could work anything from 4 hrs a week to 30 hrs a week.
On top of that if there were three managers in the store they all would give me conflicting jobs to do. They would have me do it drastically different from anyone else in the store. I was told to do things in a way that  would take 3 times as long as the other way.
It wasn't a surprise that my performance went down. I was so busy trying to figure what I was supposed to do I usually didn't get much done. Then on a few occasions when I would be working in close proximity to a manger they would say things like "Are you sure you should have a job? Won't that make your health worse?"
I began to go home and try and list five reasons to keep working at Kroger. I was becoming miserable and depressed. Not to mention stressed from trying to force happiness at work while I was actually just doing my best not to look angry. I began to have horrible nightmares every night and I felt like I was stuck in hell. That somehow hell had been brought to me for some reason and I couldn't fathom why.
I wanted out but was told that I couldn't quit because I had health insurance through kroger and it would be stupid to quit.
Everytime I had a seizure or my meds weren't quite right they would drop hours or tell me to do something wrong. The head of my department figured out was going on and eventually told me to just do things the way she said and only worry about what she said. So I would do what she said and do what the managers wanted when they were around. I felt like I had to be two people at work.
Eventually though I just couldn't handle the hell of work and my eplipsey at the same time. It was to much. Even with help from God it was to much. I finally decided to go to Cleveland Clinic to see if I was eligable for surgery. (more on that in another post)
When I finished Cleveland Clinic I became stable. The problem was I was miserable at work. I had been unable to find a job with my degree because of lack of experience. Not to mention that kind of work was just to boring for me. I wanted to do something I would enjoy.
Eventually everything came down to one night. By this time I had recently met my future husband Anthony on line. Things seemed to be going well. Things were starting to look up. The problem was there was just one thing I hated in my life and I didn't see a way out.
A way out was offered to me. I went to work one day and began my shift.  The assistant head department gave me a list of things to do and asked me to work overtime at the same time. I said okay to the list of things, but no to overtime because I had an obligation after work. I didn't say it in a way that was clear and didn't realize I wasn't clear. So I clocked out at the scheduled time. Twenty minutes later I received a phone call from Kroger. They told me I had to finish the overtime or it was considered an automatic quit. I couldn't go back I had somewhere to be so I told them I guess it's an automatic quit. Said thank you and hung up.
In retro spect now that I know where it happened I am to blame for not giving a clear answer. Had I known I was unclear I would have clarified things with the asst. dept. head before I left. I was ecstatic when I quit. For the first time I felt truly free to pursue a future I would be happy with. I would be able to do so without worrying about seizures.

