Testing Testing Part 1 - EEGs

As I write this first sentence, I'm in the neuro office waiting for my first EEG since changing my meds. For those of you who don't have experience with an EEG, it's basically an electronic recording of your brain activity. A technician pastes 16, or 24, or more wires onto your scalp and hooks you up to a machine that listens for electricity coming into them from your brain. It can be as short as 20 minutes, or as long as 3 days or more. Mine is going to be an hour. 

(Note: For staffing reasons beyond my control, the exam was in fact a "routine" 30-minute EEG.)

The machine looks a bit like an octopus, with all those wires. I unfortunately didn't get a picture of me with the wires on, but I've always thought the EEG machine itself looked cool.

The Machine. Probably without Florence.

Most of the time, you're sitting (in my case, lying) down with your eyes closed. The doctor wants to get a good picture of your resting brain. I always fall asleep. They do need to try a couple of stimulus situations, though. About 1 out of every 30 people with epilepsy (about 3%) are sensitive to bright or flashing lights. So the EEG tech will set up a strobe light right over your face and strobe the light right into your eyes, to see if anything happens. You do get to close your eyes, but the light is only about eight inches from your face so it doesn't seem to make much difference. Then, they'll have you hyperventilate for two minutes. This makes me dizzy and dries out my throat, but doesn't seem to do anything else. Some people have seizures while they're having an EEG. This is very useful to the doctor, I guess; not so much fun to the patient.

My particular EEGs are pretty boring, mostly. Once a year or so, I go into a room, get my scalp measured and marked off with a pencil (which is painful—your scalp wasn't really meant as drawing paper), get wires pasted onto my scalp, lie down on a hospital bed, and then mostly close my eyes and lie there listening to the tech click away with keyboard and mouse. It's a good thing they want you to fall asleep. But they're the best quick view my neuro has into what's going on with my brain, so I deal with it.

Besides, who would miss a chance to get off work to take a nap?

The Epilepsy Foundation of America has (as usual) a really good quickie discussion of an EEG with more information available.

What Happens When Medication Doesn't Work?

So I told you about one of the first seizures I had alone. But I didn't give you the whole story.

About a year after I was first diagnosed with epilepsy, I switched medications and began taking Depakote, a drug with quite a few potential side effects—as always—but quite good seizure control. I was happy; my doctors were happy; life was good. Good enough that I was comfortable moving 2000 miles away to a new job.

After my job interview, work went quite well: I virtually forgot, and so did everyone else, that I had seizures or anything at all. I took my pill in the morning, and then I took my pill again at night, and I just went on with my life. That's how it's supposed to be, right?

And so life went on; I got through (as I remember) most of my first year just fine. Parent-teacher conferences went fine; my trip back home over Christmas went fine; and I was looking forward to finishing the school year.


Life went on nicely, then, until I had that nasty seizure I told you about. I immediately (well, as soon as I could think again) made an appointment with my neurologist. After all, if you're taking a drug, it's because it works, and you expect it to keep working.

A good medication is one that works, after all.

I didn't know why it wasn't, and it scared me. Was I going to have another seizure again? When? Where?  At work? Walking home from the grocery store? Falling down stairs?

Well, the doctor explained to me, in some cases the drug doesn't keep working the way it began. If your body develops tolerance, and gets used to the medication, the drug can just stop having any effect.

Drug tolerance just means that your body gets more used to a drug. With Depakote, one of the ways this can happen is that your brain can start getting overwhelmed with how much it's receiving, and actively push the drug away from where it most needs to be. This doesn't appear to happen very often, and if the drug is initially successful, it almost always continues to be.


But not in my case. My body was reacting just as if I hadn't taken anything in days. The neuro increased my dosage from 1200 mg a day to 1800, and I was fine—for another month, at least. Then another seizure, and another medication bump: to 2400 mg. This time the neuro looked concerned. I was already concerned.

One of the cautions with Depakote is that it can be toxic to your liver. At 2400 mg a day, my doctor explained, I was pushing up to a point where it wouldn't be safe for me to take much more.  "I think we need to try something else," he said.

Well, OK. But what are the guarantees that something else would work? Would I have to change again? Would I develop tolerance out of nowhere again and have unexpected seizures? All sorts of questions popped up. But anything was better than seizures at that point; what other option did I have?

So I moved on to Tegretol, which worked quite well for me for a long time, and that was that. I've never developed tolerance to anything else; but I've always been on the lookout.

I guess that's the lesson. I'm very aware of what I'm taking, and I've never again been complacent and willing to trust that a medication will "just work". At the same time, I'm happy that there are a lot of options, and I realize that what happened to me was very rare and probably just a fluke. If you take medication for any condition, check it. Know your side effects; know your alternatives. And if anything weird or unexpected happens, tell your doctors. They should be able and willing to help you to something better.

Knowing your meds is part of owning your epilepsy. You can do this!

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.

Looking For A Neurologist: What We Need From Our Doctors

"Hi! Glad to meet you! I'm Doctor Smith."

I was in the office of my latest neurologist. I've done a fair bit of moving in the last thirty years, and the very first thing I have to do when I move anywhere is set up my doctors. I have to have my medications, and so I need a local prescriber. Neurologists aren't common in all areas of the country (I haven't always lived near a big city), and it usually takes a while before you can get an appointment. Finding a neuro has usually been the second thing I do when I move anywhere, right after finding an apartment.

So there I was in Doctor Smith's office in northern Michigan. He certainly seemed interested, attentive, competent; everything I wanted my specialist to be. But I had seen three or four neurologists in the previous six years. I was used to them being good at what they did. At that moment, I just wanted to get my prescriptions and get out feeling reassured that somebody knew who I was, what was going on with me, and what should be done if there were a problem. There wasn't anyone else who fit that description for six hundred odd miles.

Home was here.

Family was way down here.

A brief introduction, then "I have epilepsy. It was diagnosed six years ago at the University of Chicago. I've been having a few seizures a year, on average."

"Oh? Well, let's see." So, he's going to see whether I have epilepsy? This should be interesting. The standard approach to deciding whether someone has epilepsy, short of documenting multiple seizures, is detecting "epileptiform activity" on an EEG.

This stuff.

But most individual-practice neurologists don't have an EEG in their office; they outsource it to a lab. Doctor Smith started in on what I'd come to think of as "the usual routine".

"Stand up. Close your eyes. Put your arms out in front of you. Touch your nose with your left hand. Now your right hand." And on. And On. And ON. Finally after an hour (an HOUR!!!):

"Well, I think we can say that you have epilepsy."

Oh really, Doctor? It took sixty minutes of testing, using a test that can't actually tell whether there's seizure activity in my brain, for you to agree with something that I already told you an hour ago?

Look, neurologists are good people. They're really important to us. I mean Really Important. Some of them are even epileptologists, specialists in epilepsy. (If you come across one of these guys, don't give them up. They're ACE.) But calling all neuros: I'm an adult. I know what's going on with my body. Can we at least start with the assumption that I know I have epilepsy? Don't look down on me. Work with me. I can help you help me. That'll do both of us good.

And that goes for all you guys too. I love you!