Rather than posting this on Facebook (where I know not everyone wants to know!) I'll post here. That way I know anyone who is deliberately looking at my page is actually interested in my random thoughts, rather than my thoughts posting on someone's news feed.
First, I was thinking about how weird Facebook really is, though it is something with which we are all accustomed. I started thinking about it because I was thinking how I have had my "relationship status" blank for... well, awhile. I remember back a few years ago when if I was in a relationship and I didn't have a status there, it would bother me. Now I don't really care, even though I've been with my current boyfriend for over a year, and even that is hard to define because there was no "asking out", it just sort of happened. Everyone who is close to me knows, and that really is what counts.
That got me thinking about other Facebook/social networking things. For one, how strange it would be to grown up as a child with Facebook being so dominant. Yes, it has taken a lot of my time, and I'm still in the age group that uses Facebook regularly at the age of 26, and I just finished my undergraduate degree a little over a year ago, so I guess that also plays into my Facebook usage, as college students were the original intended audience. But, regardless of that, I didn't have Facebook when I was in high school. I didn't have a cell phone until I was eighteen. I was reading a piece about how high school students now have grown up with their "profiles" presenting to the world, and every little mistake/flaw/anything is broadcast to their peers. I can't help but think how awful that would be at that age. It's bad enough that if something is wrong with you everyone can SEE it, but now there's evidence posted to the internet that you can't really take away. When I was in high school the internet was starting to get popular, but we still had dial-up, and AOL and Yahoo were the places to be. I had a Yahoo profile and a little webpage on Angelfire with some recordings of me singing/playing my flute, along with a link to some of my poetry. Oh, I also had a blog (opendiary.com!) where I wrote more about everything personal and intimate than anyone should really know. I've learned to tame that down a bit as people I actually know read my blogs nowadays :)
Anyways, to get back to my original point, I am not a Facebook-hater. I like Facebook. I like being able to keep in touch and share pictures with the people that matter. The ones I'm not as close to can of course choose to not look at my page and unsubscribe to my updates, so it's a win-win for everyone. It probably keeps me in touch with some people that aren't as important to me, and I will say that I probably wouldn't call quite a few of my Facebook friends with big news, but the ones who really are important to me would still hear from me if they didn't have a Facebook account (though everyone I'm close to has one, so that makes life easier!) I also don't mind if some of my friends post constant updates... I know some people complain and complain about how people post everything on their page. It's their page. Get over it. Anyway!
Next on the plate is these crazy medicines I'm on right now! (If you don't really care, you can stop reading now, haha). I still sometimes feel as if I'd be better off without them... I feel as if sometimes the side effects are worse than the condition. Granted, if I wasn't taking them, there's a good chance the seizures would be getting worse, as they were beginning to do before I was on medication. Actually they still aren't completely under control, but I can't help but wonder if they would be worse without the medicine... Would I be having more actual convulsions??? I've only had that happen a couple of times, but the partial seizures were getting a lot worse, and since my seizures "generalize" (meaning they spread to other parts of the brain), it's very possible I could be having worse seizures, so maybe the medications are better. I'm on a new medication now, Lamictal. This is in addition to the Keppra. I'm finally up to the dosage the neurologist wanted me to stop at, though I'm not sure if he's going to increase it at my next appointment. So far the side effects have been better than the Keppra side effects, but I still feel weird.
I have been having crazy dreams lately, which is actually listed as a side effect of the medication. They aren't as bad as they were, but a lot of them were rather depressing/violent. Not really the way I want to spend my sleeping hours.... I've also had a terrible time waking up every morning. Most nights I've been sleeping early (before ten), and yesterday I slept twelve hours. This morning I woke up around nine and had to push myself to get out of bed. I wanted to run this morning (I'm drinking coffee/water and trying to feel more normal right now, actually), so I got myself up. I feel hungover. I've been dizzy every single morning/half the day. Like, when I laid down on the ground to do a stretch the other day, the ceiling was spinning. I'm hoping my body adjusts to this dosage soon, but I'm afraid I'll be put on an even higher dose at my next appointment, so then my body will have to adjust to THAT.
