In case I forget.

The “S” Word
January 28, 2007, 7:45 pm
Filed under: Brain Bits, Counselor A, Dr. Neuro B, Fear, RX, Seizure

On the Counselor A front: She is saying thing like “PTSD”, Grief, Wheelchair. I am starting to look for a job but I’m very afraid because even if I can hide the burping through the hiring process, what happens when I have a 90% day? At my prior job is wasn’t such a big deal because they knew me and went through the process with me, the watched me through the gastro studies, through the brain scans. They saw me the day I was told I am having seizures. They watched me loose bits of myself on Keppra and Trileptal.  But a new job? The first day I can’t control the burping what do I say? Oh don’t worry I’m just having hundreds of epileptic seizures. No problem. Yeah that will go over great. I have some leads at good non-profits but I’m just dreading the whole process. Maybe I should have paid more attention to my mother’s advice. Marry a rich man.

On the Dr. Neuro B front: I saw him last week. The Husband couldn’t go with me and that was pretty stressful. I had a list of questions written down and I went through it with him. We talked about the burping – it has reduced in intensity but only a little in frequency. He continued with his previous plan of increasing the dosage but he ramped it up. From 400mg to 500mg. For only three weeks instead of three months. Then up to 600mg. Come back in three months. Then if no resolution keep pushing it some more. Before he had said that 1000mg is about the upper limit. He asked if I’ve had any side effects and I said no. He asked again (apparently he was surprised by that or just REALLY double checking) and again I said no so up we go on the dosage.

I told him that both my Dr. PCP and my Counselor A both think I am experiencing this thing which I can annoyingly not pronounce, Dysthymia. They’ve both suggested an anti-depression med. Wellbutrin. So I asked Dr. Neuro A and both he and the resident in the room just cracked up. Seriously.  No, No, No they said. They asked me if I knew why? I said….side effects? In unison they said No. Seizures! Apparently Wellutrin can cause people with epilepsy to have more seizures and worse seizures. He suggested Cymbalta. He said it is the SSNI that works best with people who have epilepsy. Then he said that depression is  very common with epilepsy – approximately 30%.

Then the scary part happened. He went back to talking about the dosage escalation. He said that since I had failed (why do they call it that – makes it sound like I did something wrong) on a few different anti-seizures drugs that he would push the dosage up for a while longer and if it isn’t getting me to 100% no seizures I will have to “be hospitalized”. I said, whatever for? He said for a video EEG. I’ve heard of that so it’s not so scary. He said depending upon what he can learn from that he will begin talking about surgery. I made it clear that I have a negative opinion about brain surgery. He said another possibility is a Vagus Nerve Stimulator.  This doesn’t scare me as much as brain surgery but it still doesn’t thrill me. I’ve read a bit about them and understand that they can have permanent impact on various nerves that run down through your neck, and some other not pleasant problems. I think I might prefer to just take more and more and more drugs than have anybody cut me open for any reason. But I know that’s not realistic. I remind myself that my Dad had brain surgery (to remove cancer) and that it was truly no big deal. He had some short term memory impact but hell, I already have that. Still, it’s my brain.

I asked him where the anomoly he saw on the epilepsy protocol mri is. He pointed to a place on his head a little bit behind his left ear and about 10:30 looking from behind. I asked how deep and he said “pretty deep” but he also held his fingers together and said it’s really really small, about 1/4 inch big. So trying not to freak out. Deep brain surgery. C’mon Lamictal. Work for me.


2 Comments so far
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I found your blog via a Google search of “Keppra crazy,” which I had done to find out if anyone else has experienced the abject terror I’ve been feeling the past month. I’ve read all of your posts under “Fear,” among others. The circumstances that led me to the search are nowhere near as daunting as yours, so on a deep level I feel almost presumptuous making a comment. But I can’t resist. Thank you for your blog. Thank you for your fearless accounting of your experiences and of the fear you’ve been living with. Thank you for the eloquence with which you do so. Thank you for articulating so well the frustration of having a brain “thing” that is not easily fixed, the fear that comes with it and how amazingly wonderful some of the people we go to for help can be and how stunningly dismal others can be (e.g., Neuro A’s asking why you were distressed?). I too, wonder what my husband must think when he’s faced with a shrieking, terrified harpy who moved into the body of the person he was attracted to because of her smile and vibrancy. Just so you know, the auburn-haired, sailing, brainy woman you might think has gone away shines through in your words. She’s there. It shows. I suspect the fog just has to clear somehow for it to be clearer to you. I hope it helps you to know that you have helped someone (me, and no doubt many others) with your blog and that this one will be rooting for you and praying for you as we navigate the uncharted waters back to ourselves. So please hang in there until you find your way home. I think I could say this better, but I just am not as articulate as I’m used to these days . . . but I’m sure you get the point. Again, thank you. And most of all, good luck. Be well.

Comment by Sophie's Person

Sophie thank YOU for such kind and heartfelt words. I am amazed that so many people identify with what I have chronicled here. I started this blog literally so that “In case I forget” I could look back on this trip I am taking through the unwanted and horrifying world of surviving a brain injury, but I never thought that other people would come here and see something of themselves. I happen to think you’re pretty darned eloquent also by the way. And I don’t believe in the “my pain is worse than yours” thought process. I doubt that my loss is any more daunting than yours. Anyone whose brain is suddenly not the way it was before should know that their fear and need for hope is as valid as everyone else’s. Thank you so very much for writing! I would like to learn more about your situation so please feel free to comment or email if you would like.

Comment by In Case

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