Participant Experience: Vagus Nerve Stimulation (VNS) Paired With Tones for Tinnitus

@labrat10687 really nice of you to give an update from time to time. As I understand your T is high pitched? Can you hear tones higher than your T? I asume they play tons higher and lower than your T toghther with the stimulation?

 

David S., My tinnitus is very high pitched. How high I don't know the exact numbers. I was given right at 16 hearing tests to evaluate my tinnitus. I will find out much more at Tuesdays appointment. I was asked if I could accurately describe my tinnitus and for me that was easy.

My tinnitus sounds like squealing disc brakes on a car. Over the years I have heard that loudness does not matter. Never fully understood that. All I know is when my volume is low the tinnitus is much easier to tolerate. But those times are few and far between. I will try to get the numbers Tuesday and let you know.

 

labrat,

What are your thoughts on the possible side effects associated? Sleep apnea, etc.

 

Believe me I took the side effects seriously. What I find rather funny is when you see a commercial on TV about a drug it takes them 2 minutes to tell you all the side effects. I looked at the number of times(60,000)this procedure has been done and really based my decision on that.

So when the doctor said that I have been accepted for the study and would I like to take part my immediate response was not yes but it only took me a short time to make up my mind. Keep in mind that not everyone is accepted. As far as I know there might be a total of 40 that will be given the chance for this study. I simply could not turn it down.

 

Vagus nerve stimulation can also occur via the Tongue (as in non direct to the nerve but a pathway right)- which is what I think "mutebutton" (only realised they release in March, including literature on tests if approved) are doing. Its just attacking plasticity via the tongue vs directly onto the nerve. Which seems to be neuromodulation - but actually working quicker / effective given the vagus being responsive.

Regarding this thread - is this the guys in Dallas? (microtransponder) that uses the same Vagus nerve + tones.... or something else?

Because essentially anything using the tougne = to get to vagnus nerve

 

Hi! I think MuteButton don`t stimulate the vagus nerve, but the trigeminal nerve via the tongue

http://www.mutebutton.ie/healthcare-professionals

 

phrra thanks for that - I read the Vagus could be essentially triggered also via Tougne but no expert and thats not direct. Essentially both promise to breakdown the rewiring around the brain and thus actually make neuromonics work. Mutebutton needs the literature out as despite the CE approval, without the science its just another piece of plastic. I updated the mutebutton thread as they promised literature (FDA approvals??) to be approved by March. Essentially I want to get involved with one of these methods asap

 

Yes it's the people in Dallas. There is a link in the previous posts.http://www.microtransponder.com/?page_id=118

 

Thanks, @labrat10687. I am very interested in this technology. I "applied" for this study but didn't make it past the initial phone intake screening. I was disqualified because I have a metal clip and plate in my brain and skull, due to a ruptured aneurysm. I was told that while my implants would not affect me using the device, should it be approved, it presented too much of a variable to include me in the study.

Good luck! And keep us posted.

 

Update. Just got back from my first appointment after my surgery. I was given several hearing tests plus a test to see which hearing tones I will be using for my daily 2.5 hour sessions. Also I found out what I would feel when the vagus nerve is stimulated. What I noticed was a very slight "tug" on my left side near the incision. They even adjust it to the point where I should feel very little.

All of that data is recorded into the program that I will be listening to. I was given a laptop with high quality headphones and instructed on how to use it. You basically turn the computer on and you are ready to go. The programs length is 2.5hrs. You are also told to try and do your session at the same time every day.

Was able to bring it home and will start tomorrow. I want to try to do my sessions from 8-10:30. My next appointment is in 2 weeks. Will have 2 more appointments 2 weeks apart and that will end the initial 6 week period. At each appointment they will download data from my implants. At the six week mark they will adjust my settings if I was being helped or not. Remember half the people will be getting a placebo program and I have no idea if I got the real treatment or the placebo program.

At the 6 week mark everyone in this study will be given the real program.

 

What does the program look like? Are you supposed to concentrate on the given program or just let it run while you read a book?

