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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 yahmez on Wed, 2013-04-24 - 19:36
Hello Shaggy_79.
I have had my VNS for a little over a year. I would like to say that it does help reduce the frequency and intensity of the Complex Partial Seizures I suffer from. The stress of being shocked in the neck every 5 minutes is far worse than was described to me before I had the device implanted. Sometimes the device seems to misfire and cause my left ear to get a nasty shock, intense enough to make me scream in pain.
The good news for me is that I can now take about half as much Tegretol as I did a year ago, causing a reduction in the nausea and dizziness that drug causes.
I hope things get better for you, and wish you the best of luck.
yahmez the mad
Hello Shaggy_79.
I have had my VNS for a little over a year. I would like to say that it does help reduce the frequency and intensity of the Complex Partial Seizures I suffer from. The stress of being shocked in the neck every 5 minutes is far worse than was described to me before I had the device implanted. Sometimes the device seems to misfire and cause my left ear to get a nasty shock, intense enough to make me scream in pain.
The good news for me is that I can now take about half as much Tegretol as I did a year ago, causing a reduction in the nausea and dizziness that drug causes.
I hope things get better for you, and wish you the best of luck.
yahmez the mad
Re: Vagus Nerve Stimulation (VNS) side effects and outcomes
Submitted by malcolm.turnquest on Wed, 2013-04-24 - 21:29
I have had my VNS a long time, since 2002. The tone of my voice does temporarily changes when the device activates, but if you continue to speak and explain why the tone of your voice changes people will understand. People become quite fascinated when they learn that I have a medical device implant, so it can be entertaining at times. When it was first implanted the voltage was set pretty high and when the device activated a slight dizziness would come on. I learned pretty quickly when the device would activate and I stopped speaking for that short amount of time. It definitely did aid in the reduction of the frequency of my seizures. I will say thirty seconds those side effects are peanuts compared to weeks of recuperation from a tonic-clonic seizure.
I have had my VNS a long time, since 2002. The tone of my voice does temporarily changes when the device activates, but if you continue to speak and explain why the tone of your voice changes people will understand. People become quite fascinated when they learn that I have a medical device implant, so it can be entertaining at times. When it was first implanted the voltage was set pretty high and when the device activated a slight dizziness would come on. I learned pretty quickly when the device would activate and I stopped speaking for that short amount of time. It definitely did aid in the reduction of the frequency of my seizures. I will say thirty seconds those side effects are peanuts compared to weeks of recuperation from a tonic-clonic seizure.
Re: Vagus Nerve Stimulation (VNS) side effects and outcomes
Submitted by jstepv on Wed, 2013-04-24 - 18:52
I have had a VNS for about 2 years now. And yes I do have a horse voice and at times it hurt my neck, that was the first year now I just have a horse voice and mine goes off every 60 seconds. I am so happy I have it and I hope you will be too. You will adjust. God Bless Nita