Coping With Epilepsy Austin Biofeedback and EEG Neurofeedback Center
10% off neurofeedback training for CWE members - Austin, TX
Neurofeedback Partner - Free Advertisement

Go Back   Epilepsy Forum > Peer Support > The Kitchen

LinkBack Thread Tools
Old 12-26-2018, 09:45 PM
Weaving the Community Fabric
Join Date: Sep 2017
Posts: 296
Thanks: 15
Thanked 32 Times in 25 Posts

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.
Reply With Quote
The Following User Says Thank You to finalpoet For This Useful Post:
Janus (01-13-2019)
Old 12-27-2018, 01:23 PM
Cint's Avatar
CWE Supporter
Join Date: May 2008
Location: Denver, CO
Posts: 5,495
Thanks: 1,150
Thanked 3,163 Times in 2,054 Posts
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.
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Reply With Quote
The Following 2 Users Say Thank You to Cint For This Useful Post:
Janus (01-13-2019), valeriedl (01-03-2019)
Old 12-27-2018, 02:25 PM
Weaving the Community Fabric
Join Date: Sep 2017
Posts: 296
Thanks: 15
Thanked 32 Times in 25 Posts
Thank you and I will check into that.
Reply With Quote
Old 01-11-2019, 10:46 AM
Joined the Party
Join Date: Apr 2016
Location: Central Il
Posts: 56
Thanks: 9
Thanked 11 Times in 10 Posts
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
Reply With Quote
The Following User Says Thank You to Jeanbean For This Useful Post:
Janus (01-13-2019)
Old 01-13-2019, 09:25 AM
Janus's Avatar
Esteemed Pillar of the Community
Join Date: Sep 2012
Location: Olympia, Washington
Posts: 944
Thanks: 782
Thanked 398 Times in 289 Posts
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"
The purpose of life is to live it. People keep getting lost in trying to achieve something great and not living. -Alan Watts
Reply With Quote
The Following User Says Thank You to Janus For This Useful Post:
Jeanbean (01-14-2019)
Old 01-13-2019, 03:54 PM
Super Moderator / Thank You Queen
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,380
Thanks: 938
Thanked 7,290 Times in 5,376 Posts
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 for feedback and information.
Reply With Quote
The Following User Says Thank You to Nakamova For This Useful Post:
Janus (01-15-2019)

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On

Similar Threads
Thread Thread Starter Forum Replies Last Post
VNS not effecting your voice..? gymrat827 The Kitchen 0 10-16-2018 09:52 AM
voice changes MAB The Kitchen 15 10-01-2015 04:14 PM
make your voice heard! Ann T. The Bulletin Board 0 12-06-2008 11:05 AM
Voice For The Uninsured batman The Library 0 09-25-2008 08:33 PM

All times are GMT -5. The time now is 09:39 PM.

Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.