Yesterday I had my first seizure in 25 days. Then another one today, and I'll probably have at least one more by Wednesday. That seems to be how they work; They tend to come in groups.
I've gotten to the point that I can predict some of these seizures days in advance. I could feel this one building up for about 3-4 days before it happened. I don't know how to explain it, but I just knew it was coming and was simply waiting for it. I can't predict it to a specific time or even a specific day yet, I just know that it's imminent.
It was probably around Christmas, maybe the day after, that I started just waiting for it. It was only a matter of time before it came, and I was doing my best to figure out what I could do to prevent it. I'm still working on that part. I haven't been to the gym since Monday, but I don't know if that helped or hurt. I tried getting some extra sleep, but again I'm not sure if that had any effect.
I have most, if not all, of my seizure since May logged in 3 different places - my Google calendar, an app on my phone, and an excel spreadsheet where I can try to follow trends.
According to my spreadsheet the longest that I have been without a seizure, since I started the log, is 35 days, average days between seizures is 10.76, most of my seizures happen on Mondays and Fridays, and there have been 5 times that I've had seizures on back-to-back days.
I don't know what else to track at this point. I'm trying to make an excel formula to determine the max number of consecutive days in a row with a seizure (right now the most is 2 days in a row, but that could change) but I can't figure out how to format the formula. I found some formulas online that claim to work, but they don't give me any results (not even wrong results.) I can't really find an average seizure duration because most of the time it's basically impossible for me to find an exact beginning and end to the seizures, so my time is not very exact.
I'm still on both Keppra and Lamictal; I'm still feeling some of the side effects from the Keppra (emotional side effects,) I'm starting to feel some side effects from the Lamictal that are similar to what I felt with Tegretol (mental slowness) and I'm still having seizures, so I really don't know where to go next. I need to talk to the doc again and see if we have any other options. :-(
I'm so sick of playing with my meds, and trying to figure out if what I'm feeling is because of side effects of medication or because of some lifestyle change, and getting blood taken almost monthly, and feeling overall crazy because my body chemistry is constantly changing. Part of me wants to go without the meds for a while, since I'm still having seizures even with the meds, but part of me also says that it has been almost 9 years since my last tonic clonic, and that I might have one if I come off completely. I'm terrified of the thought of having more tonic clonic seizures, and what the possible consequences could be - physically, mentally, socially, financially... it could change everything.
I'm just straight up torn right now, and I'm starting to lose it. I've been doing this whole medicine thing for about a year and a half now, and it's starting to wear me down.
Sunday, December 29, 2013
Saturday, December 14, 2013
Frozen Frontier!
2 out of 10 isn't bad right? OK, it's terrible; Of the 10 tickets purchased, only 2 were used tonight - mine and Matt's - and that's because we drove together. But I don't blame the people who didn't show, there was so much snow that even I barely made it there.
For those who don't know what the heck I'm talking about, RIT played an outdoor hockey game tonight against our rivals, Niagara University. It was around 16 degrees for most of the game and snowing like crazy.
Anyway, we weren't too cold because we were in so many layers. I had on a pair of "warm up" pants from cheerleading under my normal pants, 1 pair of regular socks, 2 pairs of wool socks, winter boots, a wife beater, a t-shirt, my warm up jacket from cheer, 2 hoodies, a ski mask and gloves... and I had my leather jacket, another ski mask, another pair of warm up pants, and 2 blankets just in case. The blankets came in handy. A girl a few rows above us used one to cover her feet, we wrapped ourselves in them for a while, and used them on our feet for a while as well. But of course, I left the hand and feet warming packets at home. Throughout the game, only our finger and toes really got cold. Other than that we were both pretty toasty warm.
Our tickets were for seats in the section next to the corner crew (if you don't know about the corner crew, Google "RIT Corner Crew") but there were empty seats in the crew's section, so we joined the crew as we usually do. There was still a lot of yelling, screaming, cheering, chanting, and as always a lot of "YOU SUCK!" from the crew. Unfortunately, the pep band wasn't there, and the crew isn't quite the same without them. I heard they were at the women's game, and some of the instruments actually broke because it was so cold.
Oh yeah, and one of the guys from the crew was throwing out foam (I think it's foam at least) RIT hockey pucks for answering RIT Hockey trivia, and a few random puck throws as well. Matt and I both got pucks. (Matt's was a random throw, mine was for knowing that RIT Hockey went D1 in 2005.)
