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.
Thursday, October 31, 2013
Epilepsy Awareness Month
In preparation of Epilepsy Awareness Month, my blog has gone purple a day early.
I'm not sure what else, if anything, I'm going to do this year. I may just post my facts from last year. I have been busy starting my own business, and getting ready to start a new job. Maybe I'll think of something though.
I'm not sure what else, if anything, I'm going to do this year. I may just post my facts from last year. I have been busy starting my own business, and getting ready to start a new job. Maybe I'll think of something though.
Thursday, October 17, 2013
It's been a while
It's been a while since I've blogged, so I think I'm overdue for an update.
I've been working on improving myself in every way - Personally, physically, professionally, medically, everything.
As most of you know I've been fighting to control the simple partial seizures that I've been having, and unfortunately I've been losing that fight. But that doesn't mean that I'm going to give up, I never give up. I'm increasing the dosage of my Lamictal (tripling it actually, over the next month and a half to 2 months ish) and I'm documenting everything that I can - seizure dates/times, duration, intensity, details of the seizure, details of the aura, everything I can think of. I will win this fight, it just might take some time.
Physically, I'm making HUGE strides. I'm down 30 pounds in roughly 6 months. People are starting to actually see a difference, and noticing that I have lost weight. Looking at the picture that they took of me my first day at eHealth (roughly 6 months ago) I can see chub in my face that isn't there anymore. I look and feel awesome. I'm starting to look like my high school self again. I've still got a ways to go before I look quite that good, but I'm well on my way.
I've lost so much that the HR person at work actually said to me "You look like you've lost a lot of weight" and I told her "Yeah, I've been eating healthier and I've been at the gym at least 2-3 days a week since I started here" and she responded "Good, I was afraid that something else was going on, but I'm glad to hear that it's intentional." - she actually thought that my weight loss was because of some medical issues. It's good news that it's not, but it's also good news that I'm losing enough weight to create that kind of concern!
Professionally, I'm working on making some changes to some of my existing apps (mostly Auto Respond) and I'm working on a huge project with some friends and my brother which will include an app, a website, and eventually some servers to push data to the app and website. I'm looking into making "Fifteen 15 Studios" an official company - probably starting with a DBA and moving forward from there - and if you didn't notice I'm officially changing the name from "1515 Studios" to "Fifteen 15 Studios" at the same time. The only decision I need to make now is to include a space in the official name or not - "Fifteen 15 Studios" or "Fifteen15 Studios". I've got some people working on logos and icons and things of the sort for both Fifteen 15 Studios and the new app/website. I've got a non-disclosure and non-compete agreement ready for when the business is official, and I might have some changes coming soon in my "day job" too; Details of which will hopefully be made public soon.
Personally, well all of this is just making me a better person, even the seizures. They have taught me, once again, to never take anything for granted. They have taught me how to fight through anything in life. They have taught me that I can work through them, and through any other fight that I may come across, regardless of how physically, mentally, and emotionally draining it may be. They have taught me that 7 years seizure free does not mean that they are gone forever. They have taught me what medicine can do to you, especially when you're on it your whole life and don't know what it's like to not be on it; And that has taught me how incredible my brain truly is when it's not bogged down by medication.
Plus I'm getting back into cheer, which I love. Starting with going to RIT's practices again, and hopefully joining a team again next year (most likely Core Athletix.) I'd like to start back into cheering regardless of the state of my seizures. I'm trying my best to train through the seizures, both literally and figuratively. I want to be able to have a seizure on a competition mat, and finish the routine despite the seizure. I want to be able to be sore from a seizure, whether it happened and hour ago or a day ago, and still be able to do anything that I need to do. I want to become physically and mentally strong enough that I can deal with anything, anywhere, and pushing through these seizures, the med changes, and pushing myself at practices and at the gym will force me to do that.
I am becoming the person that I was 10 years ago, only better, and that's an awesome person to be!
I've been working on improving myself in every way - Personally, physically, professionally, medically, everything.
As most of you know I've been fighting to control the simple partial seizures that I've been having, and unfortunately I've been losing that fight. But that doesn't mean that I'm going to give up, I never give up. I'm increasing the dosage of my Lamictal (tripling it actually, over the next month and a half to 2 months ish) and I'm documenting everything that I can - seizure dates/times, duration, intensity, details of the seizure, details of the aura, everything I can think of. I will win this fight, it just might take some time.
Physically, I'm making HUGE strides. I'm down 30 pounds in roughly 6 months. People are starting to actually see a difference, and noticing that I have lost weight. Looking at the picture that they took of me my first day at eHealth (roughly 6 months ago) I can see chub in my face that isn't there anymore. I look and feel awesome. I'm starting to look like my high school self again. I've still got a ways to go before I look quite that good, but I'm well on my way.
I've lost so much that the HR person at work actually said to me "You look like you've lost a lot of weight" and I told her "Yeah, I've been eating healthier and I've been at the gym at least 2-3 days a week since I started here" and she responded "Good, I was afraid that something else was going on, but I'm glad to hear that it's intentional." - she actually thought that my weight loss was because of some medical issues. It's good news that it's not, but it's also good news that I'm losing enough weight to create that kind of concern!
Professionally, I'm working on making some changes to some of my existing apps (mostly Auto Respond) and I'm working on a huge project with some friends and my brother which will include an app, a website, and eventually some servers to push data to the app and website. I'm looking into making "Fifteen 15 Studios" an official company - probably starting with a DBA and moving forward from there - and if you didn't notice I'm officially changing the name from "1515 Studios" to "Fifteen 15 Studios" at the same time. The only decision I need to make now is to include a space in the official name or not - "Fifteen 15 Studios" or "Fifteen15 Studios". I've got some people working on logos and icons and things of the sort for both Fifteen 15 Studios and the new app/website. I've got a non-disclosure and non-compete agreement ready for when the business is official, and I might have some changes coming soon in my "day job" too; Details of which will hopefully be made public soon.
Personally, well all of this is just making me a better person, even the seizures. They have taught me, once again, to never take anything for granted. They have taught me how to fight through anything in life. They have taught me that I can work through them, and through any other fight that I may come across, regardless of how physically, mentally, and emotionally draining it may be. They have taught me that 7 years seizure free does not mean that they are gone forever. They have taught me what medicine can do to you, especially when you're on it your whole life and don't know what it's like to not be on it; And that has taught me how incredible my brain truly is when it's not bogged down by medication.
Plus I'm getting back into cheer, which I love. Starting with going to RIT's practices again, and hopefully joining a team again next year (most likely Core Athletix.) I'd like to start back into cheering regardless of the state of my seizures. I'm trying my best to train through the seizures, both literally and figuratively. I want to be able to have a seizure on a competition mat, and finish the routine despite the seizure. I want to be able to be sore from a seizure, whether it happened and hour ago or a day ago, and still be able to do anything that I need to do. I want to become physically and mentally strong enough that I can deal with anything, anywhere, and pushing through these seizures, the med changes, and pushing myself at practices and at the gym will force me to do that.
I am becoming the person that I was 10 years ago, only better, and that's an awesome person to be!
Thursday, October 10, 2013
Depression
I'm not sure if it's my lifestyle, or my meds, or the seizures doing something funky in my brain, or some of the recent events in my life that have me down occasionally, or a combination of everything, or something I haven't even thought of... but for some reason I'm having very strange, yet almost scheduled bouts of depression.
It seems that every day I wake up completely depressed. I don't want to wake up, I don't want to go to work, I don't even feel like eating a lot of times. When I get to work I have to try not to punch everyone in sight, I have to walk out several times to just get some air and try to control my feelings, I have to fight the urge to just scream out all of my frustrations. It was so bad the other day, that I literally walked out of my office, sat down in a chair in the building's common area, and cried while texting someone to try to get myself back to "normal".
Then around lunch time I start to perk up. I start getting a small amount of positivity flowing in. I start feeling "normal", and start hating everyone around me slightly less. Then in the afternoon/evening I tend to get excited, happy, energetic, friendly... all kinds of good things.
The day that I cried in the lobby - I left work that night excited about some new ideas with my "top secret app", almost jumping off the ground with joy. I was glowing with happiness, it seemed as if nobody could do any wrong to me. I talked to my brother about some ideas, and getting a business started, and icon/logo ideas, and everything went from worst day ever to sunshine and rainbows in roughly 6 hours or so.
It's almost like I'm bi-polar, but instead of the switch being immediate it takes an entire day to flip-flop from sad to happy. I don't know if it's just that I despise going into work SO much that I put myself into this state of depression, or if its one or both of the meds doing something weird, or if it's something else.
I see my neurologist next Wednesday to talk about the meds and where to go next - increase the Lamictal or try something new, since I'm still having seizures. I plan on talking to him about this too, to figure out if it's possible that the meds are causing this. I feel like it is possible, but I also don't think that I'll know for sure until I either change my lifestyle/job or change the meds. Right now it's just a fight to not do something stupid every morning.
It seems that every day I wake up completely depressed. I don't want to wake up, I don't want to go to work, I don't even feel like eating a lot of times. When I get to work I have to try not to punch everyone in sight, I have to walk out several times to just get some air and try to control my feelings, I have to fight the urge to just scream out all of my frustrations. It was so bad the other day, that I literally walked out of my office, sat down in a chair in the building's common area, and cried while texting someone to try to get myself back to "normal".
Then around lunch time I start to perk up. I start getting a small amount of positivity flowing in. I start feeling "normal", and start hating everyone around me slightly less. Then in the afternoon/evening I tend to get excited, happy, energetic, friendly... all kinds of good things.
The day that I cried in the lobby - I left work that night excited about some new ideas with my "top secret app", almost jumping off the ground with joy. I was glowing with happiness, it seemed as if nobody could do any wrong to me. I talked to my brother about some ideas, and getting a business started, and icon/logo ideas, and everything went from worst day ever to sunshine and rainbows in roughly 6 hours or so.
It's almost like I'm bi-polar, but instead of the switch being immediate it takes an entire day to flip-flop from sad to happy. I don't know if it's just that I despise going into work SO much that I put myself into this state of depression, or if its one or both of the meds doing something weird, or if it's something else.
I see my neurologist next Wednesday to talk about the meds and where to go next - increase the Lamictal or try something new, since I'm still having seizures. I plan on talking to him about this too, to figure out if it's possible that the meds are causing this. I feel like it is possible, but I also don't think that I'll know for sure until I either change my lifestyle/job or change the meds. Right now it's just a fight to not do something stupid every morning.
Sunday, September 22, 2013
My Brain
WARNING: This is a LONG one, so be prepared!
I do a lot of thinking about a lot of things. Recently, I've been thinking a lot about my seizures - what causes them? How do I stop them? Will these meds work? What are they doing to me that I don't know about?
Background Information
But that's not all that I think about. Some of the people who have been closest to me recently know that there is something special about me. I study EVERYTHING. And I don't mean like studying in school. I don't pick up a book and read about things, I don't peruse the internet looking for random information. I see details that most people miss. I pay attention to things that others don't even know exist. And I think that's why I have never actually had to study in school. I see these details, and I analyze them over time.
I have told this to some people, because I can often read people better than they could ever imagine. I watch body language, I listen to voice fluctuations, I pay attention to breathing rates, I see eye movements... I notice everything. The craziest part? I don't try to do any of this, it just happens.
I don't always even realize what I've seen, heard, or felt, until later when I've had a chance to analyze the data that I've collected. And even this analysis is not usually done consciously. I will be sitting here at my computer and suddenly realize "Hey, when I said that her eyes opened slightly wider" or something similarly trivial. Or at least it would be trivial to anyone else. I collect this data, analyze it, and figure out what it means - all without any conscious effort. I realize over time that I've seen that eye movement before, and figure out that it means that she was scared, or that she was amazed, or whatever. Each small detail means something different, and I figure all of that out.
And I do the same with everything, everywhere. Some driving examples - I analyze traffic lights that I'm sitting at, I figure out the optimal speed to approach a turn, I watch the patterns of drivers on the road and know when it's safe to pass them, I can tell an unmarked cop car from the moment I see it (don't ask me how. I haven't actually figured that one out yet, I just know.)