College Woes

When I finished high school I was relieved, but at the same time not quite ready. Things I'd been told by teachers at school had me convinced that if I waited to go to college I would be a life long loser and would never make anything of myself. I wasn't really feeling ready to go to college. My seizures weren't under control, I couldn't drive, and I hadn't taken any sats or acts, but I felt like I had no choice.
I applied at a college that I knew I could get into and not have to leave home. I chose Davis College because it was a safe choice. The way things were going medically leaving home for college wasn't really an option. When we went to get information and I got a catalog with majors I still had no idea what I wanted to major in.
I chose not on what interested me, but what would be a safer choice for someone who may never have control of their seizures. I chose safety over happiness. I flipped through the office administration section. I knew a desk job would be a safe choice. That way I couldn't fall and hit my head. The medical administration section caught my eye. I knew that if I went with that route that if I had a seizure at work their would be a doctor around. What doctor wouldn't know what to do? Besides doing paperwork and things like that always seemed kind of fun.
When college began it proved to be a much friendlier environment then high school. The petty gossiping and rumor mill was something most people were over and didn't really have an interest in. That was one perk, but school work didn't get easier for me. It was still hard for me to learn anything with all the medication I was on. There were times I couldn't explain simple things like what a book or movie was about. With the meds I was one it became a challenge to communicate. I got used to giving one word answers ( a habit I haven't broken) and when asked an opinion I would find a way out of it. I could write what I wanted to say but couldn't actually say it. It was like my hands and mouth were connected to two different brains. It was infuriating.
On top of that I was determined not to let anyone at school know anything was wrong. So even though walking normal was a great challenge and taking notes was practically impossible I forced myself to do it. Some days I didn't take notes because I was to dizzy to read what they were talking about and would just doodle away in my notebook.
My first semester I made dean's list, but I burnt myself out doing it. I used every ounce of energy I had to accomplish that and realized I didn't have enough energy or oomph to keep it up when the next semester began in a few short weeks. So after the first semester my grades began to slowly decline.
As if that weren't bad enough one night when I was in medical transcription class I had a grammal seizure in class. Normally that's bad enough, but this would be my first episode ever of rolling seizures. Apparently on my way walking to an ambulance they had to lay me down because I started seizing again. Apparently they couldn't stop them and I ended up in the er where they gave me a drug to stop my seizures.
I ended up in the hospital over night and had successfully scared the crap out of my family and ruined any chances of passing myself off as a normal student.
Davis College is a very small college. The same mentality as a small town. Everyone knew when I went back. Constantly asking me how I was doing and if I was okay. Which all I wanted was to be left alone. I usually ended up in the library researching vampires. Research that has come in handy for a fantasy story I'm currently working on.  Researching random things allowed me to escape everyone being so nosy. I didn't know these people and they wouldn't leave me alone.
I had a couple more seizure while attending Davis College. I also flunked keyboarding class twice because my hands wouldn't stay still. When I graduated I wasn't happy. To this day I look at that diploma with shame. I wasted a lot of money and time trying to fit in when I should have looking for what would make me happy. Davis College is a decision I regret to this day. The only thing I got out of it is now I have degree that says I know how to schedule appointments. The degree is just a bad reminder of a time in my life I'd rather forget.

Understated Dangers

So as anyone following this blog knows I'm a person living with epilepsy. What bothers me is not the condition itself or even what the condition has put me through. God saw me through it one piece and shared any pain I may have  been going through. What really bothers me is the attitude of the general public about epilepsy.

Now I understand that it wasn't to long ago that this condition was untreatable and the only thing doctors could do was lock a person with epilepsy up in a mental institution. I even get that some people are so under informed that they believe this condition isn't a condition, but a person simply possessed and a simple exorcism will cure everything. I even get that hundreds of years ago that people like me were burned at the stake accused of consorting with the devil. 

It's time to pay attention and learn about epilepsy. If Breast Cancer can have all these organizations dedicated to finding a cure why not epilepsy. Don't get me wrong I would love for their to be a cure to breast cancer, but what people fail to realize that epilepsy kills to. It's known as SUDEP. The largest amount of SUDEP deaths are in the UK. All it takes is for a person to have a seizure in the wrong part of the brain and they die. Or to be doing the wrong thing at the wrong time and then their life is cut short.

What so many people think is their is medicine for that. It's no big deal. Heck they even have surgery now. Nothing to worry about.  First of all I have a mild case and just because I'm under control now doesn't mean I'll never have a seizure again. I actually saw a YouTube video where they mentioned a girl who had been seizure free for ten years and then bam she had seizure and died. I don't what she was doing at the time. Maybe she fell and hit her head wrong or maybe she was driving.  

Their are many cases of epilepsy that can't be controlled with medication and are not even considered for surgery because of the type of epilepsy they have. If you have focalized you have shot, but the surgery doesn't guarantee you'll never seize again. It could just jump to another part of your brain and then there are those like me with generalized seizures. When we have a seizure the easy way to put it is the whole brain goes wonky. Someone with generalized seizures would need an entirely new brain. 

Did you know that their is a whole month dedicated to epilepsy awareness. It's the month of November and the color is purple. When it's a cause like cancer it's everywhere. Heck even Kroger's joins in, but not a whisper of epilepsy during it's month of awareness. The only news I get in that month is from organizations that have their hands busy trying to just help all the epileptics. 

