Living with the Vagus Nerve Stimulator—Going on 5 Years

It’s been almost five years since I’ve lived with the Vagus Nerve Stimulator (VNS). I had it implanted in late November 2014 and activated at the beginning of December 2014. See my posts:

https://soosepilepsycorner.blogspot.com/2014/11/the-truth-about-vagus-nerve-stimulator.html

https://soosepilepsycorner.blogspot.com/2014/12/vagus-nerve-stimulator-vns-update.html.

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. 

Epilepsy Blog Relay: More than Seizures

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

When you think about epilepsy, you immediately think of seizures.  How to stop them, how to get rid of them.  That is the ultimate goal.  However, in that quest, there is a long journey ahead, which at times seems like an impossible dream.  If I sound like Don Quixote, the Man of La Mancha, maybe that’s what it feels like—trying to slay dragons that turn out to be windmills. Seizures are one part of the life of a person with epilepsy.  The effects of treatment on quality of life may play an equal part, especially if you are on multiple treatments. 

“I Have Epilepsy and I Define IT.”

I recently read Bryan Farley’s blog post “Defining Epilepsy and Creativity” which was part of November’s Living Well with Epilepsy Blog Relay.

He talked about how people usually say, “I have epilepsy, but it doesn’t define me.”  Of course, we are more than our epilepsy.  This is the message that we want the world to know.  However, he changed this phrase to say, “I have epilepsy and I define IT.”  His rationale is that we as people with epilepsy should acknowledge our epilepsy and the role it takes in our lives.  Then, we can work to advocate for ourselves. 

Medication Side Effects—A Good List

The main way that doctors treat us for our epileptic seizures is with medication.  For the 60 million people worldwide with epilepsy, this is a big deal.  Since only 30% achieve complete seizure-freedom, the rest of us are still looking for the magic formula that will get us to zero.

The purpose of medications is to help us get well.  Medications work in a number of