My mind is an amazing thing, and I'm not just saying that because this is me that I'm talking about. Some people would see this behavior as over analytic, or possibly even crazy, or deranged. Personally, I see it as genius. The only problem is that I have an overwhelming knowledge of all sorts of random crap, and I can't seem to gain a mass of knowledge about 1 particular subject. As most of you know I am very into computers, but I still see myself as a novice in comparison to many others in my field. I know bits and pieces about all the different parts of a computer, but I can't even focus that one field into one specialty in the field. Part of this is because I can't focus on one thing. I'm too busy analyzing everything... but I can't stop it, it just happens.
Seizures
So why am I talking about this? Well I've had many theories about my seizures, and this is one that I've held for a long time. It is widely accepted that seizures are caused by an over-activity in the brain, and I think that me pulling in all of this information is causing an overload in my brain.
I bring in so much information that I'm not always able to process it as quickly as it arrives, and that causes the over-stimulation and therefore causes a seizure.
What kind of information leads me to this conclusion? Well, as far as I can tell, the two biggest triggers of my seizures are stress and fatigue. Not fatigue like after a workout, not fatigue like I just got done with a quick sprint, fatigue that affect my body and mind so much that I can barely move or think.
And what about the stress? I seem to have seizures when I'm focused too intently on one thing, and not processing the other information that is flowing in at the same time. When I get overly stressed, I tend to stagnate on whatever it is that I'm stressed about, and can't think about anything else.
Monday when I had the partial seizure, it started while driving home from a talk with someone who means a lot to me. Someone who I am trying desperately to cling on to some semblance of a relationship with, be it friendship or whatever. I was so focused on the talk, on what I could do to make the situation better, what I had done to get the situation to its current point, where did I go wrong?... but none of that really flowed through my mind as quickly as it should have. It was like a clog in the sink, it was stuck there. Other things were flowing through, but very slowly. I think this created a build-up of sorts and created an overwhelming demand on my brain that just could be met, and the sink overflowed.
This same thing actually happened with my last tonic-clonic seizure, over 8 years ago. I had just broken up with a girlfriend a couple months earlier, and was starting something new with another girl. I had an argument with the "new" girl, and came home to an online conversation with the ex. My mind was so focused on this situation... how do I fix things with both of them? How do I keep a friendship with the ex and still have a meaningful relationship? Why is she sending me this message online? Why does it have to be right after this argument?
It was such a build-up that I couldn't think about anything else, and I started into a seizure.
Now, don't get me wrong, I'm not blaming these seizures on anyone else. (At least 2 of the 3 of the people involved in these stories could potentially be reading this, and I don't want them to think any of this was their fault.) I'm just trying to make sense of my seizures, and analyze the one thing that I have failed to analyze all these years.
Resolution
So what's the solution to all of this? Well, for now it's medication. I was on one medication (Tegretol) for over 20 years. It wasn't until last year, when I finally came off of it, that I realized how much it was hindering my thought process. But I think that's why it worked so well. It stopped me from pulling in these details quite as fast, and it also slowed down the process of analyzing the details. But as well as the pulling in and analyzing trivial details, it hindered all of my thoughts. It sometimes stopped me from pulling in necessary details, which is why I had a tough time grasping some concepts (like center of mass in physics.)
Now we're trying other medications which have less effect on my thought process, but so far they don't seem to work as well. I think this is because of the fact that they don't effect my thought process. My thought process needs to be manipulated in order for the flow to continue uninterrupted.
Long term, however, I think there is a better solution than medication. I need to learn how to control this process that is going on in the background. I need to learn to never stop processing the information no matter what the circumstances. I need to learn how to free my mind of the "clogs". (Get some mind Drano.) Somehow, some way, I need to learn to control my mind in a way that I can still think clearly, but also control the processing of those thoughts. I'm sure that I can do it. I just need to start by focusing on gathering more data on myself instead of my surroundings, then I need do a bit more analysis on that data.
I do a lot of thinking about a lot of things. Recently, I've been thinking a lot about my seizures - what causes them? How do I stop them? Will these meds work? What are they doing to me that I don't know about?
Background Information
But that's not all that I think about. Some of the people who have been closest to me recently know that there is something special about me. I study EVERYTHING. And I don't mean like studying in school. I don't pick up a book and read about things, I don't peruse the internet looking for random information. I see details that most people miss. I pay attention to things that others don't even know exist. And I think that's why I have never actually had to study in school. I see these details, and I analyze them over time.
I have told this to some people, because I can often read people better than they could ever imagine. I watch body language, I listen to voice fluctuations, I pay attention to breathing rates, I see eye movements... I notice everything. The craziest part? I don't try to do any of this, it just happens.
I don't always even realize what I've seen, heard, or felt, until later when I've had a chance to analyze the data that I've collected. And even this analysis is not usually done consciously. I will be sitting here at my computer and suddenly realize "Hey, when I said that her eyes opened slightly wider" or something similarly trivial. Or at least it would be trivial to anyone else. I collect this data, analyze it, and figure out what it means - all without any conscious effort. I realize over time that I've seen that eye movement before, and figure out that it means that she was scared, or that she was amazed, or whatever. Each small detail means something different, and I figure all of that out.
And I do the same with everything, everywhere. Some driving examples - I analyze traffic lights that I'm sitting at, I figure out the optimal speed to approach a turn, I watch the patterns of drivers on the road and know when it's safe to pass them, I can tell an unmarked cop car from the moment I see it (don't ask me how. I haven't actually figured that one out yet, I just know.)
My mind is an amazing thing, and I'm not just saying that because this is me that I'm talking about. Some people would see this behavior as over analytic, or possibly even crazy, or deranged. Personally, I see it as genius. The only problem is that I have an overwhelming knowledge of all sorts of random crap, and I can't seem to gain a mass of knowledge about 1 particular subject. As most of you know I am very into computers, but I still see myself as a novice in comparison to many others in my field. I know bits and pieces about all the different parts of a computer, but I can't even focus that one field into one specialty in the field. Part of this is because I can't focus on one thing. I'm too busy analyzing everything... but I can't stop it, it just happens.
Seizures
So why am I talking about this? Well I've had many theories about my seizures, and this is one that I've held for a long time. It is widely accepted that seizures are caused by an over-activity in the brain, and I think that me pulling in all of this information is causing an overload in my brain.
I bring in so much information that I'm not always able to process it as quickly as it arrives, and that causes the over-stimulation and therefore causes a seizure.
What kind of information leads me to this conclusion? Well, as far as I can tell, the two biggest triggers of my seizures are stress and fatigue. Not fatigue like after a workout, not fatigue like I just got done with a quick sprint, fatigue that affect my body and mind so much that I can barely move or think.
And what about the stress? I seem to have seizures when I'm focused too intently on one thing, and not processing the other information that is flowing in at the same time. When I get overly stressed, I tend to stagnate on whatever it is that I'm stressed about, and can't think about anything else.
Monday when I had the partial seizure, it started while driving home from a talk with someone who means a lot to me. Someone who I am trying desperately to cling on to some semblance of a relationship with, be it friendship or whatever. I was so focused on the talk, on what I could do to make the situation better, what I had done to get the situation to its current point, where did I go wrong?... but none of that really flowed through my mind as quickly as it should have. It was like a clog in the sink, it was stuck there. Other things were flowing through, but very slowly. I think this created a build-up of sorts and created an overwhelming demand on my brain that just could be met, and the sink overflowed.
This same thing actually happened with my last tonic-clonic seizure, over 8 years ago. I had just broken up with a girlfriend a couple months earlier, and was starting something new with another girl. I had an argument with the "new" girl, and came home to an online conversation with the ex. My mind was so focused on this situation... how do I fix things with both of them? How do I keep a friendship with the ex and still have a meaningful relationship? Why is she sending me this message online? Why does it have to be right after this argument?
It was such a build-up that I couldn't think about anything else, and I started into a seizure.
Now, don't get me wrong, I'm not blaming these seizures on anyone else. (At least 2 of the 3 of the people involved in these stories could potentially be reading this, and I don't want them to think any of this was their fault.) I'm just trying to make sense of my seizures, and analyze the one thing that I have failed to analyze all these years.
Resolution
So what's the solution to all of this? Well, for now it's medication. I was on one medication (Tegretol) for over 20 years. It wasn't until last year, when I finally came off of it, that I realized how much it was hindering my thought process. But I think that's why it worked so well. It stopped me from pulling in these details quite as fast, and it also slowed down the process of analyzing the details. But as well as the pulling in and analyzing trivial details, it hindered all of my thoughts. It sometimes stopped me from pulling in necessary details, which is why I had a tough time grasping some concepts (like center of mass in physics.)
Now we're trying other medications which have less effect on my thought process, but so far they don't seem to work as well. I think this is because of the fact that they don't effect my thought process. My thought process needs to be manipulated in order for the flow to continue uninterrupted.
Long term, however, I think there is a better solution than medication. I need to learn how to control this process that is going on in the background. I need to learn to never stop processing the information no matter what the circumstances. I need to learn how to free my mind of the "clogs". (Get some mind Drano.) Somehow, some way, I need to learn to control my mind in a way that I can still think clearly, but also control the processing of those thoughts. I'm sure that I can do it. I just need to start by focusing on gathering more data on myself instead of my surroundings, then I need do a bit more analysis on that data.
Monday, September 2, 2013
Workout Plan
I'm about 10 lbs away from my current weight goal, so it's time to think about the second part of my fitness plan: bulking up.
I'm not done with the slimming down yet, especially since my initial goal was about 210, and my current goal is 200, but I think when I get down around 200 I'm going to want to lower it further. But still, I'm getting to the point where I need a plan for building muscle back up once I get to whatever my end goal may be.
This is not my first rodeo, I worked out constantly in high school. But unlike back then, I have knowledge about how much diet (and especially protein intake) effects your body's reaction to the workouts, I know a bit more about routines, and I'm just generally more ready to actually build some real muscle. However, I still don't really know how I want to do this.
I do know some things:
I'm not done with the slimming down yet, especially since my initial goal was about 210, and my current goal is 200, but I think when I get down around 200 I'm going to want to lower it further. But still, I'm getting to the point where I need a plan for building muscle back up once I get to whatever my end goal may be.
This is not my first rodeo, I worked out constantly in high school. But unlike back then, I have knowledge about how much diet (and especially protein intake) effects your body's reaction to the workouts, I know a bit more about routines, and I'm just generally more ready to actually build some real muscle. However, I still don't really know how I want to do this.
I do know some things:
- I want to do 5 days a week - Mon-Fri.
- I want to keep Tuesday and Thursday as purely cardio days.
- That will make sure that my cardio exercise doesn't fall by the wayside, and it will give me at least 1 day of rest between each muscle group.
- I know how to split up my workout days by muscle group
- Legs
- Arms/shoulders
- Chest/back/core
- I don't do a whole lot of core exercise, but I figured I'd put it with chest/back
- Arms cannot be immediately preceding chest/back
- When I do arms before chest/back, the residual weakness/soreness in my arms affects the chest and back exercises.
- Where do I put legs?
- I know that legs take the longest to heal, because you are using them constantly to walk. Do I want to do Monday and be sore most of the week? Do Wednesday, and be relatively normal for the weekend? Or do Friday and be sore all weekend?
So here's a couple possible layouts:
| Mon | Wed | Fri | |
| Option 1 | Legs | Chest/back | Arms |
| Option 2 | Chest/back | Legs | Arms |
| Option 3 | Arms | Legs | Chest/back |
| Option 4 | Chest/back | Arms | Legs |
Any valuable insight as to which one would be the best option and why?
Thursday, August 29, 2013
Falling Apart
You ever been in a rut where everything seems to suck?
Your job sucks, you're in debt like crazy, you can't even afford to do anything fun, most of your hobbies have fallen by the wayside for whatever reason, etc. etc.
That's kinda where I've been for a while. I haven't enjoyed this job since probably the first couple weeks. I'm actually negative financially every month since I've started this job, except this month (because I went a week without buying food or anything else while I was at camp.) I haven't been to a cheer practice, as a coach or a cheerleader, in so long that I can't even give much of a time line (less than a year, but not by much.) I've been having seizures after being almost 8 years seizure free, and I'm now in my second med switch in a year to try to control them. (Hopefully this switch will work out better for me.) I haven't talked to most of my friends in months - partly because I'm busy with my Android development, partly because of my off-kilter work schedule, and partly because I just didn't make the effort.
But the thing is, I didn't care. Yes, I complained about my job - I'd probably go crazy if I didn't vent to someone. I blogged about my seizures - but more to inform and educate others of my situation than complaining. And I have had to cut back in a lot of areas to keep my budget as close to the green as possible. But I didn't care about any of that because there was still one thing that was good in my life. One thing that made me forget about all of that. One thing that could make all of my worries disappear in the blink of an eye.
