The Personal Relevance of Tinnitus Revealed by Web Forums

[Hazel]

What are we really doing here?

Running a tinnitus support forum is – for us – a labor of love. We spend many hours of our free time keeping this show on the road because we believe and hope that it might benefit people.

Yet, it can also be dispiriting. We have to settle arguments when emotions run high. We have to reconcile ourselves to the fact that you really never can please everyone. And, perhaps most difficult to swallow, almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful; they are – supposedly – black holes of doom and gloom that only make one feel worse. If that were really true, then all our hard work has been for nothing. This thought scares me sometimes.

But then, occasionally, something happens that makes it all worth it. A member will approach us saying how much Tinnitus Talk means to them and how being part of this community has made them feel better. Or we meet a clinician or researcher who believes in the power of online communities to affect positive change.

This is one of those moments.

Another study about the tinnitus experience, but maybe something new?

A research paper has been published that has been years in the works and that we were involved in from the very beginning. Not only are we co-authors, but the research outcomes shed a new light on the pertinence of web-based discussion forums like Tinnitus Talk. As it turns out, paying attention to what tinnitus sufferers discuss online can inform new research directions and patient-centered care. Who knew, right?!?

I strongly encourage you, if you have the patience, to read the full-text article attached to the bottom of this post. But here are some highlights for you:

"Overall, five major themes emerged from the discussion threads relating to the lived experience of tinnitus: one highlighting the diversity of tinnitus experiences from one person to the next, one recognizing the severity of complaints for the unfortunate few, one emphasizing the short-term fluctuations in tinnitus experience day to day, one about life's long-term journey in living with tinnitus, and the final one about feeling misunderstood by others without tinnitus."

"Suffering emphasizes intense distress. Usage of the word in the academic literature is not so widespread, perhaps because it is highly emotive language. And yet in the discussion forum many of the participants referred to "tinnitus sufferers" and "suffering.""

"[…] identified patient-centered interaction and patient empowerment as the two most important overarching factors which contribute to the success of counseling. We suggest that these might be the defining features of the web discussion forum which contribute to the therapeutic benefit of participation expressed by some of our discussants."

"While some of these results described are already well-recognized, the concepts of frustration and suffering are less widely discussed in the literature and yet were highly prominent in all five discussion threads."​

We have of course known all of this for years, but some of these themes were literally never before recognized in scientific literature (can you imagine?). No doubt some of you will disagree with certain findings or conclusions of the article, and that's fine (and completely expected, as per the tinnitus diversity theme). But let's also take a moment to celebrate that, this time at least, the voices of tinnitus sufferers have been taken seriously.

A round of applause for...

@Markku spent hundreds of hours building and moderating the (separate from Tinnitus Talk) discussion forum that was used for this study, back in 2018. I'm so happy and proud to see these fruits of his labor.

@Steve (our Director at the time) helped with general planning and recording video tutorials for the discussion forum. Thank you, Steve, too!

We'd like to thank Professor Deborah Hall for leading this study, involving us from the beginning, and seeing it through to publication in a well-respected journal.

 

[Gabriel5050]

Please do not listen to ENTs and doctors that disregard Tinnitus Talk.

Why not be a part of the most understanding community with people like you?

I would feel far more isolated and depressed without this forum. I would have found much later or not at all the useful advice people share here. Advice that ENTs can't be bothered to learn and share, busy on their pedestal, disregarding tinnitus sufferers.

It's still mind boggling to me how only a minority of doctors actually recognise the impact of tinnitus on our lives. We don't want the doctors as our enemy, but they have to believe the patient that they're feeling real things in the first place.

Thankfully the research world is realising the importance of a treatment and trying to treat causes, so we will have a cure/cures in the future.

I can confidently speak for 99% of everyone here that we appreciate this forum and the work put into it.

Otherwise, why would we bother to stick around?

 

[Hazel]

Thanks for the encouraging words and your support @Gabriel5050. It's always heart warming to hear that people appreciate our efforts!



Let's keep fighting together for more recognition, understanding and support for those who are truly suffering.

 

[serendipity1996]

@Hazel,

Tinnitus Talk is a rare place on the internet where you can find intelligent and reasoned discussion about tinnitus and hyperacusis - particularly the research section.

I feel like I've learned so much and there are so many intelligent members here who take the time to explain scientific concepts etc. Dealing with these conditions is hard no doubt but it's also been empowering to learn as much as I can - it's also heartening to see how much progress has been made and the efforts that you and @Markku go to for this community, e.g. the interview with Frequency Therapeutics or the upcoming interview with Otonomy.

