As I continue one of my longest stretches to date without a seizure, I am presented with an article from The Epilepsy Project discussing side effects of first generation and second generation drugs:
http://www.epilepsy.com/epilepsy/newsletter/jan11_onmymind
I am shocked by how many of these side effects I have experienced during my time on AEDs.
I am also curious which medication corresponds to what brand name. Might be a project for later, but it would be nice of the article had mentioned that, especially with the second generation AEDs. I recall some of them, and know, for example, that I am on Oxcarbyzapine (sp?), but I only know that because I have it filled generically (its brand name is Trileptal).
Why do medications have to be so damn confusing. As if my brain weren't addled enough already! (just kidding Mary, if you ready this!) :-)
Sunday, February 13, 2011
Thursday, October 28, 2010
Missed Meds - The Ongoing Dilemma
As I arrived at work today, I thought to myself "Oh crap - did I take my meds this morning?" This is not particularly new, but it also doesn't happen too often. I am generally in a very good routine about my meds. They are kept in the same location, I have a weekly pill box which I fill up every Sunday, and I order three months worth of pills through Medco. It's a good setup.
But on those mornings when I find myself questioning whether I took those meds, I find myself going over all of the different options...
- can I take an hour+ out of my workday to go all the way back home and check? It's one thing if I'm walking towards the subway, but already at work?
- If I keep a "spare dose" on me for emergency situations, can I ever be 100% sure that I did, in fact, miss a dose? Double dosing is not something I want to do...
- do I simply miss a dose and hope for the best?
I find myself almost invariably coming back to this third option, but I also think of all the people out there who, for whatever their illness, have even more challenging pill regimens than my own. I take meds in the morning, and meds at night, and I am not bound by specific times, just looking to generally try and take them regularly and about 12 hours apart.
I can't imagine having pill regimens that required me to take pills three, four, five times a day... different pills at different intervals... even having to wake up in the middle of the night to take a dose.
I suppose all I can do is continue to make every effort to be as diligent as possible in my schedule, and hope that if and when I do miss a dose, by brain doesn't make me pay.
But on those mornings when I find myself questioning whether I took those meds, I find myself going over all of the different options...
- can I take an hour+ out of my workday to go all the way back home and check? It's one thing if I'm walking towards the subway, but already at work?
- If I keep a "spare dose" on me for emergency situations, can I ever be 100% sure that I did, in fact, miss a dose? Double dosing is not something I want to do...
- do I simply miss a dose and hope for the best?
I find myself almost invariably coming back to this third option, but I also think of all the people out there who, for whatever their illness, have even more challenging pill regimens than my own. I take meds in the morning, and meds at night, and I am not bound by specific times, just looking to generally try and take them regularly and about 12 hours apart.
I can't imagine having pill regimens that required me to take pills three, four, five times a day... different pills at different intervals... even having to wake up in the middle of the night to take a dose.
I suppose all I can do is continue to make every effort to be as diligent as possible in my schedule, and hope that if and when I do miss a dose, by brain doesn't make me pay.
Tuesday, August 31, 2010
Three's a crowd
As I have mentioned in prior posts, my doctor has mentioned to me his concerns about alcohol:
- the likelihood it is that it plays a significant factor in the occurrence of seizures I may have.
- the interaction it has with my (former and) existing medications.
- the reality of how much I can/do/should drink.
Figuratively, I have my father's and grandfather's liver. I can pound them back. Beer after beer, shot after shot, wine, mixed drinks, gin, vodka, rum, tequila... you name it. My exploits are legen (wait for it) dary. A dozen+ Guinness in one night. Half a bottle+ of gin - straight. Countless nights of hours upon hours of drinking, mixing all sorts of libations together.
I am no longer saying any of this with a college mentality of "look at me." I look at this now with a more mature outlook on life and say "why?" These feats are nothing to boast of, be proud of, and certainly not something to aspire to. Moreover, they are definitely not feats to be replicated.
I know I may sound like a broken record sometimes these days when I do go out and drink and wake up the next day with a hangover, generally caused by a combination of not enough water and not enough sleep (note to self - this was one of the reasons you stopped playing pool on Monday nights - avoid weeknight drinking!!!). But I feel as though when I find out (didn't I know this and "conveniently" ignore it?) from Mary's studious research that Primidone (my current medication) enhances the effects of alcohol, that maybe I owe it to myself, Mary, and our life together to do what is best for me physically.
