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!

Epilepsy And Discrimination

Have you ever had someone keep you from something you knew you could do, for no reason you could see?

People with epilepsy are often in this situation. Usually we are perfectly fine to do anything needed for an office position; we're not likely to have medical emergencies; and potential employers are required in the US, UK, and Canada to make reasonable accommodations to allow us to work.

In the US, the law covering this is the Americans with Disabilities Act. In the UK, it's the Disability Discrimination Act 1995 (in Northern Ireland) and the Equality Act 2010 (everywhere else). In Canada, each province has its own laws, as well as the federal government. Which law applies depends on whether the federal government has oversight of your industry or not.

And yet. In one of my first successful job interviews, I might have just narrowly missed experiencing just this kind of discrimination. I felt uncomfortable mentioning my epilepsy; I was afraid of what a potential boss might say or think. After I'd been told I got the job, I took a deep breath. "There's something you ought to know..."

Once I got the story out, my boss gave me a look. "I wish you had told me before I hired you." What was that supposed to mean? Would I have been hired if Mary had known about it? What kinds of issues did she have with my condition? I didn't have the boldness to ask her. Perhaps I should have; but at 25 years old, having just got my first real job, I didn't want to risk it.

I'm sure I'm not the only one in the same situation. Recently, Amtrak settled a lawsuit with a job applicant who had been turned down because of his epilepsy, even though he had been cleared for work by his neurologist.

Others, like Karen Martin, have felt the need to hide their epilepsy, and have suffered discrimination once their condition is made known to their employer or co-workers.

Why does this happen?

Partly, at least, it seems to be that most people don't know a lot about epilepsy, and don't know what to do for people with epilepsy. A survey done in 2013 for  the UK's Epilepsy Society revealed that nearly 60% of adults in the UK don't feel they understand epilepsy and its effects. I can't find similar results for North America, but I wouldn't be at all surprised if the numbers are similar.

The great thing about this problem is that it's something we can handle. If the problem is mainly one of awareness, who better to spread awareness than the patients themselves? But we have to own it; we can't be afraid of our own epilepsy.

It took me almost 25 years to come to that conclusion—I'll tell you the story about that next time :-) But it's OK to have epilepsy; it really is. And the more we talk about it, the more people know and the more comfortable they'll be.

Own your epilepsy, guys. It's the best thing we can do for everyone.

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.

What If Somebody's Watching? What If Nobody's Watching?

There are two seizures I remember having in my first year away from home: one partial, one generalized. (Here's a quick explanation of what that means.) Both were scary, for opposite reasons; both depressing.

I don't remember any more which one came first. Probably the bigger one. It was first semester parent-teacher conference-time, mid-October. I had a whole series of appointments during weekday evenings, and I was ready to spend 30 minutes with each of the parents, talking about how their kids were doing. Did the parents know I had epilepsy? You know, I don't even remember now. My boss knew—though that's another story. So I'm not sure whether the mom and dad I was with actually knew what was going on or not. I don't remember their names any more, but I know they were nice people. Friendly, and their son (I remember it was their son I was evaluating) was doing well.

We had just started talking when all of a sudden I couldn't any more. I knew what was coming, but I couldn't do anything about it. Couldn't say anything. I felt myself slipping out of the chair, under the table; I felt my left arm jerking. And that was all.

I don't really remember afterwards. I think some of the other parish staff were there, making sure I could get up, getting me home. All I could think about was how embarrassed I was, how I had been so weak in front of the parents, how I had experienced something I never wanted to experience again in front of the people I least wanted to appear vulnerable near.

The other seizure was a partial seizure. This must have happened later, actually; after I had that seizure I couldn't drive for a year. So I was walking home from Fred Meyer with a bag of groceries when all of a sudden I got That Feeling. I stopped. A quarter mile from home. Nobody to call. Was I going to go full-on generalized seizure on the sidewalk there? Hit my head against the concrete. Roll down the slope into the chain link fence? Or maybe out into the road, into traffic. DAMN was I scared. I knew if I was going to generalize I probably had five minutes to get home; of course, home was probably 8 minutes away. I did my best, pushing myself along as fast as I thought I could trust my legs to go.

Finally I got home and popped a double dose of my Depakote. I had another partial seizure a minute or two later, not as bad. And that was it; the medication helped my brain stay in control over its rogue neurons.

Sometimes I feel my life revolves around pills

Both of these were really scary. With the first, I was scared of having people around, because they might misunderstand. They might look down on me. They could, I don't know, think I was as broken and malformed as I thought I was. But then again. A seizure, even the partial one, with no one around removed any possibility that anybody might be able to understand, or help, or sympathize. I didn't know which was worse.

I don't see myself, anymore, as broken and malformed. I don't feel so embarrassed and upset at the possibility of having a seizure in public. I want people to know, to be able to care; because when it comes down to it, I need people.

None of us, and certainly none of us with epilepsy, can get through this life alone. But with understanding, we can support each other. We all have a part to play in owning epilepsy.

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!

Printable - What To Do For Tonic-Clonic Seizures

This is just a really quick, rough guide for what to do if you're around someone who has a tonic-clonic seizure. Print it out; share it around; put it up wherever you can. There are lots of others like this floating around the web; this gives enough to keep you and someone else safe and confident.