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.

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 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?

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.

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

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

How do you know?

I read an article today (a twitter from brainthunders - thanks Alysse!) that was an interview with a former member of the New Zealand All-Blacks (their National Rugby Team): http://www.nzherald.co.nz/rugby/news/article.cfm?c_id=80&objectid=10667235
In it, Leicester Rutledge talks about his history with Epilepsy while he was playing, and how he wouldn't know anything was happening since he lived alone. It wasn't until he started sleeping with his wife (his "mary," though I am not sure if that is her name, of course!) that she started noticing them so he knew exactly when they were happening.
His story resonated with me, but hearing him speak about his inability to come out and talk about his condition 30 years ago made me realize how far we have come.
But we still have a long way to go.

Brain Surgery

I follow posts on LinkedIn and other blogs, and now and again I go back and re-read what I posted however long ago. Today I was reading about my thoughts that at some point in the not-to-distant past, I thought that the possibility of my having serious discussions and investigations into possible surgical treatments was far realer than perhaps it was (or even is now).
The idea of brain surgery scares the ever-loving crap out of me (as if someone out there actually says "Gee, I'd like to go have my skull sawed open and surgical instruments stuck in my brain!"). But I do think now and again about what the future holds for me with respect to my epilepsy.
I am fortunate enough to be marrying the most amazing, incredible, wonderful, beautiful, sexy (ok, I'm losing my pg rating here) woman in the world in 37 days. I have thoughts about what my life will hold with epilepsy:
Having children.
Growing old together.
Right now I am on a combination of barbiturates and Trileptal. I feel tired now and again, which is an understandable side-effect of the barbiturates, but if it keeps me seizure free, I'll take lethargy over brain surgery any day of the week and twice on Sunday. But the fear of "what if I don't find a good balance of medication" still looms over me. What if my doctor says to me "Greg, we need to consider surgical options." What if.
Scary.

A Solid Run

As the wedding approaches, I am trying to get out more and exercise in addition to eating healthier. This past weekend, I ran in the Damon Runyon 5k, whose course was laid out throughout Yankee Stadium! It was very cool, and we even got to run around the field on the warning track for a couple of laps!
I was a sprinter in track in HS and College (not anywhere close to elite, but I enjoyed competing), and a few years ago tried to get into running longer distances, to increase my endurance and improve my overall health.
As I have mentioned, my seizures are almost completely nocturnal. I say almost as there have been a few instances through my nearly three decades with epilepsy when I have seized while awake:

- My first seizure in 3rd grade, during the pledge of allegiance. :-) (I actually remember this one - pretty interesting memory!)
- A seizure while living with my roommate in Manhattan shortly after college (I was extremely drunk, not medicated, and chalked it up to the alcohol).
- A seizure at a pool match one league night (at the bar, but not drinking).
- And I seized while running during my more aggressive running phase a few years ago.

This last seizure occurred on a relatively hot day, and I was pushing myself on a long run (around 4 miles). On the sidewalk, I suddenly collapsed. Had it not been for a passing motorist who saw me fall and called the EMTs, I do not know how long I might have laid there. As it was, part of my fall contributed to a torn rotator cuff, and I eventually had shoulder surgery.
While I don't think that I am going to fall and tear my other shoulder (I have eliminated most of the other more significant factors of that injury from my life), I do still worry about pushing myself too hard in a workout and seizing. I simply don't know if any of the "big 4" had a contributing factor that day. I can rule out alochol, but stress? Running can be stressful, particularly when you are pushing yourself. Dehydration? Obviously. Exhaustion? Duh.

So back to yesterday, where I did a 5k with my friend and trainer Victor. I thoroughly enjoyed it, and would love to get out and run even more often, and truly want to get myself back to where I was running a few years ago, when I was doing a much better job of running often, running good distances... Heck, running outside, as opposed to just on a treadmill!
But I still worry about that seizure...

I wonder...

