So I'm Scared

I tell myself it's OK to be scared, epilepsy is a scary condition. That doesn't make it any better.

I went to my neurologist yesterday morning. I'm having side effects from my current medication, Trileptal. More so, it seems, since I've lost weight. I was definitely overweight, I needed those 20 pounds gone; but the less weight, the more I'm affected by the amount of drugs I'm taking. My last set of blood tests showed my Trileptal levels normal, but on the very high end of normal even before taking my morning meds. Usually, a reading like that indicates that there's a good reason to decrease medication levels.

At the same time, I'm still having a few breakthrough partial seizures a year. Not many - but three or four a year is way more than I'd rather have. And way more than people close to me feel happy about.

So, after discussing all the issues, the neuro and I decided to change my medication. Vimpat is a new drug on the market for partial-onset seizures like mine. I'm going to gradually move from the Trileptal to the Vimpat over the course of the next several weeks, first raising my dose of Vimpat gradually, and then (only then) decreasing or maybe even eliminating the Trileptal.

That's a frightening thought. What if I get so over-medicated I can't think straight? What if I don't respond to the Vimpat and start seizing again? What if I can't drive for six months? Or a year? I haven't had a generalized seizure in over 11 years; I don't want to break that streak. And I'm petrified. I've told you guys what having a seizure feels like. DO NOT WANT. WOULD NOT ORDER AGAIN.

Rationally, I can tell myself, "It's OK. I've done this before." I've switched from Dilantin, to Depakote, to Tegretol, to Keppra and Lamictal, to Trileptal. Each time without any noticeable problem. I even have an appointment with my neuro in 5 weeks to check on how things are going. So there's no reason to believe this time will be any different.

Unfortunately, my mind doesn't need a reason to believe anything. I walked out of the doctor's office this morning, head high, totally happy at what I'd chosen to do. Then it hit me. What was I walking into? I'm not the only one affected by my health; and even if I were, maybe this isn't something to be taken as lightly as I tend to take things.

I'm scared. I'm sure my wife is scared. She's only seen me switch medications once before. I haven't done it for over a decade. What could happen? Anything, right? Too much medication, too little medication, seizures, side effects; all irrational fears perhaps, but all very real.

You know what, though? This is part of owning my epilepsy. If I'm going to be the one in charge, I have to accept how it can make me feel. It's OK for epilepsy to scare me, it really is.

Cause I'll scare it right back.

Medication Side Effects - Win Some, Lose Some

Yeah right.

Well I wasn't going to post this for a while, but then this morning happened. I got up early and took my meds right at 8:00, as usual. I even marked it down on EpiDiary (my personal favorite epilepsy medication and seizure tracker) so I'd remember. But then life started happening. I got busy, and round about 11 I couldn't remember whether I'd had my morning meds. So I took a pill "just in case".

One of these, in case you were wondering. About life size.

And then remembered I'd already had one. 

Half an hour later, I started getting tired. This was no good, I had stuff to do. But I knew what was coming. Tiredness first, then dizziness. Then the double vision. For maybe an hour or more.

Episodes like these aren't uncommon in people with epilepsy. Our brains can run out of control, and it takes some pretty strong stuff to keep them in line. (A friend of mine takes the same meds I do, for another condition. She complains of being "whacked out" on 450 mg of the stuff. I take 2700 a day.) Fortunately, I take less medication than I used to, and I had some hints from my old neuro what to do. "Protein," he'd said. "It binds to protein." So I chugged a half-liter of a protein drink I keep around the house, and fifteen minutes later I was, if not OK, then at least good enough to go on with.

Side effects are common with anti-seizure medications, even when you're only taking what's prescribed. Before my meds were reduced, this was a daily occurrence. But if you're on the meds, there are usually tricks you can learn to minimize problems. Check with your neuro; check with your pharmacist. (Pharmacists are a great resource—and you usually see them once a month anyway. You might as well make friends.) And for those of you around us, please try and understand we take some pretty powerful stuff, and it can affect us in lots of ways: tiredness; memory problems; problems with balance, coordination, or eyesight; and other problems too. Just keep in mind, it's part of what we have to do to survive.

---

The Epilepsy Foundation of Western and Central Pennsylvania has a great page listing a lot of common epilepsy drugs and their side effects. And the main site of the Epilepsy Foundation also has a good discussion of side effects in general. I recommend both.