Tinnitus Hub / Talk Survey Results

[Markku]

An article about the survey was published in American Tinnitus Association's Tinnitus Today magazine (Spring 2016 issue).

Attached (also attached this to the first post of the thread).

 

[Starthrower]

This is excellent!

The reason for my first post on your site. Nice work after all the hardships since beginning your website. I am not active on the internet world but I do follow what is going on. And I know how hard it is to get this far. Never stop moving forward.

 

[wishingluck]

Thank you Steve! don't worry about the quality of the print, etc, that stuff is never important, what matter is the content. I see in the survey that there's several 'treatments' that have an high score, all treatments I thought were useless, such as TRT, etc....I will have to investigate. Hope you feel better.

 

[jeannie]

Thank you Steve and Markku. Very interesting.

 

[Jamclem]

So by the looks for it Retigabine and Gaba drugs such as Xanax are probably most effective?? Interesting how rTMS is rated not highly in effectiveness. I am actually taking part in a clinical trial in February for deep brain stimulation tRNS2-tin but doubt it is the same as rTMS.

 

[Sailboardman]

Nice work @Steve and @Markku.

In regards to my tinnitus, I have it only in one ear, even after two years and it came about after SSHL. My right ear lost hearing from 2-8 kHz standard test and at 65-70 dB's straight across. This occurred overnight. I believe I'm probably, profoundly deaf above 11 kHz. Can't hear any high frequencies. Without a hearing aid I wouldn't hear much at all out of that ear.

Being there's such an imbalance from one ear to the other, my tinnitus is perceived in my ear, not my brain. I have many frequency shifts in my bad ear during the day, which indicates to me, the cochlear is creating this, not my brain. It's more mechanical in nature, than psychological.

It still baffles me how so many people I meet with hearing aid(s) have no tinnitus at all and some with no hearing loss have tinnitus. This makes me believe, a one drug fits all cure, is many years away. There's just so many variables with this condition.

 

[Cillian]

@Sailboardman do you think treatment is possible within the next 5-10 years?

 

[Sailboardman]

@Sailboardman do you think treatment is possible within the next 5-10 years?

Anything is possible. However, with so many different ways to acquire tinnitus, I'm doubtful a complete cure, will come in a drug form.

For hearing loss, I could ensivion stem cell treatments, doing most of the heavy lifting, in revitalizing hair cells. I honestly believe, researchers are only beginning, to understand what exactly will restore a damaged cochlear.

The problem is, the human hearing system is a delicate instrument, encased in solid bone. Nano surgery would be required to tinker with such a tiny and complicated device. Plus, our hair cells are floating in fluid, like strands of seaweed, waving back and forth in the sea currents. I'm not sure invasive surgery, would ever do much good anyway?

I suspect when I die, the last thing I'll hear, is my tinnitus. If I was twenty, maybe before I died, there would be a "true" cure.

 

[Cillian]

I am 20 but I've had every hearing test possible done and I have zero hearing loss.

 

[wishingluck]

@Sailboardman do you think treatment is possible within the next 5-10 years?

There's no rational reason that would impede that, and there's no rational reason that would guarantee it.

Me, I am hopeful, although not delusional. As I always say, being optimistic and being a total pessimist, isn't rational.

 

[wishingluck]

I suspect when I die, the last thing I'll hear, is my tinnitus. If I was twenty, maybe before I died, there would be a "true" cure.

I respect your opinion, but completely fail to see the point.

Why do you 'suspect' that when you die, the last thing you'll hear is your tinnitus? You aren't dead yet.

In 10 years, anything can happen, indeed, from another world war to a cure for cancer. The only thing I can be sure about, is that no one can predict the future, and pretending we can is a waste of time.

Look at history....from a year to the next there have been world wars, right when life really was pretty good. And right when the Hitler seemed to have the upper hand, he got his ass beaten.

No one knows the future. Things can change and be better or worse. People die of cancer. But they also win jackpots. Anything is possible, indeed. The real problem is, no one has any control over it.

 

[Cillian]

They can have another World War but not until they cure tinnitus.

 

[Dutchy]

Interesting to see that the majority has minor or no hearing loss at all!

Hmmmmm...

According to current standards, who knows what kind of damage they're not detecting with their tests.

Just to make it clear that I made this observation from my personal experience with the audiologist,
they would've settled with the results from the test up to 8 kHz and I had to make a separate request
to test for the higher frequencies which shows me having trouble hearing beyond 14 kHz.

So is their testing methodology even valid? That is my overall feelings towards the existing literature.

 

[OnceUponaTime]

Fantastic job! Thank you for all you do.

 

[marqualler]

Fantastic work! Tinnitus Hub & Tinnitus Talk (and their members) are making a splash just like we should... great work all around everybody.

 

[Alue]

Bump.

@Steve Did you ever find a statistician to analyze the data?

 

[Steve]

Bump.

@Steve Did you ever find a statistician to analyze the data?

It's in progress. We potentially have a stats prof but he may be a little busy. There is a plan b though which I'll update on very soon.

Whatever happens we will be getting the analysis and will also soon plan a follow up based on the more interesting findings.

 

[Alue]

@Steve

It's been 6 months, any luck with getting the data analyzed?