I find myself at work with somewhat of a headache and the typical exhaustion I feel after a seizure, and yet I don't have any of the muscle soreness that would normally come with a seizure. Perhaps I had one so small it was barely noticeable? Was Mary in the shower or in bed and too zonked out to notice? Who knows.
Bottom line is I will keep at it at work today. Maybe, as Mary says, it is just part of this cold I have been battling for the last week.
Doesn't feel normal though...

Seizure Dogs

It sounds strange to think of a "Seizure Dog," and yet there are animals out there who can sense the onset of a seizure. A blogger whom I follow (Alysse - www.brainthunders.com) has recently learned the devestating news that her dog (who just so happened to have the untrained and natural ability of being a seizure dog) has a tumor in its leg. I'm pulling hard for everything to come out well for Alysse, Tucket (the dog) and her entire family.
Mary has been my "seizure dog" (that sounds horrible, doesn't it?) since our relationship began. She wakes up when she senses a seizure coming on - usually from changes in my breathing, she says. This helps her make sure that I am not in a position to hurt myself or her when the seizure begins.
Now, our building doesn't allow dogs, but Mary has ALWAYS wanted a French Bulldog, so the natural, logical progression is for us to have a "seizure French Bulldog," as if we have a dog for medical reasons, it's not "really" a pet, is it? :-)
In our next building, perhaps... I will get Mary that French Bulldog one day. And if it is also a seizure dog, all the better!
Be strong, Alysse - Lots of good wishes are coming to Tucket for a speedy recovery from all over! :-)

Artificial Sweeteners

I've been thinking recently about artificial sweeteners (Equal, Sweet 'N Low, Splenda, etc.) and how, if at all, such chemicals might interact with the brain as it relates to seizures. I remember years ago that people claimed there were links (spurious ones?) between Nutrasweet (Equal?) and an increased frequency in epileptic episodes.
Personally, I don't know if I subscribe to these theories (I certainly don't know if I view them as facts, but...), as I am a frequent imbiber of Diet Coke, and I have Splenda with my coffee every day (sometimes 2 coffees or more, depending!).
It has always been said that the cause of seizures can be multifactorial - alcohol, dehydration, exhaustion, stress, a good whack on the noggin - etc. But do things like diet, particularly when it comes to chemicals like artificial sweeteners, play a role? A small number of people out there have stated that ketogenic diets have shown success, but there is so little consensus amongst all the experts in the fields and the empirical data available.
Just my rambling thoughts for the day. Still sick, but on the mend.

Sick...

My wonderful fiancee has given me a gift that feels like it will never stop giving. Her cold. Starting on Saturday, I began showing symptoms of her head and chest cold, and yesterday we had a drive scheduled up to upstate NY and MA to have our food testing and check-in at the wedding location to continue our work on determining scheduling and flow. I somehow made it through a 3 hour trip up and another one back, but between sweating and coughing and generally feeling exhausted, I am in a world of stuff this morning. The cough feels awful, my throat is raw and irritated, and I have the energy of a AAA battery sold at a flea market, which is to say not a whole lot!
Past history has shown that mixing night-time cold medicines such as NyQuil or Tylenol Cold & Flu seem to give me an increased susceptibility to having a seizure, so I am only taking the daytime stuff. One wonders if I had taken some night-time meds last night might I possibly be feeling better today and NOT have seized. Ugh.
Despite all of this, she has (as always) been a rock in taking care of me, and I love her all the more for it.
Knock on wood this thing gets the flock out of my system sooner rather than later!
Ugh.

Disappointed

Last night I went out with the gang from work (again) and got blitzed (again). For whatever reason, I have (over the last month or two) gone out several times with the guys from work and gotten really waster - too much alcohol. WAY too much alcohol. On one occasion this may have contributed to a seizure, I don't know. I don't really want to speculate. But I do want to nip this in the bud. It is not fair to myself or my doctors who are working hard to find a balance of medications that will bring the epilepsy under control ("don't mix with alcohol" on the label, and my doctor's concerns that I really shouldn't be drinking on this medication in general). But most of all, it is not fair to Mary. She doesn't deserve to have a drunken idiot coming home reeking of alcohol, worried that she might again be woken up in the middle of the night to my seizing. If I can't do this for myself, I damn well better do it for her. I love her more than anything, and I would do anything for her. I will do this for her.

