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.

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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!

Note To Self: You Have Epilepsy

It's not normal for me to change my medication; I haven't for years. But a few weeks ago I had just HAD IT with Trileptal. I told my neuro that I was tired of being tired, tired of the memory problems, tired of the more than occasional dizziness and lightheadedness and double vision. My last neuro had told me, "Well, at least your seizures are under control." Yeah, they were. But at what cost?

Many people with epilepsy are much less lucky than I am. My friends Tori, Daisy, Sam, and Brendan all have seizures that are not well controlled at all, in some cases not even with multiple medications. I'm fortunate to have been pretty well-controlled almost from the beginning. In the twenty-eight years I've had epilepsy, I've changed medications five times. Only once was because the medication didn't work. The other changes were made to try and cope with side effects. Changing medications merely to avoid side effects is a privilege I have that many don't; and I'm very much aware of that.

So my doctor told me about a newer medication, Vimpat, that I'd only have to take twice a day. She also commented that I was taking an awful lot of Trileptal. Like, a LOT lot. I wish she had told me that earlier; I would have changed up the meds long ago. So we made a plan: I'd start taking the Vimpat, beginning gradually as usual with only 50 milligrams twice a day, then increasing weekly to 200 milligrams twice a day by the end of four weeks' time. Once that was well in my system, we would gradually decrease the Trileptal in the hope of weaning me off it altogether.

It almost worked. As I began the Vimpat, my side effects became stronger, appeared more often, and lasted longer. By the end of three weeks, I was showing up to work incapable of doing anything. Time to see the neuro again.

"That shouldn't be happening," she said. Yeah that was kind of what I guessed. "Since you're basically on a therapeutic dose of the Vimpat, go ahead and start decreasing the Trileptal and we'll see what happens."

So we did. From 2700 milligrams (four and a half monstrous horse pills) a day, I cut down to 1500. Then 1200. Then 900. And then, the seizures started happening. After having three partial seizures in the course of a weekend (normally I get that many in nine or ten months), it was back to the doctor once more. She moved me up to the full dosage of Vimpat, and pushed my Trileptal back up from 900 to 1200 milligrams a day.

And that's where I stand now. Since I decreased the Trileptal, I haven't had any side effects. And I'm now noticing the effect that Trileptal had on my thinking; I'm much quicker to understand things, and I forget less. On the high dosage, I guess I was too fuzzy to notice how badly I was thinking, but I'm doing much better now.

Am I happy to still be on the Trileptal? No, not really; after all, that's what was giving me these nasty side effects, and I'm not completely sure I'm done with them. I'm not especially happy to be on two medications, period. It was really convenient having only one kind of pill to take; twice as many medications, in my mind, is twice the chance to forget something. And my "always take it with you" pill box has more to carry.

But I've been reminded of something really important: I have epilepsy. Much as it annoys me, much as I'd rather express my individuality and my difference some other way—pretty much any other way—this is a part of me, and it always will be. It's something I have to face. I'm not always happy about it. But I am what I am, you know? You guys with epilepsy, you're stronger than you know. We all are. We'll do this, together.

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I met Tori, Daisy, Sam, and Brendan on a Facebook epilepsy support/epilepsy blogger group. Daisy, Sam, and Tori have amazing blogs documenting their journeys: Daisy's at My Seizure Journey, Sam's at The Storm Inside My Head, Tori's at Epileptic20Something. Please check their blogs out—all three of them are great writers, and everyone has a different journey and different things to teach us.

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.

Facing Epilepsy: Parents, Doctors, and Caregivers

You might not all know this, but for the past several years I've been working in the healthcare field, in the IT specialty known as medical informatics. About a year and a half ago, I discovered The Health Care Blog, an interesting source of diverse views on health care, health care reform, and the part that IT plays in both.

Fear not though! This will not be a post about health care, or IT. I wanted to share with you one of the first posts I read on the blog: a short story by emergency physician and author Philip Allen Green, titled "Status Epilepticus".

The story made a really deep impression on me when I first read it last year, and I've gone back to it many times since. It really tells the story, I think, of what parents can go through when they have a child with epilepsy, and what a doctor might go through when they're unable to cure, or perhaps even to help, someone with a seizure.

Please read the story. I hope it will give you the same sort of insight it gave me.

To all of my doctors, and to my parents especially: I can't thank you enough for how much you've wanted and tried to help me. I love you all, I really do.