Things are changing

By the numbers, last week was a good one. He had 300 seizures from Sunday to Saturday. That was his best week since early February. As always, there is another side to the story, though. John has started having some longer seizures, where he actually shakes for a few seconds and does not breathe. We haven't seen that before, and it is downright scary. It scares him too. Also, over the last few weeks he has started to open his mouth wide repeatedly, usually just before having a seizure. I think this is an involuntary action, and could be a new partial seizure type. These negatives are almost certainly caused by his increased Lamictal dose (he's now on 100mg/day), though it's possible it could be related to the VNS as well. I really don't know if this is an improvement or worsening of his seizures.
John seems to have longer periods of real clarity now, which is great to see. I think something is working to clear up some of his background seizure activity, at least some of the time.

John's VNS is still set to go on 21 seconds, off 30 seconds. This means that it is on 41% of the time. Cyberonics says you should not have it on more than 40% of the time, as it has shown to cause nerve damage in animals at that level. This makes me nervous, and I think I'm going to ask to have it changed back to a more normal cycle on our next visit.

We have one more increase in the Lamictal next week before we make any decisions on what to change. If the Lamictal doesn't show some dramatic improvement soon, I am going to push for getting rid of it. I want to know if these new seizure types are related to the Lamictal. And, I have a feeling that the decrease in seizure numbers may be due to the VNS, and not the Lamictal at all.

Today, John had 32 seizure clusters, and 32 seizures, meaning he didn't have a single cluster of more than 1 seizure. I'm going to have to quit calling these "clusters". He only napped for about 10 minutes today, so those are some really good numbers. And, he was in a really great mood for many hours today. However, he also had 3 or 4 very large seizures today.