SEIZURES, THANKING GOD, AND A RUBIK'S CUBE...

This is one of the most difficult things that any epileptic wants to hear. They will never be able to know what, why, where or when a seizure occurs. The worst thing that any family member, sibling or spouse could do is to get angry at a seizure, and that yelling causes and epileptic to do things so way out of the ordinary that people near you will get hurt as you place yourself in the corner of any room scared at what just happened like a child with arms crossed over their chest and worried about what else may happen.

And it’s never your fault!

Others may blame you for what you just did and continue with the agony put on your head, if you are younger you are probably stronger than the ones who stay with you, day by day - your caretakers. But, others will blame themselves for causing the problem to be worse and those are the ones that you appreciate forever for understanding your situation and they will say “Sorry, I shouldn’t have done this or that to make the seizure possibly worse”. You will feel at blame for your actions and most likely won’t remember what just happened, but others do, so ask them to explain in detail. You will say sorry, always, especially if someone did get hurt trying to keep you safe; and sometimes it can be bad; depending on the level of seizure.

If not we can thank God that the problem you may think you caused didn’t hurt the people around you - The people who watch over you - The people who love you!

You will thank God for things that you should thank God for. That you are alive, the ones you love are not hurt and come home to you every day. I tell my own family and others when they say things like, “Yes, thank God I found my car keys or thank God I found my cell phone”. I say, “Really, is that really what you want to thank God for, not that I’m still here and you're still here, that you woke up from bed this morning, but I can see that that must be very important to you”. And the best part is, nobody ever listens. You put the TV on and the first or last thing you hear in every sentence is Jesus Christ. If you are a religious person as most of you are, you should use his name in prayer or in church, by heart and never use it in vain.  

The Lord, our God was not sent down to us to have His name used in ridiculous ways but as our Savior Who was born and Who died for us. Who watches over us all the days of our lives and Who judges the living and the dead. If this is something that you have forgotten, then I pray for you to remember! I tell people who forgot or never knew themselves that there was one person here on earth who could and did cure the sick and the "demons" which were the epileptics. The deaf, the blind and all else, but the answer I get most sadly is “who?”. “His name was Jesus, have you ever heard of Him before?”.  Every day of my life, when I perform an action like getting up and walking to get a bottle of water or cup of coffee, I hate, but hear almost always, “Jesus Christ, what are you doing?”. And my reaction is always as I stop short, “First of all, I am not Jesus Christ, so stop and secondly, I only wish that I was so that I could stop all of the problems of the world, understand?”.    

This is something you can learn from and to teach others about what is going on in your head all day compared to others. Everybody knows what a Rubik’s Cube is, a 3-D combination puzzle invented in 1974 by a Hungarian sculptor and professor of architecture Erno Rubik, in which you have to get all six sides of different colors of the square together to an even and clean form, which some people say is an impossible game, but it is not so. There are literally 43 252 003 274 189 856 004 ways of solving the Rubik's Cube, so good luck. Now when you have figured that 3D combination out, compare that to the brain cells in a normal functioning brain. Take the Cube, scramble all the sides of the cube around in your hand to start the game over again and you now have the semi-functioning cells of an epileptic brain smacking into each other causing major problems that you need to figure out ways to control.

A Rubik’s Cube is a good puzzle for epileptics to keep their mind busy, put in control and away from things that trigger seizures from occurring. Once you figure that out you may be able to do things that you hadn’t thought before were possible keeping your mind straight. This is not something that you will hear from a neurologist because we need them for all of their studies and research.

And no neurologist will have any problem with you telling them what you do all day, what keeps you interested and busy. A hobby in life is one of the most important things to have. These are things they want you to do, how they want you to be and that you should be enjoying for a normal lifestyle. These stories are the stories that make them see that what they are doing is working for you too. If you can't share your life stories with them, either good or bad, how can a doctor help with anything that you may need them for!

And for an epileptic, that is alot!      

WHEN GRAND MAL SEIZURES ATTACK

               On midnight of Monday, December 14th into Tuesday, the 15th was a night like no other when my Grand Mal seizures had attacked me without one break at all; only increasing in power. The Power to Kill!