Does this mean I never drink again? No. Even my doctor doesn't feel that is realistic. I should be able to enjoy a glass of wine or two with dinner. The occasional scotch. A beer or two while at the ballpark. But what it does mean is that going out for drinks with the guys can no longer mean a long evening, at least one in which I am drinking in perpetuity. I need to resign myself to the fact that from here on out, I need to be much more responsible than I have been with respect to alcohol.
The best way to do this is going to be to not drink more than a finite number for a while. Arbitrary amounts like a few, a couple, or some will not cut it any more. Perhaps I will look at it from the perspective of the old childhood ditty - "two's enough, three's a crowd, four's too many, five's not allowed!"
I'll keep it at no more than two drinks for a while and see how I feel. Maybe there will be a special occasion where I will treat myself to three, but in general, I think not.
- the likelihood it is that it plays a significant factor in the occurrence of seizures I may have.
- the interaction it has with my (former and) existing medications.
- the reality of how much I can/do/should drink.
Figuratively, I have my father's and grandfather's liver. I can pound them back. Beer after beer, shot after shot, wine, mixed drinks, gin, vodka, rum, tequila... you name it. My exploits are legen (wait for it) dary. A dozen+ Guinness in one night. Half a bottle+ of gin - straight. Countless nights of hours upon hours of drinking, mixing all sorts of libations together.
I am no longer saying any of this with a college mentality of "look at me." I look at this now with a more mature outlook on life and say "why?" These feats are nothing to boast of, be proud of, and certainly not something to aspire to. Moreover, they are definitely not feats to be replicated.
I know I may sound like a broken record sometimes these days when I do go out and drink and wake up the next day with a hangover, generally caused by a combination of not enough water and not enough sleep (note to self - this was one of the reasons you stopped playing pool on Monday nights - avoid weeknight drinking!!!). But I feel as though when I find out (didn't I know this and "conveniently" ignore it?) from Mary's studious research that Primidone (my current medication) enhances the effects of alcohol, that maybe I owe it to myself, Mary, and our life together to do what is best for me physically.
Does this mean I never drink again? No. Even my doctor doesn't feel that is realistic. I should be able to enjoy a glass of wine or two with dinner. The occasional scotch. A beer or two while at the ballpark. But what it does mean is that going out for drinks with the guys can no longer mean a long evening, at least one in which I am drinking in perpetuity. I need to resign myself to the fact that from here on out, I need to be much more responsible than I have been with respect to alcohol.
The best way to do this is going to be to not drink more than a finite number for a while. Arbitrary amounts like a few, a couple, or some will not cut it any more. Perhaps I will look at it from the perspective of the old childhood ditty - "two's enough, three's a crowd, four's too many, five's not allowed!"
I'll keep it at no more than two drinks for a while and see how I feel. Maybe there will be a special occasion where I will treat myself to three, but in general, I think not.
Monday, August 30, 2010
The hard choices faced by epileptics...
Today I was reading a blog I follow called Brain Thunders, by Alysse Mengason, wherein she took a particularly hard-line stance against epileptics who drive:
http://www.brainthunders.com/new-posts/driving-giving-epilepsy-a-bad-name/
Within her blog, she mentions one key example of a driver with epilepsy who slammed into his victim at 70mph at a traffic stop. He has a history of seizures and had anti-convulsants in his blood, but there is no way to know for sure if he had a seizure behind the wheel.
This is, naturally, a serious thought/worry/concern of mine. Despite the fact that my seizures are virtually all nocturnal (they almost invariably happen while I am asleep), and I have had only two grand-mal seizures in my life while I was awake (one in third grade, one about 5 years ago), I do still have the occasional concern as to whether or not I should drive.
Granted, I don't own a car, I live in a city with a fantastic public transportation system (NYC), and my need or occasions to drive are few and far between.
But what happens when I eventually move to the burbs, am raising a family, and may have cause to drive more frequently and need a car? My fiancee is a HORRID driver. HORRID. (ok, I'm kidding - just want to know if she's reading today and what she'll say about that!)
