Epilepsy, The Struggle is Real

Epilepsy the Struggle is Real

Winter 1992
Hello,


My name is Stacey I have had epilepsy since I was 12 years old. I am writing this blog because several people I love who have never had epilepsy before are now starting to experience seizures later in life at age 35-40. I do not know what caused my first seizure. I have always been sleeping or at least in bed when I had my seizures. Almost always at the same time depending on my sleep schedule. The doctors put me through many brains scans and EEG and they never determined any reason (physically) that could be causing these seizures.

What causes my Seizures?

The doctors do not know any physical reason I have my seizures. EEG was normal MRI was normal. I feel that it is the exhaustion, overexerting, lack of REM sleep and mental fatigue that causes my seizures. Although I do not believe that is the root cause but that is definitely a trigger. Also I think it could be neves in my neck that do not connect properly due to sleeping on my side 2 of my seizures I had I was sleeping on the couch on my side and one I was on a fold of chair like a little movable bed. I suffer from minor sciatica. Maybe the reason the doc never finds anything in my brain scans is because its the nerves in my neck that have been damaged. This is only a theory but seizures are caused by a misfire where your nerves in your brain are unable to communicate with your body correctly. When you have a seizure your brain waves go crazy. Also some people believe Bipolar disorder and Epilepsy are linked.(Brandy Ladnier) I believe this could be true based on the research from surgeries. There is a surgery for getting your epilepsy to stop. In highschool they showed a video of a person who had the surgery. “Corpus Callosotomy (CC) is a surgical procedure to control generalized seizures, primarily atonic seizures (drop attacks), by cutting the corpus callosum. The corpus callosum is a band of tissue that connects and transmits messages from one side of the brain to the other.” (google answers) So they go in and disconnect the callosum and when they get done your brain can no longer communicate from the right brain to the left brain. After this surgery your right brain and your left brain can no longer communicate at all. So you go to the closet to pick out a shirt and your right hand grabs one shirt and your left hand grabs another. Then you have to force one side of your brain to give in. When I was a child Mrs. Ortega my kindergarten teacher told me to use my right hand even though I was naturally left handed. This in turn could have caused me to become more left brained when I am actually a right brain thinker. This actually could be somehow overloading the theoretical hard drive of my brain and thus forcing my brain to think differently that it was naturally meant to do. I think that a seizure is similar to bipolar because it is your right brain and your left brain both working too hard on overdrive to solve the problems at hand. This for me only happens when I am sleeping or in sleep mode. So before I go to sleep I try to think of all the solutions for my problems and imagine they are no problem and pray to overcome. Sometimes if you just believe you can overcome it is good enough to let the mind rest easier.
Head Trauma 1

In 3rd grade I was playing in the woods with my best friend Wesley we had found some old metal bars that are used when pouring concrete and we were making a path through the woods down by Malette Park in Red River, NM. We were swinging those bars and breaking down limbs. He did not realize I was so close behind him and he hit me with the metal rod in the face. I was so freaked out at the sight of blood my lip was bleeding all over that I hopped on my bike and started riding back to the SageBrush Inn where Mom worked. My bike had been laying in a ditch and as I was riding it the chain was clicking because the chain had fallen off. So I bent down to look at it and when I came up I had moved over just a few inches to the right and there was an SUV directly in front of me. My face planted right into a parked SUV. I busted my lip right in half I had a headache for most of the day. I do recall besides the headache my lip did not hurt at all it was as if the nerves had been severed.
Repetitive Nightmares

I do remember having some really weird dreams one summer day I think I was in about 4th grade this is before I had a seizure. My dad moved to Albuquerque to be closer to me. My siblings were not to happy that they had to uproot their lives move from Kansas to New Mexico. I do not think I had ever had a seizure that anyone had known about at this point. Dad was living at an apartment complex in Albq. This could have been a warning I was having dreams of cartoons characters that were very vividly real almost as if I was partially awake while dreaming possibly because it was already light outside. These creepy cartoons were no animations I had ever seen before and they were all laughing at me. Hysterically laughing and completely terrifying they had creepy teeth and they were not as scarey as the feeling I got inside of not being accepted. I told my step Mom and she gave me some papaya pills. I went to work with her at Frito Lay for that day. THis may have been the summer of third grad I had faied that grade and had to go to summer school it was completely mortifying. My teacher did not fail me because I was actually failing she failed me because my Grandma had worked a division problem out on the paper and erased it so my teacher Mrs Davis took it upon herself to assume I was cheating and that my Grandma must be doing my homework for me. This was the farthest thing from the truth. Maybe I still do have these dreams but my epilepsy meds and any kind of downer I take for sleep aid do not make it easy to remember your dreams. I hadd quite a few other repetitive dreams that I can not longer remember at all.
Head Trauma #2

