10-years with Seizures, twice-daily meds, a successful brain operation, and a new life to look forward to!

TLDR: I was 16 when I first discovered that I suffered from seizures, and that I would have to cope with them for the rest of my life. Over the past decade, I have contemplated brain surgery for a chance at a cure. Thanks to the development of the procedure over the years, and due to the worsening of my condition, I finally decided to take my chances with the 15% fatal/85% success operation odds. I underwent the operation in November 2014, and have not had any more seizures since. I am one of the fortunate ones, below is my story. Here is the long awaited story that I promised myself I would write to share with the curious minds of the seizure and epileptic world.Learning about this condition on TV (and on the internet) was shocking at the time, but never in a million years would I have thought that it would happen tome (diagnosed with seizures), and that I would later have to make the life endangering decision to go forth with brain surgery. However, I consider myself lucky, and am incredibly grateful to have had the opportunity to take this decision. None of this would have been possible without the incredible support of my parents - their financial backing, but most importantly their unconditional love and support. I hope my story can inspire or even just give a glimpse of a brighter future to anyone out there who is suffering. It all started in Manila (I am half Filipino/half French)when I was sixteen (I am now 27). It was Christmas time in the Philippines, and my extended family decided to rent a beach house to celebrate our reunion. I remember getting ready to dose off, after a chat with my American cousins, and a glass of wine. It was approximately midnight when I gladly took the left over spot on the couch. This is when my very first seizure struck. It was a word and an experience I was so unfamiliar with - I had fallen flat to the floor, and felt utterly intoxicated, to the point where the more familiar drunken state had reached incredible new heights. I could not stand on my own legs, latching on the walls was of no help, and I could feel that I was biting down on my tongue aggressively (it remained swollen after this 2-minute seizure episode). I could not realize nor understand what was happening within my surroundings. The next day was when I had to face reality. I had always been a teenager with daredevil ambition, and currently, my leg was in a cast. I woke up on a mattress in my parent’s room, with every inch of my muscles sore,as if I had run a 100 km marathon; actually, make that 200 km – I could barely move. Our reunion was cut short by a 2-hour ride to the capital’s hospital,which included a briefing from mum and dad. I could not believe it… Me?Seizures? What would this mean for the rest of my life? I have to say that the doctor at the American Hospital was one of the best and most straight forward (no B.S.) doctors I have ever encountered. She ran me through various tests, whilst teaching me new medical lingo (from CT scans, to EEGs, to forty-five minute noise polluting MRI’s, I can go on for ages). We discovered that I was born with two lesions over my eyebrows, both of which are symmetrical in size (~3mm) and location. From the laboratory scans, the doctor concluded that the seizures came from the right lesion only. After an endless barrage of our questions, the doctor informed us that the seizures began at this age due to the normal development of my body,the increasing stress of daily life, and the lack of sleep. We concluded the visit by discussing the option of a future operation, which would involve accessing my brain by way of a huge opening within my hairline (you can imagine my 16 year old facial reaction, as this was all coming at me very quickly), andI was prescribed a daily double dose of Tegretol medicine. That summer, we decided to seek out multiple opinions inFrance. I had the chance of doing several other MRI’s and CT’s, which all similarly concluded that an operation was a viable option. However, I declined,for several reasons: the cost, fear for my life, and due to the relatively low frequency of my seizures. A few years later, some dosage increases and a new improved medicine, I have learned more about my condition. The seizures happened at an average of 5-6 times per year, which seemed huge to me at the time, however,after learning that many epileptic individuals have the same seizure frequency,but per week, or even per day (in some severe cases), I felt humbled. I learned that missing a dose of my meds could lead me straight to an attack, but I quickly figured out that a phone alarm was a solution. Lack of sleep, stress, and the impossibility of controlling my partying habits in the ‘best and most carefree years of my life’, would also increase my chances of having a seizure. The peculiarity of my condition was that I could not tell when a seizure was coming. Most people can tell through physical on-the-spot symptoms. They might twitch a few times, or might feel their heart rate suddenly increase, hence, based on these warning signs, they would know to stay put within safe surroundings and warn a friend. However, I could not, they would just happen, and I would wake up surrounded by baffled and crying faces looking over my unresponsive body. The few times I did feel a seizure coming