 

[Rasmus]

I found that pretty interesting too, it is self reported so I'm not sure how aware people are of having any hearing loss - especially if it creeps up on you.

In hindsight it would have been a good idea to ask how many had their hearing checked. This wouldn't pick up the hearing loss above 8 kHz for the majority though due to the test limitations.

I don't have hearing loss and mine has been checked. At least the ENT doctor says my hearing is fine, and I don't have problem with any hearing at all :/ I don't think tinnitus has something to do with hearing, I think it's something else in your ears (maybe it could also be jaw or neck but this is unlikely I think). I can hear up to around 16.000 Hz in both ears.

 

[Steve]

@Steve

It's been 6 months, any luck with getting the data analyzed?

Something is coming out pretty soon. It's not a full analysis but it's a paper looking at the data and comparing to other data sources. As soon as it's live we'll link to it.

 

[Kelvin]

Wow!! That shows just how complex this damn thing is. Hopefully you can share with medical researchers if they show interest. I guess that's a big 'if ' though given the complexity and individuality of tinnitus I would guess that drug companies are unlikely to make a big profit from a one pill fits all solution.

Thanks for doing that. It's fascinating - even to a layman.

 

[racerfish]

This is great work that you've done here. I found a lot of the information very interesting. Of most interest to me were success and failure stats for various treatments.

Is there a way to break that info down somehow so you could see, for example, most of the people who responded well to steroids got tinnitus from noise but not from some other cause. Or most people who didn't respond to Ginkgo, for example, got tinnitus as a result of a head injury.

 

[Steve]

This is great work that you've done here. I found a lot of the information very interesting. Of most interest to me were success and failure stats for various treatments.

Is there a way to break that info down somehow so you could see, for example, most of the people who responded well to steroids got tinnitus from noise but not from some other cause. Or most people who didn't respond to Ginkgo, for example, got tinnitus as a result of a head injury.

Yes we can do some basic correlations within the survey software. If you have a particular thing to look at I can try and find it out.

 

[Tinniger]

Very interesting survey

 

[IvanRus]

Where can I go through this issue now? Give me a link

 

[Steve]

We haven't had any other data from the survey yet but the results went into creating the recent physical links survey. It also pushed our site into the limelight, showing how we can reach a lot of people and how patients can play a big part in research.

The physical links survey is going to seed further work and is being analysed by researchers might now.

 

[Agrajag364]

Sorry if something like this has been posted before. I was having a look at the TT survey results - particularly the poll of nearly 3000 people answering what were the effects of various treatments.

I made two lists of the "best" treatments based on the figures.

Please note I may have missed a few treatments out, and the percentages may not be totally accurate as I was just adding in my head!

But after I'd made them I thought they'd be of interest to people on the forum.

It is worth bearing in mind the real life improvement rates MIGHT be bigger because you tend to get those who a treatment didn't help on forums. In addition I find this data of value because quite a lot of the medical literature on various treatments can be biased by the funding input from the drug or device manufacturers. Sadly Trobalt seems to have been discontinued this year as many forum users will know.


Best treatments from Tinnitus Talk survey of 2914 people:


Treatments with the largest "big improvement"


1) Trobalt - 28.3%

2) Hearing aids - 14.4%

3) TRT (Tinnitus Retraining Therapy) - 13.5%

4) CBT (Cognitive Behavioral Therapy) - 12.4%

5) Self administered sound therapy i.e. masking - 9.3%

6) Psychologist - 9.28%

7) Antidepressants - 8.15%

8) Biofeedback/meditation - 7.3%

9) In ear maskers - 6.7%

10) Steroids - 6.65%

11) Neuromonics - 6.32%

12) Chiropractor - 2.2%

13) Acupuncture - 2%



Treatments with the largest overall improvements (and percentage slightly or a lot worse)


1) Trobalt - 62% (7% worse)

2) Self administered sound therapy i.e. masking - 61% (2% worse)

3) CBT - 57% (2% worse)

4) Hearing aid - 55% (10% worse)

5) TRT - 50% (6% worse)

6) Biofeedback/meditation - 49% (2% worse)

7) In ear maskers - 46% (8% worse)

8) GABA type drugs - 46% (10% worse)

9) Antidepressants - 44% (13% worse)

10) Psychologist - 44% (3% worse)

11) SoundCure - 36% (9% worse)

12) Acoustic Neuromodulation - 31% (2% worse)

13) HBOT (Hyperbaric Oxygen Therapy) - 28% (2% worse)

14) Neuromonics - 27% (7% worse)

15) Chiropractor - 22% (3% worse)

16) Acupuncture - 26% (3% worse)

Note chiropractor and acupuncture were not actually in the top lists - I added them on as had heard they'd helped people I'd written to.

 

[Rings-a-Bell]

If someone has access to the raw data it would be interesting seeing if the effectiveness of treatments is different, depending on the source of the tinnitus. For example if people whose tinnitus is caused by an accoustic trama and have hearing loss are more helped by hearing aids than the average for the group.

 

[crd3]

Why'd they have to discontinue Trobalt? I'd take discolored skin over tinnitus.

 

[hans01]

Interesting to see that the majority has minor or no hearing loss at all!

Hmmmmm...

Thanks for the results, great work!

Yes, I'm really impressed that most don't have or only mild hearing loss, interesting ...