Overall it was a fun game to watch, even though it ended up tied at 2 - which kinda ends our 5 game win streak, AND Niagara's 5 game losing streak. I guess Rotolo is technically still undefeated in goal too, so that's cool. I got a few pictures too; I'm not sure how they came out yet but I'll post the good ones soon. It was a good time, and I'm sure it's something that I won't soon forget!
For those who don't know what the heck I'm talking about, RIT played an outdoor hockey game tonight against our rivals, Niagara University. It was around 16 degrees for most of the game and snowing like crazy.
Anyway, we weren't too cold because we were in so many layers. I had on a pair of "warm up" pants from cheerleading under my normal pants, 1 pair of regular socks, 2 pairs of wool socks, winter boots, a wife beater, a t-shirt, my warm up jacket from cheer, 2 hoodies, a ski mask and gloves... and I had my leather jacket, another ski mask, another pair of warm up pants, and 2 blankets just in case. The blankets came in handy. A girl a few rows above us used one to cover her feet, we wrapped ourselves in them for a while, and used them on our feet for a while as well. But of course, I left the hand and feet warming packets at home. Throughout the game, only our finger and toes really got cold. Other than that we were both pretty toasty warm.
Our tickets were for seats in the section next to the corner crew (if you don't know about the corner crew, Google "RIT Corner Crew") but there were empty seats in the crew's section, so we joined the crew as we usually do. There was still a lot of yelling, screaming, cheering, chanting, and as always a lot of "YOU SUCK!" from the crew. Unfortunately, the pep band wasn't there, and the crew isn't quite the same without them. I heard they were at the women's game, and some of the instruments actually broke because it was so cold.
Oh yeah, and one of the guys from the crew was throwing out foam (I think it's foam at least) RIT hockey pucks for answering RIT Hockey trivia, and a few random puck throws as well. Matt and I both got pucks. (Matt's was a random throw, mine was for knowing that RIT Hockey went D1 in 2005.)
Overall it was a fun game to watch, even though it ended up tied at 2 - which kinda ends our 5 game win streak, AND Niagara's 5 game losing streak. I guess Rotolo is technically still undefeated in goal too, so that's cool. I got a few pictures too; I'm not sure how they came out yet but I'll post the good ones soon. It was a good time, and I'm sure it's something that I won't soon forget!
Monday, December 2, 2013
Seizure Triggers
I have been trying for a while now to try to find what triggers my seizures, and I have a few which are possible culprits:
1) Diet - I started my "diet" in May. I put diet in quotes because it isn't your traditional diet. I cut out a few things here and there, but for the most part it was more of eating more often, and eating healthy foods at those "more often" intervals. These healthy foods include mostly fruits and high protein foods like nuts.
Recently, I've been a little more relaxed about this both parts of this. Mostly because my schedule changed with my new job, so I have to get into a new routine. I have not been eating as much throughout the day, because I simply forget, and I've been occasionally been drinking soda or other things that my body isn't used to any more. I've been mostly drinking water and milk with this diet, but I drink Snapple a lot at my mom's house recently because they have been buying it a lot. Usually tea is good for you, but I don' know where Snapple falls on that spectrum of "good for you" and my body just isn't used to that.
I want to look at my seizure log and compare it to my bank account receipts to see if I can figure out the times that I went to Wendy's, or the bar, or anywhere that I might have had soda. At my reunion I had 3 drinks in about a 3-hour period, but other than that I haven't been drinking alcohol so I can't really blame that. At most I'll average about a drink a month.
2) Exercise - I've been a little relaxed about the exercise routine lately as well. The gym was closed most of this past week, and I've just been busy doing other life things recently and haven't been able to get to the gym every night.
I need to compare my seizure log to my workout log again and see if there are any trends.
3) Light - Unfortunately this one is extremely hard to avoid, it's the one that I think is most likely, and it isn't going to be what you expect. I know most of you are expecting me to say "strobe lights are causing them." In this case though, that's not it. What seems to be more common is a constant intense light in a dark place.
What do I mean by that? A lot of these lately seem to happen while driving. Since it has been getting dark earlier, and the sun is coming up later, a lot of my driving is while it's dark out. All of the headlights shining in my face are very bright, and on the highway (which is where about 90% of my driving is) they are also very constant. Friday night, at my high school reunion, I was at a dark bar with bright lights shining on a dance floor that was in front of me. Saturday night I was in a dark living room in my brother's house watching TV. One of them that happened at the hockey game started around the time of the player introductions, where the lights are off with the exception of a spotlight.
