Tell us a bit about yourself and your epilepsy.
I was diagnosed with epilepsy at the age of 21 after having a brain virus that infected a certain part of my brain. I guess it’s pretty rare. I was studying in England and living with 7 other people, so lord knows there were probably all sorts of germs flying around that flat at the time. I had a really high fever one night and a few days later I had my first seizure while sitting in a library watching a Japanese film, which was easily the scariest moment of my life. The next few days I continued to have them but didn’t know what they were so I didn’t what was happening to me.
What made you try the Vagus Nerve Stimulator to control your seizures?
My doctor and I decided to try the VNS in November 2008, because I had tried every medication and every combination of medications and I was STILL having seizures. It was time to figure out something a bit more permanent or effective. Over the years my seizures changed in nature and the meds that used to work didn’t anymore, and those that were more effective made me feel like a vegetable because I was so sedated. So, I figured “what the hell, why not?”
Did you consider surgery to control your seizures?
We were never able to consider brain surgery. The type of seizure that I have is not concentrated in one lobe of my brain, but all over instead. Therefore, there would be no way that they could do surgery on someone with this type of seizure.
Tell us about your experience with VNS.
My experience with the VNS has been interesting so far. It’s a conversation starter-that’s for sure!! But seriously, it’s hard to tell just how effective it has been. The VNS fires off on it’s own every 5 minutes and I don’t even feel it. I would never even know that some little foreign object the size of a silver dollar is inside me.
How did you make yourself comfortable with VNS?
When I first received my magnet bracelet I ran to a local bead store and made this multi-strand stretchy bracelet for my magnet! Now I have two. One has all sorts of amber, blacks and browns, and the other has all sorts or aquamarine, blues and greens. Really, if you have to wear this bracelet every day of your life….make it beautiful!! I get SO many compliments on my bracelets.
Can you speak about what it feels like to have the implant inside you?
When I wear the bracelet with the magnet and activate the stimulator it can be quite uncomfortable. Your doctor is able to change the levels that the stimulator is at, so when I first began, if I felt an aura I would wave the magnet right under my arm near the stimulator. But it’s hard to tell if in fact it works. Also, once my doctor turned up the power on my stimulator it became slightly painful in my chest and throat when I activated it.
Do the people around you see a difference?
I have to say that those close to me have tried to use the VNS on me when they see me start to slip into a seizure and they claim the seizure lessens in severity and length.
Do you feel like VNS is the best option for you?
I don’t know, I just don’t know. Every once and awhile you’ll have to clear your throat because it gets a bit scratchy from it charging, but honestly, you just get used to it. I feel bad that most of my insight on the VNS may not sound that positive. I would hate to turn anyone against it! i’m not sure if i’m really sold with the VNS and if I’ve found it that effective. But it may be the best solution for someone else.
Meghan, thanks so much for speaking with us. Do you have anything else you would like to say?
I wish anyone luck that is trying the VNS! Also, make sure you keep your doctor up to date with how the charges are feeling and if they are too strong don’t hesitate to take them down. You want to be comfortable. Thank you for inviting me to speak about my experience with VNS.