The year before I started having seizures I was in 5th grade. I had a mean girl talk me into doing a flip on a swing. (Yes you Shasta) as I was trying to hold myself up to flip around the Little witch pushed me and my forehead went straight into the concrete. I got a pretty good little knot on the top right frontal lobe. Mom freaked and rushed me to the doc as soon as I got home. The doc said I would be fine and not to go to sleep for a while in case of a concussion. He told Mom there was nothing to worry about and as far as I can recall there were not any scans done at that time.
Leading up to the seizure.
;1993 Winter

My first seizure.
I really don't remember much about the reason I had the seizure. I don't recall any major changes or anything.I do not remember Mom did not have any boyfriend or husband with I am not sure but I had received some severe embarrassment because once again I trusted someone who acted like they were my friend. (Shasta) The whole school laughed at me. Maybe 3 years straight of bullying and hate mongering finally took its toll. I had no real friends in the 6th grade that could really stand up for me or stop the bullies and I was far too outnumbered. I had a few good friends but they would only get bullied if they befriended me. I was always taking my earrings out worrying that some cholo was going to rip them out. I had quite a few enemies. We got a new teacher that year who was a great teacher but she was a real Ball buster Mrs. Durbin. She liked to intimidate and she reminded me very much of my Grandfather. She loved our class so much that each year that we moved up a grade she came up a grade with us. I do recall passing that year but just barely like the passing grade was 65 and I got a 69 which was not good. Mrs. Durbin could see the potential in us that and she would help us to be better and strive for perfection. I even gave up trying to be myself and just tried to fit in. I did try to start playing basketball that year and when my grades went down I had to quit and I was made fun of a lot more than normal. I was healthy I could out run almost everyone in my whole class. Now that I look back on it there may have been 1 head cheerleader that was pretty pist I could now outrun her.
Seizeure # 1

I don't remember anything from the night before. I have no idea what caused it. I am pretty sure it was cold and I was sleeping on the couch in front of the fireplace. After my seizure I just remember my first memory was when I noticed we were not heading towards the school we were heading to Taos. Mom was shocked that I asked "Where are we going Mom?" and she was like The hospital baby you had a seizure. She could not believe I did not remember getting dressed or anything up to that point we were almost out of Questa. I was freaking out because I did not remember getting myself dressed. Or getting in the car or taking my sister to school or if she rode the bus or if she was even there. Vague bad bad days. I do feel like my own brain has blocked out some of these terrible memories because they are soo hard to remember.
Seizure #2

Summer 1993

It was a little while later probably that summer I went to stay with my dad for a week when I got there Mom told him I was almost out of medicine and to be sure to get me a refill.Knowing the side effects of the meds made me drowsy and there were all kinds of bad problems that the medicine caused he decided not to get my meds refilled. Three days after the Tegretol was out of my system I had a Grand Mal seizure also known as generalized tonic-clonic. I wonder sometimes if I had weaned off the medicine if maybe I would not be still taking it today. I am on Epitol now but at that time I was on Tegretol also known as Carbamazephine. I do remember coming out of that seizure and having to go to the bathroom and running to the bathroom. I did not quite make it the toilet lid was down and I peed all over the toilet seat.
The feeling that no one cares.

Seizeure #3

Summer 1996
Questa New Mexico -
My seizures always come sometime around 6am the next seizure I had was most likely because my boyfriend dumped me and I was quite depressed. Despite the fact that my Pediatrician told me not to drink and to partake in marijuana if I had a choice and I found myself at a party to choose weed over alcohol and not to drink. Well I did not have any weed or money and quite frankly I had no one that gave a shit. I recall calling my bff and her only telling me that she did not know what to say. I turned on some horror movies and drank for quite some time. Even when I finally went to bed I lay there having an all out Pity Party crying and thinking about how my boyfriend left me for a girl that was 21. She was way way hotter than me had tattoos and could even draw better than me. I think just knowing this chick was 10x better than me sent me into a spiraling depression. That year I had to take my school picture with another huge bump on the forehead. Because the next morning when I went into this seizure I catapulted across the room and got carpet burn on the right side of my head. My bed was next to the wall on the right side of the bed. So I must have really been flailing to get carpet burn on the opposite side of my head. Head trauma on frontal lobe #2 I recall waking up and they were asking me who the president was. Mom was crying hysterically with both hand on my face I saw the tears running down her face and I thought what the hell is going on. WHO IS THE PRESIDENT? I had to think about it for a minute Clinton. Finally it came to me. Mom said I would have died that day if it was not for my step dad who was thinking quick as my lips were turning purple he breathed through my nose to keep me from dying..Tears falling now ... THANK YOU DEANO I love you!!
Seizure #4