I don't think I've had any of these seizure at home, and this would explain that. I ALWAYS have a light on in whatever room I'm in, except when I go to bed. This is because I like to have light when I'm looking at a computer or TV, and since I live alone having light on is comforting.
I could probably keep listing why I think this is most likely at this point, but I think that's all pretty convincing.
4) Allergies - this might be a stretch, but I think that they are sometimes worse when my allergies act up. I noticed it earlier this year when they were bad, and my allergies were pretty bad this weekend at my brother's place because of his cat - especially that night after I had been around the cat all day.
The diet and exercise are there because of the sudden changes in both, but I think they are less likely, and the allergies are there mostly from previous observations. I want to talk to my doctor and see if it's possible to get an EEG where they actually leave the light on for a while, instead of strobing it. If I can just sit in a dark room and have a bright light in front of me for a few minutes while connected to an EEG, we could possibly get some positive results.
I also think it may be a combination of these things, but I need to do some more thinking and studying myself and the trends a bit more to see where there are patterns.
1) Diet - I started my "diet" in May. I put diet in quotes because it isn't your traditional diet. I cut out a few things here and there, but for the most part it was more of eating more often, and eating healthy foods at those "more often" intervals. These healthy foods include mostly fruits and high protein foods like nuts.
Recently, I've been a little more relaxed about this both parts of this. Mostly because my schedule changed with my new job, so I have to get into a new routine. I have not been eating as much throughout the day, because I simply forget, and I've been occasionally been drinking soda or other things that my body isn't used to any more. I've been mostly drinking water and milk with this diet, but I drink Snapple a lot at my mom's house recently because they have been buying it a lot. Usually tea is good for you, but I don' know where Snapple falls on that spectrum of "good for you" and my body just isn't used to that.
I want to look at my seizure log and compare it to my bank account receipts to see if I can figure out the times that I went to Wendy's, or the bar, or anywhere that I might have had soda. At my reunion I had 3 drinks in about a 3-hour period, but other than that I haven't been drinking alcohol so I can't really blame that. At most I'll average about a drink a month.
2) Exercise - I've been a little relaxed about the exercise routine lately as well. The gym was closed most of this past week, and I've just been busy doing other life things recently and haven't been able to get to the gym every night.
I need to compare my seizure log to my workout log again and see if there are any trends.
3) Light - Unfortunately this one is extremely hard to avoid, it's the one that I think is most likely, and it isn't going to be what you expect. I know most of you are expecting me to say "strobe lights are causing them." In this case though, that's not it. What seems to be more common is a constant intense light in a dark place.
What do I mean by that? A lot of these lately seem to happen while driving. Since it has been getting dark earlier, and the sun is coming up later, a lot of my driving is while it's dark out. All of the headlights shining in my face are very bright, and on the highway (which is where about 90% of my driving is) they are also very constant. Friday night, at my high school reunion, I was at a dark bar with bright lights shining on a dance floor that was in front of me. Saturday night I was in a dark living room in my brother's house watching TV. One of them that happened at the hockey game started around the time of the player introductions, where the lights are off with the exception of a spotlight.
I don't think I've had any of these seizure at home, and this would explain that. I ALWAYS have a light on in whatever room I'm in, except when I go to bed. This is because I like to have light when I'm looking at a computer or TV, and since I live alone having light on is comforting.
I could probably keep listing why I think this is most likely at this point, but I think that's all pretty convincing.
4) Allergies - this might be a stretch, but I think that they are sometimes worse when my allergies act up. I noticed it earlier this year when they were bad, and my allergies were pretty bad this weekend at my brother's place because of his cat - especially that night after I had been around the cat all day.
The diet and exercise are there because of the sudden changes in both, but I think they are less likely, and the allergies are there mostly from previous observations. I want to talk to my doctor and see if it's possible to get an EEG where they actually leave the light on for a while, instead of strobing it. If I can just sit in a dark room and have a bright light in front of me for a few minutes while connected to an EEG, we could possibly get some positive results.
I also think it may be a combination of these things, but I need to do some more thinking and studying myself and the trends a bit more to see where there are patterns.
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