But that thing was not just a thing, it was a person. A person that I loved, a person that I still love very much despite her recent actions. A person who I don't think I could ever let go of... and that's the hard part. I know that I need to let go right now, even if only temporarily - until I get back to "normal". I know that I need to stop talking to her until my wounds are healed. I know that I need to try not to even THINK about her for at least a few weeks.
But all of that is obviously easier said than done. I think about her immediately as I wake up in the morning. I think about her when I'm watching movies by myself instead of with her. I think about her when I see all of this football news, knowing that she won't be with me to watch the games this year. I think about her when I take my meds, because I have been talking to her about her experiences with this medicine... I think about her constantly throughout the day. And then I think about her one last time while I'm laying in bed, and I debate sending her an emoticon kiss before I fall asleep - even though I know that it will no longer be appreciated the way that it was before.
So what do I do now? Well, the only thing that I can think of is trying to focus on the next best thing in my life... my increasing fitness level. Focus on my workouts and my diet, and try to think of the bad things while working out so that I can release all of that negative energy. The hard part is that I have to try not to think about that one good thing - the one good thing that I hope will come around and become a good thing once again.
Your job sucks, you're in debt like crazy, you can't even afford to do anything fun, most of your hobbies have fallen by the wayside for whatever reason, etc. etc.
That's kinda where I've been for a while. I haven't enjoyed this job since probably the first couple weeks. I'm actually negative financially every month since I've started this job, except this month (because I went a week without buying food or anything else while I was at camp.) I haven't been to a cheer practice, as a coach or a cheerleader, in so long that I can't even give much of a time line (less than a year, but not by much.) I've been having seizures after being almost 8 years seizure free, and I'm now in my second med switch in a year to try to control them. (Hopefully this switch will work out better for me.) I haven't talked to most of my friends in months - partly because I'm busy with my Android development, partly because of my off-kilter work schedule, and partly because I just didn't make the effort.
But the thing is, I didn't care. Yes, I complained about my job - I'd probably go crazy if I didn't vent to someone. I blogged about my seizures - but more to inform and educate others of my situation than complaining. And I have had to cut back in a lot of areas to keep my budget as close to the green as possible. But I didn't care about any of that because there was still one thing that was good in my life. One thing that made me forget about all of that. One thing that could make all of my worries disappear in the blink of an eye.
But that thing was not just a thing, it was a person. A person that I loved, a person that I still love very much despite her recent actions. A person who I don't think I could ever let go of... and that's the hard part. I know that I need to let go right now, even if only temporarily - until I get back to "normal". I know that I need to stop talking to her until my wounds are healed. I know that I need to try not to even THINK about her for at least a few weeks.
But all of that is obviously easier said than done. I think about her immediately as I wake up in the morning. I think about her when I'm watching movies by myself instead of with her. I think about her when I see all of this football news, knowing that she won't be with me to watch the games this year. I think about her when I take my meds, because I have been talking to her about her experiences with this medicine... I think about her constantly throughout the day. And then I think about her one last time while I'm laying in bed, and I debate sending her an emoticon kiss before I fall asleep - even though I know that it will no longer be appreciated the way that it was before.
So what do I do now? Well, the only thing that I can think of is trying to focus on the next best thing in my life... my increasing fitness level. Focus on my workouts and my diet, and try to think of the bad things while working out so that I can release all of that negative energy. The hard part is that I have to try not to think about that one good thing - the one good thing that I hope will come around and become a good thing once again.
Tuesday, August 27, 2013
Love...
Love is an amazing thing. It's such a unique and euphoric feeling when you love someone, but it's also the deepest, most stinging pain when something happens to that love.
The biggest problem, in my case, is that when I love someone I love them for everything that they are. I love them for their smile, for the way that their hair falls in their face, for the way that they cuddle with me, for that little imperfection right around the waist line, for their beautiful eyes - even if they are a color that most people wouldn't consider beautiful, they're beautiful because they're staring so intimately into mine.
I love the way I can touch a certain place and drive you crazy, because nobody else has taken the time to actually love your body the way that I do, and the fact that you can do the same to me. And that even if someone else does find your certain place, they won't be gentle enough to get the same reaction that I did. I love the way that you feel safe in my arms, and can fall asleep just because I'm holding you. I love lying next to you and feeling like time has stopped. I love falling asleep with you in my arms, even if just for a few minutes, and waking up with the most beautiful woman in my arms. I love the way that you kiss me in a way that no other woman ever has. I love that I know your favorite part of my body, and that you know my favorite part of yours.
I love that you will watch movies with me, and enjoy them just because I enjoy them. I love that you can put aside your passion to appreciate my passion for a day... and that I am willing to do the same for you.
But I hate that you can throw all of that away in the blink of an eye. That you can move on to something else without even mentioning it to me, and without thinking about how I will be affected. That you would let something like age, and other people's opinions, stand in the way of what we have. And I hate that you won't even admit that we had something special, something that neither of us will ever forget. I don't know how you can do these things, and I wish I could understand.
I hate that sinking feeling that I now have in my stomach, because I miss you every day. I hate that I can't even text you without feeling an intense urge to find you and hug you. I hate that I can't find single picture of just the two of us, anywhere. I hate that you are still the first thing that I think about when I wake up in the morning and the last thing that I think about before I go to bed... but I only hate it because it brings back that sinking feeling again and again. And I hate that you indirectly told me that you loved me, while simultaneously moving on.
And lastly, I'm afraid... afraid that I will never hold you in my arms again, never kiss you again, and never look into your eyes and see what I saw before. That I will never watch another movie with you cuddled up next to me. That I will never again wake up next to you, even if it is on a couch while watching TV. And I'm afraid that I will never be able to see you again without that same sinking feeling in my stomach.
But most of all, I wish that I hadn't waited until after it was too late to tell you all of this.
The biggest problem, in my case, is that when I love someone I love them for everything that they are. I love them for their smile, for the way that their hair falls in their face, for the way that they cuddle with me, for that little imperfection right around the waist line, for their beautiful eyes - even if they are a color that most people wouldn't consider beautiful, they're beautiful because they're staring so intimately into mine.
I love the way I can touch a certain place and drive you crazy, because nobody else has taken the time to actually love your body the way that I do, and the fact that you can do the same to me. And that even if someone else does find your certain place, they won't be gentle enough to get the same reaction that I did. I love the way that you feel safe in my arms, and can fall asleep just because I'm holding you. I love lying next to you and feeling like time has stopped. I love falling asleep with you in my arms, even if just for a few minutes, and waking up with the most beautiful woman in my arms. I love the way that you kiss me in a way that no other woman ever has. I love that I know your favorite part of my body, and that you know my favorite part of yours.
I love that you will watch movies with me, and enjoy them just because I enjoy them. I love that you can put aside your passion to appreciate my passion for a day... and that I am willing to do the same for you.
But I hate that you can throw all of that away in the blink of an eye. That you can move on to something else without even mentioning it to me, and without thinking about how I will be affected. That you would let something like age, and other people's opinions, stand in the way of what we have. And I hate that you won't even admit that we had something special, something that neither of us will ever forget. I don't know how you can do these things, and I wish I could understand.
I hate that sinking feeling that I now have in my stomach, because I miss you every day. I hate that I can't even text you without feeling an intense urge to find you and hug you. I hate that I can't find single picture of just the two of us, anywhere. I hate that you are still the first thing that I think about when I wake up in the morning and the last thing that I think about before I go to bed... but I only hate it because it brings back that sinking feeling again and again. And I hate that you indirectly told me that you loved me, while simultaneously moving on.
And lastly, I'm afraid... afraid that I will never hold you in my arms again, never kiss you again, and never look into your eyes and see what I saw before. That I will never watch another movie with you cuddled up next to me. That I will never again wake up next to you, even if it is on a couch while watching TV. And I'm afraid that I will never be able to see you again without that same sinking feeling in my stomach.
But most of all, I wish that I hadn't waited until after it was too late to tell you all of this.
Sunday, August 25, 2013
This Weekend
This weekend was awesome. The only bad part... I am a total wreck recently. I am messed up emotionally an physically.
Why? Well, there are many reasons. First, I recently went through something... big, that messed me up pretty bad emotionally. I'm still trying to find ways to get over it. What happened? Well that will be saved for another post, and even then I will likely not reveal all of the details. Right now I'm not really ready to talk about it though. There are 2 people other than me who know any details, 1 is kinda the cause of the whole thing, the other is one of my best friends over the past 15 years (give or take.)
Also, my meds are playing games with me. As you may know, I'm in the beginnings of switching medicine again. I'm still feeling the side effect of the keppra (lots of emotional side-effects) and I'm starting to get side effects from the Lamictal as well.
The Lamictal is causing me to be tired, which is expected, and it is also causing some dizziness. Usually for a couple hours after I take it, and right now it's only when I'm standing. If I'm sitting or laying down I'm fine. The label says "may cause dizziness", but so does every other medicine I've ever been on for my seizures, and none of them have ever actually caused me to be dizzy.
I talked to someone I know who is on it, and she said that she experienced the same thing while coming onto it, but that it goes away after your body gets used to it. But I can expect to feel this at each increase in dosage, which means I'll be dealing with it on and off for the next 6+ weeks, depending on how quickly my body adjusts.
So onto the good stuff.
My dad came in from Florida on Wednesday and is staying with my brother in Buffalo, then going back tomorrow (Monday.)
Saturday I woke up early to get some work done on my car. My tires are no longer slowly losing air, and it rides a lot smoother thanks to a fuel injection system cleaning. Then I drove into Buffalo to my brother's house, where I met up with him and my dad. From there, we were deciding what to do. We had a list of things that we wanted to do throughout the weekend, and were planning an itinerary of sorts.
We started by going to Niagara falls. We've all been there many times before (we = me, my brother, and my dad) but none of us had ever done the cave of the winds, and we wanted to do some other things too.. So we got a "Discovery Pass" which included the cave of the winds, the maid of the mist, a movie about the history of the falls, the aquarium, and a discovery center. We didn't get to the aquarium and the discovery center, but the pass STILL saved us money on the things that we did do.
The cave of the winds is the most amazing thing that I have ever experienced. You walk on a wooden deck of sorts and actually approach the falls on foot. I took some pictures, but as I got closer I had to put my phone away in fear of water damage. On the "hurricane deck", the water is so powerful that it actually hurt when it hit me. for about half of the walk I had to squint my eyes to see anything, because there was so much water coming at me and going into my eyes. So pro tip to anyone who wants to do that... buy some swimming goggles. Those small ones that cover only your eyes, not a mask, and a water proof camera.
The maid of the mist we had all done before, but it's still cool. You go onto a boat and approach the horseshoe falls. You get pretty close, and are basically surrounded by water on 3 sides of the boat at the furthest point. There is an upper deck and a lower deck on the boat. If you go on the upper deck you will get soaked. On the lower deck, in the front you still get soaked because it juts out a little farther than the upper deck. But the rest of the lower deck you can stay fairly dry.
For both of these (maid of the mist and cave of the winds) you receive a poncho to wear, which actually keeps you pretty dry underneath, as long as you actually wear it. Some people there took them off, or never put them on, and they got pretty wet.
After the falls we went back to my brother's place and built a fire in his fire pit. It was fairly comical because it took us forever to get it going, and my dad and my brother's roommate were basically commentary for the whole situation. I burned the tip of one of my fingers pretty badly... I grabbed a log to move it and touched the wrong spot. Luckily I put some aloe on it, and it healed up pretty nice. There's a small blister, but it doesn't even hurt anymore.
We went to make s'mores, but his girlfriend had filled the Graham cracker box with left over marshmallows and other goodies, so we had s'mores with only marshmallows and chocolate.
Today (Sunday) we went to the piece arrow museum. Pierce Arrow is a car company that no longer exists that was founded in Buffalo.They had some cool stuff in there too, I took some pics. Then we went to the Irish festival. We ate corned beef sandwiches and salt potatoes, and listened to some good music.
Finally, we went to see where my brother's new brewery is going to be. The company is in its infancy, so there isn't much in there, and the building is going to need some work, but it's a nice place.
Then after all the awesome things that happened this weekend, back comes the "something... big" with an in your face reminder straight from the source. Thanks. That's what I needed to end my weekend.