Facebook connections

Out of the blue this morning, I get an email from an old friend asking me why I had posted an article on Facebook about Epilepsy, and did I have Epilepsy. She went on to tell me that her 5 year old son does.
Now this is someone who I was friends with in High School, but am now just Facebook friends with, really. But what struck me is how Social Media are enabling people to find more and more people dealing with similar issues. 7 or 8 years ago, I would have told you that I knew of one, maybe two other people with Epilepsy. Since the advent of Social Media (and granted, the more attention Epilepsy has received), I have come to know more and more people whose lives have been affected by this condition.
I remember hearing the statistics "1 out of every 100 people has some form of epilepsy," but never being able to believe it. I knew hundreds of people - friends, acquaintances, family - through work, socializing, online... I only knew about one of my father's friends and a woman I knew from the bar. Three of us.
no longer.
On a separate note, today is the day I go up to 500mg of Primidone (Mysoline) - we'll see how this works for me, but I am keeping optimistic and hopeful that "this time" we have found the right balance of medications.
And Good Luck to you and your son, Jenn!

The bear

So Mary wakes me up at about 6:30 this morning and asks if I'd like an extra 10 minutes of sleep. Apparently I am a bear and did not notice the alarm go off at 6am, the snooze at 6:09, or the second snooze at 6:18. This is, of course, not news. I have always been a VERY heavy sleeper!
Mary is convinced that if it (the alarm) went on long enough, I would hear it and wake up.
But I wonder if I am going into a "deeper" sleep from the barbiturates, and whether I am (in fact) getting worse...
Zzzzzzzz......
Zzzzzzzz......
Zzzzzzzz......
Ugh.

Football

Well I was born a Washington Redskins fan, but today I became a HUGE fan of the Atlanta Falcons, in particular of their RB Jason Snelling:
http://epilepsyfoundation.org/knowthedifference/media.html
Anytime I see celebrities speak out on this issue, I become particularly enamored of them. Seeing the Axelrods on 60 minutes a while back and their founding of CURE really overwhelmed me, and this small public service announcement makes me very happy. It's great that more and more people seem to be bringing Epilepsy into the forefront of conversations.

I now have a new goal:
I will make it through the coming weeks leading up to the wedding, the wedding weekend (Sept. 25th), and my entire honeymoon SEIZURE FREE.
Rock my world, Primidone and Trileptal!

Crappy birthday present

So today is my mother's birthday. What a wonderful present to give her, calling up and saying "hey mom, had another couple of seizures last night." Blech. Been a month since I had one and the doctor put me up to 150mg BID of the Primidone. I saw him on Monday for a brief checkup and he took blood, the initial results of which combined with last night's episode have caused him to go up to 200mg BID for the next week and then finally 250mg BID after that. He was initially going to try and move me up to 250mg BID anyway, so I guess it is not that much of a big deal. Still, I hate dealing with the constant changes in my medication schedules and make-up.
Interestingly enough, it is also about one month since my last seizure, give or take a day. What a wonderful one-month anniversary present.
One day, Greg... One day...
Bottom line, though, is having Mary just makes everything so much easier. Less than two months to our wedding day. What a wonderful present it would be to give her, if I could say "no more milkshakes for the rest of our life together."
(I make great milk"shakes" - ha ha)

I go up so fast

Today begins day one of a higher dosage of Primidone (Mysoline). Now I will be on 300mg a day (3x50 am, 3x50 pm). When I spoke to Dr. Lee yesterday, he conceded that the barbiturates can take a while to work their magic in my body, and get to the point where they are being fully absorbed (?) or something. Dr. Lee also said that his ultimate plan is/was to get me up to 500mg a day, so I'm only 60% there.
Regardless, I will have another meeting with him in a few weeks, take some blood tests, see what Primidone done to my liver.
On a bright side, I got dressed for work today and Mary said she thought I looked slimmer! No Depakote, better eating, exercise...
I am going to be a slim groom for my woman! :-)

Too much to ask?

