Update

It’s been awhile since I’ve written.

Much has happened during this time.  Report—the Epilepsy Support Network of Orange County reached its goal of $140,000, from its Epilepsy Walk.  This does not count the totals from the Silent Auction and Carnival, which are still being counted.  I am proud to say that I raised $1,075 and my team raised $1,445, the most I have ever done before. This means we will be able to continue providing educational and support services to the families living with epilepsy in southern California.  We will also provide outreach to the larger community to raise awareness about and promote research for epilepsy. 

I am trying something new in my treatment regimen.  If you have been following my blog, you will know that I have a VNS (vagus nerve stimulator) implanted.  I have had trouble adjusting to the settings.  I am unable to tolerate higher settings, so right now I am at the lowest one.  It goes of every 3 minutes for 30 seconds.  Everyone is different, but the standard is every 5 minutes for 30 seconds.

I recently started a new medication—Fycompa (generic--perampanel). It is used for treating partial seizures.   I never heard of it before my doctor mentioned it.  The drug must be very powerful because the milligrams you start out with are 2, then 4, 6, 8, and 12.  One serious side effect my doctor warned me about and that is written in bold letters on the medication information sheet is that Fycompa can cause aggressive and/or suicidal/homicidal behavior.  Other side effects are similar to those of antiepileptic drugs in general.  These include blurred vision, dizziness, sleepiness, difficulty walking/balancing.  I have experienced all of these.  Lethargy has been a problem lately.  At present, it is difficult to know if the Fycompa is making a real difference yet.  I will have to wait a bit longer to see how it works (or doesn’t work) out. 

If anyone has experience with Fycompa (or anything else), feel free to comment.

Thanks!