                That night, all night long actually I had Grand Mal seizures in my sleep. An ongoing nightmare from hell and at 3am that night I jumped out of bed and Michelle knew right away that something was wrong as this was something that I never, ever do. She jumped out of bed as I walked to the bathroom like a zombie, and back in fine. At 7am though when Michelle woke me up as usual to get ready,  I could tell that something was not right! I tried to fight the seizures off as usual, but this day was not a usual one!

                As I walked over to the bathroom towards the sink getting ready just the same as every morning, I fell back onto the leather chair with arms for myself to keep me safe from incidents like this. I was out falling back onto the chair, Michelle helped me off as I was sliding already and laid me down on my side. Laying there for 5 minutes unable to rise Michelle quickly called my parents over. I was spitting out blood from my mouth from my bitten tongue, but not much, not yet anyway! My parents arrived, helped me up and I told them that I did not want to go back into the bedroom because I’m afraid that this time I may not wake up. I sat on the couch and thought that I was fine, for the moment. Michelle called work and said she would be working from home because she knew that this was going to be an awkward day, and was so right!

        A few minutes later another attack occurred, just the same and they called for me an ambulance as I lay there on the floor. The ambulance arrived and got me down and into the truck without any further problems, yet! Michelle and I had to persuade them into not taking me to the local hospital because we had experienced this in 2012 that they had no experience whatsoever with Epilepsy there and finally to NYU we went. Nothing happened to me on the way there thankfully because I can’t even imagine what would or could have happened. Into the ER we went and I waited there on a stretcher in the hall way and then into an oxygen sealed room in the ER when Michelle’s sister Nicole and my new sister in-law, Despina arrived. I told Michelle to go get them both from the waiting room and bring them in. I was told the next day that they had stayed the entire time that I was in misery and I really appreciated it more than they will ever know. I love them both so much!

        They escorted the four of us up to the 12th floor which is the last that I remember of them, or anybody. Including myself. I was escorted into a room, rolled off of the ER bed and onto the hospital room bed and this is when I needed to be filled in of everything that happened to me for the next 5 hours. What happened next - let’s just say I would have been shot dead or burned at the stake 100 years ago for sure. You know the saying ‘There’s a Devil living inside of you’. Well that day, the Devil came out! And by far it was THE MOST HORRIBLE DAY IN MY LIFE! A day in which I wish and pray will Never Ever Happen Again!

        For 5 hours or so the doctors, nurses and even the hospitals bodyguards were called in to try to keep me and my Grand Mal seizures under control. Well, at least they tried because they lost. My Grand Mals kept my body, not me, jumping up and smashing myself back down again onto the bed. No one was able to hold me down long enough to stick a needle in my arm, no one. Not my brother Michael or my father even who tried to give in a shot. I remember them trying to tell me to stop, slow down, stay down and I looked at the bed, side to side and the end and noticed every nurse and doctor, my own neurologist and the foot of my bed with the spookiest look I had ever seen. That time and that time only had my retarded brain not functioning well given me any memory, not that I would have wanted to remember, but my body was feeling the pain though. During this time as well my tongue had been chewed on side to side but luckily was still attached and not bitten off which can certainly happen.       

        After all of the fighting, punching and kicking with everyone trying to help, I woke up the next morning and I was confused of course. I felt like I had been shot in the head 25,000 times with bullets from every direction. I looked down on my left hand which had a needle in it and an IV. I had one on my left arm I remember, but I yanked the damn thing out, I was told. No surprise there, have done it before but not like this. I was looking around at my body, noticed some bruises on my arms and legs from trying to be held down. Bruised, but not battered. And of course 24 wires connected to my head, an EEG which I felt nothing of them doing it. An hour later Michelle arrived and hugged me tightly, happy to see that I was alive and well. She had thought that I had been lost forever. I was in such pain I remember asking her “How did they get it to stop”, Couldn’t they of just knocked me out over the head or something”. Not joking either with a straight face.

        She goes “How, they couldn’t grab you, you were too fast and strong for them” ‘Your joking with me right, you must be kidding me’ “No joke, it took a long, long time to get you to stop and a lot of medication pumped into you”.

