Wednesday, October 19, 2016

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!

Wednesday, October 12, 2016

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.

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.