So last Thursday I started my first day off of Depakote and my first day at my 250mg level of Primidone (Mysoline - barbiturates). I seem to have been tolerating it well; no real exhaustion or other side effects.
Until this morning.
Yet another medication where I have a breakthough. Last night (this morning) between 11:30pm and 3:30am I had three seizelets. Mary seems optimistic as the seizelets didn't end as intensely as they have in the past. She thinks (hopes) that this may be due to the new medication having a good effect and being worthwhile.
Each started like a grandmal, with twitching and ticking, but without the more serious drooling/frothing, heavy moaning and breathing that usually occurs afterwards.
I wonder... Can I adequately describe how much I hate this? I am at work today, feeling wiped, but will do my best to push through.
By the way, the CBS 60 Minutes special on the group CARE, founded by Susan Axelrod, and the story of her and her husband David's child who has been suffering with epilepsy since she was a baby, was rerun this past Sunday.
Not sure if it can be found online, but very moving.
Greg

Depa - K-O - te

Tonight is the night I say sayonara to, give the old one-two punch, and K-O my Depakote. I have really been so unhappy with this drug; the weight gain more than anything else. But since I have been coming off of it, I have noticed the shakes FAR less often (practically never, in truth), and the appetitie and weight issues seem to be improving finally! My doctor said once I am totally off the Depakote, the weight should start coming off fairly quickly.
I am hoping that the little things I am doing more often (going to the gym, eating healthier and smaller portions) will help with that too! ;-)
That's all from the land of milkshakes!

Ohhh.... THIS is why Al and Barbara don't get along!

yesterday was, quite simply, awful. I ran a 3.5 mile race on Wednesday evening, part of a large competition that numerous people in my company signed up for (or rather, I was a member of my company's team): "The JPMorgan Chase Corporate Challenge."
Afterwards, I went out for pizza and beer with my coworkers. THEN, Rick and I went out to a bar for a couple more.
Now, let's flashback to earlier that afternoon when my doctor tells me "be careful how much you drink. Alcohol and barbiturates don't mix well; the barbiturates enhance the effects of alcohol and you could feel drunk after just one. You should be careful. If I had my choice, I would say don't drink, but I know that is not totally realistic."
Let me just say this. The morning after (ok, the whole bleeping day) drinking WAY too much and going up on my barbiturate level, I was practically a zombie...
Al and Barbara clearly don't like each other, and should never be married! (At least for as long as I had them married!)
UGH!!!

Won't you take me to - Funky (dream) town?

Not sure if it is related to the barbiturates or just a totally unrelated phenomena, but my dreams of late have been very vivid, very memorable, very weird. Last night I actually had two dreams within dreams. I dreamt something, then my dream self woke up saying "it was all a dream." Then wild and crazy things started happening to THAT dream self before another dream self woke up saying it was all a dream. Then after further weirdness occurred, I (reality me - the person writing this blog entry as someone speaks) woke up. Freaky.
Don't know what to make of it, but as I say, the dreams have been plentiful and very intricate. Of course, I guess the reality is that you generally do (or should) get the same amount of REM sleep each night. It's simply a matter of whether you remember it in the morning, which I now (more often) am.
Hmmm....
Another thing to discuss with Dr. Lee today. Hell, I guess for a $40 co-pay, I can bother him with seemingly inane observations. For all I know they might tell him about some side-effect I am experiencing, good or bad.
We'll see!

Not your everyday Monday morning blues

Had a god-awful sleep last night. Not sure why, or I would have done something to change it. First I was having a fitful, bizarre-dream filled sleep that had me waking up totally parched and tossing a bit. Mary woke up as a result and immediately got me something to drink. (There's a reason my father gave her the moniker "Saint Mary") I went back to bed, but probably woke up every other hour or so, again to different dreams, or simply for some unexplainable reason. Chandler sat or was curled up to me virtually the whole night. He often spends a good majority of the night next to one of us or at our feet, but this seemed like an extended period of time even for him, unless I have had a seizure, when he always curls up with me. Well, while I did not have a seizure, I will confess that my dreams largely consisted of thoughts of me having seizures, which no doubt explains why my sleep was so crappy.
Maybe that explains why Chandler was next to me so often? There is no explanation for why Mary wakes up when I do and gets me water or comforts me OTHER than she is indeed a Saint (103 days til she is eternally bound to me!).
On a side note, Chandler is going to be one sorry, sorry cat night when we brush his coat. That is LONG overdue, but he HATES HATES HATES it when we do so, and throw and absolute "Hissing fit" that can be heard in Cleveland.
All for now.
Me