Oh well, it happens. It was still an awesome weekend.
Why? Well, there are many reasons. First, I recently went through something... big, that messed me up pretty bad emotionally. I'm still trying to find ways to get over it. What happened? Well that will be saved for another post, and even then I will likely not reveal all of the details. Right now I'm not really ready to talk about it though. There are 2 people other than me who know any details, 1 is kinda the cause of the whole thing, the other is one of my best friends over the past 15 years (give or take.)
Also, my meds are playing games with me. As you may know, I'm in the beginnings of switching medicine again. I'm still feeling the side effect of the keppra (lots of emotional side-effects) and I'm starting to get side effects from the Lamictal as well.
The Lamictal is causing me to be tired, which is expected, and it is also causing some dizziness. Usually for a couple hours after I take it, and right now it's only when I'm standing. If I'm sitting or laying down I'm fine. The label says "may cause dizziness", but so does every other medicine I've ever been on for my seizures, and none of them have ever actually caused me to be dizzy.
I talked to someone I know who is on it, and she said that she experienced the same thing while coming onto it, but that it goes away after your body gets used to it. But I can expect to feel this at each increase in dosage, which means I'll be dealing with it on and off for the next 6+ weeks, depending on how quickly my body adjusts.
So onto the good stuff.
My dad came in from Florida on Wednesday and is staying with my brother in Buffalo, then going back tomorrow (Monday.)
Saturday I woke up early to get some work done on my car. My tires are no longer slowly losing air, and it rides a lot smoother thanks to a fuel injection system cleaning. Then I drove into Buffalo to my brother's house, where I met up with him and my dad. From there, we were deciding what to do. We had a list of things that we wanted to do throughout the weekend, and were planning an itinerary of sorts.
We started by going to Niagara falls. We've all been there many times before (we = me, my brother, and my dad) but none of us had ever done the cave of the winds, and we wanted to do some other things too.. So we got a "Discovery Pass" which included the cave of the winds, the maid of the mist, a movie about the history of the falls, the aquarium, and a discovery center. We didn't get to the aquarium and the discovery center, but the pass STILL saved us money on the things that we did do.
The cave of the winds is the most amazing thing that I have ever experienced. You walk on a wooden deck of sorts and actually approach the falls on foot. I took some pictures, but as I got closer I had to put my phone away in fear of water damage. On the "hurricane deck", the water is so powerful that it actually hurt when it hit me. for about half of the walk I had to squint my eyes to see anything, because there was so much water coming at me and going into my eyes. So pro tip to anyone who wants to do that... buy some swimming goggles. Those small ones that cover only your eyes, not a mask, and a water proof camera.
The maid of the mist we had all done before, but it's still cool. You go onto a boat and approach the horseshoe falls. You get pretty close, and are basically surrounded by water on 3 sides of the boat at the furthest point. There is an upper deck and a lower deck on the boat. If you go on the upper deck you will get soaked. On the lower deck, in the front you still get soaked because it juts out a little farther than the upper deck. But the rest of the lower deck you can stay fairly dry.
For both of these (maid of the mist and cave of the winds) you receive a poncho to wear, which actually keeps you pretty dry underneath, as long as you actually wear it. Some people there took them off, or never put them on, and they got pretty wet.
After the falls we went back to my brother's place and built a fire in his fire pit. It was fairly comical because it took us forever to get it going, and my dad and my brother's roommate were basically commentary for the whole situation. I burned the tip of one of my fingers pretty badly... I grabbed a log to move it and touched the wrong spot. Luckily I put some aloe on it, and it healed up pretty nice. There's a small blister, but it doesn't even hurt anymore.
We went to make s'mores, but his girlfriend had filled the Graham cracker box with left over marshmallows and other goodies, so we had s'mores with only marshmallows and chocolate.
Today (Sunday) we went to the piece arrow museum. Pierce Arrow is a car company that no longer exists that was founded in Buffalo.They had some cool stuff in there too, I took some pics. Then we went to the Irish festival. We ate corned beef sandwiches and salt potatoes, and listened to some good music.
Finally, we went to see where my brother's new brewery is going to be. The company is in its infancy, so there isn't much in there, and the building is going to need some work, but it's a nice place.
Then after all the awesome things that happened this weekend, back comes the "something... big" with an in your face reminder straight from the source. Thanks. That's what I needed to end my weekend.
Oh well, it happens. It was still an awesome weekend.
Wednesday, August 21, 2013
New Meds... again
After about 3 weeks of playing phone tag, I finally talked to my neurologist today. I had told him that I had a seizure a few weeks ago, and today I told him that I had another on Friday and about the side effects that I've been experiencing. So after looking at all of that, we decided it's time to try another medicine.
Last year around this time, I switched off of my long-time medicine - Tegretol. After coming off of Tegretol for the first time in over 20 years, I noticed a HUGE difference in myself. A good difference. But now that I've been on the Keppra for a while, I'm noticing more differences... not so good differences. Anxiety, aggressiveness, depression, even borderline bi-polar at times.
This time last year, my neurologist gave me a choice of 2 medicines to try - Keppra or Lamictal. I chose Keppra for a two main reasons: The switch from Tegretol to Lamictal is extremely tough because of interactions between the two, and the side effect of the Keppra seemed to be less severe than those of Lamictal. However, after experiencing the side effects of Keppra, and talking to people about both, it seems that the side effects of Lamictal may be more severe, but they're also not as common. So I'm hoping for little or no side effects on the Lamictal, but who knows.
As I said last year, switching meds is ALWAYS scary. I haven't had a tonic clonic (Grand Mal) seizure in 8 years, but when I switch meds it could happen, and that's always scary.
So here's the process - 6 weeks to get onto the Lamictal. 2 weeks at 25mg, 2 weeks at 50mg, and 2 weeks at 100mg. Then blood work to see where my levels are, and a trip to the doc to talk about those levels and any possible side effects, etc. Assuming the levels are good, we then start the 8 week journey to come off of the Keppra.
ASIDE - I've decided that I'm taking myself back down to 2,000mg of Keppra right now. We increased to 2,500 a while back with no positive results, so I feel like I can safely go back to 2,000 with no increase in seizures and a possible decrease in side effects. I didn't talk to my doc about this, but I don't think I need to. It's a no brainer decision.
AND WE'RE BACK - The Keppra will come down in 500mg sections. 2 weeks at 1,500, 2 weeks at 1,000, 2 weeks at 500, then after 2 weeks of being off of it, it should be completely out of my system.
As you can see from the previous paragraph, the difference in dosage of the 2 meds is astounding. I will be maxing out at 100mg of Lamictal, and you can't even get a pill of Keppra for less than 250mg.
As I imagined when I heard this difference, the size of the pills is night and day too. The Keppra are like horse pills, which are sometimes hard to swallow. The Lamictal are smaller than a breath mint. If I drop a Lamictal it will be hard to find because it's so small. With the Keppra I could fit 4x 1,000mg pills in my pocket pill container - less than 2 days supply after my increase. With the Lamictal I could literally put my entire prescription in my pocket container.
So that's the news. It's going to be a long haul, but in about 4 months I'll be completely off of Keppra and on Lamictal.
Tuesday, August 20, 2013
Keppra Side Effects That I Experience
I just looked up a list of the side effects of Keppra - which I've done before but I can't remember them all:
Key:
Bold: Things that I have definitely seen a difference
Green: Things that I seem to have seen change, but are hard to tell
Underline: common symptoms during my partial seizures
regular: listed in possible side effects, but I don't seem to experience
More common:
Key:
Bold: Things that I have definitely seen a difference
Green: Things that I seem to have seen change, but are hard to tell
Underline: common symptoms during my partial seizures
regular: listed in possible side effects, but I don't seem to experience
More common:
- Aggressive or angry
- anxiety
- change in personality
- chills
- cough or hoarseness
- crying
- depersonalization
- diarrhea
- dry mouth
- euphoria
- fever
- general feeling of discomfort or illness
- headache
- hyperventilation
- irregular heartbeats
- irritability
- joint pain
- loss of appetite
- lower back or side pain
- mental depression
- muscle aches and pains
- nausea
- nervousness
- painful or difficult urination
- paranoia
- quick to react or overreact emotionally
- rapidly changing moods
- restlessness
- shaking
- shivering
- shortness of breath
- sleepiness or unusual drowsiness
- sore throat
- stuffy or runny nose
- sweating
- trouble with sleeping
- unusual tiredness or weakness
- vomiting
I think it's time to talk to the doc and see what other options are out there. He mentioned Lamictal when I switched to Keppra, and I heard a lot of people at camp saying good things about their experiences on it, so maybe I'll try that.
Post Camp Depression
I know that a lot of you who read this also come to Camp EAGR with me. For some reason, this year after camp I seem to be really depressed. It's weird, because in all the years of going to camp it's never been this bad. Is anyone else feeling like this? I've talked to at least one other person who is feeling the same way.
Usually when I come home from camp I miss people for a couple days, but it's manageable. This year it's like I don't want to go into work, I don't want to come home, I don't want to look on Facebook, I don't want to do anything... I just want to be at camp with all of my friends.
I think part of it is me:
Usually when I come home from camp I miss people for a couple days, but it's manageable. This year it's like I don't want to go into work, I don't want to come home, I don't want to look on Facebook, I don't want to do anything... I just want to be at camp with all of my friends.
I think part of it is me:
- I don't really like my current job, so I don't normally enjoy going into work, but right now it's worse than normal.
- I think some of it is the meds
- I have been noticing some mental differences for a while, and I've been kinda ignoring them thinking that it's because of the new job, or new apartment, or the many other changes that I've made recently in my life. But I'm starting to think it's the Keppra, and I think I'm going to talk to my doc about that. Maybe switch meds again. Idk.
- After hearing some other people talk at camp about being on Keppra and feeling angry, and feeling other weird things, I really think a lot of my imbalanced feelings are caused by the meds.
- I came home to an empty apartment after camp for the first time ever
- I'm used to talking about camp when I get home, and getting out all of my excitement... but I didn't do that this year. I think that might have something to do with it.
But I think some of it is just camp. There were a lot of awesome new counselors at camp, and I don't think I got to know them as well as I would like. I feel like I need more time with those people as much as I need more time with the "regulars".
Some of it is that I've gotten myself into such a routine at home that my life has become fairly boring outside of things like camp. Routines are great for forming habits - and I've formed a routine to start working out and eating healthier - but routines are also boring. It's like I do the same thing all the time, and I'm just going through the motions of life. Camp is different. At camp we have a schedule, but every day still holds new and exciting things.
I also feel like I was building a fairly nice relationship with someone before camp, then during and after camp things seem to have taken a turn. There are a few people who might know what I'm talking about here, but not many. However, I feel kind of hurt by the fact that I'm suddenly second best, behind someone who is usually the reason for nothing but complaining. But that whole situation could be another blog post entirely if I wanted.
NOTE: If you do know who this is regarding, please don't post names publicly. I didn't state names for a reason.
Anybody have any ideas of how to get out of this rut and start feeling like me again? I've already outlined a few possibilities: Change meds - but that's a long process, talk to someone about camp - but that's hard to do during the week with my work schedule, change my routine - but I don't think that will really help as I've kinda already done that.
First thing is: I want to see some of my camp friends more often. Carrie and I have already started talking about seeing people more often, and we need to get others in on it too. But I need something to get me back on track now, so that things like that can happen.
Sunday, August 18, 2013
Camp EAGR 2013
One more year at camp has come and gone. It was amazing as always.
It started, as always, with the rejoicing and reuniting of the returning counselors, welcoming some new counselors - who by the way were all AWESOME, unpacking everything into the health lodge, doing some team building with the counselors, training in the dining hall, and then a night on the town in "downtown" Warsaw. (Downtown is in quotes because downtown Warsaw NY is about a 1-block area.)
Sunday was the annual trip to the Silverlake Diner, who was expecting us thanks to a call from yours truly a week earlier, and a last minute trip to Walmart to pick up any supplies that were left at home, maybe decorations for cabins, and some minor "contraband". (Food and other supplies that the kids are not allowed to have, but that us counselors tend to bring with us,)
Then, time to welcome the kids. I had 5 kids in my cabin this year, aged 15-17, and 1 co-counselor who was actually a camper of mine only a few years ago. And of course, they gave me my usual cabin. (Which is also one of the nicest cabins, but is at the top of the hill - and coincidentally, the highest point in Wyoming county.)
