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.