Winter 1997

Mississippi

On my next seizure some time had gone by but once again I was up late drinking and sneaking around with my boyfriend. Against my Mother's wishes. I don't know if guilt can cause seizures. I really was a good kid and being so heavily brainwashed by my cult religion (Jehovah's Witness ) The guilt of doing wrong was quite heavier than when I was younger. At this point I was well aware of the consequences of my actions. Yes the very stress of knowing you could have a seizure can most definitely cause a seizure. That night my boyfriend stayed the night. His best friend was supposed to come get him but he did not. Mom had already had a drink so she was not about to drive and decided to let my boyfriend sleep on the couch. Knowing the impending doom of punishment that was about to come down on me the next day kept me sleepless and once again drinking. I did indeed have a seizure but this time it was at 7am. Maybe it is because it was a saturday.So there was no alarm clock. Maybe its because I was in MS where before I was in NM different time zone. All my seizure in NM were at 6am. All my seizures in MS were at 7am. Seeing me have a seizure freaked out my boyfriend sooo bad that he went out to the yard to wave the ambulance in and puked in the ditch. I apparently said quite a few weird things while I was having this seizure and one of the things I said was my boyfriends name. This is highly unusual. I do not recall anything from any of my seizures thus far ever. On this particular time the first memory I have was waking up in the ambulance.
Sleep Walking


After this Seizure Mom tried to get me on some different medication I went to a doctor in Vancleve MS I think his name was Dr. Goodman. He took me off of Tegretol and put me on Phenobarbital I was on it for maybe a week and Mom found me in the bathroom in the middle of the night sleepwalking I had turned the curing iron on and I was halfway through curling my hair but I was dead asleep. So needless to say they took me off of that medicine and put me back on Tegretol. Probably a year prior to this I got Mono and I had also had a severe yeast infection and I had Mononucleosis. This was the second time in my life that I had Mono the first time I was just a little kid and I was in head start I missed a month of school in head start. Mono can turn into Meningitis and Meningitis can cause seizures. This does make me wonder if there was a link to the illness and my seizure.

Seizure #5
2007

I had another seizure some time close to this I was a day sleeper and working nights so this was a small seizure and I did not go to the hospital this time. Because I did not feel the full pain that normally comes after a seizure and I did not want to get another brain scan.
Seizure #6
2008

My Mom had been diagnosed with cancer and when she had her lung removed the stress of the surgery was soo bad that I had another grand mal seizure. This one I was awake when it happened I felt my body pulling me I was actually on the phone with a family member who had called to check on Mom. I made my hunny wake me if anyone called. - Big Mistake- I was right in the middle of listing to my Aunt Ella tell me something medical importance and I started to have a seizure. My body pulled into fetal position to my right and that is all I remember. Once again I went to the doc and got another brain scan and everything was fine. So my meds stayed the same. Once again I was taking my meds and had a seizure. Moral of the story...
Getting uninterrupted sleep and 8 hours of sleep especially when you are under severe stress is soo important turn your ringer off do what you have to so that you can get your REM sleep.

After 4 years of struggling and battling cancer Mom died and I was there I did not have a seizure most definitely I think because there was a lot of family there to help me carry this burden. I fear if I had been there alone that I could very well have had a seizure after witnessing the death of my Mother. Family is so important and after the loss of a loved one people seem to scatter and become reclusive. I have tried to not become a recluse. After Mom died I started meditation at the time in the day or night when I feel the most vulnerable or susceptible to having a seizure. I make sure that I stay positive and do not reach out to family or friends that are negative or narcissistic it will most definitely send you into a spiral of depression. I do not turn my back on friends that need me I just ensure to call the ones that are the most caring and understanding when I am sad or depressed.

I am now trying to ween myself off of my medication I have been on since I was 12 years old. So that I can get pregnant.