Chippewho? CHIPPEWAAAAAA!
I knew most of my kids from previous years - 2 were in my cabin last year, as well as a few times before that, 1 I had many times previously but not last year, and 1 I had never had, but had been at camp before. The last one was new. At 16 years old, he was spending his first week at Camp EAGR. By Monday night, he was already talking about returning next year.
We also started a new camp within a camp this year. This was the first year that we had a "Young Adult Camp" which has been tentatively named camp COAST. The name is not yet official, but that is the name that was thought of this week. The name includes the last initial of the 5 young adults who attended the first ever camp this summer, and the acronym tentatively stands for Camp Of Adult Skills Training. Again, all parts of this are subject to change, but the camp itself was really cool. All of the young adults in this camp were my campers over the past 2 years, and some of my campers from this year will likely attend the young adult camp next year. (Which has already been funded for next year!)
These kids got to do the high ropes course (Camp EAGR only does low ropes,) they went white water rafting at Letchworth State Park, and they learned some life skills that can be used in many different areas of life. Since these guys were stationed in the cabin next to mine, I took some time one night to teach them some strategies for starting a good fire. From lighting some birch bark, to getting some small twigs to light, to controlling airflow, and how to build it up once you have a nice base fire and some hot coals.
As I said before leaving I have more stories than can be held by any blog, so I will touch on some highlights of the rest of the week.
Nature was AMAZING! They had a 17-year old YMCA staff person handling the nature activities, and he was ridiculous smart. I have been going to this camp for 20 years now, and he taught ME things that I didn't know. He showed us plants that we had never seen, showed us some edible ones and some to avoid at all costs. (For the record, if you see a berry in the woods that looks like an eye - white with a small black dot in the center - stay away. As little as 2-3 of these can kill you.) We even found a plant that is hollow like bamboo, and he showed us MANY uses for this one plant. (Which, according to an EAGR counselor, is an invasive species from Japan.)
On our second nature activity, he took us to the hollow tree, which many of us have done before, but while we were there he showed us how to make a fire and had the kids roast marshmallows. We couldn't go into the hollow tree this year because there is a hive of honey bees in the tree now, and since the bees are endangered they were not allowed to kill or relocate the bees. Toby, our nature guide, said that the bees will likely be there for a long time because they are in a part of the tree which has a lot of access in and out, but yet they will stay warm and safe from predators.
Our campers enjoyed arts and crafts a lot this year. We had many different things to do and, as always with the older groups, the guys made things for the girls, and vice-versa.
We did fishing for the first time that I recall. The person running the fishing activity had some live minnows to use as bait for bass, and the kids fished with worms and caught some smaller fish. When a bass was on the line, the Y-staffer allowed the kids to real it in. One of the bass we caught was 2-feet long!
I saw a few snakes this year. 2 under the deck at the health lodge when we got there on Saturday, and 2 while we were fishing. One was a garter snake, the other was a black water snake. Not sure what the 2 under the health lodge were, but we saw one of them sticking out his tongue. One of the nurses found a fully intact snake skin and put it in a plastic bag. That was pretty awesome to see.
The opening and closing camp fires were pretty awesome. Mostly because some of the Camp EAGR staff did songs and skits to add to what the Y-staff usually does.
Some of the not-so-good...
The food. It has been a while since I've complained about the food at camp. Our cook over the last 5 years or so was AMAZING. Yes, it was still camp food, so it was always nice to get home and have a real meal. However, I could consider that food.
Not this year. One day we got tomato sauce in a bowl, and some hamburger buns, and they called it "Sloppy Joe". No, Sloppy Joe has a small thing called meat in it. This sauce had little or no meat. The meat loaf was hardly recognizable as such, the baked oatmeal literally looked like it had come out of someone's back side, and they even found a way to ruin taco day by making us go to the salad bar to get the lettuce, cheese, and other fixings besides meat and beans. That made the tacos take about 20 minutes to make, because the salad line was so long. Plus, this year we did family style instead of buffet style, and since they didn't put the food on warmers after it was prepared, we often received cold food. Needless to say, I was extremely grateful to get some Moe's at the end of our counselor meeting on Saturday.
My only seizure this week was during the closing camp fire on Friday night. I was called up to participate in a skit, and started into a simple partial seizure about halfway through. Luckily I wasn't an active part in the skit, so it didn't effect much as far as that was concerned. However, I did sit down after the skit, and did not participate in the dancing and other shenanigans for the rest of the fire. Also, my leg was already sore from all of the walking throughout the week, so after the seizure my right leg was to the point where I could hardly walk on it. I took a ride up the hill to the cabin for the first time in many years, and I went to bed relatively early that night.
There are probably plenty more good things to say, and a few more not so good things, but I would need so much more time to write about all of it. As always, I am tired, and sore, and glad to be home. But at the same time, I wish I could go back tomorrow after catching up on some sleep and healing up a bit.
I have pictures if I can find my camera. I'm pretty sure it's in the pocket of whatever pants I was wearing Friday night. I'll post pics when/if I find it.
Some of the "unofficially official" pictures from camp this year: http://paulkent.zenfolio.com/p826049182
It started, as always, with the rejoicing and reuniting of the returning counselors, welcoming some new counselors - who by the way were all AWESOME, unpacking everything into the health lodge, doing some team building with the counselors, training in the dining hall, and then a night on the town in "downtown" Warsaw. (Downtown is in quotes because downtown Warsaw NY is about a 1-block area.)
Sunday was the annual trip to the Silverlake Diner, who was expecting us thanks to a call from yours truly a week earlier, and a last minute trip to Walmart to pick up any supplies that were left at home, maybe decorations for cabins, and some minor "contraband". (Food and other supplies that the kids are not allowed to have, but that us counselors tend to bring with us,)
Then, time to welcome the kids. I had 5 kids in my cabin this year, aged 15-17, and 1 co-counselor who was actually a camper of mine only a few years ago. And of course, they gave me my usual cabin. (Which is also one of the nicest cabins, but is at the top of the hill - and coincidentally, the highest point in Wyoming county.)
Chippewho? CHIPPEWAAAAAA!
I knew most of my kids from previous years - 2 were in my cabin last year, as well as a few times before that, 1 I had many times previously but not last year, and 1 I had never had, but had been at camp before. The last one was new. At 16 years old, he was spending his first week at Camp EAGR. By Monday night, he was already talking about returning next year.
We also started a new camp within a camp this year. This was the first year that we had a "Young Adult Camp" which has been tentatively named camp COAST. The name is not yet official, but that is the name that was thought of this week. The name includes the last initial of the 5 young adults who attended the first ever camp this summer, and the acronym tentatively stands for Camp Of Adult Skills Training. Again, all parts of this are subject to change, but the camp itself was really cool. All of the young adults in this camp were my campers over the past 2 years, and some of my campers from this year will likely attend the young adult camp next year. (Which has already been funded for next year!)
These kids got to do the high ropes course (Camp EAGR only does low ropes,) they went white water rafting at Letchworth State Park, and they learned some life skills that can be used in many different areas of life. Since these guys were stationed in the cabin next to mine, I took some time one night to teach them some strategies for starting a good fire. From lighting some birch bark, to getting some small twigs to light, to controlling airflow, and how to build it up once you have a nice base fire and some hot coals.
As I said before leaving I have more stories than can be held by any blog, so I will touch on some highlights of the rest of the week.
Nature was AMAZING! They had a 17-year old YMCA staff person handling the nature activities, and he was ridiculous smart. I have been going to this camp for 20 years now, and he taught ME things that I didn't know. He showed us plants that we had never seen, showed us some edible ones and some to avoid at all costs. (For the record, if you see a berry in the woods that looks like an eye - white with a small black dot in the center - stay away. As little as 2-3 of these can kill you.) We even found a plant that is hollow like bamboo, and he showed us MANY uses for this one plant. (Which, according to an EAGR counselor, is an invasive species from Japan.)
On our second nature activity, he took us to the hollow tree, which many of us have done before, but while we were there he showed us how to make a fire and had the kids roast marshmallows. We couldn't go into the hollow tree this year because there is a hive of honey bees in the tree now, and since the bees are endangered they were not allowed to kill or relocate the bees. Toby, our nature guide, said that the bees will likely be there for a long time because they are in a part of the tree which has a lot of access in and out, but yet they will stay warm and safe from predators.
Our campers enjoyed arts and crafts a lot this year. We had many different things to do and, as always with the older groups, the guys made things for the girls, and vice-versa.
We did fishing for the first time that I recall. The person running the fishing activity had some live minnows to use as bait for bass, and the kids fished with worms and caught some smaller fish. When a bass was on the line, the Y-staffer allowed the kids to real it in. One of the bass we caught was 2-feet long!
I saw a few snakes this year. 2 under the deck at the health lodge when we got there on Saturday, and 2 while we were fishing. One was a garter snake, the other was a black water snake. Not sure what the 2 under the health lodge were, but we saw one of them sticking out his tongue. One of the nurses found a fully intact snake skin and put it in a plastic bag. That was pretty awesome to see.
The opening and closing camp fires were pretty awesome. Mostly because some of the Camp EAGR staff did songs and skits to add to what the Y-staff usually does.
Some of the not-so-good...
The food. It has been a while since I've complained about the food at camp. Our cook over the last 5 years or so was AMAZING. Yes, it was still camp food, so it was always nice to get home and have a real meal. However, I could consider that food.
Not this year. One day we got tomato sauce in a bowl, and some hamburger buns, and they called it "Sloppy Joe". No, Sloppy Joe has a small thing called meat in it. This sauce had little or no meat. The meat loaf was hardly recognizable as such, the baked oatmeal literally looked like it had come out of someone's back side, and they even found a way to ruin taco day by making us go to the salad bar to get the lettuce, cheese, and other fixings besides meat and beans. That made the tacos take about 20 minutes to make, because the salad line was so long. Plus, this year we did family style instead of buffet style, and since they didn't put the food on warmers after it was prepared, we often received cold food. Needless to say, I was extremely grateful to get some Moe's at the end of our counselor meeting on Saturday.
My only seizure this week was during the closing camp fire on Friday night. I was called up to participate in a skit, and started into a simple partial seizure about halfway through. Luckily I wasn't an active part in the skit, so it didn't effect much as far as that was concerned. However, I did sit down after the skit, and did not participate in the dancing and other shenanigans for the rest of the fire. Also, my leg was already sore from all of the walking throughout the week, so after the seizure my right leg was to the point where I could hardly walk on it. I took a ride up the hill to the cabin for the first time in many years, and I went to bed relatively early that night.
There are probably plenty more good things to say, and a few more not so good things, but I would need so much more time to write about all of it. As always, I am tired, and sore, and glad to be home. But at the same time, I wish I could go back tomorrow after catching up on some sleep and healing up a bit.
I have pictures if I can find my camera. I'm pretty sure it's in the pocket of whatever pants I was wearing Friday night. I'll post pics when/if I find it.
Some of the "unofficially official" pictures from camp this year: http://paulkent.zenfolio.com/p826049182
Friday, August 9, 2013
20 years at Camp EAGR
Many of you who know me, know that next week marks one of the most important events in my life: Camp EAGR.
What is Camp EAGR? Well, EAGR stands for Epilepsy Association of Grater Rochester. (Which has since changed names at least once, but camp still keeps the EAGR name)
Camp EAGR is a summer camp for kids with epilepsy, which has been going 22 years as of this year. Why then is this post called "20 years at Camp EAGR" and not 22 years? Because I missed 2 years. I wasn't there the first year that they held camp, and I wasn't there in 2000, because I decided to go to football tryouts instead (which was a terrible decision, camp's more important than football.) So this will be my 20th year at Camp EAGR. 9 of those as a camper/CIT, 11 as a counselor.
Enough background though... If you want more information, it can be found here:
http://epiny.org/epilepsy-camp-eagr.php
Tomorrow marks the start of the 22nd year or Camp EAGR. Or, at least, for the counselors it starts tomorrow. The kids get there on Sunday, then well all leave on Saturday the 17th.
For those of you who know me, you know exactly how much camp means to me. It's a place where I can get away from all of the worries of life, where I can be with some of the people that I love most in life, and where I can truly be myself... if only for a week. And although I'm only there for a week every year, it is the one place that most feels like "home" to me.
So next week, I don't just get to volunteer for a week, I don't just get to see people who I only see once a year, I don't just get the rewarding feeling that I am making a difference in so many kids' lives - just as my counselors did for me, I'm also going home. For a week. Then I come back to this thing that most people call "real life".