As I said, my last seizure that occurred while I was awake happened several years ago, and it happened under conditions which doctors say can lead to a seizure (I was out running, and thus dehydrated and exhausted, and was in general stressed out...). Since then, I do drive occasionally. Hardly more than a few times a year, but I am comfortable behind the wheel and won't drive if I don't feel I am well.
So I guess where I am going with is that I, for the most part, don't believe I am a danger behind the wheel. That I don't feel I should force myself off the road simply because I have epilepsy. My medication is good (though I do still have nocturnal seizures every few months), and my driving skills certainly eclipse those of my fiancee! (gonna get in trouble if she read that!) :-)
I have plenty of worries when it comes to my epilepsy. Severe jerking that would hurt Mary. Falling out of bed. SUDEP. And yes, those stories of New Yorkers who have fallen on the tracks after suffering a seizure scare the bejeezus out of me. But driving? Not really. Honestly, is that wrong?
http://www.brainthunders.com/new-posts/driving-giving-epilepsy-a-bad-name/
Within her blog, she mentions one key example of a driver with epilepsy who slammed into his victim at 70mph at a traffic stop. He has a history of seizures and had anti-convulsants in his blood, but there is no way to know for sure if he had a seizure behind the wheel.
This is, naturally, a serious thought/worry/concern of mine. Despite the fact that my seizures are virtually all nocturnal (they almost invariably happen while I am asleep), and I have had only two grand-mal seizures in my life while I was awake (one in third grade, one about 5 years ago), I do still have the occasional concern as to whether or not I should drive.
Granted, I don't own a car, I live in a city with a fantastic public transportation system (NYC), and my need or occasions to drive are few and far between.
But what happens when I eventually move to the burbs, am raising a family, and may have cause to drive more frequently and need a car? My fiancee is a HORRID driver. HORRID. (ok, I'm kidding - just want to know if she's reading today and what she'll say about that!)
As I said, my last seizure that occurred while I was awake happened several years ago, and it happened under conditions which doctors say can lead to a seizure (I was out running, and thus dehydrated and exhausted, and was in general stressed out...). Since then, I do drive occasionally. Hardly more than a few times a year, but I am comfortable behind the wheel and won't drive if I don't feel I am well.
So I guess where I am going with is that I, for the most part, don't believe I am a danger behind the wheel. That I don't feel I should force myself off the road simply because I have epilepsy. My medication is good (though I do still have nocturnal seizures every few months), and my driving skills certainly eclipse those of my fiancee! (gonna get in trouble if she read that!) :-)
I have plenty of worries when it comes to my epilepsy. Severe jerking that would hurt Mary. Falling out of bed. SUDEP. And yes, those stories of New Yorkers who have fallen on the tracks after suffering a seizure scare the bejeezus out of me. But driving? Not really. Honestly, is that wrong?
Thursday, August 26, 2010
Where is the Epileptic Celebrity?
When you look at the plethora of pop-culture icons and stars, there seems to be a celebrity for most every disease or illness out there. Patrick Swayze in his very public battle with pancreatic cancer. Lance Armstrong with testicular cancer. Michael J. Fox (and Muhammad Ali) and Parkinsons. Magic Johnson and AIDS. Pamela Anderson and Hepatitis.
But who is the celebrity advocate for Epilepsy? I happened to google celebrities and their illnesses, and came across this interesting blog:
http://celebritydisease.blogspot.com/
Yet no mention of epilepsy.
Perhaps the closest I have noticed has been the Axelrods, Susan and David, David being President Obama's Senior Political Advisor. The Axelrods founded CURE; Citizens United for Research in Epilepsy, as a result of their daughter being diagnosed with epilepsy as an infant.
But even with the Axelrods, they are spokespeople, mainly. When will someone have the courage to stand up and bring more awareness to the general public about epilepsy. The lead singer of the Stone Temple Pilots, Scott Weiland, apparently has a history of them (this coming out after he had a seizure on an airplane about a year ago). Jeremy Shockey, TE for the New Orleans Saint (and formerly of the NY Giants) reportedly had a seizure this past May. John Travolta's son allegedly had a seizure that led to his demise, though whether or not that was related to Kawasaki Syndrome or Autism, no one really knows. (Thanks L. Ron Hubbard)
Suffice it to say, that no one has come forward on a larger scale to say "I have epilepsy; I have seizures; I have been dealing with this all my life." Really, is it possible that out of the millions of people who are coping with this condition, that none of them are famous actors, athletes, musicians, politicians, or other celebrities who feel that they should step up and raise awareness?
