Adding new med and talk about VEEG

[sjconner]

I saw my neuro today. After my seizures in the beginning of October, we upped my lamotrigine to 200mg 2/day. Now, my lamotrigine level, measured at the lowest point in the day, is 10.5 (the upper end of the therapeutic range). I am still having partials. We are adding the generic of zonegran. I know that, statistically, once you have two failed medications the chances of getting seizure control from medication is very slim. I have already tried topiramate = zombie with no seizure control.

He started the conversation about a second opinion and having a VEEG. I live in the middle of nowhere in Montana. He said he would send me to Colorado or Seattle for the VEEG. It would be hugely expensive, travel involved, and the question of whether the insurance will even cover it. Then there is also the complication of doing all of this and not having a seizure. My full-time year round teaching job, husband, and 4 kids make this proposition less than appealing.

Please keep your fingers crossed that we get this under control soon. I know this needs to be fixed/controlled but sometimes I wonder about the need to get my seizures under control. I have had simple partials and complex partials. Last month I had a focal motor seizure. Sigh!!! I am frustrated and tired.

 

[masterjen]

Don't get too caught up in statistics Not every person follows the statistical trend. It might be that your doctor simply has not chosen the best medication for you. If he had, the first medication he chose would be the one that worked. Not to say he is a bad doctor, just that medication selection is so much a guessing game and perhaps he has just guessed wrong so far as to which one would work for you. If it is an extreme hardship to have a vEEG done at this time, let your doctor know and he may be willing to keep working with the many medications and medication combos that are available.

 

[sjconner]

We are going to definitely try more medication options. He was adamant that this process is the worst of the medical guessing games. He was letting me know where we might be headed. If the location of the problem could be located, he mentioned surgery. He told me that, now, "they" like to do the VEEG, etc earlier in the process rather than later.

I have had 2 clean EEGs and one regular and one Epilepsy Protocol MRI. Both MRIs were also clean. I know that doesn't really mean much. Based on the last years events, history, etc he thinks it probably is epilepsy. However, there is no hard evidence only descriptions.

It is so frustrating. At the end of May, I had a seizure (woke up and didn't know anything). I didn't have any seizures until October. In October I had what they are labeling a focal motor seizure (ER visit as it wouldn't stop) and a bunch of simple partials.