was when I was at unwanted social gatherings, where unfamiliar faces were surrounding the venue, and anxiety would spike and make me tense. In most cases, this type of social gathering would end up with people having to call an ambulance, leaving me with the same diagnosis and expensive medical bills to pay. The sad bit is that to this day, I have never seen it with my own eyes,but can only piece together the events based on the anecdotes from my flabbergasted friends, who had to place their wallets in my mouth to stop me from swallowing my tongue. I had several bad seizure episodes that made me realize how ignorant and immature I was being with this. On one occasion, I woke up in a bus on my way back to my university campus, sleep deprived, in a seat holding the handle of my 30 kg luggage (I had just visited my family) and the entire bus was looking at me. Someone had placed me back in my seat after watching me have a seizure. It always takes about fifteen minutes to realize in my rebooting groggy mind that I had a seizure. Explained simply, when you have a seizure,your brain short circuits, and your short-term memory is deleted. However, the deep and painful headache is like no other, and can only be traced back to an episode. Another time, when I was alone, I seized in the shower tub while standing up. When I woke up, I realized I had ripped off the curtains, and flooded the bathroom floor. Well groomed, suited up and even perfumed, during my first job interview via Skype for a position in the States, it happened. The interviewer had no idea what to do besides call my landline, where he got through to my parents who were in the next room. A family member jokingly mentioned that due to anti-discriminatory US laws, I would land the job, but I was too embarrassed to do a follow-up interview. Another time, at my last job in Manila, I grabbed a plate full of food from the buffet at the hotel I was working at. Hoping not to be caught by my boss, I hid in the emergency staircase,only to wake up in the hotel clinic with two black eyes, scabs on my face, and my boss holding my hand in terror. Finally, the worst episode happened in a hotel swimming pool. I was a foolish teenager, and the ambulance doctor declared: “This boy is either going to die right now, or end up a vegetable for the rest of his life”.I woke up two days later and had completely lost my short-term memory. I can imagine the roller coaster ride I have put my family and loved-ones through.There were, however, countless humbling life lessons throughout my illness andI hope that you will have your own epiphanies earlier than I did, and that you will stick to a stricter regimen and lifestyle. I really started to consider going through an operation nearing the 10th year anniversary of my condition. The two restaurants I was managing, and the 5-star hotel I was working for, announced their closure. The stress kept piling up, leaving more work for the rest of us,with people leaving daily. My seizures now accelerated to an alarming frequency;I had six in the last six months at the hotel. Additionally, my worst fear had come to be, a seizure in front of my colleagues, staff and guests. A solution had to be found. My loving and well-connected mother had heard of a breakthrough operation in the States, during which a pencil sized laser incision could cure my condition – for good, hopefully. After much research and deliberation, I decided to take a trip to New York, where I met with top doctors. The consultations cost an arm and a leg, but the good news was that the operation was available. They were ready for me the following day, but the cost was a lot less inviting – “300,000 USD”. My father, now in retirement,offered his love, his usual support and the green light to pay for the operation,but I learned that he would have to sell our family home in order to finance it.I had no intention to place my parents under that kind of financial stress, for something that happened only 5-6 times a year. I returned to Manila empty handed. My parents were living inHanoi, Vietnam at the time, and had met a reputable French doctor who had fled France’s bureaucracy to migrate to the humble French hospital of Hanoi. I took the short trip from Manila and met him. To my disbelief, this was it, he laid it all out for me, the same speech I had heard for years, and offered to take me in the next day for 1/15th of the NYC price. An hour and half of brain surgery, and I would be cured. I finally decided that my suffering, and that of my family, had to end, and bit the bullet. I was in the ICU 4 hours for post-operation recovery, as my parents grew tense. Finally, the nurse mentioned she was going to transfer me to my actual room. It’s at this moment that she pushed my bed through the sliding ICU doors, where I saw my parents, pale faced, looking fora facial reaction through my vegetable state. The rolling bed creeped up to a stop right next to my emotional mother,still seeking for a sign of life from me. This is when, with a grin on my face,I looked straight into her eyes and said: “I’m sorry, who are you again?” She paused and laughed hysterically, as she knew her son was finally cured. Please find full article here with pictures: https://www.quora.com/How-was-your-seizure-cured/answers/23248552 (with pictures) OR https://www.reddit.com/r/Epilepsy/comments/4lkaam/10years_with_seizures_twicedaily_meds_a/