Regardless of whether or not such a person thinks they would be received, I can guarantee that there are millions who would be behind them 150%. I would be one of them.
But who is the celebrity advocate for Epilepsy? I happened to google celebrities and their illnesses, and came across this interesting blog:
http://celebritydisease.blogspot.com/
Yet no mention of epilepsy.
Perhaps the closest I have noticed has been the Axelrods, Susan and David, David being President Obama's Senior Political Advisor. The Axelrods founded CURE; Citizens United for Research in Epilepsy, as a result of their daughter being diagnosed with epilepsy as an infant.
But even with the Axelrods, they are spokespeople, mainly. When will someone have the courage to stand up and bring more awareness to the general public about epilepsy. The lead singer of the Stone Temple Pilots, Scott Weiland, apparently has a history of them (this coming out after he had a seizure on an airplane about a year ago). Jeremy Shockey, TE for the New Orleans Saint (and formerly of the NY Giants) reportedly had a seizure this past May. John Travolta's son allegedly had a seizure that led to his demise, though whether or not that was related to Kawasaki Syndrome or Autism, no one really knows. (Thanks L. Ron Hubbard)
Suffice it to say, that no one has come forward on a larger scale to say "I have epilepsy; I have seizures; I have been dealing with this all my life." Really, is it possible that out of the millions of people who are coping with this condition, that none of them are famous actors, athletes, musicians, politicians, or other celebrities who feel that they should step up and raise awareness?
Regardless of whether or not such a person thinks they would be received, I can guarantee that there are millions who would be behind them 150%. I would be one of them.
Wednesday, August 25, 2010
One month (31 days)
That's how long until my wedding. I must admit, that for a several years, I really felt as though marriage was not something that was going to happen in my future. The epilepsy was a significant part of that.
Would I ever get my seizures fully under control?
If so, would someone want to be with me when I could fall back into the deep end of the epileptic swimming pool at a moment's notice?
If not, wouldn't being with an epileptic scare women away?
Would I need to look for dating prospects at epilepsy support groups? Find someone who was going through what I was and could/would understand and deal with it?
As silly as that may sound, it was my thought pattern for quite a while. It took the support of family and friends to come to grips with the fact that everyone has their issues; everyone has their hang-ups.
And so I put myself out there. I went looking for dates wherever I could find them. Friends of friends. The bar. And finally online. Everyone said I should give online dating a try. It was what everyone was doing these days. So I tried eHarmony, 8 Minute Dating, Plenty of Fish... eHarmony was the best, but that wasn't saying much. It really flopped, despite my trying for well over a year and a half. So I gave up on online dating, until somehow I would up hearing about match.com and gave it a whirl. Within a month, I was kickin butt!
One particular week, I had two first dates and one second date! The 1st first date was on a Tuesday, and we went to grab a bite and see a movie. We both agreed that there was simply no chemistry. Oh well! no harm, no foul! Then I had a first date on Friday, and a second date on Saturday. The girl I was going on the second date with seemed pretty cool, and I was looking forward to seeing a movie and grabbing some food with her afterwards. The girl I had a first date with on Friday... was Mary.
Now you can call me cheesy, trite, or even cliche, but all I know is that I was TOTALLY smitten with Mary from day one. To the extent that the next day, when I had that second date with another woman, well... let's just say I turned into a total cad... I met her at the movie theatre, and we went in to watch a movie. I was a little reserved, and after the movie when she asked if I wanted to go grab a bite, I pulled the old "well you know, I'm not really feeling good... I think I'm gonna head home... but I'll call you later!" And I never did.
It's one of those things of which I am NOT proud, but ALL I could think about that entire time at the movie was Mary. I had NO interest in this woman. It was about Mary. Maybe it was that she laughed at my jokes. Maybe it was that she told jokes as dirty as mine. Maybe it was our mutual love of thai (and other) food. Whatever it was, I knew that I was going to focus all of my attention on Mary. I stopped responding to other people online who found me, and never did searches of my own.