 

[AndrewW]

As someone who went to a specialist and was told about the potential harm of online forums, I can unequivocally say that Tinnitus Talk has been positive for me since my tinnitus started.

The forum has provided me with a lot of useful information, pointed me in the direction of useful tools and, perhaps most importantly, introduced me to people who are going through the same thing. Talking to an ENT who doesn't experience tinnitus (and whose advice is typically to "deal with it") is a poor substitute for that.

@Hazel - you and everyone else who help run this place are amazing human beings and providing an incredible service for the rest of us. Tinnitus may suck but Tinnitus Talk does not.

 

[Psych]

I come here at my worst tinnitus times, and Tinnitus Talk never fails to be of major help.

Thank you so much! <3

 

[david c]

And, perhaps most difficult to swallow, almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful; they are – supposedly – black holes of doom and gloom that only make one feel worse. If that were really true, then all our hard work has been for nothing. This thought scares me sometimes.

This is a really interesting point and I think it's worth analysing why this is the case. Some clinicians no doubt worry about patients picking up wrong or misleading information on discussion forums. But many, I suspect, also fear that the patient may actually pick up considerably more helpful information about living with this health condition than anything they may be able to tell their patients.

Certainly, after first suffering from tinnitus, I found the information from those who had lived with the condition of discussion forums such as Tinnitus Talk considerably more helpful than anything I heard from an ENT consultant.

It's worth taking inspiration also from the experiences of other chronic health conditions. Through discussion forums, sufferers of ME (Chronic Fatigue Syndrome), were able to challenge the often incorrect information clinicians were giving out about their condition. They succeeded in exposing one study published in the prestigious Lancet journal, which claimed that CBT and graded exercise were an effective treatment for the condition, as having seriously flawed data leading to a partial retraction by the journal.

Bad science misled millions with chronic fatigue syndrome. Here's how we fought back

No wonder the clinicians and researchers who worked on that study didn't like those discussion forums. It's a timely reminder that sadly too many researchers and clinicians primarily have their own interests at heart rather than the sufferers of the conditions they are investigating.

 

[Ricardo1991]

almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful

I was just talking about this yesterday, that as a community we have nothing but each other to figure out what can help us. I know there is research happening but it feels like it's moving at a glacial pace or sometimes feels like the research is scrapped for another more "interesting" project. Often times threads are started years ago about a potential treatment with no updates provided later on; it is incredibly disheartening because I can't just abandon my tinnitus. I have to live with it.

I have been self-medicating (for a lack of a better term) and literally experimenting on myself because there is no research being done quickly enough to say "this works/ this doesn't work". For example the use of CBD. The only research done has been on rats and we are relying on anecdotes from other sufferers (I can only think I have had some luck with CBD myself but there is no definitive answer if it has indeed helped me because I don't know how to objectively measure my own pain threshold).

It's easy to be negative because I feel that as regular people, we have been left behind by the medical world. Or our pain is disregarded for whatever reason. It is a difficult condition to deal with for so many of us. We have to adjust our lives around noise and sound, an unavoidable element of this world (literally to a point where I felt sorry for the monsters in A Quiet Place ).

I am pleased to see that our suffering is taken into consideration, I am very excited to hear about the Bionics Institute measuring tinnitus objectively; it's perhaps the greatest news I've read about this year and I hope that this research is not abandoned and can help us find a cure or at least a remedy to our pain.

 

[twa]

What are we really doing here?

Running a tinnitus support forum is – for us – a labor of love. We spend many hours of our free time keeping this show on the road because we believe and hope that it might benefit people.

Yet, it can also be dispiriting. We have to settle arguments when emotions run high. We have to reconcile ourselves to the fact that you really never can please everyone. And, perhaps most difficult to swallow, almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful; they are – supposedly – black holes of doom and gloom that only make one feel worse. If that were really true, then all our hard work has been for nothing. This thought scares me sometimes.

But then, occasionally, something happens that makes it all worth it. A member will approach us saying how much Tinnitus Talk means to them and how being part of this community has made them feel better. Or we meet a clinician or researcher who believes in the power of online communities to affect positive change.

This is one of those moments.

Another study about the tinnitus experience, but maybe something new?

