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Old 12-26-2018, 09:45 PM
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VNS Voice


So my VNS is at a very low setting, I don't know exactly how low but it's basically the incoming setting. The reason I want to keep it so low is that it didn't minimally change my voice to be hoarse. At a higher setting it changes my voice to sound incredibly odd, it's hard to describe, but it sounded so weird that I would have some social issues. Dates, finding a job, everything. But it could help a lot more if we upped the setting, so idk if it's worth living with it. Idk if I'm picking right. Mine has only been implanted for a few months now. I'm going to up it again and see if it'll be as inflicting on my voice after it's been implanted for a few months. Thoughts? Am I being somewhat selfish, in a certain way. Is the social aspect meaningless in comparison to your health?

PS: it changes my voice 24/7, not just when it goes off.
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Old 12-27-2018, 01:23 PM
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Originally Posted by finalpoet View Post:
PS: it changes my voice 24/7, not just when it goes off.
So, if your voice changes 24/7 and not only when the VNS is charging, then you need to discuss this with your neurologist. Something isn't right. I've had the VNS since 1997 and already had two battery replacements. I have mine at the highest setting to control my seizures, so my voice will sound hoarse when it charges; initially it would charge every 5 minutes for 10 seconds. Now it is charging every 3 minutes for 7 seconds. This battery was replaced in 2012 and is supposed to last 10-12 years, whereas the very 1st one only lasted 4 years.
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Old 12-27-2018, 02:25 PM
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Thank you and I will check into that.
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Old 01-11-2019, 10:46 AM
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I have had two VNS implants and the first one made my voice more hoarse and the doctor would change the parameters to help with that but kept it at the same output. The new one doesn't seem to cause as many problems. I've never experienced hoarseness 24-7. The company or your doctor should be able to address that. Good luck!!! Jeanne
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Old 01-13-2019, 09:25 AM
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Hi. I am now advised by the neurologist to try the VNS. I'm scared. I'm scared of losing my voice. I know it's not always successful. I thought I heard you can't take it out. I figure if stops seizures, what am I worrried about? I don't know. My seizures are now all status epilepticus, I'm 49 years old. Well, what is there to loose? They have to be stopped. We decided that I can not take keppra for the side effects. Keepra seemed to"help"
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Old 01-13-2019, 03:54 PM
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Some people have had good experiences with the VNS, some have not, so it's understandable that you're scared. You should definitely make sure you have all the information you need before making a decision. Ask your neurologist about his/her experience with the VNS -- does your doc have other VNS patients that would be willing to talk with you? Find out what can be done if the VNS ends up being problematic -- can it be removed, or only turned off? etc.

Check out the VNS Message Board http://www.vnsmessageboard.com/ for feedback and information.
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