“Well that makes sense if you say so since I’m a bit bruised up here and there and my tongue hurts too, I’m guessing I’ll definitely be here the rest of the week” and I was until that Saturday. ‘Yeah well you chewed on it a bit and they called in for help, but you kept pushing them away and they kept saying that you're too strong for them’.

        That made me giggle a bit and I said “Well lets pray that that never happens again”. Michelle stayed with me the rest of that day and laid in bed with me too, filling me in with more info and talking to the doctors. Told me that Michael ran out of the room angry, devastated as everyone was, and punched the wall saying “Why is this happening”. My family had never seen something like this before. My parents came to visit me that Wednesday too and my father saw me there on the bed, okay and all and laughing saying “They had a hard time holding you down, you kept breaking away from their grip” ‘Okay dad, I never want to be reminded of that day ever again, no matter how crazy it was, let’s just be happy that I’m still here okay’. I had other visits throughout the week and phone calls on a hospital phone I asked for from family and friends. For two weeks I had stayed off of my computer and cell phone still till today.

        I was so frightened that I almost cut my cell phone out forever because I know more than most the problems they cause. Computers as well, but I kept that more under control with being timed on how long I stay on one. Wednesday I was looking at my tongue with Michelle’s phone and we noticed that amazingly it was healing and quickly too. I had no medication for my tongue, if there even is anything for a tongue unless you bit it in half.

       Michelle had brought me a book because she knows me well, but this sweet lady, not a doctor or nurse even, but was more like a nun who worked for the hospital, yet not dressed like one, had said a prayer for me, with me, for my aunt that passed away the day before. I was sad that I missed the wake and funeral from being trapped on a bed in a hospital. The next day, the same woman visited me with a Bible in her arm which I was eyeing, but another patient had asked for it and yet, she offered it to me, but I told her that I couldn’t possibly take it since another patient had asked for it. Even so, she still noticed me eyeing it and said to me that the hospital had plenty of them, so I thanked her gracefully. It seemed though after reading it - the nurses, male and female, started looking at me and asking me as well what my favorite part was of the Gospels - Matthew I told them; my favorite disciple of Christ. It seemed to me that they had been shocked that a patient, a young one, was reading a Bible. Makes everyone smile more. I truly believe that Jesus Christ is with us always I told them and that I am a better man for it.   

        Some things though do happen for a reason, everything in life has a purpose I believe. And Tuesday was no different. Already I am on Onfi, Fycompa and Aptiom. My neurologist put me on Dilantin Wednesday and an Italian neurologist who I had just met for the first time did a study in Rome on a few Epileptics and found that Prozac, although primarily used for depression, which I am not, works well for seizures. Since I have already tried every medication already how could it hurt. So I said yes along with the four others throughout the day, morning to night. Prozac is taken just once in the morning. All three of these meds combined; and I think that the Prozac is the key medication in the large dose of meds every day that I have been on for years. Since starting the Dilantin again as I did when I was young along with the Prozac my falling has slowed. This is no cure because there isn’t one at all, but finding the right doses of meds can keep an Epileptic, like myself Under Control! PROZAC who knew right!

        I always believed that something has to work, something was missing or not found yet to keep my brain waves calm. But this neurologist had an idea, an awesome idea that just possibly a pill for depression which has been around for years could be the key drug for Epilepsy, combined with others.          

SLEEP INJURIES

This is a problem that has occurred many times in the past and most recently Sunday, November 22nd at I a.m., November 28th at 7p.m. and the very next day in the afternoon around 1. This has been an extremely bad and weird and painful time for me. Not saying it’s over either because, as I write about these days another one tends to happen which makes me throw in another part of my story, although, this is quite different!

After I came out of the shower all fine that night and Michelle in on the 22nd, she comes to bed where I am in the center of and tells me that she heard a big bang and that it could only mean one thing, that “You must have fallen off of the bed, again”. I told her that “how could that be, I’ve been here the whole time and wouldn’t it make sense if it did I would feel something, like an injury perhaps”. Well when morning came about the injury on my head, right side as before, two, one on my forehead and one below near my ear. I asked “How could this be, Michelle I didn’t even feel a thing last night and yet today I have this rug burn on my face”. I would have gone on and on about my accident but being epileptic it was no surprise at all!