Somebody recently asked me what I would do if I won the lottery. After thinking about it for a while... I think I would go work at camp all summer. Pay me minimum wage if you must pay me, I just want to be there all summer. However, I cannot afford to live on that kind of pay WITHOUT winning the lottery.
So that's it. My last post for a week. You will hear nothing more from this guy until August 17th. And at that point I will have more stories to tell than any blog could ever contain, I will have no energy to write any of it down (or even type,) and I will most likely be walking with a limp. (Oh, did I neglect to mention the fact that I find a way to hurt myself almost every summer as well? Oh well, that's part of the adventure of camp.)
Until then, I only hope that your week can be 10% as epic as mine will be.
What is Camp EAGR? Well, EAGR stands for Epilepsy Association of Grater Rochester. (Which has since changed names at least once, but camp still keeps the EAGR name)
Camp EAGR is a summer camp for kids with epilepsy, which has been going 22 years as of this year. Why then is this post called "20 years at Camp EAGR" and not 22 years? Because I missed 2 years. I wasn't there the first year that they held camp, and I wasn't there in 2000, because I decided to go to football tryouts instead (which was a terrible decision, camp's more important than football.) So this will be my 20th year at Camp EAGR. 9 of those as a camper/CIT, 11 as a counselor.
Enough background though... If you want more information, it can be found here:
http://epiny.org/epilepsy-camp-eagr.php
Tomorrow marks the start of the 22nd year or Camp EAGR. Or, at least, for the counselors it starts tomorrow. The kids get there on Sunday, then well all leave on Saturday the 17th.
For those of you who know me, you know exactly how much camp means to me. It's a place where I can get away from all of the worries of life, where I can be with some of the people that I love most in life, and where I can truly be myself... if only for a week. And although I'm only there for a week every year, it is the one place that most feels like "home" to me.
So next week, I don't just get to volunteer for a week, I don't just get to see people who I only see once a year, I don't just get the rewarding feeling that I am making a difference in so many kids' lives - just as my counselors did for me, I'm also going home. For a week. Then I come back to this thing that most people call "real life".
Somebody recently asked me what I would do if I won the lottery. After thinking about it for a while... I think I would go work at camp all summer. Pay me minimum wage if you must pay me, I just want to be there all summer. However, I cannot afford to live on that kind of pay WITHOUT winning the lottery.
So that's it. My last post for a week. You will hear nothing more from this guy until August 17th. And at that point I will have more stories to tell than any blog could ever contain, I will have no energy to write any of it down (or even type,) and I will most likely be walking with a limp. (Oh, did I neglect to mention the fact that I find a way to hurt myself almost every summer as well? Oh well, that's part of the adventure of camp.)
Until then, I only hope that your week can be 10% as epic as mine will be.
Tuesday, August 6, 2013
2 much news for one post!
I didn't want to make you wait long for part 2, so here it is. (this is the long part.)
Last night my mom was going through some things that she found in her basement, and today she gave me a call about some of her discovery.
She found a seizure log that she had kept of my seizures from birth to roughly 5 years old! Now, we both agreed that this log was probably not complete, but it's pretty awesome nonetheless.
It was a log that she kept in a small notebook, hand written, and apparently she even wrote on both sides of some pages. She said that on one page she wrote in pen, then on the back she wrote in pencil, and the pencil was hard to read because the ink had seeped through to the back of the paper. So instead of just scanning this notebook and sending it to me, she actually went through the trouble of typing it all out for me so that I could actually read it!
Some of these entries have dates, times, descriptions of the seizure, length of the seizure, whether or not they took me to the hospital, where the seizure happened, and in some cases, what I did after the seizure was over.
The first entry is actually from the day after I was born. "2 seizures with Apnea." Not sure what that apnea part means yet. I texted mom to ask and she never answered.
UPDATE: Mom just responded, apnea means that I stopped breathing.
The last entry that she found is actually the first seizure that I can remember. I was playing Sonic the Hedgehog on my Sega Genesis, with my sister watching. I was in a tall chair/stool, and fell backwards into a bean bag when the seizure happened. (I don't remember the falling, but I've been told that's what happened.) I could actually still tell you roughly the part of the game that I last remember seeing before the seizure. (I didn't make it very far before the seizure.) It was also the first time my sister saw me have a seizure.
I think it was that seizure that I remember waking up after it. She had moved me to the couch, with my head on her lap. I woke up, looked up into her eyes, and she said "you just had a seizure, go to sleep." And I did.
(Although that may be a memory of a different one, because the log says that I turned blue after the one on the stool, which means I probably woke up in an ambulance or in the hospital after that one. It may have actually been the one the day before the stool incident... because there is one the day before in the log as well.)
My favorite entry so far was this: a seizure that occurred on my brother's birthday, when I was less than 1 year old - "3.5 minute seizure. Jerking, then stiff, bent arms, eyes rolled back. After it stopped he went to play immediately, then seized again for 10 seconds."
Seriously? I had a seizure for over 3 minutes, then went to play? Wow, I was one tough kid apparently. My only question is - did I still go play AGAIN after the 10 second seizure that followed?
Some of the even more interesting information is the starting and stopping of medication. It's all here. "Off Dilatin, Started Dilatin, Completely off Dilatin, Penobarbitol - 5cc's 2x/day"
Why is that more interesting? Because of the LACK of information after every time it says that I was put on medicine.
Feb 24 - Started Dilatin
March 29 - Completely off Dilatin
April 21 and 22, seizures both days - 22nd, back on Dilatin
Jan 13 - seizure
That's almost 9 months without a seizure being logged! The question is, were there seizures in there that weren't logged, or did I really go 9 months without a seizure because of the meds?
There is a LOT of information here, and I have just begun to process it. But from the looks of it, even as an infant my seizures were fairly controlled while I was on the meds. I called my mom to confirm this discovery and she agreed. She said that I was pretty controlled as long as I was on meds. According to her, the main times that I wasn't controlled was after growing, and before upping my dosage to accommodate for the new weight.
So much information, so little time. I'm going to do some processing of this information and I will report back with any new findings. (Plus, mom says there may be more to this log that she has yet to find.)
BTW - I have to say thinks to +Vicki Smith (AKA mom) for having the foresight to do this all those years ago, and for finding the information and allowing me to gain some more insight into my past.
Too much news for 1 post!
A lot has happened in the past couple days, and I'm going to start with some fitness news.
Yesterday, I went to the gym for the last time before camp. It wasn't planned to be my last gym trip before camp, but since the gym is closed for the rest of the week, it ended up that way.
First and foremost, I weighed in yesterday at 219.7 lbs... the first time I've weighed in under 220! I know, it's not much below 220, but it's below, and I'll take it! It's not quite my (admittedly ambitious) goal of 215 before camp, but I have lost 15 pounds in 3 months, and I think that's pretty good.
Also, yesterday at the gym I biked 3.43 miles in 10 minutes, which averages to over 20.5 mph! That's fast, especially for an average speed over a 10 minute span! How fast, you ask? Well, I biked a lot in high school. And when I say a lot, I mean A LOT! One day, there was one of those speed things that the cops put out, that show the speed limit and your current speed. Well, I broke the speed limit on this particular road by going 27 in a 25 zone on my bike. Like the weight thing, I didn't break the speed limit by much, but I did it. And I was on a bike, not in a car. That was probably the fastest I had ever gone on a bike.
Camp starts Saturday which means I'm probably going to lose some more weight next week. With all the hiking up and down hills, and running after energetic kids, I'm sure I'll lose some more weight there.
Speaking of camp, I've been 19 days seizure free now. For those of you who really know me, I know that doesn't sound like a lot compared to my previous records, but it is pretty good for these partials. The one I expected to come last week never happened. We'll see what happens at camp.
Want to know some even more exciting news on the epilepsy front??? Come back for part 2 of this post.
Saturday, July 27, 2013
Rambling about my epilepsy
As I was driving tonight I was doing some thinking. Be prepared here, this is going to get kind of random.
The first thought was "I haven't taken my pill yet tonight." Then I realized, I've never been without medication for more than roughly 1 month EVER in my life. EVER. I was born with epilepsy, and was quickly put on an anticonvulsant drug, and have been on such a drug ever since. I've been taken off of my medicine before, but only to have a seizure within about a month, which is why "about a month" is my record of being without medication.
On that train of though, I got to thinking... I really don't know who I am without medicine. And I wish I could find out. I really do. Unfortunately, me without medicine is probably me having a ton of seizures, and might lead to me not really being me anymore because the multiple seizures could lead to brain damage or other problems. (Yes, it has been proven that seizures can cause brain damage. And yes, I probably have some minor degree of brain damage due to my life long fight with epilepsy. And yes, I think my memory is affected by my seizures too.)
As I was thinking about that, I started thinking about possible triggers for these recent seizures. As far as I can tell, some possible triggers include:
- Allergies
- Stress
- Workouts
- Exhaustion
I put exhaustion as a subcategory of workouts because usually my exhaustion is due to extensive physical exertion. Whether it be an actual workout at the gym, or working around the house (or construction/deconstruction in my mom's and/or brother's houses) or moving (myself or others) or whatever else I may be doing that is physically demanding.
And finally, I started thinking... I'm going to have a seizure within a couple of days. How do I know? I can't really explain that, but I'd be surprised if I went from right now to the end of the work day on Monday without another seizure. If I were a betting man, I'd put my money on the 4:00 hour Monday afternoon. Most of my recent seizure seem to be between 4-5pm while I'm at work, so that's what I'm kind of expecting right now. Plus, I worked out Tuesday and Thursday this week, putting Monday at the 6-day mark after the initial workout, putting it about in line with my previous theory.
Also, I would put money on this year being the first time I have a seizure at camp. (Or at least my first recognized seizure at camp.) Why? Because all the signs point to seizure that week. All of the possible triggers I listed above will be present: August is usually the worst part of the year for my allergies, there is more stress at camp than can even be expressed through some ridiculous analogy, and we are climbing hills all week and are always exhausted by about Tuesday. All of that on top of the 1-2 seizures I've had per month for the past few months... it all adds up to seizure during camp.
In all reality, having a seizure at camp is not a big deal. Seizures happen at camp - it's a camp for kids with epilepsy. However, one of these seizures may be a big deal for ME at camp. If I have one of these hour+ long partial seizures at camp, I'll be down for the count for roughly a day. They take all of my energy out of me, and I already don't have any energy to spare at camp.
My biggest fear is that one of these partials will turn into a full out tonic-clonic. It hasn't happened yet, but if it's going to happen, camp will probably be that time. Why? Because of my already low energy level, the extreme physical requirement of camp, and the ridiculous stress level. Hopefully that doesn't happen, but it is a fear of mine.
So, I leave you with some countdowns:
44 hours until I expect my next seizure will be (Hopefully that countdown is wrong, and it doesn't happen)
330 hours until I arrive at camp
Saturday, July 20, 2013
Workouts and Seizures
A few days ago, I mentioned via social media that I had a theory involving a correlation between my workouts and my seizures.
Unfortunately, I don't have as much data as I thought. I have only been logging my seizures since about May, and I have logged 4 seizures in that time.
Here is the data that I do have:
(I have this table in Excel format now and will be potentially adding to it in the future if this pattern continues.)
So from this small amount of data, it seems as if my seizure are occurring 5-10 days after each workout.
As is often stated on the internet: "correlation does not imply causation". Basically this means that just because I seem to be having seizures a few days after each workout, does not mean that my workouts are causing the seizures. Especially with the limited amount of data that I have.
However, with some more data points I could prove a possible cause and then look into solutions.
My theory, as it stands now, is the following:
The medicine that I take is absorbed through the blood. My workouts recently have been mostly cardio which increases heart rate, therefore increasing blood flow, and potentially increasing the absorption rate of the medicine. This would lead to a spike in medicine levels immediately following the workout, but a potential drop in levels over the next few days due to the increased absorption of existing medication. The actual time/date of these lows would depend on the rate of absorption of the drug from ingesting the pill to when the drug actually enters the blood stream.
From what I've read, Keppra seems to have a very quick absorption rate - about an hour from taking the pill to the time when it enters the blood stream - which would lead to my theory being potentially flawed. But if the absorption rate is that quick, then why did I have to be at each dosage for 2 weeks before increasing to the next dose? The purpose of the "weaning" on and off of such drugs as I understand it is 2-fold:
Unfortunately, I don't have as much data as I thought. I have only been logging my seizures since about May, and I have logged 4 seizures in that time.
