One of the most boring things, for me, about epilepsy is the daily things you have to do to make sure you don’t have a seizure. I mean, the seizures are bad enough. But they don’t happen all the time. Most days, it’s just the routine I have to go through that can annoy me. Wake up, take your meds. Mark them as taken in the seizure-tracking app. Tired? Too bad, no caffeine for you! Make sure you eat lunch on time (you did bring your lunch, didn’t you?). Come home, try to relax. Everyone else is having a drink? Too bad, no alcohol for you! Nine PM, way earlier than everyone else: time to put your electronics away, get into your PJs, and wind down before bed. It’s not just repetitive and boring; the boredom can get annoying, too.
But of course, we have to plow through it anyway. The alternative is having seizures. And that’s not just exhausting and disorienting; we all know that having seizures can be dangerous in lots of ways. So we have to do everything we can not to have one. There are a couple of things you can do to make seizures as unlikely as possible. Let’s start with the most obvious.
Take Your Meds
I didn’t know this, but according to The Epilepsy Foundation, as many as half of people with epilepsy don’t take their medication as prescribed. And half of those seen in the emergency department for recurring seizures are there because they haven’t taken their meds. Can’t stress this enough, guys: take your meds.
“But I have too many pills to remember!”
Oh trust me, I’ve been there. When I was on my last set of meds, I was taking 11 pills a day, at four different times. I got myself a big humongous pill organizer.
This one is too big to carry around, but there are smaller pocket-size ones available. It organizes my pills and makes it easy for me to see whether I’ve taken my dose or not.
If that doesn’t work, make an appointment with your neuro. Tell them what’s going on and ask if there’s a simpler regimen you can try. After all, if the meds are too many or too complicated to take, they’re not working for you.
“I can’t afford these medications. Do you have any idea how much…?”
Oh yes. Yes I do. I’ve had to pay as much for my meds as for my rent. I’m immensely thankful for my work-paid health insurance. If I didn’t have it, my medication would cost more than my mortgage. If that’s what’s going on with you, talk to your pharmacist first. Pharmacists are awesome people. They can help you find discounts and coupons. Websites like GoodRx can also provide coupons for lower prices on drugs. (Not necessarily low prices, but at least lower.)
If that doesn’t help enough, go back to the neuro again. Explain what’s going on. The doctor may be able to change a brand-name prescription to a generic, or give you free samples. If even that fails, talk to them seriously about changing your medications. You shouldn’t be forced into a choice between groceries and medication.
“These side effects though…”
Yep. Been there too. In fact, side effects were the reason for nine of my ten medication changes. Really the only thing to do here is, again, talk to your neuro. We strive for zero: zero seizures, zero side effects. The most effective medications are no good for you if side effects keep you from functioning as you should. Stand up to the neuro, if need be. Insist that you can’t live with what you’re experiencing. Ask if you can try a lower dose, or if there are other medications that might work as well. (Pro tip: there probably are.) Don’t let your doctor convince you that the only way you can achieve seizure control is at the cost of your ability to function.
Own or Be Owned
I keep coming back to this: If you don’t take charge of your epilepsy, it will take charge of you. And you can’t afford that. You’re worth more than that. It does take some effort. Like I said, I’ve been there. But you have to push through. You just have to. You’ve got epilepsy. Don’t let it have you.
Stay strong. Take care. And be good to yourself.
Part Two will talk about seizure triggers and how to manage them.