Bruno Fiacco

STAYING HEALTHY, THE EPILEPTIC WAY

I have been battling seizures for many years. I want to share my story and help others live better everyday.

Filtering by Tag: Onfi

HOPE AT THE END OF THE TUNNEL

     Onfi, Fycompa, Aptiom, Dilantin and Prozac

 

    For those of you out there looking for a happy ending to all of their sad stories as I was, there is Hope! Epilepsy is not a sad ending to a terrible life if that’s what you have or had in mind. Lord knows I did. For 26 years I have been messed up on meds, many different neurologists and every medication that there is still on the market. I was even a guinea pig many times for two medications including, which I am still on - Onfi and Fycompa at NYU Epilepsy Center for a week or two each over these past two years.

    I had thought for sure that this damn problem of mine was a lost cause and that I was to end up the rest of my life on mine and my parents couch, seat, chair, whatever I could sit on safely on and not injuring anybody because of my falling issues, as well as without a job either for the rest of my life. Not that it is any different yet today, still living day by day.  

   Here in New York and elsewhere you need to be totally seizure free for a year to drive, not that I blame them, nor do I wish to ever again anyway with all of the crazy drivers on the road, but, a full-time job I would appreciate deeply. Being seizure free to work again has to be approved by your doctor. New York, being Epileptic, is one of the harshest states in America and the world even. Not that I can blame them either for it because states like Texas allow you to drive again just after three months. Sooner if your doctor approves it. So all you cowboys get to jump back into your Ford F150 Super Duty’s much quicker if your brain allows it to. Most states allow the same, some do not even have monthly standards, Just a doctors approval.

    But, finally though, after all of these years there is ‘A light at the End of the Tunnel’ like they say. All hope is not lost as I thought for so long. Every year on New Year’s Eve I’ve wished for the same New Year’s Resolution. Not for a bicycle, car or toy but, ‘that one day this would all stop and go away’. Not totally but, that someone, someday would find the right dose, combination to settle my brain waves from acting up like crazy. Much more than a person without any problems.

This year though, I seemed to have finally got my wish!

    Am I an Epileptic for life, most certainty. Will I have seizures like I did in the past when I was growing up and able to work with, yes. There is no cure for one of the oldest problems that man-kind has ever had. But, finding the right dose of medications, something that I thought I would never find, can be. Many say that I am jumping too far ahead or that it is just a honeymoon affect or period. The honeymoons over! How far ahead do I have to look forward to since December 15th when all hell broke loose, almost killing me. Two months later although, I am still feeling fine, more than 95% better than before that crazy day!

    Not difficult to say but I never want to see myself in another ambulance, ever again or in another hospital bed as well! Call me crazy but, whofor that matter would like too.

No one.

    I used to call every bathroom, restroom or shower anywhere at any place a Death Trap! My parent’s house mostly was a different fall like no other place on Earth. As soon as I stepped in I fell. If I sat I fell, and if not, washing my hands surely dropped me down to the ground. And thank God as well that this has all almost stopped too. Unbelievable but true although, I keep myself safe as in wearing a helmet still if I am in my house or home.

   As well as I feel, this will not stop me from my semi-daily work of keeping up with my blogs, keeping up with my stories which are all sadly true as well as keeping my followers interested. Once again I am not healed or cured, nor will I ever be but, with the right medications, there just might be hope for you too!

    So There is Hope at the End of the Tunnel. May take some time, lots and lots of time unfortunately, but, possibly by tests, or not, you may find the right doctors with the right medications or answers to your problems is possible!       

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.