What happened to me

Hi, my name is Scot, I was born in 1969, I live in Canada and I have epilepsy. I've had it my entire life but didn't know it and didn't get my diagnosis until I was over 40. I've had both absence seizures and tonic-clonic ones ever since I can remember but never told anyone about the weird little spells I was having and they embarrassed my family so it all got hushed up. I lived a pretty normal life right up until about 6 year ago when the seizures suddenly stared happening more and more frequently and became more and more severe. I went to work one day and woke up in an ER with a torn rotar cuff, covered in bruises and cuts, feeling like I'd been run over by a bus. After all the questions and test they told me I had epilepsy and put me on an anti convulsant. I didn't take the news to well and didn't take my meds or any of the advice I was given. Things quickly went from bad to worst and over the course of the next year I had about 12 ambulance rides, 2 major surgeries, and lost 50 pounds. After one really bad incident that required an ambulance, police cars, fire trucks, an AED and about a month in a hospital bed I finally decided that the doctors might be right after all. I smartened up and started taking my med and everything else. Its been a struggle but I've been seizure free for over a year now. I got a lot of good and useful advice from this site and coming here always makes me like less of a outcast. I don't think I have much to add other than that but here we go anyway. The meds I`ve been on: Dilantin for 5 months at the max dose. I did try but I stopped after a month without telling my doctor. The side effect were just too much. That whole time is just a blur now. Valipoic acid for 4 years at the max dose. For me the side effect weren`t to bad. Kinda like being slightly intoxicated all the time. The short term memory loss became to much and I asked to be switched to something else. I work in IT and I couldn`t even retain a 7 digit password. I had to go to my bank and rest my PIN almost weekly because I kept on forgetting it. Getting to re-watch movies and TV shows I`d seen just the week before and not being able to remember a thing was actually kinda fun, same with music. It`s effect on the liver makes drink alcohol pretty much out of question and when I did drink, one beer felt more like six and the hangovers were as bad as the ones I got after a full on tonic-clonic seizure. My Doctor wanted to keep me on it but I keep complaining until the Doctor finally gave in and switched me to something else. Keppa for about 2 year now and still on it at 1500mg in two doses daily. Three pills with breakfast(8:00-9:00) and three pills 2 hours before bed(9:00-10:00). I can live with the headaches. They are pretty bad but in my case don`t last very long(about 5-10 mins if I don`t move my head too much). Almost feels like the headache is my brain telling me how the Keppa just prevented another seizure from occurying. I`ve haven`t had any rage issues but it`s something I still worry about. Sure do miss my morning coffee which I replaced with Gatorade. The really serious seizures I`ve had all happened while I was sleeping and I live alone(This is a bad combination but I have thin walls and nosey naibours). I`ve tried lots of different things to try stop them. I got one of those noise generators with white/pink/brown noises and tried that but it`s the sound of lightly falling rain or the ocean noise that feels the best. I also invested in a good memory foam pillow and mattress topper which really seemed to help me sleep better. I`m a side sleeper so what I did is I started keeping track of which side I fall asleep on and which side I wake up on, or if I have a seizure, what side I came to on. I then went out and got a cheap nylon backpack with padded shoulder straps and a pillow that was just a bit too big for the backpack. I stuffed the pillow into backpack, put in on and went to bed. I tried each side for about a week(left shoulder to the mattress for a week then right shoulder to the mattress for a week. I forget where I read about this online, could have been here. I was amazed I was able to fall asleep this way and though I`d be waking up all the time but that didn't happen. Not sure if it prevented any seizures but I always slept right though the night. I think Amazon sells stuff like this for people who snore or have sleep ap??? but the backpack and pillow is cheaper. Like a lot of us the things that seem to set me off are STRESS, bad eating habits, and not getting enough sleep or too much sleep. Stress stresses me out so much I get stressed just thinking about how stressful stress is. It gets so bad sometimes I can`t fall asleep because of all the stressful thoughts spinning around in my head. And since sleep is so important, especial of a person with epilepsy, this just stresses me out even more which makes it harder to fall asleep which just adds to my stress so I sleep even less....... When those thoughts I cant stop keep me up I try to simple spirographs behind my closed eyelids and for me this seems to work. Trying to remember old song lyrics also works for me. I stick to a high protein/low carb diet and try to eat my meals at around the same time everyday. One of the things I was sure was going to work was ignoring the whole thing and carrying on my life like I`d never even heard the word epilepsy in the first place. Turns out I couldn`t have been more wrong. Doing this almost killed me, well I guess technically it did for a bit. Another thing thats not going to work is not taking your meds. On the bottle my pills come in it says right on the label: May cause drowsiness or dizziness. Do not consume alcohol while taking this medication. If I had a meeting or some important stuff to do I couldn`t be drowsy or dizzy so I`d just skip the meds that morning. Or, I`d be going out and might drink a beer or two and like it says right there on the label, don`t consume alcohol so I`d just skip the meds again. Or even worse, I haven`t had a seizure in so long I must be fine now, don`t need to take my meds now or I`ll just take less than the Doc prescribed. I`ve done all this and paid for it. Missing you meds will mess you up. I`ve had absence seizures for my entire life and could never figure out how I would ever be able to explain to a doctor what it`s like. I`ve read some stuff on here and what was described was scarily similar to what I feel. Extreme feelings of Deja vu or its opposite(Not sure what it`s called and to lazy to google it). Being in a familiar place and feeling like you never been there before or being in a new place and feeling like you`ve been there already. I`ve read that seizures are like electrical storms in the brain and I sometime wonder(or possible read somewhere) that the storms cause our situational awareness to rapidly expand outward and the just as rapidly decay. So when you are some place familiar and suddenly you feel like you never been there before it`s because your expand awareness is taking in details you never notice before and when you are some place you haven't been before and the awareness expands and suddenly you have all this information about where you are that you normally would not have. My seizures or”Spells” only last a few second and after they happen I think my brain wants to keep all the new info it just got but has no where to store it and its the brain trying to save all this info that leads to the really bad seizures I have. I'm the type of person who can listen to a song over and over and never get tired of it. I also tend to eat the same meal at the same time at the same place day after day after day. Walking to work at the same time, the same route listening to the same song day after day after day. I think this is a bad habit and I`m trying to break it. Like a field of grass you cut cross every day it kills the grass and creates a dirt path after a while. So I`ve been try to take new ones until the grass regrows. If you made this far thanks for reading this and if your a member of this site already thanks for letting me know I`m not alone and if you new to all this, this is the site I found the most helpful. One last thing, being Canadian I`ve have easy access to legal weed. I was sure this was the answer to all my problems but it wasn`t CBD didn`t work for me. The only benefit I get out of it is the reduction in my triggers. A little bit of weed relaxes me(Less Stress) gives me an appetite( better diet) and makes me sleepy(Sleep). Too much weed or suddenly switching what I`m smoking or ingesting does the opposite. Makes me anxious(More Stress) Makes me crave bad carbs(worse diet) and keeps me up(Less Sleep). I only use when I have to and as a person with epilepsy I`m starting to feel a bit exploited by the ever expanding legal weed industry. The doctor I saw was told of my condition and what meds I was on but when I ask if he could tell me even one of the side effects of it, they guy had no clue and had to google right there in front of me. I never went back.