Doctors don't mention SUDEP because their still a lot they don't know. They don't want to tell a person their is no cure for this and yes you can die from it and it's already claimed thousands of lives completely unnoticed!

Don't Move

Sleep is a very good thing. As an epileptic who tends to have seizures when I'm overly tired it's important that I get my full night's rest, but I'm not going to talk about my sleeping habits and how bad they maybe. It so happens that there are two seizures I can remember quite clearly. These two are without a doubt the worst I've ever had. Perhaps others I had were worse, but at least I wasn't conscious and aware of what was going on. There is nothing worse than when you know you are having a seizure and being powerless to do anything about it.
Both of these seizure happened about the time I get up on the weekends. One happened during high school and one during my college days at Davis Community College. A college I don't recommend. It was during that period of sleep when you're almost awake, but not quite. Maybe twenty or thirty minutes from forcing yourself out of bed. It was during this time I was shoved into the awake and alert mode.
I tend to sleep on my side, but I shift a lot in my sleep. It's not unusual for me to wake two or three times a night to fix my covers. It was when I decided to shift that it became apparent something was wrong. I went to shift onto my back and just moving sent my body flailing out of control. I couldn't stop. My arms were swinging back and forth banging the mattress and my legs were flailing up and down and I couldn't stop. I found myself unable to say anything. After a minute or two it stopped but my limbs still had a really tense feeling. Stupidly I decided to try and stretch things out and it sent everything flailing again including my head this time slamming back and forth on the pillow.
This time when I stopped I forced myself to lay extremely still as if my life depended on it. I pushed my body as hard as I could into the mattress to prevent myself from moving and starting anymore flailing. A person can only keep this up so long and when you are pushing your body into a mattress as hard as I was the body will cramp. So I eventually had to move and every time I moved my body would flail from 30 seconds to a minute. I even had to slow my breathing so I didn't set it off again.
I felt like a prisoner in my own body. I really had to go to the bathroom but was unable to get up. I was hungry and wanted to get out of bed but I couldn't. This lasted a good ten minutes. The most agonizing ten minutes of my life. I don't believe I said anything the first time because I was a dumb teenager who thought that seizures didn't happen that way for me. When it happened again I did say something. Although it was strange in my particular case I was told it was a seizure.  Thinking back on those two seizure if I could trade those experiences for rolling seizures or even a grandmal I would do it in a heart beat. I don't remember those and I get to sleep the rest of the day. But those I usually only sleep an extra ten or fifteen minutes and I remember every second. I wouldn't wish those on anyone.

School Nurse

As someone who hadn't found the right mix of meds yet and was often toxic. It probably comes as no surprise that I often found myself in the nurses office at school. The nurse and I were on a friendly basis. If I came in and someone else was there I knew to take a seat and she would get to me.
There were days in school that although I may have been determined to get through the day as normal as possible at times it just wasn't possible. One example is a time I went straight to the nurse's office after arriving at school. My mom had to walk me in because I was incapable of walking straight. When walking I looked like someone who had to much to drink. Our hopes were that the meds would ware off a little and allow me to function normally in school. I missed one class and half the class after that waiting for my world to return to it's normal spinning rather than a spin that took my legs on the trip to.
I would also go to the nurse's office if I felt my eyes were strange. I went there in fear of a potential seizure coming through and the last thing I wanted was for the other students to see a seizure. The last thing I was looking for was the usual questions. Like what does it feel like to have seizure? Asking me all about things leading up to the moment in the day when usually the seizure wipes my memory and I find myself unable to answer. Leaving both me and the people asking extremely frustrated.
I did have one seizure in a class but it wasn't my typical seizure. According to what I know from people informing me I started cursing and swearing at my German teacher. Talking about what a f@#*$% waste of time the language was and etc... Luckily the teacher knew from previous classes that this was not typical behavior for me and sent me to the nurses office. I was picked up and slept the rest of the day.
I must admit there had to be times that nurse thought I was just trying to get of class, but as tempted as that idea sounds. I went there because I was usually getting to dizzy to walk or afraid something was about to happen. I was of the mind to have a seizure in a nurse's office instead of a classroom of twenty or so people.
I'm very grateful that she put up with me and didn't point out that sometimes I was probably freaking out over nothing. She was patient and for that I'm grateful.