So this is why I say the side effects seem worse than the actual condition... I'll describe the symptoms I USUALLY have. I get mostly partial seizures, which means I don't drop to the floor and have convulsions most of the time. They take place in one part of the brain, which usually causes some weird sensations. Mine are in the left temporal lobe, so they affect my memory/speech quite a bit. When I'm having a partial seizure I may have different symptoms. Usually I'll have a sense of deja vu, and then my stomach feels like it is rising (like maybe if you're nervous). Sometimes I'll feel like I'm remembering a dream, or I'm not HERE, and I'm watching myself in another spot, and it feels real. Sometimes it's hard to distinguish whether something really happened and I'm remembering it, or I'm having a seizure. Usually I'll get nauseous when this happens, which tells me it's a seizure. Usually these only last a really short time, like 1-2 minutes, and then I won't even be able to remember exactly how I felt, and it seems like the seizure never happened. I have started writing these experiences down while they're happening, which is how I'm able to recall them so well. Sometimes they will be longer, in which case my speech will be kinda messed up, like I'll have issues finishing sentences/finding the right words (my mom can attest to this as I've been on the phone with her when it's happened). During these longer ones I'll get dizzy/light headed. Sometimes I'll smell something "weird" that isn't actually there. I guess that's the "generalization," as these are the feelings I had before my bigger seizures (when I had convulsions and lost consciousness). Most of the time it stops at the 1-2 minute mark, sometimes it spread, but it has only spread all the way a few times.
So, in reality, it's not that bad, except now I freak out when I feel these sensations because I know it's possible I could have a Tonic-Clonic seizure (tonic means you stiffen up, the clonic phase is the convulsion phase - these used to be known as grand mal seizures), and I DON'T want to have those. I was able to ignore the partial seizures for a long time. Well, maybe not IGNORE them, but I thought they were never going to lead to another Tonic-Clonic seizure again (the first time this happened was a couple of years ago). Hence this is why I feel that sometimes the side effects of the medications are worse than the actual condition. Of course, this may not be entirely true. The longer untreated epilepsy continues, the worse it gets. Your brain gets used to misfiring. Kind of like if several people walk across a specific spot in grass all the time, the grass gets worn away and it turns into a kind of path that gets easier and easier to cross. It's the same thing with the neurons in the brain. The more often they misfire, the easier it is for them to continue misfire because the "pathways" are more open. And where my seizures take place, that affects things like memory and speech. My memory has turned to crap. I also have a hard time focusing/listening. These are relatively new issues for me. If someone gives me directions, I'll probably forget them as soon as I actually try to go that way. And somehow I managed to make it through West Point, despite the fact that my memory was getting worse! Part of the memory stuff is medication side effects and part of that is the fact that this has gone on for awhile. At LEAST two years, though who knows if I was dealing with it before. Like I said earlier, I'll usually forget how I felt shortly after, and it's only been since I've started paying attention that I could remember.
Anyway, that was a long explanation, I know. For most of my readers, it probably isn't all that interesting. I actually find it really interesting, but then again, that's because I'm dealing with it. Oh, and I was a psychology major, so I find the brain really interesting, and always have :) Honestly, I would love to study neuropsychology. When they sent me to the neuropsychologist for my memory issues (they also suspected mild traumatic brain injury - TBI - since I hit my head pretty hard during my last convulsive seizure) I was asking all sorts of questions. I told him that I actually wanted to pursue that later in life, so he was educating me. It was pretty cool :) I guess I'm lucky that I still have some of my intelligence. He told me IQ doesn't change, but processing speed can change and slow down. I guess that's why I learn better with reading than listening. I also like to write things down as I'm reading.
Blah, I'm rambling. I'm still a little dizzy, but I'm feeling semi-normal now, so I guess I'll go try to do that run that I was talking about before it gets too hot :)
First, I was thinking about how weird Facebook really is, though it is something with which we are all accustomed. I started thinking about it because I was thinking how I have had my "relationship status" blank for... well, awhile. I remember back a few years ago when if I was in a relationship and I didn't have a status there, it would bother me. Now I don't really care, even though I've been with my current boyfriend for over a year, and even that is hard to define because there was no "asking out", it just sort of happened. Everyone who is close to me knows, and that really is what counts.
