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Lifelong Epileptic with no end in sight

Hello everyone! I don't know if anyone is going to read this or respond, but I reached out and I was told to just share my story here.

I am almost 32 to give you an idea of how far back this is. So I split my head open at a young age which *I* believe triggered my epilepsy. I know that many people also believe that it is not genetic, but both of my parents have it. I just happened to draw the short straw and my older siblings didn't. So I split my head open when I was 18 months maybe? Then the epilepsy came about when I was around 4. Sorry I'm not providing super specifics, it's just little pieces that I don't think matter too much in the grand scheme of things.
So I then had epilepsy, had a seizure at a Christmas party and because my mom has (or had, she may have figured hers out with diet, I don't really know) grand mal seizures my dad just sortof jumped into action. After this my parents tried a homeopathic remedy which worked for a few months but then they came back. The doctor I got put me on dilantin (however you spell it) but that didn't do anything. At this point I was in kindergarten and never really fit in for these reasons. Eventually I became a liability and I was kicked out of kindergarten which I didn't understand at the time. Just knew that I wasn't going to school with my siblings. My brother walked away from the school when he was in 3rd grade because he got bullied by the teacher AND the other students around the same time so we both got kicked out. It just meant that the second part I was home schooled.

I went to first grade at a new school and from what I remember the teacher wasn't the nicest but it was a normal year. Then second grade happened and I found out that it wasn't as normal as I thought. Within the last year I found some old notes about an instance where I had a seizure on the playground and it scared the other kids. My dad said that the school should NOT give me oxygen and to try to get him or my mom before trying anything like that. Now, I don't really need oxygen when I have seizures and the only couple of times that it was given to me it was just protocol. In other words, my dad insisted on getting in contact with him before getting emergency services involved. Granted, with my epilepsy you used to just have to have it run its course and then I was fine, but this was in the early/mid 90's where everyone thought that you could swallow your tongue. Sometime in this my epilepsy turned into almost always being at night when I was asleep and daytime seizures were few and far between and I had been put on tegretol. I then had 3rd grade and to my knowledge nothing really happened, at least nothing written down that I can find.

I moved and switched schools going into 4th grade which was all kinds of fun. You know, that whole going into a new school after everyone had already made friends with each other. What was BS was I came in at the beginning of the year but then other people came in later on and they were accepted. (sorry, for some reason I'm still a little bitter about that but at the same time it kicked off the next 8 years of being teased) At this time my seizures were under control. I was on a fair bit of medication but I rarely had them. So I went along for most of middle school with this burden and was embarrassed that I had this invisible secret I didn't want anyone to know about. I thought people would make fun of my for it because growing up people did. Neighborhood kids would call me seizure boy. When I was 16 I dated someone who was friends with someone who knew the person who called me that growing up and I will never forget what she said to him. "Wow, seizure boy is still alive?" She held onto this for 7+ years just to be cruel.
Sorry for the diversions, a lot has happened with my head so it's hard to only say one part at a time. Soooo 8th grade comes around and my doctor starts weaning me off of my medication because I was on such high doses of it. So I get down to maybe a quarter of what I was on and he decides to switch me cold turkey from tegretol to I think it was depacote. I instantly had uncontrollable seizures and was either air-lifted or was put in an ambulance from Peterborough NH to Lebanon NH which is about an hour and a half drive. They put me on carbamazapine itself, not tegretol for some reason and then added lamictal to it as an additional booster. Thankfully I switched neurologists because, ya know, if he hadn't done that I wouldn't have nearly as many issues as I currently do. Him doing that sparked my epilepsy to constantly evolve and I'll explain that in a bit. Like I said, there's a lot that happened. So at this point I'm 14 and I have a new neurologist and on more medication. Between 13 and 17 I think I had a few EEG scans, MRI's, and a lot of other tests. I went in for the test where they make me have seizures then inject the radioactive liquid for it to go to the spot where everything was happening. I had the option to have a surgery at the time but my mother talked me out of it saying it was too dangerous.