Missed meds

Haven't missed a dose in ages, but I missed on yesterday morning. D'oh.
What can I say. Sometimes I am a forgetful maroon. Hopefully it won't be an issue.
I have never understood when I DO have a seizure and my doctor says "did you miss any meds," why if I have, it never seems to have "likely have made an impact or been a trigger!" :-)
I'm on three medications right now, so hopefully that in and of itself will prevent any seizures or seizelets from rearing their ugly little heads.
Time will tell.
Hopefully I don't have a seizure within 43hrs, 29mins and 46hrs, 12 mins from when I normally would have taken my last dose. That could be bad. Could result in a seizure.
(Sorry to sound flip and glib. Just my mood.)

a bit more dizziness today

Not sure if it was the intense workout last night (Victor, you SUCK!), the time between medication doses, or just randomness, but yet again today I had a dizzy spell this morning. Annoying. 20 minutes of my day I want back.
This weekend we need to look for Honeymoon packages. YAY! It looks like we are settled on Hawaii! WOO HOO!!! Warm weather, gorgeous beaches, and RELAXATION!!!
AAAAAHHHHHHHHHHH!!!!

Week one is done

So I have gone through my first week with Primidone (Mysoline) and so far so good. I haven't felt overly exhausted on the primidone yet, but then, it does take a while to build up in your system, so... I will start going down to 1500 of Depakote today, and I am looking forward to combining better eating, more exercise, and NO DEPAKOTE so I can get to a better, more healthy weight!

Medco sucks

FINALLY got an email that my medication had shipped... This was the NEW (ok, old - the Mysoline I took as a kid) medication that I am starting on while I wean off of the Depakote which has been turning me into Porky Pig.
If it arrives tommorrow (knock on wood), then I will get about a week on it before my parents arrive. That would be nice!

head spins and dizzy spells

I had my worst dizzy spell and head spin in a long, long time this morning. It started around 7:20am, which was about 1/2 hr. after I took my morning dosage. Walking down the stairs (we live on a 5th floor walk-up) was a little bit of a challenge, but not too bad since I know exactly how many stairs we have and have handrails. I made it down the street, on the subway, down to Starbucks, and up to my office (though granted much slower than usual). I'm still in half an hour before most everyone else. But I hate feeling like ass in the morning like this.
Hopefully it will pass soon.

I hate dizzy spells

Yep... yesterday and today, I had them... Still kind of having them this morning...

Doctor's Appt.

Went and saw the Dr. yesterday. He noticed the shakes and the weight gain, and we are going to have me go off of Depakote. While I have been on virtually every single medication known to epileptics, we are now going to try putting me back on Barbiturates (Primidone nee Mysoline), which as a child seemed to work well. It will be a long process to wean me onto the drug, but hopefully it will help.
Had another good workout last night with Victor and Mary and between yesterday's training session and Sunday's workout, as well as last week's workouts, I feel like I am getting into a better groove with respect to working out.
ttfn,
Greg

head spins, anxiety, and an increase in the Shakes

On the way to work today, I was feeling anxious. At work, I am feeling flushed and have a slight case of the head spins. I don't know if this is due to anything in particular, or if there is a medical reason behind all of this.
However, I am also feeling that the shakes are becoming more pronounced and noticable (at least to me). I will be typing and do double and triple strokes. I will hold something and a moment later twitch and feel as though I am about to drop it. I will feel as though my hands in general are weaker and I try and squeeze them shut to assure myself that they are as strong as they have been before. Typing on the phone I make a lot more errors than I have before (as I do on the keyboard).
6 more days to the doctor and we'll talk.
BTW - hit the gym last night. DAMN am I tight in my leg muscles... Ugh... 20 minutes with the foam roller every day is going to be a necessity...