Ms. Ohneato

When the school year started I was signed up for two English classes. One was a fun English class that kept my love for writing alive. It was contemporary literature. The other was English honors which if it had been my only English class I might detest writing and books today. The only beneficial thing about this class was I finally learned to play chess and actually read the book Frankenstein. The class was lead by a teacher I shall refer to as Ms. Ohneato. Now this particular school year wasn't my best year. I would spend a good portion of the year in the nurse's office and I was so toxic on medications at this point that it really was a miracle I could walk from class to class. So needless to say just trying to sit up straight without swaying or shaking, and trying to keep my eyes from making the room spin so fast I wanted to puke was my soul concern. Paying attention in class somehow got shoved down on my list. I will admit I wasn't that popular this year either but I didn't care. I was much to concerned with "will the spinning ever stop" and "if I have another seizure please don't raise my medicine" type thoughts.
Ms. Ohneato was a bit weird and strict. On Fridays she demanded we play chess with a partner while listening to classical music because this excercise stimulated the mind. My oppinion she just wanted one less day of lesson planning. Which no student in their right mind is going to complain about in high school. We were always reading some kind of novel and doing questions to go with. It shouldn't come as a surprise that my grades slipped. I had so much going on personally that keeping up the good grades wasn't possible. I could barely remember anything I read if I mangaed to read something. My hands were so shaky that a lot of her crafty assignments were extremely difficult.
Ms. Ohneato didn't seem to care that I was having problems for medical reasons. She didn't show sympathy. One day when I was handing in my homework to her at her desk she asked me to leave the class because this was an honors course and my grade had slipped below a B. Now I can understand but she could have been polite about the matter and pulled me aside after class. She was frustrated to find out I was already taking another English class that met the requirement and she couldn't remove me. As long as I was taking that contemporary class I could stay in the honors class and work to get my grade up.
After the talk though any sympathy she once had disappeared. She assigned a oragami assignment. Now for those who don't know. Before my eplipsey and medication issues I was obessessed with oragami. In fact I was getting really good at it. I was able to make over thirty different things at one point, but I've since forgotten these things and refuse to pay over twenty dollars for paper to get back into my hobby. At first I figured no problem. I can do this as long as I can take my time and have my best friend who sat next to me read me the instructions I'll do fine. During the time my class was it was nearly impossible for me to read.
To my dismay the teacher announced that we only had twenty minutes, had to remain silent, and no one could help each other. I didn't know what to do. I couldn't read the paper she had handed out. I knew what we were making from the example she had. My only relief was that the instructions had insturctional pictures that went with them. I tried my best to decipher the folding instructions from the pictures, but the page was so blurry and spinning before my eyes I had no idea what to do. So I kept stealing glances at my neighbors to figure out what to do.
Ms. Ohneato was watching me the whole time. A smirk across her face. When the twenty minutes was up she walked right up to me and pointed at my right hand. "This is your right. That's your left. It's obvious you can't tell the difference. You can take the project home."
The teacher then sat back down in her seat and didn't seem to care at all that a good portion of the class was laughing at me. She didn't seem to care that she had just humiliated me for no good reason and with baseless accusations. I sincerely think this is one of the experiences that has caused me to place such large distrust in teachers. While I remember my good teachers always. The ones who actually cared and took time to explain things to me knowing that I was going through something. Some even took the time to ask what the situation was. It's teachers like Ms. Ohneato that give teachers a bad name and are one reason among many that my high school will always be remembered as the halls of hell.