In case I forget.

Feeling rebelious
November 26, 2006, 11:40 pm
Filed under: Dr. Neuro B, Fear, Mental Health, RX, Seizure

I have this horrible urge to be a non-compliant patient. It is totally foreign to me. If I go to a doctor it is because there is something wrong. I’ve been pretty lucky (Except for Dr. Neuro A) with doctors. I’ve heard horror stories. But my Dr. PCP is awesome, and I have real faith in my Dr. Neuro B. Hell I think I’ve even found a counselor who isn’t rude, obtuse, ineffective, or just plain abusive. (Crossing my fingers on that.)

But. A couple of weeks ago The Husband accompanied me to my first follow-up with Dr. Neuro B. The burping is bad. I had some real improvement back when I was at about 175mg a day but I was still in the 10-15% range. As I increased to the original target dosage of 300mg, it slowly got worse. At the follow-up, Dr. Neuro B told me to up it to 400mg and come back in 6 weeks. I asked him – how long will we do this? He said, “Until you are symptom free or until it makes you sick.” Now, these days, I’d be happy at 10-15%. Honestly. I’m back to 85-90% a day, which in my mind says the Lamictal isn’t working at all. This is where I was before when the Lamictal quit working. This is where I started out at, almost a year ago now. This IS NOT WORKING.

And Dr. Neuro B says 10-15% isn’t good enough. He says that until I am 100% seizure free that I am not in good shape. He said “You’ve never had a complex seizure until you’ve had one.” I know that is true, but I also know this drug IS NOT WORKING.

So I am tempted. I want to drop back down to 175mg. It is the level where I got the best results before, and it is the level where I got the best results this time. But I’m a very compliant patient. I work on the theory that if I’m not going to do what a doctor tells me to do, why the hell should I bother to go? So I’ll wait until the first week of January. I’ll keep swallowing these pills. But I have no hope. And that’s a pretty sad way to be. I don’t think anything will ever work. I think these seizures will continue, I think I will continue to have trouble getting a breath. I think I will either one day not be able to get air in at all and smother to death, or that the seizures will get worse and I won’t be able to drive or function. I could see myself becoming one of those statistics – one of those Epileptics who can’t take it anymore and decides to make sure it quits happening.

I’m not trying to be over dramatic. I’m not threatening anything. But I can sympathize with the folks who have taken that route. And I can see how there might be a point in my future when I come to be that desperate. I really don’t think there’s anything else that will work.


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