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.

EPILEPSY IN 2016 Part II

TECHNOLOGY & IMPROVEMENTS

                                         SUDEP AND CANNABIS OIL

Researchers stimulate human amygdala to gain key insight into sudden unexpected death in epilepsy

    Researchers have identified areas of the human brain in which breathing is controlled and, in some cases, impaired. Sudden unexpected death in epilepsy is becoming increasingly recognized as a very real and devastating problem in which impaired breathing is thought to play a critical role. Researchers believe breathing may be impaired during and after seizures, without the patient's knowledge.

    Close up of a CT scan with brain (stock image). This study - which marks the first time researchers have stimulated the amygdala in humans and reported loss of breathing - is published in the July 15 issue of the Journal of Neuroscience.

    Sudden unexpected death in epilepsy (SUDEP) is becoming increasingly recognized as a very real and devastating problem in which impaired breathing is thought to play a critical role. Researchers believe breathing may be impaired during and after seizures, without the patient's knowledge.

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Cannabis-based drug reduces seizures in children with treatment-resistant epilepsy

    Children and young adults with severe forms of epilepsy that does not respond to standard antiepileptic drugs have fewer seizures when treated with purified cannabinoid, according to a multi-center study led by researchers from UCSF Benioff Children's Hospital San Francisco.

    "Better treatment for children with uncontrolled seizures is desperately needed," said Maria Roberta Cilio, MD, PhD, senior author and director of research at the UCSF Pediatric Epilepsy Center. "It's important to get seizure control at any age, but in children, uncontrolled seizures may impact brain and neurocognitive development, which can have an extraordinary effect on quality of life and contribute to progressive cognitive impairment."

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Pharmaceutical CBD (cannabidiol) shows promise for children with severe epilepsy

Significant seizure reduction in studies using CBD in combination with AEDs

    Around the globe there is high interest in the use of cannabidiol, for the treatment of people with epilepsy, especially children who have treatment-resistant forms of the disorder. Three studies presented at the American Epilepsy Society's 69th Annual Meeting in Philadelphia highlight emerging efficacy and safety data of Epidiolex, a pharmaceutical liquid formulation of cannabidiol. A fourth study highlights possible interactions of CBD with existing anti-epileptic drugs in animal models of seizures.
    Around the globe there is high interest in the use of cannabidiol (CBD), a type of cannabinoid, for the treatment of people with epilepsy, especially children who have treatment-resistant forms of the disorder such as Lennox-Gastaut Syndrome (LGS) and Dravet Syndrome (DS). Three studies presented at the American Epilepsy Society's 69th Annual Meeting in Philadelphia highlight emerging efficacy and safety data of Epidiolex, a pharmaceutical liquid formulation of cannabidiol, which is currently undergoing U.S. Food and Drug Administration (FDA) authorized Phase 3 pivotal clinical trials in the United States and across the globe by GW Pharmaceuticals. A fourth study highlights possible interactions of CBD with existing anti-epileptic drugs (AEDs) in animal models of seizures.

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EPILEPSY IN 2016 Part I

TECHNOLOGY & IMPROVEMENTS
Music & Marijuana

    Researchers at Case Western Reserve University may have found a new way information is communicated throughout the brain.

    Researchers may have found a new way information is communicated throughout the brain. Their discovery could lead to identifying possible new targets to investigate brain waves associated with memory and epilepsy and better understand healthy physiology.

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Can music help people with epilepsy?

    The brains of people with epilepsy appear to react to music differently from the brains of those who do not have the disorder, a finding that could lead to new therapies to prevent seizures, according to new research.

    The researchers found significantly higher levels of brainwave activity in participants when they were listening to music. More importantly, brainwave activity in people with epilepsy tended to synchronize more with the music, especially in the temporal lobe, than in people without epilepsy.

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Marijuana derivative reduces seizures in people with treatment-resistant epilepsy

Cannabidiol (CBD) - A medical marijuana derivative, was effective in reducing seizure frequency and well-tolerated and safe for most children and young adults enrolled in a year-long study, researchers report led by epilepsy specialists at NYU Langone Medical Center. These latest findings provide the first estimates of safety, tolerability and efficacy of prescription CBD in children and adults with severe, highly treatment-resistant epilepsy.

         These latest findings provide the first estimates of safety, tolerability and efficacy of prescription CBD in children and adults with severe, highly treatment-resistant epilepsy. Led by Orrin Devinsky, MD, professor of neurology, neurosurgery, and psychiatry and director of the Comprehensive Epilepsy Center at NYU Langone, the study is published in the December 23 issue of Lancet Neurology. While early findings have been released at medical meetings -- including the 2015 American Academy of Neurology conference -- these are the first findings from the trial to be published in a peer-reviewed journal.

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Medical cannabis treats Colombian 12-year-old's epilepsy

 Twelve-year-old Luna Valentina is epileptic. After 11 years of daily seizures, she started taking medical cannabis made by the Colombian company Cannalivio earlier this year, and her epileptic fits have since stopped. Video provided by AFP

Watch and Read More Here

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.