I just wanted to write a post and give everyone an update on my seizures. A lot of my friends, family and co-workers don’t really know the full story about what’s really going on. Most of them think I had one Grand Mal Seizure and now I’m ok. In reality, I’ve been struggling everyday since then.
Since September 2011, I have tried 7 different medications to try and control my seizures. My Tegretol controls my brain from have more Grand Mal seizures, but we still cannot get the partials under control. Nearly every night for the past month or more, I have been having nocturnal seizures. Recently, I haven’t been having as many during the daytime, until yesterday I had 3. It has a lot to do with being stressed out about many things.
Two weeks ago, I went to the Norton Brownsboro Epilepsy Monitoring Unit to try and capture these seizures in my sleep. This is the second time we have tried to capture a seizure; the first time being unsuccessful. We were successful this time and saw exactly where they were coming from. During the stay you have 34 electrodes hooked up to your brain and about 7 more to your chest and stomach. I also got an MRI which came back normal and we talked to my doctor about our future plans.
My doctor gave us three options. The first was to try more medication. Every time I try to take an add on medicine with my Tegretol, I start getting blurry and double vision. It keeps me from doing anything for about 4 hours. The second option is an implant called a VNS. It’s a small battery powered box much like a pacemaker that they impant in your upper left chest and attach it to the nerve in your neck. The other option is to have brain surgery and remove the portion of my brain that’s causing the seizures.
So if you can imagine, going through seizures and fighting them daily, it gets very frustrating. But you have to keep going and take it one day at a time.
As far as which route I’m going to take…I’m really not sure yet, but I need to decide something soon because it’s not getting any better.
Update 8/8/12: I have been taking Klonopin for awhile now as needed but we’re going to test it regularly at bedtime to see of it helps.