I cannot even begin to describe how much I love this woman, and how thrilled I am that in 31 days she will walk down the aisle to me, exchange vows, let me put a ring on her finger, kiss her, and have announced to the world that she is my wife, for now and forever. I had figured out during my tenure of online dating that there were women out there for whom the fact that I had epilepsy was quite simply not an issue. Mary is one such. She takes amazing care of me after I have a seizure. Makes sure I have water, my medicine, food, whatever I need. And invariably when she comes home from work, I will be gifted with a Nestle's Chocolate Milk. That is love. :-)
So what is the point I am trying to make? It goes back to my silliness of thinking that the person with whom I would fall in love with and who would fall in love with me would, for even a second, think that epilepsy defines me. It doesn't. Mary knows this. She loves me for who I am, as I do her. She loves me for everything that is a part of me, and I am greater than the sum of my parts. And Mary is greater than that. And I love her for it. And I can't wait until 31 days from now when I will get to tell the whole world (or at least those family and friends who will be there with us)!
Greg
Would I ever get my seizures fully under control?
If so, would someone want to be with me when I could fall back into the deep end of the epileptic swimming pool at a moment's notice?
If not, wouldn't being with an epileptic scare women away?
Would I need to look for dating prospects at epilepsy support groups? Find someone who was going through what I was and could/would understand and deal with it?
As silly as that may sound, it was my thought pattern for quite a while. It took the support of family and friends to come to grips with the fact that everyone has their issues; everyone has their hang-ups.
And so I put myself out there. I went looking for dates wherever I could find them. Friends of friends. The bar. And finally online. Everyone said I should give online dating a try. It was what everyone was doing these days. So I tried eHarmony, 8 Minute Dating, Plenty of Fish... eHarmony was the best, but that wasn't saying much. It really flopped, despite my trying for well over a year and a half. So I gave up on online dating, until somehow I would up hearing about match.com and gave it a whirl. Within a month, I was kickin butt!
One particular week, I had two first dates and one second date! The 1st first date was on a Tuesday, and we went to grab a bite and see a movie. We both agreed that there was simply no chemistry. Oh well! no harm, no foul! Then I had a first date on Friday, and a second date on Saturday. The girl I was going on the second date with seemed pretty cool, and I was looking forward to seeing a movie and grabbing some food with her afterwards. The girl I had a first date with on Friday... was Mary.
Now you can call me cheesy, trite, or even cliche, but all I know is that I was TOTALLY smitten with Mary from day one. To the extent that the next day, when I had that second date with another woman, well... let's just say I turned into a total cad... I met her at the movie theatre, and we went in to watch a movie. I was a little reserved, and after the movie when she asked if I wanted to go grab a bite, I pulled the old "well you know, I'm not really feeling good... I think I'm gonna head home... but I'll call you later!" And I never did.
It's one of those things of which I am NOT proud, but ALL I could think about that entire time at the movie was Mary. I had NO interest in this woman. It was about Mary. Maybe it was that she laughed at my jokes. Maybe it was that she told jokes as dirty as mine. Maybe it was our mutual love of thai (and other) food. Whatever it was, I knew that I was going to focus all of my attention on Mary. I stopped responding to other people online who found me, and never did searches of my own.
I cannot even begin to describe how much I love this woman, and how thrilled I am that in 31 days she will walk down the aisle to me, exchange vows, let me put a ring on her finger, kiss her, and have announced to the world that she is my wife, for now and forever. I had figured out during my tenure of online dating that there were women out there for whom the fact that I had epilepsy was quite simply not an issue. Mary is one such. She takes amazing care of me after I have a seizure. Makes sure I have water, my medicine, food, whatever I need. And invariably when she comes home from work, I will be gifted with a Nestle's Chocolate Milk. That is love. :-)
So what is the point I am trying to make? It goes back to my silliness of thinking that the person with whom I would fall in love with and who would fall in love with me would, for even a second, think that epilepsy defines me. It doesn't. Mary knows this. She loves me for who I am, as I do her. She loves me for everything that is a part of me, and I am greater than the sum of my parts. And Mary is greater than that. And I love her for it. And I can't wait until 31 days from now when I will get to tell the whole world (or at least those family and friends who will be there with us)!