 

The headphones pretty much filter out all the noise except the tones. I'm going to do mine with no outside noise. I will just sit at my other computer to occupy my time. The program is nothing but tones that you listen to with your headphones. Can you post pictures on here? If so I could show you a screenshot.

 

Thank You Markku!

 

This is awesome, good luck and I hope you find relief. For some reason I thought you had to do the listening at the lab but it's great you can do it in the comfort of your own home at your leisure. Please keep us updated just as you have been, thanks!

 

Would this work on people who hear multiple noises from tones that change in frequency, buzzing to crickets?

 

@labrat10687

Goodluck with this treatment. Keep us op to speed about any developments! Just a question? Are you on any "brain" meds (like benzo's or ssri's?).

 

This is a question that I don't have an answer for right now. One of the big factors to be accepted was the drugs that a person takes. I had to switch my high blood pressure medication. I'm just getting ready to do my first 2.5 hour session and will try to find an answer to your question.

 

No i'm not on any brain meds. Even if a person was on them I think the time frame they are looking back is what you have been on in the last 2 months. I will try to find the answer for you.

 

It looks like the guy who developed this for tinnitus and brought it to the publics attention jumped ship. He hasn't posted anything about it on his blog in quite a while. I think he's designing video games now? Just Google Will Rossilini. (He's got like six college degrees and used to play professional baseball)

 

Hi @labrat10687 how did your first session go?

 

Rather boring. The tones you listen to just sound like your typical hearing test tone. I'm lucky cause i'm retired so i'm pretty much free all day. I just sat and watched tv with the close captioning on.

 

Did you feel the electrical impulses?

 

No I didn't feel any this time. Going to double check to see if thats normal. I know they tried to adjust it so I wouldn't feel anything but still going to check.

 

@labrat10687,

Appreciate your descriptions and updates about your experiences thus far with vagus nerve stimulation for T. I had an appointment with Dr Shawna Jackson at The Callier Center in Dallas last Oct0ber regarding my T. She explained to me that she had been a part of the 'original' research team that began the vagus nerve stimulus treatment for T. She stated although she was no longer directly involved, she said that several 'improvements' had been realized since the initial trials. She hastened to add though that I was too old [71] for any such future trial.

My primary reason for posting this to you is concerning the high blood pressure meds you have taken and are now taking.

Presently, my blood pressure is no longer being managed by the current HBP med I've been taking [clonidine] -- even before beginning T, which was 5/14/14. The cardiologist has little to no idea about related issues of T. He's prescribed three different HBP meds which have all increased the volume of existing T. He doesn't seem to have any idea what to try next. In fact, he's expressed noticeable agitation with me because of my sometimes refusal to continue or attempt another HBP. I'm very frightened that some HBP could permanently increase T volume.

Obviously, I realize any individual can respond differently to any med or supplement. Nonetheless, if you don't mined sharing, I'm quite interested in what HBP med you were taking and what HBP med you're now taking in order to be included in this trial. It seems to me that some HBP med within the universe of HBP meds might be available that has little to no prospect of increasing T intensity / volume. My current blood pressure levels are quite elevated, and I have to do something right away. One HBP med prescribed lowers blood pressure quickly, but by the end of the second day of use, I just can't tolerate the increase in T volume / intensity.

Any insight you could share would be greatly appreciated.

Thanks,

MCK Trader

 

I believe VNS for tinnitus is is very low, about a factor of 100 less compared to VNS for epilepsy. I can imagine you would not feel anything. Maybe the thing you felt at first is just a shake down of the device....see if it is working properly.

 

Sjoerd, You are very much correct about the VNS for tinnitus is just a fraction of what they use for epilepsy. That was one of the reasons I decided to try it.

 

How are things thus far? Pretty boring I think...? If you need something to watch during the next session of training...all about VNS for tinnitus:

https://archive.org/details/Redwood_Center_2011_09_21_Michael_Kilgard

 

Yes it is pretty boring but very simple. It's easy to get into a daily routine though.

 

How are things?