Modifying habits and overly expensive drugs

When one is diagnosed with epilepsy - THAT's when they start learning what NOT to do if you're epileptic. Of course, once a person is on medication, they should be able to do all the same things without any problems, right? That would be nice, but, unfortunately, no. Two common rules about epilepsy is that caffeine AND alcohol are two substances that should be avoided. I've decided to only live loosely by these rules, however, because coffee is my favorite drink and I'm a wine lover. This is the post that you'll read and want to slap some sense into me.

Caffeine speeds up the brain - alcohol slows it down. Neither one of these are thought to mix well with seizure medication, and the effects of these substances naturally can effect the behavior of neurons. Let me give you a living example. When I drink more than two cups of coffee within a few hours of one another, I can feel it. I don't get hyper like I used to, in fact, coffee often puts me in a better mood and helps me think more clearly. That is - the first cup does. The second cup - particularly coffees with high sugar content - sometimes makes me feel as though I'll have a seizure any minute. I can't explain this feeling very well - but I know when I've had too much coffee. It happened yesterday, in fact. I was at Target with my husband, and I'd passed my energy threshold, so he told me to take a walk over to Starbuck's and get some coffee. I'd had a small cup of coffee that morning at church, but since it was an insignificant amount, I didn't worry too much over it. I ordered a grande iced White Chocolate Mocha - for which I spent way too much money - and walked back over to our shopping cart. The coffee didn't re-energize me, in fact, I was just as tired mentally - although physically I perked up a bit. However, because I was mentally tired, the caffeine started working quickly and I could sense what was going on in my brain. My thinking was slow, and I had trouble comprehending things, although my brain was over active. Its as though I could FEEL the neurons shooting off quickly in my brain. Since my seizures I've become aware of the effects of caffeine, and this is only one of them. Its believed that caffeine can trigger seizure activity - which, that statement alone could mean that too much caffeine can offset the anti-seizure medication. To my knowledge, that hasn't happened, I've been seizure free for over six months. But, watching my caffeine intake is essential, although I'm a creature of habit.

The second substance, alcohol, is less of an issue for me, although I've noticed some changes since my seizures. I used to be able to drink a glass of wine and feel relaxed, but all right. Now, one glass of wine has me falling asleep standing up. The effects of alcohol are much stronger now that I'm on the medication - although I can sip mixed drinks slowly and be fine. Since alcohol slows the brain down, this is naturally a BAD mix with anti-seizure meds. I make sure to take my meds well after a drink, so that I don't run the risk of having a seizure. Although caffeine is thought to trigger seizures, alcohol is thought to increase them - which is a huge difference. The warning on my medication label says that alcohol should be avoided, and once again, I don't follow this rule to a T. But, I can say that I'm aware of the risk.

So, now that I've talked about how two things I love could cause me to have seizures - let me go on to other things epileptics shouldn't do. First, epileptics shouldn't stay up late every night. Lack of sleep is thought to be another trigger for seizures. I usually get between six and eight hours each night, now that I'm out of school. When I was in school, I drank coffee everyday and slept between five and seven hours a night - so I had seizures every week. I have one side note that is worth sharing: I miss the overly active schedule I had while in school. I was happy with it - I liked having assignments hanging in the balance which I could procrastinate on, and I loved having a set schedule. I loved writing a novel in my spare time, and I loved hanging out with friends on weeknights. Weekends were a bit more depressing for me, but I found my solice through busy-ness. And, I was completely ignorant of my epilepsy. The trade off, though, was seizures once, or more, a week.
When June 21st came and I was sent home and had NOTHING to do but watch meaningless TV and be alone while everyone else made something of their lives, I was totally aware of my epilepsy and was getting to sleep as much as I wanted. I didn't have to work because I couldn't, and I got to see my fiance everyday. But, the trade off was depression. Too much activity with no meds = seizures. Too much inactivity with meds = depression. I don't know which one is worse. Do you? Sometimes I'd rather have the seizures and activity - but, that just tells me how badly I need to redefine my self-worth. We're definitely worth more than our resume - but it doesn't always feel that way. The world trains us to think of ourselves as worker ants more than as individuals.

Anyway, back to lifestyle rules for epileptics - diet and exercise. Epileptics, like every other person in this world, would be better off if they exercised regularly and consumed a healthy diet. These are two rules that I wasn't able to do even before my diagnosis - and with my energy level being what it is, its difficult....OK, I just made an excuse in my own blog that is supposed to be teaching people how to live with epilepsy. That's sad. The truth is, my limited energy supply could probably be helped if I exercised. That's a rule everyone can follow. But, I'm not so disciplined in this area of my life - as my three months at home in front of the TV demonstrates. Yet, diet and exercise are two key rules for epileptics and ought to be followed. I'll start that next week. =) If one's overall health is improved using diet and exercise, their neurological health will be improved too, or so its believed.

The last thing that epileptics should never do that I'll mention today is probably the most important: DO NOT skip a dose of medication. Let me tell you what happened to me. The first time I forgot to take my medication, I went to bed and couldn't fall asleep because everytime I closed my eyes, I saw visions and heard voices. In fact, I can't even explain the things I saw because they were just too freaky. When I started hearing someone screaming inside my head, I got out of bed and told my mom that I was freaking out mentally. I had no control whatsoever of the thoughts in my head. I didn't have a seizure, fortunately, but the other stuff was enough to make me decide NEVER to skip a dose ever again. Just skipping a dose is not the only precaution, though - because its important to take the meds at about the same time each morning and night. Having a schedule is important, because even a few hours of variation is risky.

And I know I mentioned overly expensive drugs in the title - so here's the skinny on that. My med, Keppra, costs over $275 for a month's supply without insurance. The other med that I tried and was allergic to, Lamictal, was over $300 if I'm not mistaken. So - its expensive to be epileptic. This doesn't even touch the amount of money we are still paying for my four day hospital stay. We saw three different doctors - one of them saw me for twenty minutes and never came back; another one saw me twice and wasn't a neurologist; and the last one IS my neurologist who saw me for about forty five minutes. They all charged about $100 for their time, even the one who disappeared after the first visit. Not to mention that I was in the ICU because there were no open beds in the regular hospital rooms - so we ended up having to pay more for my stay even though the ICU was our only option. And this was WITH insurance. You'll be all right in the USA if you don't get sick - otherwise, the hospitals and pharmaceutical companies will take all your money and insurance agencies won't want anything to do with you.

Of course, the care I received was excellent - so I can deal.