Do You Remember...?

I've always had a bad memory, it seems. Always. I could memorize things, no problem—that really helped on tests. But when it came to remembering that I had to take out the trash, or remembering where I'd left my pen? Utter failure. I was famous for it in my family. (I've been known to forget where I left my glasses. This is not unusual, but it once took me about five minutes of searching to realize that I was wearing them.)

That seems to be common among people with epilepsy. The UK group Epilepsy Action reports that memory problems are one of the most common reasons for people with epilepsy to seek help. (They have a great page on the subject. Have a look.) Obviously loss of consciousness during some seizures prevents you from remembering what happened, but epilepsy can also cause interference with the brain's normal memory-forming processes even in between seizures. The same unusual brain activity that can give your neurologist clues about your epilepsy when you have an EEG can interfere with memory as well. Epilepsy can make us tired, or stressed, or depressed. That doesn't help either. And if your seizures start in the temporal lobe of the brain, where your memory lives, obviously that makes things worse.

Sad man can't remember where the temporal lobe is.

Some epilepsy medications can affect your memory too. Of the five times I've changed medications, three were because I felt my memory and my thought processes going fuzzy. That really scares me, because if I don't have my memories or my thinking, what's left of me? So I fight back by switching medications.

Given that a lot of us can't do much to prevent it, how do we cope? For me, I usually forget things like "Where did I leave this?" and "What did I come here to do?" and "What errands do I have to do?" So one thing that helps me a lot is using sticky notes. Writing stuff down and leaving it every imaginable place really boosts my ability to remember.

Well, maybe not every imaginable place.

If I put something down, I also try and pause for a few seconds and say to myself, "I left my phone on the table. I left my phone on the table." Or if I go into the kitchen to get my wife a drink, I'll tell her, "I'm getting you a drink." Repeating things like that can fix them in my mind better. It doesn't completely fix things, but it does help.

For anyone who's close to someone with epilepsy, please do keep this in mind. We do listen. We try our best. But sometimes, information just leaks out. Please be patient with us. Cut us a little slack when we lose track of things. Maybe you can help us with the memory aids.

And thanks for staying by us. That's what we need most of all.

Pachygyria, Heterotopia, And Other Weirdness

Do you guys know what the brain looks like?

Not this one. Although I do ask, "Gee, Brain, what do you want to do tonight?"

 It looks like a big wrinkled blob of meat:

 

Yeah, kinda gross.

Still, everything has its place and function, and the brain is really really cool when it works right. Which, of course, means that when it doesn't, things can go really wrong. Including having seizures.

If you look at the sliced-up part of the brain there, you'll see that the brain has two kinds of tissue: the inside is called the white matter and the part around the edges is called gray matter (even though it looks pink to me; maybe someone was colorblind?) The bumpy parts on the outside are called gyri and the cracks in between are called sulci. Oh, and the two halves of the brain you can see? They're connected in a few places, the most important being the corpus callosum, near the bottom of the brain right in the middle.

I couldn't find an actual picture, but this is what it looks like on an MRI.

Bear with me guys; I know you probably weren't expecting an anatomy lesson but I promise this is relevant.

The brain gets sorted into gray matter outside and white matter inside during about the fourth month of pregnancy, and the gyri and sulci develop from about the fourth to sixth month. The corpus callosum starts developing about the fifth or sixth month and continues at least through birth.

Unless of course you're me. Then things go every which way.

For nearly twenty-five years, nobody could understand why I was having seizures. Then my neurologist finally (FINALLY) said, "Let's have a high resolution MRI and see if we can figure it out."

They stuff you in this for 45 minutes. It makes a ton of noise
and magically sees inside your skull.

When the report came back, I read it before the doctor did (I worked in the radiology clinic, so I could do that :-) ) There were all kinds of words I didn't know: pachygyria, dysgenesis, heterotopia. I was a bit scared.

Basically here's what happened: Before I was born, when my brain was developing, that gray matter didn't make it all the way out to the outside of my brain where it belongs. I have big lumps of gray matter on the inside - gray matter heterotopia. Because all that gray matter is on the inside, the stuff on the outside is thinner than it's supposed to be, and my gyri are spread out wider than they should be and the sulci are shallower - that's pachygyria. Finally, it looks like my corpus callosum did not develop correctly. Go back up and look at the picture. See the bulb at the back and the hook at the front? Not there on mine.

Now most people with these conditions, as severe as mine are, have seizures early in life: as early as age 3, and almost certainly by 9 years old. My seizures didn't start until I was 20. I'm lucky there. And very lucky indeed that I didn't experience the intellectual deficits and learning disabilities people with these conditions nearly always do. My neurologist, when he saw the report from the MRI, said, "Go home and thank your parents for your good genes!" The neuroradiologist looked at the pictures, then looked at me, and said "Are you sure this is you?"

