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Friday, October 3, 2008

Epilepsy and me....


Well, I've yet to go into much detail about how we're trying to manage my condition medically. I've purposely drug my feet and truly considered not sharing much more than I alluded to in my profile. I mean this was supposed to be a photoblog, right? I knew God had other plans for it. :)

I realized that in order to track my progress with Project Rewire -- for the purposes of this blog -- it's essential that I share more about me and the "E" word. I want to be able to look back to see how far I've come. Which, regretfully, means I must also share some negatives. Although, take note, I won't be giving into doubt or losing faith. I want to show that God is working inside of me, and along my path. That He has been directing my path all along. That He began Project Rewire long before I started this blog. As I share, you'll see what I mean. ;)

To be honest, since Epilepsy became part of my life in January of 2006, it's been quite an on-going, very frustrating and exasperating battle. I won't lie and say it still isn't. But, early this year the Lord led me to self-refer myself to the Comprehensive Epilepsy Center at Wake Forest University Baptist Hospital. Their goal is to find a way to make their patients seizure free. Whether it's through medication or surgery. It's their primary focus. And, they're excellent at it, too. I'm beyond blessed to have such a facility in my state, much less, under a two hour drive from my home.

For the sake of making things make sense, I'm going to start off with where I'm at right this very moment, then shoot back to the beginning. Not to worry... I have no plans to knock it out in one post, lest I overdose myself on me and anyone reading. Plus, as I'm gathering my thoughts for this post, I believe this will become a good "label" line to track my progress.

Okay, on to the "now"...

We made the trek to Winston-Salem to meet with my doctor this Wednesday. He's an Epileptologist (a neurologist with at least two extra years of specialized training in Epilepsy) and he's the director of the Epilepsy Center at WFUBH. He's something else and I mean that in a good way! (
I'll get into my initial visit with him and about a week I spent in the hospital for 24/7 video Electroencephalogram (EEG) monitoring down the road.) What I will say is that there's no doubt in my mind that God created him to become a doctor and to choose a field where there are so many gray areas -- so many unique crazy symptoms. I first saw him in March of this year and still couldn't be more impressed. Each time I've visited him, he fully focuses on me. He listens to me and makes me listen up! He asks me pertinent questions. He always spends at least 45 minutes with me -- uninteruppted. And, he understands two vitally important things about me. That I can be both hypersensitive and idiosyncratic with medications. Unfortunately, that's a problem that runs with the females in my family. It's something most doctors either don't get, want to ignore. Or, flat out, blow off.

For the past almost two months I've been on a very difficult to take medication called Carbatrol. The side effects are many. Some very serious. It's not a clean medication, meaning blood tests are required to test levels because it dumps into the liver. I've given it my best shot, but it's not the medication for me. Even though I did discern momentary improvements here and there in the sensations I experience 24/7 and random pain. It's not worth it. And, my doctor agreed that we need much more than that to keep me on such a med. So, I'm transitioning off of Carbatrol on to another med called Keppra. Keppra is a clean med, in that it is washed out of the body via the kidneys. As for side-effects, they're minimal in comparison to Carbatrol and many of the other AEDs (Anti Epileptic Drugs) available. It has a good track record in treating people with Focal and Complex Partial Seizures. Needless to say, I'm hoping and praying it's my miracle drug! At this point, I've been on several. None of which have been the answer. As usual though, with all anti-seizure medications you can't just stop one to start another. There's a tapering off phase one must go through. I already began with the Keppra Wednesday evening, but must continue to take an evening dose of Carbatrol through Sunday. The step down... tapering off process is... yucky! yucky! yucky! The two together make me feel, well, awful. Make that awfully awful. Particularly so in the evening. In fact, I've not done much of anything since we got home on Wednesday. But, I believe once Monday roles around, I'll be down to one "yucky!"... and fast on my way to none. Also, Keppra is a medication that doesn't need to "build up" in one's system before positive effects are felt. So again, I'm hoping and praying I'll feel some improvement once the Carbatrol is totally out of my system. I like the extra bonus fact that I'll know soon, too.

I'm close to odeeing on myself now... so it's time to close and start thinking about what I'll post next. There's much I've wanted to share... more pics from my PA trip, more on Sydney... and the ESRA... Oh! We're planning on flying tomorrow. Yay! It feels as if it's been forever. No matter how I feel, I wouldn't pass up the chance for anything. Let me tell you... the winds are looking NICE. So, maybe we'll go in the a.m. and in the p.m. -- we shall see!


P.S. Thanks to an ESRA buddy, Charlie's dad, for the photo crop.

1 comment:

Gigi said...

Praise God for wonderful, caring, compassionate doctors! I look forward to reading more about your journey Jeanne! I'm glad you have such a good program within reach...