Michelle said that she jumped out of the shower when she heard the bang, almost hurting herself running out of the shower and that she could have hurt herself, but I was right there in bed under the covers which makes it even more difficult to figure out and believe. Michelle got into bed and I kept my distance because I could have grabbed her with my left or right arm and tucked under her and flipped her over with me easily, with me then on top. I would have stood up, walked back into bed easily over her body without the slightest recollection of what had happened and woken up to an injured or worse wife. So for that matter I kept my distance on the bed and yet not far because the last place we wanted me to fall asleep was on the edge.

Monday morning came and at first didn’t feel another thing until I got to my parent’s house for the day when I found a pain on my inner left leg from my knee to my foot, and the only wise and proper thing to do was to call Michelle. I asked her if I had gotten into any other injuries over the weekend because of the pain that occurred and she had answered me “No, not a thing, it had to be from the accident off of the bed”. I looked down at my sore leg with my one jean leg pulled up and started to laugh at myself as my mother walked in saying what’s so funny until I showed her and laughed as well. I told her “Apparently nothing can hurt me, I fall all over the place and yet I’m still here, can’t wait to see what’s next” still laughing at myself.

My mother had not known because I forgot myself to tell her what had happened when she asked me her usual question, “How was your weekend”. I answered as usual “Just fine, no major issues” forgetting what had happened until this reminded me so. I told her that it is very, very odd and would have been worse if Michelle was there but luckily she was in the shower and yet I’m not saying it was smart to run out and possibly slip and thank God she didn’t. I say this to you, not my mother, so that you do not, we don’t need more cracked skulls abound!

If this is an issue that may occur to you there is something that can be done to help the easy way, get yourself if you do not already carry a large body pillow and place it on the floor you fall on if it happens as often as that in your sleep. I did myself but stopped using it once it stopped because it is not something that occurs as often plus I have a cushioned rug on my side, a much bigger side to fall onto as well!

So in the past these injuries occurred on the bed just the same as well as on the couch by myself during a nap as well as on November 28th. A seizure will throw yourself off of any sleeping/napping position you may find yourself in as, say, on the floor of its choice over the arm or as others make mistakes in, rolling off of a couch, but there is a difference in them from us. They may find themselves getting up from, a stupid accident on their shoulders, arms or legs fallen on. We on the other hand do not see it nor take it as easily as that. Not every time, but mostly, we find ourselves on our heads flipped upside down or over from a couch two feet off of the ground and it pain!

I would not write about it otherwise! Someone will find you on the ground in very awkward places or just right there on the floor where a pillow was put under our heads because we were not able to get up, not just yet, but when the time comes to get up you will hate yourself for what has happened again. Now awkward places are truly awkward places to be found. I would not believe it if I was normal, but since I am not I actually cannot complain or argue about the incident that occurred. I have found myself, my head per say mostly, lodged into every unordinary place, living rooms, family rooms, kitchens, but mostly and actually daily it has become, the bathroom. For that matter, I try to stay away from going as un-normal as possible, because who of us would like to find their heads lodged between a toilet-bowl, counter or garbage can. Surely not I!

Seizures are so strange as I have already said, you don’t know when or why they will attack! November 29th was no different than the previous two, but yet, this time I was already on the floor in the same spot where I had fallen off of the couch. I laid myself down on the rug with a pillow and a blanket that Michelle had put on top of me as I napped and about an hour later, although already on the ground a seizure caused my body to shoot-up and slam me back down onto the floor like a bomb had just exploded. My entire body shook as well as I lost both my speech and movement. My body laid there half dead for an hour afterwards!

So as it seems for an Epileptic, there is no safe place, whether it is the bed, couch or floor, seizures will prevail! Sad but true and sometimes it is worse for the other person watching!           

Sleep injuries will happen, sometimes often, so stay safe, keep your body centered on whatever you are sleeping on and make sure you have the ground cushioned so you are protected!