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My topic for the blog relay is epilepsy technology and innovation, and as a VNS patient I'd like to give you a little update as to how the VNS has worked out for me after five and a half years of treatment.
The first thing I would like to point out is that the VNS hasn't stopped or really lessened the amount of seizures that I've experienced, but I would say it's been a success because I feel like it lessens the intensity of the seizure and helps with recovery time after a seizure.
As of right now, my battery is at about 2/3 capacity... much more than I would've initially expected. I think I was told that I'd need to change the VNS battery every 5-8 years, but it looks like my battery will last a lot longer than that, which I'm grateful for.
My wife and I attended an epilepsy conference in Chicago, and there were many options for someone who's seizures are not well controlled with medication alone. We just glanced over the booths to see things like the deep brain stimulator, etc., so I can only speak for the VNS because it's really a part of my everyday life.
My VNS is on for seven seconds and off for ten by itself, without swiping the magnet over the device to double the "dosage," which then keeps the device on for one minute.
When the VNS is on, I feel a pulsing tickle in my throat. I've gotten used to it now, but there are some other side effects.
The one side effect that has most impacted my life is that I now have to wear a sleep apnea mask. I may have been just on the verge of needing one before having the VNS installed, but now it's a necessity. It's a pain to have to use a cpap, but I've found that I do sleep much better.
I wouldn't hesitate once about having this VNS surgery... with the battery changing surgery and all. I've heard that the new batteries last longer and soon my doctor will be able to log on to my VNS while I'm at home to see it's status and make changes if needed.
If you're considering the surgery and would like to know a little more about my experience with the device you can leave a comment below and we can talk privately.
Thanks!
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NEXT UP: Be sure to check out www.cf-epilepsy.com for more on Epilepsy Awareness.