That got me thinking about other Facebook/social networking things. For one, how strange it would be to grown up as a child with Facebook being so dominant. Yes, it has taken a lot of my time, and I'm still in the age group that uses Facebook regularly at the age of 26, and I just finished my undergraduate degree a little over a year ago, so I guess that also plays into my Facebook usage, as college students were the original intended audience. But, regardless of that, I didn't have Facebook when I was in high school. I didn't have a cell phone until I was eighteen. I was reading a piece about how high school students now have grown up with their "profiles" presenting to the world, and every little mistake/flaw/anything is broadcast to their peers. I can't help but think how awful that would be at that age. It's bad enough that if something is wrong with you everyone can SEE it, but now there's evidence posted to the internet that you can't really take away. When I was in high school the internet was starting to get popular, but we still had dial-up, and AOL and Yahoo were the places to be. I had a Yahoo profile and a little webpage on Angelfire with some recordings of me singing/playing my flute, along with a link to some of my poetry. Oh, I also had a blog (opendiary.com!) where I wrote more about everything personal and intimate than anyone should really know. I've learned to tame that down a bit as people I actually know read my blogs nowadays :)
Anyways, to get back to my original point, I am not a Facebook-hater. I like Facebook. I like being able to keep in touch and share pictures with the people that matter. The ones I'm not as close to can of course choose to not look at my page and unsubscribe to my updates, so it's a win-win for everyone. It probably keeps me in touch with some people that aren't as important to me, and I will say that I probably wouldn't call quite a few of my Facebook friends with big news, but the ones who really are important to me would still hear from me if they didn't have a Facebook account (though everyone I'm close to has one, so that makes life easier!) I also don't mind if some of my friends post constant updates... I know some people complain and complain about how people post everything on their page. It's their page. Get over it. Anyway!
Next on the plate is these crazy medicines I'm on right now! (If you don't really care, you can stop reading now, haha). I still sometimes feel as if I'd be better off without them... I feel as if sometimes the side effects are worse than the condition. Granted, if I wasn't taking them, there's a good chance the seizures would be getting worse, as they were beginning to do before I was on medication. Actually they still aren't completely under control, but I can't help but wonder if they would be worse without the medicine... Would I be having more actual convulsions??? I've only had that happen a couple of times, but the partial seizures were getting a lot worse, and since my seizures "generalize" (meaning they spread to other parts of the brain), it's very possible I could be having worse seizures, so maybe the medications are better. I'm on a new medication now, Lamictal. This is in addition to the Keppra. I'm finally up to the dosage the neurologist wanted me to stop at, though I'm not sure if he's going to increase it at my next appointment. So far the side effects have been better than the Keppra side effects, but I still feel weird.
I have been having crazy dreams lately, which is actually listed as a side effect of the medication. They aren't as bad as they were, but a lot of them were rather depressing/violent. Not really the way I want to spend my sleeping hours.... I've also had a terrible time waking up every morning. Most nights I've been sleeping early (before ten), and yesterday I slept twelve hours. This morning I woke up around nine and had to push myself to get out of bed. I wanted to run this morning (I'm drinking coffee/water and trying to feel more normal right now, actually), so I got myself up. I feel hungover. I've been dizzy every single morning/half the day. Like, when I laid down on the ground to do a stretch the other day, the ceiling was spinning. I'm hoping my body adjusts to this dosage soon, but I'm afraid I'll be put on an even higher dose at my next appointment, so then my body will have to adjust to THAT.
So this is why I say the side effects seem worse than the actual condition... I'll describe the symptoms I USUALLY have. I get mostly partial seizures, which means I don't drop to the floor and have convulsions most of the time. They take place in one part of the brain, which usually causes some weird sensations. Mine are in the left temporal lobe, so they affect my memory/speech quite a bit. When I'm having a partial seizure I may have different symptoms. Usually I'll have a sense of deja vu, and then my stomach feels like it is rising (like maybe if you're nervous). Sometimes I'll feel like I'm remembering a dream, or I'm not HERE, and I'm watching myself in another spot, and it feels real. Sometimes it's hard to distinguish whether something really happened and I'm remembering it, or I'm having a seizure. Usually I'll get nauseous when this happens, which tells me it's a seizure. Usually these only last a really short time, like 1-2 minutes, and then I won't even be able to remember exactly how I felt, and it seems like the seizure never happened. I have started writing these experiences down while they're happening, which is how I'm able to recall them so well. Sometimes they will be longer, in which case my speech will be kinda messed up, like I'll have issues finishing sentences/finding the right words (my mom can attest to this as I've been on the phone with her when it's happened). During these longer ones I'll get dizzy/light headed. Sometimes I'll smell something "weird" that isn't actually there. I guess that's the "generalization," as these are the feelings I had before my bigger seizures (when I had convulsions and lost consciousness). Most of the time it stops at the 1-2 minute mark, sometimes it spread, but it has only spread all the way a few times.
