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.

Immediately, I had a bad reaction to it. My recovery from the surgery was very painful—I was coughing, and my throat hurt and swelled.  At the beginning, it was so severe that I couldn’t sleep. I had to ask my doctor to adjust the setting to the lowest possible one, and even that affected me a lot. However, the swelling eventually died down.

Also, I did not experience any immediate improvements with the VNS. Of course, they say that, unlike medications, it may take a while for the VNS to be effective, and the longer you have it, the better it gets. After all this time, I believe it has helped me somewhat. I notice a difference now, and when I’m about to have a seizure and the VNS happens to kick in at the same time, it stops the seizure. I find that very convenient.

However, I still have seizures and the side effects are still there: coughing, hoarseness, not being able to talk (losing my voice). These are made worse when I am in motion, exercising, etc. However, sometimes it happens when I’m not doing anything. It is frustrating to have to deal with this, when I hear of many stories of people who are hardly affected by the VNS at higher levels of stimulation. I suppose we each are unique and have to take what we can get.