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Vagus Nerve Stimulation (VNS) side effects and outcomes
Wed, 04/24/2013 - 11:14Hello all,
I recently had the vagus nerve stimulator (VNS) implant procedure completed, and now one month later, after the second increase in "impulse intensity", I am starting to develop very negative side effects. For me this is a hoarse (reduced to a whisper) voice that continues for the entire 30 seconds that the stimulator is on. For me the cycle is 30 seconds on, 3 minutes off, so this has become quite a nuisance, especially since I am a teacher and talking all day. I have heard of other people experiencing pain or tingling on their neck, head, or face, sometimes so severe that they have had to have the stimulator turned off and/or removed alltogether. However, I have also read that most side effects fade over time, and there is even the possibility of positive side effects such as increases in mood.
I am interested in hearing the stories of those who have the VNS implant and their experiences with side effects and how they manage those side effects. I would also be interested in hearing the outcomes, both good and bad, of having the implant for several months and years. Did the side effects eventually go away? Was there a strategy you used to help deal with the hoarse voice?
Were these side effects worth any positive results?
Thank you for your stories and opinions,
JW
Comments
Re: Vagus Nerve Stimulation (VNS) side effects and outcomes
Submitted by porterhouse on Fri, 2013-04-26 - 01:09
I always like to hear what others have to say about the VNS. I certainly have the hoarse voice and it drives me crazy at times. All my seizures are at night and I sleep alone so the magnet has never been used, but the Dr. said it has helped reduce the seizures. I always tell people I have a "pacemaker" for the brain instead of the heart when they ask about the voice. They are very interested like you said. Mainly I think the friends are curious because they know nothing about it. Since the VNS did not work 100% for me I also had the brain surgery. The one thing I am always trying to figure out is how many have the VNS and a brain surgery. After the surgery I took the same five prescriptions for the epilepsy, finally been reduced to three. Only problem is I still have about two-three a month. Someday it may still get better. :)
Good luck to you.
Bill
I always like to hear what others have to say about the VNS. I certainly have the hoarse voice and it drives me crazy at times. All my seizures are at night and I sleep alone so the magnet has never been used, but the Dr. said it has helped reduce the seizures. I always tell people I have a "pacemaker" for the brain instead of the heart when they ask about the voice. They are very interested like you said. Mainly I think the friends are curious because they know nothing about it. Since the VNS did not work 100% for me I also had the brain surgery. The one thing I am always trying to figure out is how many have the VNS and a brain surgery. After the surgery I took the same five prescriptions for the epilepsy, finally been reduced to three. Only problem is I still have about two-three a month. Someday it may still get better. :)
Good luck to you.
Bill
Re: Vagus Nerve Stimulation (VNS) side effects and outcomes
Submitted by Shaggy_79 on Thu, 2013-04-25 - 00:08
Thank you for the replies! Another question I had is does anyone have success using the instant-on magnet feature? I used it before a seizure and it didn't help. However, I think it gave my friends a feeling that they are slightly more in control...people are eager to help, but perhaps the hardest thing about epilepsy is coming to terms with the fact that you are not in control. When I have a seizure people say afterward "are you sure you took your meds?", "did you sleep enogh last night?". I find this to be very condescending, and have to admit that I feel like "if I let them wave a magnet on my chest, maybe they will understand a little bit more that trying to constantly be in control of epilepsy is futile, and just be ok with that.!" Sorry, had to vent :) JW