Here is the data that I do have:
| Workout Date | Seizure Date | days between workout and seizure |
| 5/7/2013 | 5/17/2013 | 10 |
| 6/5/2013 | 6/10/2013 | 5 |
| 6/13/2013 | 6/19/2013 | 6 |
| 7/10/2013 | 8 | |
| 7/12/2013 | 6 | |
| 7/16/2013 | 7/18/2013 | 2 |
So from this small amount of data, it seems as if my seizure are occurring 5-10 days after each workout.
As is often stated on the internet: "correlation does not imply causation". Basically this means that just because I seem to be having seizures a few days after each workout, does not mean that my workouts are causing the seizures. Especially with the limited amount of data that I have.
However, with some more data points I could prove a possible cause and then look into solutions.
My theory, as it stands now, is the following:
The medicine that I take is absorbed through the blood. My workouts recently have been mostly cardio which increases heart rate, therefore increasing blood flow, and potentially increasing the absorption rate of the medicine. This would lead to a spike in medicine levels immediately following the workout, but a potential drop in levels over the next few days due to the increased absorption of existing medication. The actual time/date of these lows would depend on the rate of absorption of the drug from ingesting the pill to when the drug actually enters the blood stream.
From what I've read, Keppra seems to have a very quick absorption rate - about an hour from taking the pill to the time when it enters the blood stream - which would lead to my theory being potentially flawed. But if the absorption rate is that quick, then why did I have to be at each dosage for 2 weeks before increasing to the next dose? The purpose of the "weaning" on and off of such drugs as I understand it is 2-fold:
- To make sure that the medicine levels have enough time to reach maximum for that dosage before increasing to the next dosage
- To get the body used to the new drug and/or new levels of drug
Again, I'm not a doctor so my understanding of these things may be slightly flawed. But I still say that if I need to be at each dosage level for 2 weeks before increasing again, it probably takes a week or more for the levels to even out. In which case, my theory could have some validity.
I called my doctor's office yesterday, and he was supposed to call me back but he never did. When I talk to him I plan on bringing this up and seeing if I have a legitimate concern, or if I'm just crazy.
Obviously I'm not done with this. I will continue to keep track of both my workouts and my seizures, and will observe any correlation between the two - even if the doctor does say that I'm just crazy.
ADDENDUM: Any doctors, nurses, pharmacists, etc. out there that happen to be reading this... feel free to leave your professional opinion on my theories.
ADDENDUM: Any doctors, nurses, pharmacists, etc. out there that happen to be reading this... feel free to leave your professional opinion on my theories.
Sunday, July 14, 2013
The past year
I was thinking the other day that I've been through a lot in the past year or so...
Let's start last July 3rd 2012: 1st recognized partial seizure
As a result of that one event: a trip to the hospital, 3 blood draws over a matter of roughly 2 months - one of which was done wrong and left a bruise for over 2 weeks, not driving for 6 months, starting a new medicine, more trips to the neurologist in 1 year than most people will make in a lifetime, an MRI - with no useful information, at least a half dozen more partial seizures over the year, an EEG - with no useful information despite having a simple partial seizure during the test, an increase of the medicine that I switched to, and a lot of days being exhausted from either having a seizure or changing/increasing medication.
Also, I learned that my seizures occur in the left side of my brain, because they affect the right side of my body. Unfortunately, this doesn't tell me enough to stop them for good, but it's information that I didn't have before.
Not resulting from the seizure: I was laid off from my job and started a new one about a month later
But on the other hand: I have created some semi-successful Android apps, helped my sister move, helped a friend move, moved myself into a new apartment, started living alone for the first time ever, started a new diet and lost some weight, got back into the gym, setup my weight bench in my new apartment so that it's easier to work out at home, bar tended a wedding for a friend of mine, helped my mom demolish her basement...
And probably more important events that I'm forgetting in each of these lists, but you get the point.
As some of you may know, I am always setting goals for myself. I started doing this mostly during my time at RIT, and I found that it helped me keep myself organized and it helped me stay on track. So having said that...
Goals for next year:
Let's start last July 3rd 2012: 1st recognized partial seizure
As a result of that one event: a trip to the hospital, 3 blood draws over a matter of roughly 2 months - one of which was done wrong and left a bruise for over 2 weeks, not driving for 6 months, starting a new medicine, more trips to the neurologist in 1 year than most people will make in a lifetime, an MRI - with no useful information, at least a half dozen more partial seizures over the year, an EEG - with no useful information despite having a simple partial seizure during the test, an increase of the medicine that I switched to, and a lot of days being exhausted from either having a seizure or changing/increasing medication.
Also, I learned that my seizures occur in the left side of my brain, because they affect the right side of my body. Unfortunately, this doesn't tell me enough to stop them for good, but it's information that I didn't have before.
Not resulting from the seizure: I was laid off from my job and started a new one about a month later
But on the other hand: I have created some semi-successful Android apps, helped my sister move, helped a friend move, moved myself into a new apartment, started living alone for the first time ever, started a new diet and lost some weight, got back into the gym, setup my weight bench in my new apartment so that it's easier to work out at home, bar tended a wedding for a friend of mine, helped my mom demolish her basement...
And probably more important events that I'm forgetting in each of these lists, but you get the point.
As some of you may know, I am always setting goals for myself. I started doing this mostly during my time at RIT, and I found that it helped me keep myself organized and it helped me stay on track. So having said that...
Goals for next year:
- Fitness
- Get down to 200-210lbs
- Lose enough to get rid of the "beer gut" entirely
- This number may be lower, depending on how I look/feel at my initial goal weight
- Start the "bulk-up" process of dieting and working out
- It's almost impossible to lose weight and bulk up at the same time. They require different diets, different workout routines... a whole different lifestyle. So once I'm done losing the weight, I'm going to work on strength and strength endurance. (yes, strength and strength endurance are 2 different things.)
- Re-join an all-star cheer team
- Tryouts are usually in April/May area, so I need to be ready by Spring time
- Job
- I have some goals here that I don't really want to make public (some of which extend past the next year)
- One long-term goal that I will announce is that I would like to further my Android development, and possibly form an official small business. Again, this is a long-term goal, and right now I have no target date set.
- Eventually, I may start developing for other platforms as well, or have someone else translate my apps to other platforms.
- Development
- Finish building "Google Games" features into Tic-Tac-Toe for Android
- Networked multi-player, achievements, etc.
- Finish Euchre for Android, and get "Google Games" features into that
- By "finish" I mean at least get a working game with some of the options found in the Windows version. Software is never finished.
- Get a solid foundation on the app that my brother wants to create
- Yes, another "secret". I do not want to give details about this app, but I/we will be working on something fairly big soon. It will probably be a while before it's available to the public.
- Continue development on Auto Respond, and try to increase sales of the pro version
- I've still got a list of features that I want to add
- I think I can increase sales with some advertising. Might have to bring in some digital designers to do some of my graphics.
- Life
- I was hoping to get a town house this year. After being laid-off that was put on hold, so that will be one of next year's goals.
- If some of my job goals can be reached I can start paying down my student loans a bit quicker, and that will help with everything
- Epilepsy
- Now that I'm back to what seems to be a controlled state, goal #1 is to stay seizure free as long as possible
- If that fails goal #2 will be to gather as much information as possible, as always
Wednesday, July 10, 2013
Stuff and things
Lots going on right now. Most importantly, I will be home in exactly 1 month.
Camp
For those of you who don't know me, I volunteer for 1 week every summer at a camp for kids with epilepsy. Even if you don't know me, but you read this blog, you probably know that I have epilepsy - and have since birth. I have been going to camp since I was 8, and have been a volunteer counselor since I turned 18. As of last year, I have officially been at camp more years as a counselor than as a camper. I missed 1 year as a camper (I think when I was 15... in 2000) to go to football camp, so in total I've been to camp 9 times as a camper and 10 times as a counselor.
This year will be the 22nd year that camp has happened, and my 20th year attending. That's a long time. In that time I have made many friends. I've made friends as a child at camp, and as an adult at camp. People from both of those categories still attend camp. People who I grew up with at camp are still counselors with me. One in particular who has been there since I was about 12 or 13, and has been a great friend of mine since then. (She knows who she is.)
For these reasons, and many more, camp is the one place that I truly feel at home. Unfortunately, that means I'm only truly home for 1 week every year. But that one week is glorious.
This year camp is August 11th to August 17th. The 10th to the 17th for counselors. We get there a day early for training, setup, etc.
If you would like more information about camp, it can be found here: http://www.epilepsyuny.org/campeagr.htm
Health/fitness
I haven't lost too much more weight. As of tonight I weighed in at 223, down from 225 a month ago. Not much progress, but I still feel great. My goal is to get down to 215 before camp, and if I get back into the gym regularly over the next month, I think I can do it. I haven't been going to the gym as much as I should be, partly because I've been focusing on my apps and other things. Life is a balance, and right now I have a lot to balance.
As I mentioned, I did get to the gym tonight though. I walked 3/5 of a mile, ran 1/4 of a mile, then walked another 1/4 of a mile. The run wasn't a jog like it has been, it was definitely a run, with probably half of it being almost full out sprint.
Then I went on to the "hand bike" as I call it. Not sure what the real name is, but it's like pedaling a bike with your hands. I went 8 minutes on level 3, as opposed to my normal 6 minutes on level 3. Plus I pushed myself to go faster than normal, so it was doubly extra.
Then I went 8 minutes on the bike... I usually do 10, but I was exhausted from the extra running and the extra on the hand bike. But I still did 2.2 miles, and the last time I did 10 minutes I went 2.5 miles, so the pace was roughly the same as normal. Then as a cool down, I walked another 1/4 mile.
Epilepsy
My last known seizure was during the EEG exactly 3 weeks ago today. That was also when I started the increased dosage of my medicine, so hopefully the increased meds are working.
I say "last known" because I don't always feel these partials that I'm having, plus I think it's possible that I had one in my sleep this weekend. I woke up from a nap (after helping my mom demolish her basement... don't ask) and my right calf was stuck in a clenched state. It actually hurt - badly. I massaged it for a while and it relaxed after a few seconds, but it actually still hurts occasionally - and that was Sunday. Again, I'm not sure if this was a "nocturnal" seizure, or if I just tweaked my muscle. For now, I'm assuming the latter.
So that's about it for now. Can't wait for camp!! :-)
Camp
For those of you who don't know me, I volunteer for 1 week every summer at a camp for kids with epilepsy. Even if you don't know me, but you read this blog, you probably know that I have epilepsy - and have since birth. I have been going to camp since I was 8, and have been a volunteer counselor since I turned 18. As of last year, I have officially been at camp more years as a counselor than as a camper. I missed 1 year as a camper (I think when I was 15... in 2000) to go to football camp, so in total I've been to camp 9 times as a camper and 10 times as a counselor.
This year will be the 22nd year that camp has happened, and my 20th year attending. That's a long time. In that time I have made many friends. I've made friends as a child at camp, and as an adult at camp. People from both of those categories still attend camp. People who I grew up with at camp are still counselors with me. One in particular who has been there since I was about 12 or 13, and has been a great friend of mine since then. (She knows who she is.)
For these reasons, and many more, camp is the one place that I truly feel at home. Unfortunately, that means I'm only truly home for 1 week every year. But that one week is glorious.
This year camp is August 11th to August 17th. The 10th to the 17th for counselors. We get there a day early for training, setup, etc.
If you would like more information about camp, it can be found here: http://www.epilepsyuny.org/campeagr.htm
Health/fitness
I haven't lost too much more weight. As of tonight I weighed in at 223, down from 225 a month ago. Not much progress, but I still feel great. My goal is to get down to 215 before camp, and if I get back into the gym regularly over the next month, I think I can do it. I haven't been going to the gym as much as I should be, partly because I've been focusing on my apps and other things. Life is a balance, and right now I have a lot to balance.
As I mentioned, I did get to the gym tonight though. I walked 3/5 of a mile, ran 1/4 of a mile, then walked another 1/4 of a mile. The run wasn't a jog like it has been, it was definitely a run, with probably half of it being almost full out sprint.
Then I went on to the "hand bike" as I call it. Not sure what the real name is, but it's like pedaling a bike with your hands. I went 8 minutes on level 3, as opposed to my normal 6 minutes on level 3. Plus I pushed myself to go faster than normal, so it was doubly extra.
