Something has been weighing heavily on my obviously misfiring brain since my last Dr. appt. Maybe mulling through it on my blogosphere haven will help me figure it out. Probably not but hey, can’t hate a lady for dumping out the contents of broken neurons right?
I’ll back up a bit. I’ve had seizures for quite some time. They used to be really bad…as in rock, rattle, and roll bad. One caused me to apparently flop down the stairs and knock out a hip…putting me on cane patrol for a while like a little old lady, one gave me an ambulance ride from Kmart, and for a while I was pretty sure I’d never wake up without a wet bed/bruised something and bloody tongue. I was one pissed off gal. I raged at the world. I sunk into a depression and pushed everyone out of my life. A guy who happened to be unfortunate enough to constantly witness these episodes but kind enough to shrug them off and clean up the mess finally convinced me to ditch the neurologist who was just upping the medicine without trying something different and see a different doctor and OH- they had come out with this new drug that I should try out. This drug was new to the market at that time…just out of trials and approved by the FDA for use in epilepsy. I agreed to give it ago…name? Topamax. I was started out at 25mg and told to increase by 25mg each week until I hit 200mg twice a day. This drug was evil…horrible…wow. My seizures continued and my fingers tingled like they were asleep all the time. My mouth felt like it was numb and food tasted just gross. I started dropping weight and people at work thought I was on crack as I walked around spaced out, forgetting simple words like “apple.” I kept taking it. By the time I hit 100mg twice a day, the seizures had decreased from almost daily to a couple times a week. My brain felt fried. I was stupid and had memory loss. I had dropped almost 20 lbs. I stopped sweating. I kept taking it. I hit the ‘magic dose’ of 400mg and the big seizures were gone. I have only had 2 grand mals since…and that was over 13 years ago. At first I had to walk around with a tiny notebook in my butt pocket and write down everything. Conversations I had with people, where I set my pen, that I had a pen, the WORD pen. I became shy. When I tried to talk, the wrong words would come out as I’d stumble to find what I wanted to say. My lips, fingers and toes constantly tingled and I wore out easily. I dropped to skeleton size and my butt hurt all the time from hard chairs. But, the big seizures stopped so I kept taking it. It turns out my potassium was at dangerously low levels and once that was corrected, the side effects got a little better, drinking a lot of water also helped. I learned tricks for the memory- though it’s never been as good as it used to be. I affectionately nicknamed my Topamax “Dopamax” and “Stupimax” and called the tingles I got “Topatingles”. Food was “Topafied.”
Unfortunately, while the Topamax stopped my grand mals (or Tonic clonic/generalized) seizures- it didn’t stop the smaller seizures that apparently preceded the larger ones. I didn’t even know those existed until I got the big ones under control. I also didn’t know what they were until they were pointed out. I just “lost time” and then got confused and tired. At work the world would suddenly get really, really loud—picture everyone and everything around you suddenly being put through the loudest amplifier EVER. It echoed in my ears and I would plug them trying to make it stop. HOLY HELL that hurts. There is no stopping it. My stomach would fly up into my throat as if I just went on a roller coaster and then bam…nothing. I was pretty sure all I did was take a nap at that point. I’d wake up groggy and a bit confused as to where I was and then go about my day. It was soon pointed out to me that I was picking at my clothes, smacking my lips and staring. I mean what the heck?! Who does that? This was happening a lot. In the day. While I was sleeping. Totally random. I went back to the neuro. He shrugged and referred me to an epileptologist.
The epileptologist explained that I was having partial complex seizures and needed to add a medicine on to the Topamax to control them. That’s where the story begins. In the last 10 years, I’ve tried every medicine that’s come out on the market…and the old medicines that have been available since the 50’s and while we’ve managed to bring my seizures down to 1-2 a month and they’re now only while I sleep (barring a few breakthrough day time seizures)—I still have 1-2 a month, meaning I’ve been deemed ‘intractable.’ I also have a simple partial seizure about every 3 months or so during the daytime (I don’t lose consciousness during those—that would be that horrible amplification of the world) that just halts where it is and never spreads to the rest of the brain.
This sounds like a sob story right? Not really. The whole epilepsy thing stopped bugging me a long time ago. Epilepsy became a side-note in my life back when I decided other things were more important. I think spending a little time on the pity-pot was ok. It was rough for a while. In 2003, I had a small stroke and spent way too much time in the hospital. I think I actually caused more strife for the hospital staff and my family than that whole deal caused for me. By 2005 I decided that all this medical stuff was really annoying and I didn’t want to deal with it anymore. I, of course, still had to deal with a few things but I started to focus on life more and medical stuff less. I had some unavoidable issues pop up medically that made me probably pretty mean for a second or two but I was able to move on more quickly by this change in attitude. My husband would disagree, but my method is good- I avoid doctors at all costs and do things that I want to do, living life for today versus all this hubbub about ‘what if’ and omg I could get hurt…or what about tomorrow. I’m not entirely stupid, I plan somethings out but I don’t revolve things around my seizures, I tend to ignore pain, and I’m not much of a health freak though I’ve gotten more ‘healthy’ in general in order to minimize the side effects of my medicines and feel more awake.
There you get to now. Epilepsy is not bugging me. Why the nagging thing? When you have seizures you’re not allowed, legally, to drive unless you haven’t had one for a certain amount of time (In MN this just got lowered to 3 months I believe.) At my last doctor appointment we were once again hashing out options to get rid of or at least decrease those last couple per month seizures and I brought up that I was fine except for the want to drive someday as once and awhile I do feel like a burden on husband and friends as well as a twinge of sadness when I see people out doing something I can’t get to due to the lack of transit options. Epileptologist immediately stated that the only way I could drive is to get a resection. That would ultimately be my cure too. I just need to put in the work and do it. He has brought this up at pretty much every appointment and expressed disappointment when I say I have no interest in getting my brain cut into, thank you very much. After this appointment though, and his statement about the driving I was given a little bit of pause. Am I being selfish in refusing the surgery? I do burden people all the time asking for rides. I ask my husband to get up early in the morning to drive me to races, I frequently miss people’s birthday parties due to lack of a bus option, I beg rides off people when something I need to get to is far away, and I sometimes whine about the cold as I take the bus home and walk in the winter time. Maybe I should shut up and “do the work” to cure myself rather than whine, beg rides, burden. I just have a horrible time thinking about someone cutting my skull, and taking out a piece of my brain…misfiring or not. I am starting to feel selfish though and that is taking away my normal zesty zest.
I have started to look at alternatives to ‘cure myself’ and would, I guess, consider a VNS implant; though I’m afraid it would affect my running. It’s at least removable if it doesn’t work. It’s not truly a cure but if it helps me reduce medication or brings me to the point of going 6 months between seizures (DRIVE ZONE!) wouldn’t that be a win? It’s much less invasive (no skull cutting—just neck/chest) and reversible. I still have this feeling that I’m doing fine as is though. Just not as happy as before that appointment. I’m sure it will go away once I figure out a new way to be independent and non-burdensome. Forgive me the brain dump. It happens once and awhile. If anyone has feedback in regards to a VNS affecting running- I’d love to hear it. I’d also love to hear of areas to live where transit is amazing….we’ll move when I graduate. I have to remember that this won’t be ‘always’ CHIN UP ME! Annie said the sun will come out tomorrow, and it will.
LEAVE IT ALL ALONE AND TAKE THE DANG BUS!