Greg
Tuesday, August 24, 2010
Coming Out
I've never stopped to consider how difficult it must be for people with epilepsy to come out and discuss what is happening to them. While easier now than it was 10, 15, or even 25 years ago, it is still viewed by many as exceptionally rare or out of the norm. The statistics paint a frighteningly different reality.
According to the Epilepsy Foundation, there are nearly 3,000,000 people affected by some form of epilepsy. That's about 1 out of every 100. There are 200,000 new cases of epilepsy reported each year.
http://www.epilepsyfoundation.org/about/statistics.cfm
When I think about all the people who have passed in and out of my life every day... People with whom I went to school. I had 400 people in my HS, and nearly 2,000 in my college. I don't know of a single other who had epilepsy when I was growing up. But they're there. People whom I know socially from the bars and groups of which I am a member. People from the jobs I have held. Friends of friends to whom I am introduced at parties.
In the last few years, the number of people I have met who have epilepsy, know someone who has epilepsy, have a family member with epilepsy, etc., is astounding.
It's not that there are that many more people being afflicted with epilepsy (or maybe there are and I am not as up on epilepsy statistics as I could/should be), it is simply that people (like me, even) realize as we get older that there is no reason to hide this.
I am not going around with a big sign or badge saying "Hey World, look at me! I have epilepsy!" Far from it. (I do wear a medic-alert bracelet, though, and sometimes people ask about it.) But I am not afraid to talk about it. All my friends know, but it's not a focus of our daily lives. My best friends know about my battles and will ask about how my medications are working for me, and if I have had any episodes. They care and are concerned. This is why they are my friends and one of the many reasons I love them as much as I do.
I have been able to connect with old friends whose children have been afflicted, work friends whose family members are afflicted, and have met more people who have spoken about their being afflicted. Did this occur merely because I am open about my own epilepsy. Not at all, though I am sure it helped in certain cases.
The moral of this story is that talking helps. It can be cathartic, and the love and support you will invariably get from family and friends (the right ones, at least) is worth its weight in gold. I know it has been for me.
So Mom, Dad, Laura, Mary, aunts and uncles, and other friends too numerous to list; thank you for everything. You have made my journey through dealing with epilepsy that much easier to deal with.
Greg
According to the Epilepsy Foundation, there are nearly 3,000,000 people affected by some form of epilepsy. That's about 1 out of every 100. There are 200,000 new cases of epilepsy reported each year.
http://www.epilepsyfoundation.org/about/statistics.cfm
When I think about all the people who have passed in and out of my life every day... People with whom I went to school. I had 400 people in my HS, and nearly 2,000 in my college. I don't know of a single other who had epilepsy when I was growing up. But they're there. People whom I know socially from the bars and groups of which I am a member. People from the jobs I have held. Friends of friends to whom I am introduced at parties.
In the last few years, the number of people I have met who have epilepsy, know someone who has epilepsy, have a family member with epilepsy, etc., is astounding.
It's not that there are that many more people being afflicted with epilepsy (or maybe there are and I am not as up on epilepsy statistics as I could/should be), it is simply that people (like me, even) realize as we get older that there is no reason to hide this.
I am not going around with a big sign or badge saying "Hey World, look at me! I have epilepsy!" Far from it. (I do wear a medic-alert bracelet, though, and sometimes people ask about it.) But I am not afraid to talk about it. All my friends know, but it's not a focus of our daily lives. My best friends know about my battles and will ask about how my medications are working for me, and if I have had any episodes. They care and are concerned. This is why they are my friends and one of the many reasons I love them as much as I do.
I have been able to connect with old friends whose children have been afflicted, work friends whose family members are afflicted, and have met more people who have spoken about their being afflicted. Did this occur merely because I am open about my own epilepsy. Not at all, though I am sure it helped in certain cases.
The moral of this story is that talking helps. It can be cathartic, and the love and support you will invariably get from family and friends (the right ones, at least) is worth its weight in gold. I know it has been for me.
So Mom, Dad, Laura, Mary, aunts and uncles, and other friends too numerous to list; thank you for everything. You have made my journey through dealing with epilepsy that much easier to deal with.
Greg
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