Monday Morning Depression

I have not woken up this depressed in a long, long time. The simple explanation for Mary was that I was unable to get out of bed at 5am to go to the gym with her - something I desperately need to do more. Granted, I had slept fitfully last night with very strange and disconcerting dreams, but still...
My weight is starting to depress me more and more. I try and eat less, eat better, but I can't lose eve a pound. I have BALLOONED to over 210, where but a couple of months ago I was 190. Another pair of pants this morning proved useless as I couldn't even button them closed. I hate this - I want to blame Depakote for this gain in weight, and while I am sure that it has comething to do with it, I also have to thank Depakote for what seems to be the most stable I have been in a long time as far as seizure control in concerned.
Do I want to be a little porky piglet with no seizures or someone with the occassional episode who has his weight more under control. Can't I have both?
I meet with my doctor a week from today, and perhaps he will have a solution, but damn it I am depressed this morning.
There are 138 days left til Mary and I get married. I love her SO much, and she looks amazing right now. She deserves a groom walking down the isle as fit as she is - not someone who can't fit into the clothes they've been wearing for 10 years by a good two inches.
As Mary will sometimes say to me, I will try to "Snap out of it." But as I said, I haven't been this depressed in a long time.

What do I say?

I am having another appointment with the Dr. in a couple of weeks. Do I ask him for a reduction in my dosage of Depakote because the weight gain is disturbing me? Do I suck it up and try and go above and beyond at the gym and diet to compensate?
How much does or can my diet affect the frequency of my seizures?
I don't like the fact that this frickety-frack-#$%(&#%* disorder is not yet capable of being dealt with as well as we all would hope, but... nothing to be done, I suppose.
I just want to have what appears to be a relatively well controlled cocktail of drugs that DON'T make me a fat blob of porky-pigness.
Ugh.

side effects

So I am dealing with two sets of side effects, now.
One is the old side effect of head-spins and queasiness in the morning. Lasts for about 10-15 minutes and is then gone. In the grand scheme of things, this is minor and totally unimportant. If I live with this for the rest of my life on occassional mornings but have no seizures, FINE! I would be THRILLED!
That side effect is likely from the Trileptal, as it seems to have been in the past.
The other side effect is the weight gain. I'm over 210 now, whereas I was in the low 190s a couple of months ago. I know that blaming the medicine is the easy way out. I could have been and should have been exercising more and eating better, having know going in that this was a side effect.
Nonetheless, I've gained nearly 20 pounds and am SOOO frustrated. I am seeing the Dr. in about 2 weeks and perhaps something can be done. Having controled the seizures relatively well, however, I don't think he will (nor will I in the end) want to change the dosages and go fiddling around just so I can lose weight more easily.
Time for better exercise routines (including going to the gym MORE OFTEN) and perhaps eating better and eating less - what a concept. But damn it that last part is just so hard to do... My diet didn't change the entire time I gained these ~20 pounds, which makes me want to blame the medication more and more, and having something to blame makes it all so much easier to deal with...
*sigh*

again???

My head is swimming a bit this morning... Not sure if the side-effects have returned or not, but needless to say it doesn't make me happy. Fortunately they are not for an extended period of time, but none-the-less, I don't like spending the first part of my morning at work trying to focus on the computer and not concentrate on my head doing a swirly.

the blahs

Last night I curled up on the couch with Mary and was hit with a case of the blahs. Part of me is wondering if it was because I had experienced a mild seizelet the night before (the type where my face twitches, not a grand-mal or tonic colonic). I spent Sunday morning with a sore face (spare me the jokes of "does your face hurt? cuz it's killin me!"), took some Advil, and after a while, was physically ok. But am I mentally? I still wonder sometimes how my epilepsy will affect those around me as I get older - Mary, my parents, my children (or child) to be...
I don't know if this is what was giving me the blahs or not. Mary said they came on while we were watching Pretty Woman. huh...
This morning (A day and a half later) I had mild dizzy spells for a couple of minutes.
The twitching is also becoming more noticeable and (I think?) more frequent, but the twitching is not so severe as to diminish my capacity for doing anything. It is the sort of thing, for example, where my fingers will be "waiting" over the keyboard for me to formulate my thoughts, when suddenly they will "twitch out" and strike a couple of keys randomly. Or I will be holding a cup, and I will have a brief twitch where, while I don't really think I will throw the cup somewhere then, the though of what will happen in the future scares me. Sometimes I look at my hands stretched out in front of me when I feel this way and I see ever so slight trembles. Trembles, Blahs, Dizzy spells? Or no Seizures? I don't know.
This seems to be the common dilemna faced by most anyone with brain issues - what is the balances between side effects and control?

