Have Your Say → Transform Tinnitus Research

We talk a lot about research on Tinnitus Talk.
What’s going on, what we expect from future treatments, when they are coming etc. There’s often an undercurrent of incomprehension or frustration in research discussions: Why are they focusing on this and not that? How can they market this as ‘effective’? If you’ve spent any time discussing tinnitus research, you’ll know what we mean.

Our aim is to convert this community from passive followers of research to influencers of the research agenda.
For that, we need hard data on what tinnitus sufferers want and expect from research. We can then use this data to lobby researchers and companies.

A survey like this has never been conducted to our knowledge (although efforts were made on a smaller scale to involve patients in research).
This is a true opportunity to make your voice heard. So please help us influence the course of tinnitus research and fill in the survey!

 

Have to say, I needed to think about this▼ one for a few minutes...



23. If you had a 50% chance of being cured, which of the following risks would you be willing to take?

a. A 10% risk of your T/H getting worse.

Hardest question on the survey by far.

 

One of the things that bothers me is the exclusion criteria when it comes to a lot of the trials. I have attempted to sign up for a couple but they always list antidepressants or anti anxiety meds are exclusions. This eliminates a lot of people who would be willing to enter trials.

 

Done!

 

My message as a regular person to the research community boils down to this:

I don't care what it takes, just find a way to get rid of tinnitus. We don't have anything reliable.

 

Done.

 

Done. I agree with @Damocles on the hardest question of the survey - had to sit and ponder that one for a while.

 

For me any treatment is worth the risk... We need treatments as soon as possible! Can’t live with this torture for the next several years.

 

A bang-up job. I'd pay a year's salary for a working treatment, would spend all my savings on it and if needed, take out a loan on top.

 

I did the survey and also donated again.

 

I'm kind of fixated by this problem I have with contending with the level of noise. I'm a chronic case (30 years back)...

On the one hand, I can wear my 3M hearing protection when I'm going through the traffic in town to protect my hearing... but the tinnitus seems to be getting louder.

On the other hand, I could expose my OHCs and IHCs to the loud volume and hope that I'll get used to it again.

Mostly I don't have so much of a problem -- until some big motor bike rolls by -- or three, four, five of them together. Also, even a car that doesn't have the silencer properly fitted can cause a day of misery.

The fear of course is that it will send my tinnitus permanently higher.