So, in reality, it's not that bad, except now I freak out when I feel these sensations because I know it's possible I could have a Tonic-Clonic seizure (tonic means you stiffen up, the clonic phase is the convulsion phase - these used to be known as grand mal seizures), and I DON'T want to have those. I was able to ignore the partial seizures for a long time. Well, maybe not IGNORE them, but I thought they were never going to lead to another Tonic-Clonic seizure again (the first time this happened was a couple of years ago). Hence this is why I feel that sometimes the side effects of the medications are worse than the actual condition. Of course, this may not be entirely true. The longer untreated epilepsy continues, the worse it gets. Your brain gets used to misfiring. Kind of like if several people walk across a specific spot in grass all the time, the grass gets worn away and it turns into a kind of path that gets easier and easier to cross. It's the same thing with the neurons in the brain. The more often they misfire, the easier it is for them to continue misfire because the "pathways" are more open. And where my seizures take place, that affects things like memory and speech. My memory has turned to crap. I also have a hard time focusing/listening. These are relatively new issues for me. If someone gives me directions, I'll probably forget them as soon as I actually try to go that way. And somehow I managed to make it through West Point, despite the fact that my memory was getting worse! Part of the memory stuff is medication side effects and part of that is the fact that this has gone on for awhile. At LEAST two years, though who knows if I was dealing with it before. Like I said earlier, I'll usually forget how I felt shortly after, and it's only been since I've started paying attention that I could remember.
Anyway, that was a long explanation, I know. For most of my readers, it probably isn't all that interesting. I actually find it really interesting, but then again, that's because I'm dealing with it. Oh, and I was a psychology major, so I find the brain really interesting, and always have :) Honestly, I would love to study neuropsychology. When they sent me to the neuropsychologist for my memory issues (they also suspected mild traumatic brain injury - TBI - since I hit my head pretty hard during my last convulsive seizure) I was asking all sorts of questions. I told him that I actually wanted to pursue that later in life, so he was educating me. It was pretty cool :) I guess I'm lucky that I still have some of my intelligence. He told me IQ doesn't change, but processing speed can change and slow down. I guess that's why I learn better with reading than listening. I also like to write things down as I'm reading.
Blah, I'm rambling. I'm still a little dizzy, but I'm feeling semi-normal now, so I guess I'll go try to do that run that I was talking about before it gets too hot :)
That's actually really interesting to read you describe your partial seizures, and some of the things you mentioned are what we've imagined my littlest brother goes through when he has his auras. He'll often say he's "spinning around" or he'll get quiet and say "i'm feeling something." It's difficult to drag more details out of him, but sometimes he seems to hear/see things as well that aren't there--although I prefer to think the rest of us just don't see it--so yeah. Very cool that you can actually articulate it. I'm sorry, however, that you have to go through it. That's no bueno at all. And as always, if you need anything, you know where to find me :)
ReplyDeleteI could imagine it would be hard for your brother to articulate - it's hard for ME to explain, and I don't even have any type of impediments to explaining stuff. The whole seeing/hearing things that aren't there sounds like my "dreams" that I remember. They are like elaborate scenes sometimes. But then they go away. It's weird. But it does feel kinda cool, lol.
ReplyDeleteIf the partial seizures didn't destroy my memory and possibly lead to worse seizures, I wouldn't care if they stayed around. So it's not so bad. The worst part of all of this isn't the seizures themselves (since I rarely lose consciousness), it's all the restrictions and medications that go with them.