New article on Epilepsy

So I found this article on CNN not long ago:
http://www.cnn.com/2010/HEALTH/04/13/depression.drugs.suicide.risk/index.html?hpt=T2
It made me think, as not only have I tried the majority of those meds, but I am on 2 of the 5 meds which reputedly have a higher risk of suicide. Yay (notice the dripping sarcasm?). Now I don't find myself dealing with suicidal thoughts. Indeed, most of the time I find myself to be quite happy. I have a wonderful network of friends and family, and am getting married to the most amazing woman in the world (sorry single guys on the prowl, out there - you lost out!).

But I can't help wonder when I read articles like this... How much of what we read in articles such as this, or hear from our doctors and read on medicine bottles (such as side-effect warnings) become self-fulfilling prophecies? Do people kill themselves because they think that something is bad and they must be part of the rare % of population taking the medication who is destined to kill themselves? And what about weight gain?
I have been on Depakote for a couple of months now. I'm fatter by about 15 pounds. I am trying to be more active at the gym (I was before, but not as consistently) and eat better (my diet before was terrible), but I am not seeing anything improve. Is my metabolism with Depakote affected? Does Depakote infuse Pig DNA into my system?
Or would I not have gained weight if I hadn't been worried about it to begin with? If I can get my fat-ass back down into the 180s, I'll know for sure.

another cluster

I will go see my Doctor again this afternoon, having had yet another cluster on Friday night. Yay. I am relatively confident he will raise the Depakote, and that will put me to 2400mg of Trileptal and 2000 of Depakote. I feel like a pill popping junkie. Every morning I am throwing down a mouthful of pills that my fiance is always worried I will choke on (primarily because she struggles to swallow one pill, whereas I can down about 15 at once).

Mary is away

So with Mary away, I (again) slept on the couch and the cat (again) woke me up at some ungodly hour. I suppose to some extent I should be worried about having a seizure on the couch, but I get frustrated enough about the epilepsy in general that thinking about where I might have a seizure while sleeping just seems nit-picky to me. I seem to by and large be much more upbeat than I was the other day, but I am finding that my "depression," if you will, that I normally ensure post-seizure seems worse over these past few months.
Is it because the seizures are in clusters?
Is it because of the new meds I am on?
I don't know, but I suppose at the end of the day what really matters is that I cope with it! :-)
Mary is getting married to an epileptic. There is a reason why her nickname is Saint Mary. To put up with me, irrespective of my epilepsy, takes quite a soul! :-)

gettin punchy

So monday night I had another cluster - three this time. After the first two, Mary woke me up and gave me an Atavan (sp?) which my doctor said could stop seizures in the middle of a cluster. Well, I only had three, so maybe it did work. I don't know.
Apparently, I was a little too close to the windowsill that night, as not only do I have a bump on my head, but I tore up my knuckles/hand pretty good. So good, in fact, that I got blood all over the sheets (sorry Mary!). Ugh. Not a good night. Called in sick as usual and slept most of the day.
I really, really hate epilepsy. When my parents called that morning (I had emailed them what had happened), I picked up the phone and responded "Mary's house of Milkshakes!" My mom chuckled and Mary laughed, but when I tried a similar joke later with my doctor, I got no reaction. *sigh*
I already had an appointment with my doctor for Monday, so I will see him then to measure how my Depakote levels are in my liver. He just bumped me up to 1500mg a day.
FYI - the Big E Sucks.