A research paper has been published that has been years in the works and that we were involved in from the very beginning. Not only are we co-authors, but the research outcomes shed a new light on the pertinence of web-based discussion forums like Tinnitus Talk. As it turns out, paying attention to what tinnitus sufferers discuss online can inform new research directions and patient-centered care. Who knew, right?!?

I strongly encourage you, if you have the patience, to read the full-text article. But here are some highlights for you:

"Overall, five major themes emerged from the discussion threads relating to the lived experience of tinnitus: one highlighting the diversity of tinnitus experiences from one person to the next, one recognizing the severity of complaints for the unfortunate few, one emphasizing the short-term fluctuations in tinnitus experience day to day, one about life's long-term journey in living with tinnitus, and the final one about feeling misunderstood by others without tinnitus."

"Suffering emphasizes intense distress. Usage of the word in the academic literature is not so widespread, perhaps because it is highly emotive language. And yet in the discussion forum many of the participants referred to "tinnitus sufferers" and "suffering.""

"[…] identified patient-centered interaction and patient empowerment as the two most important overarching factors which contribute to the success of counseling. We suggest that these might be the defining features of the web discussion forum which contribute to the therapeutic benefit of participation expressed by some of our discussants."

"While some of these results described are already well-recognized, the concepts of frustration and suffering are less widely discussed in the literature and yet were highly prominent in all five discussion threads."​

We have of course known all of this for years, but some of these themes were literally never before recognized in scientific literature (can you imagine?). No doubt some of you will disagree with certain findings or conclusions of the article, and that's fine (and completely expected, as per the tinnitus diversity theme). But let's also take a moment to celebrate that, this time at least, the voices of tinnitus sufferers have been taken seriously.

A round of applause for...

@Markku spent hundreds of hours building and moderating the (separate from Tinnitus Talk) discussion forum that was used for this study, back in 2018. I'm so happy and proud to see these fruits of his labor.

@Steve (our Director at the time) helped with general planning and recording video tutorials for the discussion forum. Thank you, Steve, too!

We'd like to thank Professor Deborah Hall for leading this study, involving us from the beginning, and seeing it through to publication in a well-respected journal.

Great piece of scholarly work on tinnitus! Thank you to our admins @Markku, @Hazel and @Steve for the time and effort to produce an informative study. Also much appreciation to Professor Deb Hall for your important body of work illuminating our condition.

 

[FGG]

(literally to a point where I felt sorry for the monsters in A Quiet Place ).

I know, right? Alternate take: those poor hyperacusis aliens ultimately just couldn't stand to be around noisy humans.

 

[ActorFred]

Honestly, Tinnitus Talk is a fantastic resource for the latest cutting edge research that beseeches most hearing loss charities around.

Furthermore, it goes without saying that this is far better place for tinnitus suffers than the British Tinnitus Association.

Tinnitus Talk even has in-depth interviews with potential hearing restoration companies. In particular, the Frequency Therapeutics interview is a favourite of mine.

Does the British Tinnitus Association have anything of the sort? No, it doesn't.

Keep up the good fight! It'll be worth it in the end!

 

[Ricardo1991]

I know, right? Alternate take: those poor hyperacusis aliens ultimately just couldn't stand to be around noisy humans.

I mean I feel like going apesh** too when I am having a bad hyperacusis day. Hahah.

 

[Dirtworks]

I'm going to guess that Tinnitus Talk has probably saved numerous lives. Thank you Hazel, Markku, Steve and everyone else that has cared enough to make this forum the wonderful resource that it is.

I'm a relatively new sufferer but have exited this forum many times already feeling much better than when I entered.

A cure would sure be nice but until then it's sure nice to know you're not alone.

 

[sensualmosquito]

Tinnitus Talk has certainly helped me tremendously.

Back in June, I was lost; terrified and alone in my suffering. I knew I had done wrong, and I looked everywhere for something, someone that would tell me that I was going to be okay.

This forum gave me a lot of hope in that time, and still now, that things will get better. That maybe the ten minutes I spent ruining my ears wouldn't take my life away. That there's hope for something better, and that I'm not alone in this.

 

[Shizune]

If I hadn't been directed to Tinnitus Talk from a very helpful and friendly user on the hyperacusis subreddit I probably would have stayed in the ancient chat-hyperacusis forum with no help, and continued to harm myself.