So there are a lot of worse things that could have happened to me, and I am thankful every day that they didn't. I did thank my parents for what they had passed down to me, and I have a lot more respect than I did for my brain, which somehow finds a way to function well above normal when by all rights it shouldn't even be able to get to "normal". I feel better about myself, and about my epilepsy, than I did before I knew what was going on.

About 2 out of 3 epilepsy patients, though, don't know why they have epilepsy, and never will. For you guys, I look with awe at your bravery. I really do. And so should everyone. Something terrible has happened to you, for no apparent reason, with no apparent cure, and yet you find a way to slog along through life; even to be happy and smile. You're amazing, you know? Don't forget that.

And you guys without epilepsy? You're great too. But pay attention to those around you. They may be going through more than you know.

---

I want to call out my friend Daisy Robson, a fellow epilepsy blogger. She's recently been in the ICU and is still recovering from having a hideous lot of seizures. She and her mom, in particular, have really gone through hell in the last week. If you could just keep them in mind; pray for them if you pray. They could use it. Thanks!

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.

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.

A Brief Vocabulary Lesson

Don't worry, I'll keep it short.

There are a bunch of different kinds of epilepsy, and a bunch of different kinds of seizures. The one most people think of, where you fall down and go into convulsions? Yeah, 40% of people with epilepsy (aka a seizure disorder) don't experience that at all. A bystander might not even be able to tell that someone is having a seizure.

So what kind of seizures do I have? As you might guess from my "Being Alone" post, I do have that big, scary kind of seizure—and it is scary. Historically, this has been called a grand mal seizure (it's French for "big illness"). That doesn't really describe a lot about it, though, so in modern terminology people call it a generalized tonic-clonic seizure. "Generalized" just means it involves the whole brain, and "tonic" and "clonic" (which has the same "o" sound as in "clone") describe the tightening and jerking muscle movements of a convulsion.

But wait, that's not all!

They don't all look like this.

There are also partial seizures, which involve only part of the brain (duh). These can be simple partial seizures, where you're completely conscious and aware of what's going on, or complex partial seizures, where consciousness is "impaired" (which is a polite way of saying that something is happening to you and you're not even aware of it). I'd be totally spooked if that happened to me.

My particular kind of seizures are called partial-onset seizures. So what happens is I start by having a simple partial seizure, with the uncontrollable left-hand and left-arm twitching I mentioned in my very first post. There's also a truly miserable feeling I've never been able to quite describe; it's kind of a mixture of falling, paralysis, dizziness, and lightheadedness. If that seizure lasts long enough, then I will have a generalized seizure on top of that, as the crazy activity on the right-hand side of my brain spreads throughout the whole brain.

There are a lot more different kinds of seizures as well—absence seizures, myoclonic seizures,  atonic seizures (aka drop attacks), and more. I may go into that later, but for now I wanted to give you guys the tools to describe what's happening to me. And a lot of other people as well. Having the right words for something is always the first step on the way to being able to work with it; so now you know!

Facing Epilepsy: In the Beginning

A Saturday, I think, at the end of March 1988. I was a junior in college, at a movie with my girlfriend when we noticed my left arm twitching every few seconds. I was concerned, but when it stopped after a few minutes I just made a note to go to the Student Health Center the next day. We went home, and I fell asleep.

The next thing I remember was my girlfriend putting my coat on. Tying my shoes. Crying. Leading me to a waiting university security squad car. After a few minutes, we were here:

University of Chicago Medical Center

For those of you without epilepsy, I'm not sure you can imagine what it's like to have your body start doing things without your realizing, or wanting it to. To feel like you might be about to totally lose control, at any moment and without warning. And losing consciousness? I'm never quite sure, when things go dark, that they'll come back again. Scary stuff.

Probably the worst thing for me, at the beginning, was not knowing why. They did a CT, and an MRI (which was new back then; they were still "NMRs"). They did a spinal tap. But no definite results, at least not that they told me. I'm sure that was frustrating to my parents. Me? I was just terrified, at least when I wasn't feeling woozy from whatever anti-seizure drugs I was on.

I got better, as they say. No, the seizures haven't stopped. But they've stopped scaring me as much. (I guess practice makes perfect? I've had a fair number by now.) And I know more than I did back then. If knowledge is power, welcome to the epilepsy power zone.

Welcome to me, facing epilepsy.

I want this blog to be a resource for everyone: a source of strength and friendship for those with epilepsy, of support for family and caregivers, of knowledge for everyone. Through my experiences i hope we can see that no one is alone in their struggle with epilepsy, and that everyone has the power to help