Then I went 8 minutes on the bike... I usually do 10, but I was exhausted from the extra running and the extra on the hand bike. But I still did 2.2 miles, and the last time I did 10 minutes I went 2.5 miles, so the pace was roughly the same as normal. Then as a cool down, I walked another 1/4 mile.
Epilepsy
My last known seizure was during the EEG exactly 3 weeks ago today. That was also when I started the increased dosage of my medicine, so hopefully the increased meds are working.
I say "last known" because I don't always feel these partials that I'm having, plus I think it's possible that I had one in my sleep this weekend. I woke up from a nap (after helping my mom demolish her basement... don't ask) and my right calf was stuck in a clenched state. It actually hurt - badly. I massaged it for a while and it relaxed after a few seconds, but it actually still hurts occasionally - and that was Sunday. Again, I'm not sure if this was a "nocturnal" seizure, or if I just tweaked my muscle. For now, I'm assuming the latter.
So that's about it for now. Can't wait for camp!! :-)
Thursday, June 27, 2013
EEG Results
I promised a blog about the results of my EEG and here it is...
I didn't hear what I expected to hear this morning. I saw written on the single results page the same word that I've seen on every results page of every EEG I've ever had - "unremarkable".
What does that mean? It means that there was nothing of interest in the results of my EEG. The EEG during which I had a seizure occur, still showed "unremarkable" results. The single page document even noted my remark to the person who administered the test - that I had "symptoms" during the test after the hyperventilating portion.
I was not myself today after hearing this disappointing and extremely shocking news. I had no idea how to feel. I was disappointed, angry, upset, sad... think of every bad feeling you've ever felt: I felt that all at one time this morning. (And they came back occasionally throughout the day.) I actually came close to tears a couple times this morning, because I thought that I would finally have some new information and instead I walked away empty handed.
What did the doctor say? A bunch of mumbo jumbo about why it possibly didn't show up, which sounded to me like a kid making an excuse as to why he doesn't have his homework done. Then he said to continue on the increased medicine dosage and let him know if I have any more episodes. News flash - the stress that I put myself through this morning after hearing this news caused at least one more to happen today. (I think it was more like 3 or 4 throughout the day. Small, but there.)
Then he said that if they continue, we can do a 24-hour EEG, which can be administered at home and I can keep a journal of any "events" that occur throughout the day. They will use this journal to look at certain time stamps and see if there is any new data. So his plan is to have me sit around all day with a cap on my head to find another unremarkable test result. Sounds like a fun day to me.
As you can probably tell from the tone of this, I am still very upset about the lack of any new information and I really don't know what to think or feel. It seems like the more I think I know, the less I can confirm what I think I know. (Did you follow that? It makes sense, I swear.)
I really just want some answers. Why have I been having seizures for 28+ years? Where do they come from in my brain? How are they affecting me, other than the obvious? And most importantly right now - How do I trigger one, and what do I need to do to let you capture it? I will force myself into a seizure if I know how to do it, and I know that you are capturing data. I just want to know more about me, and my seizures, and how to stop them, and what the hell they are doing to me.
It's extremely frustrating. 28 years and I know little more now than my parents knew 28 years ago.
I didn't hear what I expected to hear this morning. I saw written on the single results page the same word that I've seen on every results page of every EEG I've ever had - "unremarkable".
What does that mean? It means that there was nothing of interest in the results of my EEG. The EEG during which I had a seizure occur, still showed "unremarkable" results. The single page document even noted my remark to the person who administered the test - that I had "symptoms" during the test after the hyperventilating portion.
I was not myself today after hearing this disappointing and extremely shocking news. I had no idea how to feel. I was disappointed, angry, upset, sad... think of every bad feeling you've ever felt: I felt that all at one time this morning. (And they came back occasionally throughout the day.) I actually came close to tears a couple times this morning, because I thought that I would finally have some new information and instead I walked away empty handed.
What did the doctor say? A bunch of mumbo jumbo about why it possibly didn't show up, which sounded to me like a kid making an excuse as to why he doesn't have his homework done. Then he said to continue on the increased medicine dosage and let him know if I have any more episodes. News flash - the stress that I put myself through this morning after hearing this news caused at least one more to happen today. (I think it was more like 3 or 4 throughout the day. Small, but there.)
Then he said that if they continue, we can do a 24-hour EEG, which can be administered at home and I can keep a journal of any "events" that occur throughout the day. They will use this journal to look at certain time stamps and see if there is any new data. So his plan is to have me sit around all day with a cap on my head to find another unremarkable test result. Sounds like a fun day to me.
As you can probably tell from the tone of this, I am still very upset about the lack of any new information and I really don't know what to think or feel. It seems like the more I think I know, the less I can confirm what I think I know. (Did you follow that? It makes sense, I swear.)
I really just want some answers. Why have I been having seizures for 28+ years? Where do they come from in my brain? How are they affecting me, other than the obvious? And most importantly right now - How do I trigger one, and what do I need to do to let you capture it? I will force myself into a seizure if I know how to do it, and I know that you are capturing data. I just want to know more about me, and my seizures, and how to stop them, and what the hell they are doing to me.
It's extremely frustrating. 28 years and I know little more now than my parents knew 28 years ago.
Sunday, June 23, 2013
EEG results... coming Thurday
I know from the Facebook "likes", comments, and other reactions to my previous post about my EEG that some of you are probably just as excited to find out the results of my EEG as I am. (OK, I don't think anyone is quite as excited as me, with the possible exception of my mom, but some of you are definitely intrigued.)
The bad news, however, is that I couldn't get an appointment with my doctor until Thursday at 8:30am. I do plan on spending more time with him than he probably realizes, and asking a ton of questions, and telling him exactly what I experienced during the test, and I am determined to come out with some good information.
Bottom line, be sure to come back here Thursday night to find out what we learned from the test. I get out of work at 7:30pm and will likely post about the result as soon as I get home.
Friday, June 21, 2013
Overcoming Medicine Side Effects
Some of you may know that the biggest side effect that I see from my medicine is the one that says "may cause drowsiness" on the bottle. For me, this is worst during the first week or so after increasing dosage. (AKA - right now.) In fact, in my case it's sometimes bad enough that the warning should say "may knock you on your ass!"
So what can I do to stop this? Well, I'm consuming a drug which makes me tired... so I'm going to consume food that keeps me awake. But what keeps you awake?
The answer is: anything that gives you the most energy. Complex carbs and protein give you the most long term energy, and simple carbs give you short term energy.
Complex carbs are in things like bread, rice, and other grains. Fiber also gives you some long term energy. Most people know that protein is very high in meat and nuts (like peanuts or cashews) and sugar is an example of a simple carb that... well there's plenty of things that have sugar.
So my plan for today... start off with a bowl of Mini Wheats. They're high in fiber, and the wheat mean's they probably have some other complex carbs in there. Along with that is obviously some milk. Can't have cereal without milk. (At least I can't, especially not mini wheats.) That milk has some protein which will add to my energy reserves. Add in some toast for some added complex carbs, (I usually do 2 pieces, but will likely do 4 today) and the usual fruit that I have with every meal now, and we should have a fairly energetic breakfast.
What about lunch/dinner? Well I've got something planned that I haven't done in a long time... PB&J sandwiches. (At least, I haven't packed them for lunch in a long time) The peanut butter is high in protein, the bread has the complex carbs, and the jelly has a decent amount of sugar, giving me an instantaneous boost as well as a sustained boost for the rest of the day. One sandwich isn't going to be enough for me, so I'm planning on making several. That way, I can grab one throughout the day if I get low on energy.
Also, for you non-PB&J experts, the correct way to build a PB&J for on-the-go eating is to have PB on each slice of bread and the jelly in the center, so that the jelly doesn't leak through the bread.
And I've always got those fruit cups in my drawers at work too, so they are a good source of fiber and a small boost.
So that's my plan for today. Let's hope it works.
So what can I do to stop this? Well, I'm consuming a drug which makes me tired... so I'm going to consume food that keeps me awake. But what keeps you awake?
The answer is: anything that gives you the most energy. Complex carbs and protein give you the most long term energy, and simple carbs give you short term energy.
Complex carbs are in things like bread, rice, and other grains. Fiber also gives you some long term energy. Most people know that protein is very high in meat and nuts (like peanuts or cashews) and sugar is an example of a simple carb that... well there's plenty of things that have sugar.
So my plan for today... start off with a bowl of Mini Wheats. They're high in fiber, and the wheat mean's they probably have some other complex carbs in there. Along with that is obviously some milk. Can't have cereal without milk. (At least I can't, especially not mini wheats.) That milk has some protein which will add to my energy reserves. Add in some toast for some added complex carbs, (I usually do 2 pieces, but will likely do 4 today) and the usual fruit that I have with every meal now, and we should have a fairly energetic breakfast.
What about lunch/dinner? Well I've got something planned that I haven't done in a long time... PB&J sandwiches. (At least, I haven't packed them for lunch in a long time) The peanut butter is high in protein, the bread has the complex carbs, and the jelly has a decent amount of sugar, giving me an instantaneous boost as well as a sustained boost for the rest of the day. One sandwich isn't going to be enough for me, so I'm planning on making several. That way, I can grab one throughout the day if I get low on energy.
Also, for you non-PB&J experts, the correct way to build a PB&J for on-the-go eating is to have PB on each slice of bread and the jelly in the center, so that the jelly doesn't leak through the bread.
And I've always got those fruit cups in my drawers at work too, so they are a good source of fiber and a small boost.
So that's my plan for today. Let's hope it works.
Wednesday, June 19, 2013
Best. EEG. Ever!
As many of you know, I had an EEG this morning I said before that I've had dozens of these in the past, and they've never seen anything... well I think my luck may have changed today.
For anyone who's ever had an EEG before, most should know that you are usually asked to have very little sleep before the test. This is so that you can possibly sleep during the test, but also because lack of sleep is a seizure trigger for many people. I got roughly 4 hours of sleep last night.
My mom took me to the appointment this morning, and on my way in I had a feeling that one was coming. I don't know what it was... it wasn't a full aura, but I just had a feeling.
I got into the test, and they had me just lay there for a bit with the wires connected. Then we started the breathing part. They have you breathe quickly and heavily through your mouth for 3 minutes. Then we stopped again for a while.
That's when it happened.
About 10 seconds after I stopped the heavy breathing, I felt an actual aura. I started getting "that feeling" in my head, which is literally indescribable but only ever means 1 thing: I was starting into a seizure. My heart started beating quickly, I could feel it beating in my chest, my breathing sped up again, and finally I felt some twitching in my right knee.
This went on for a while. I tried to get to sleep, but every time I got close to sleeping it felt like the seizure peaked up again. I could feel my right leg tensing up, and still the occasional twitch in the right knee. My right arm and leg both felt weak, even though I was laying down I could feel the weakness. My head twitched a bit, I think because I was trying to contain the other twitching as much as possible. This continued for about 30 minutes or so, when she finally started the blinking lights. I didn't tell her that I had started into a seizure, I kinda kept that to myself.
She put the light in front of me, told me to keep my eyes closed, and started the blinking lights part of the test. At this point, I was still in the seizure... and let me tell you: the blinking lights test while in a seizure was weird! It was like I could see shapes in the light as it blinked, and the slow blinking really threw my head for a loop. I don't even know how to describe it, but it definitely made me tweak out a bit.
Amazingly, the seizure stopped either during or shortly after the blinking lights test. Then about 2-3 minutes after the blinking lights, she stopped the test. I told her "I think we got one!" So she talked to me a bit about when it happened, and how long it lasted, and she told me that a doctor would look at it today and send it to my doctor tomorrow.
Now, those of you who don't have epilepsy, or don't know a lot about epilepsy, are probably thinking "How is this a good thing!?" My answer: It's not a good thing, it's a GREAT thing! The point of an EEG is to capture abnormal brain activity. I have had epilepsy since birth over 28 years ago, and have NEVER caught any abnormal activity during an EEG. I'm 90% sure that we got some this time! I just hope that the data is useful to my doctor...
My doctor told me that an appointment wasn't necessary after the EEG, but I think this time it is. I want to see the EEG, I want to talk to him about what he saw, I want to see if he can identify when the seizure started and stopped, and if he can't I want to tell him where to look.
This is probably the only time you will ever see me be glad that I had a seizure, but I am genuinely excited to see these results!
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