Once I was in my second year of college I developed a new symptom which I just called twitches but turns out they were/are small seizures. I used to be able to get rid of them by drinking a ton of water but now they have grown into something more unpleasant. So I go another year of unpleasantness and then I finally decide that getting the surgery was the way to go. So in the fall of 2009 I got my first brain surgery and they opened my in the wrong spot. I think it was after this that they added Keppra to my medications. I went a few year and then moved to Colorado where I had MORE tests but got a better neurologist after a few tries. She had me go from carbamazapine back to tegretol which helped things for a little bit. There was one who I told about all my symptoms and he got more and more stressed. By now I was on more Keppra, tegretol, and lamictal. I found out the hard way that going from high altitude to lower and then back to high messes with my brain when I flew back to the east coast for my college graduation. I walked with the class of 2011 because I graduated in winter of 2010. Came back to CO and had such a bad seizure that I dislocated my shoulder. Went to the hospital, they put it back into place but put me in a sling which I was in for a bit. Then dislocated it via seizure a year later, then 9 months, then 6 months, then it turned into a more regular thing but I had an office job by then. I had two kids in this time and my ex was not very supportive of most of my brain issues and complained whenever I went in for tests. My shoulder became more loose and after a bit an ER doctor taught me how to pop it back it by myself. There was a time I actually had to drive myself to the hospital because it popped out of place somehow while I was at work. This that and the other thing happened (won't go into the awful details but I wound back on the east coast). Unfortunately it was without the two children who have since been brainwashed to think that it was my choice to leave. Sorry, stuff that doesn't involve my brain, just wanted to mention it in case people asked.

So, my brain gradually gets worse but in the meantime I start dating my future wife in the summer of 2016 and she is VERY supportive and helpful. I had these twitches like I mentioned before after any rough night but they were worse than before. We discovered that stress gave me a higher chance of having seizures. In the fall of 2017 I had another surgery and they found the exact point where the epilepsy is coming from. The only issue is that if they try to take it out there is a good chance I would lose motion on my right side. Since they couldn't take it out, I opted for the second best option - or so I thought. I got the Neuropace implant which was supposed to help my seizures. Instead it made it so if I had a rough night that I would have seizures the next day and they were more than just the little twitches I had before. After being in the hospital we discovered that if I took my medication before a certain time there was a lower chance of me having seizures. Over the next year I got married in May of 2018 but my brain only got worse. I suggested adding in Lyrica because it had helped me before and that helped for a little bit, only to fade into the background like everything else. My neurologist kept turning up the implant thinking that it would help things, but it only made things worse. I also dealt with and am still dealing with a Lorazepam addiction. My brain will give me an aura to make me think that I had a seizure the night before just to get me to take more lorazepam. On some days I will have to take multiple pills because my body will just burn through them which would just cause worse things to happen the following day. I tried working with my job to see if I could work from home on the bad days where it's lower stress but they refused to work with me. They let me go in May of last year claiming it was due to performance but I was one of the most efficient people working in my department so I don't believe they assessment.

So that's my story! We've since discovered that having milk is fine before bed but ice cream is not. I need to eat food the day after a bad day. If I go back to my old roots of drinking a bunch of water during the bad times it will actually help things. I'm still dealing with the lorazepam issues because it's a terrible medication where I usually need reassurance from my wife that I did not in fact have seizures the night before. I guess that's it?

Comments

Sounds like you have been

Sounds like you have been through a lot. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I’ve lived with epilepsy for twenty years now as a result of medical negligence. The Epilepsy Foundation just made an announcement on the Forums today that they are shutting them down effective July 1st, which I don’t agree with their decision, but I’m not in control of that. If there’s anything specific that you have as a question that I can help you with, I’m happy to do so before they close us down. One thing that does come to mind is that there are other Benzodiazepines that may be more effective in treating your seizure types than Lorazepam that perhaps you could talk with your doctor about. I was just placed on Clobazam, which is especially for intractable epilepsy and is less likely to cause dependency issues. It has a much greater success rate according to the research than other Benzodiazepines like Lorazepam. My Epileptologist was adamant that he didn’t want to try the other Benzodiazepines, but that the Clobazam might work and so far, it seems to be helping me whereas I didn’t have success with many other medications. I am on another medication (Topamax) at a high dose too (200mg twice daily), but I’m on a low dose for the Clobazam (10 mg at bedtime) and my seizures come from four lobes in my brain. 

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