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.