As the internet continues to grow, more conspiracy theories and harmful information perpetuates in other corners of the web. For this reason I feel like forums getting a bad reputation from "professionals" won't cease anytime soon. I was straight up warned about "flat earthers" by an ER doctor when I told him what harm comes from the stuff that caused my hyperacusis. It's a real shame. The educated and helpful people of this forum have given me more hope than any doctor has. I'd be lost without Tinnitus Talk. I hope more doctors can leave their egos aside and just see how great this forum really is.

I don't contribute much around here and I'm still new, but thank you for everything you've done to keep this place going.

 

[Halsy]

The upside of Tinnitus Talk is there are a lot of smart people here who do the actual research to help understand these accursed conditions and their ultimate resolution - one day. Sadly, most everyone who shows up here is ignorant, scared, confused, angry, depressed, anxious, etc. Like too many I was suicidal when this nightmare started. And regular doctors and ENTs were zero help. Only by meeting people who had done the footwork and passed along the knowledge of where and how to get started on helping yourself was a literal life-saver - not the candy.

By the time I had finally learned I needed to see a specialist and finally got to see one I was fully armed with all the potential things my condition might have been. Being able to be conversant about that, to make sure I was tested for a lot of these obscure conditions - at least to rule them out - was a huge weight off my shoulders. Like my neurotologist first said to me, 'I may not be able to tell you what's wrong but at least we'll be able to rule out what isn't.' And that knowledge helps immensely.

I really wanted to try and get some governmental recognition and help for tinnitus sufferers at a national level here last year but the pandemic has put the kaybosh on that for at least until we get back to some semblance of normalcy. We'll see what may come this year.

 

[twa]

I know, right? Alternate take: those poor hyperacusis aliens ultimately just couldn't stand to be around noisy humans.

I might watch that tonight, except I remember piercing noise when the aliens get blasted with sound.

 

[weab00]

I was straight up warned about "flat earthers" by an ER doctor when I told him what harm comes from the stuff that caused my hyperacusis

Well, let's not pretend like there aren't certain flat earthers on here peddling BS about hyperacusis

 

[Klingelmännchen]

Dear Tinnitus Talk team,

Without this forum I would have long ago given up hope that there could be a chance for good treatments.

There are many other forums on the subject of tinnitus but none, not even that of the German Tinnitus League, is so focused on healing and has not come to terms with the finality of the symptoms as Tinnitus Talk.

Thanks a lot for this!

 

[Quiet please]

First and foremost, THANK YOU for this wonderful forum called Tinnitus Talk. For all the science, the research, the charts, the love. @Hazel, @Steve, @Markku, you are real life heros and I am so appreciative of this space and all you do.

May 5th will be 11 years. I had all the tests, I had the "just learn to live with it" talk. I experienced the incredulous to the oh so sad looks and words from professionals, family and co-workers that I was somehow broken and a rare bird. I felt so alone. Tinnitus has been my greatest struggle in my life and I was alone. My cancer, my major surgeries had a beginning, a middle and end. This is my never ending story and I was in despair.

This forum helped to change that. The day I found you was a really great day. I wasn't alone anymore and I wasn't surrounded by people that didn't know what to say to me. I was with my people.

I've tried and will continue to try everything I can to feel better. Some of the things in retrospect are kind of funny. But I always felt safe discussing them here. That's important. Who needs ridicule on top of this madness called tinnitus.

So again, thank you for this place called Tinnitus Talk. Bless you and please don't stop.

 

[jrg]

I am new - Thank God I found you guys!

 

[Jazzer]

Many members have gone to quite extraordinary lengths to build Tinnitus Talk into the caring community that it is.

Without resorting to names, I would hate to leave anybody out, there are many on here who have encouraged, and supported me in many ways.

Some with actual medical advice, and more with quite simply a kind word or a loving post to lift the spirits.

For me, the most significant aspect of this site is the opportunity it offers for 'good old human interaction.'

You can't beat it.
Long may it continue.

Dave xx
Jazzer

 

[aura]

Keep up the good work.

You are a breath of fresh air.

For some people, this is the only support they have.

 

[Craigyboy11111]

I have had tinnitus for only about 3 weeks. It scared the sh*t out of me in the beginning.

Tinnitus Talk has helped me immensely in both not feeling alone and isolated, and in giving me ideas to try out new things others have previously tried.

Thank you all for your time. This forum has certainly helped me with the messages from some very well-informed and good-willed people.

 

[Joeseph Stope]

It's (what's the term?) occupational therapy. You know, something to do that for some people makes them feel that they are doing something like keeping up or that.

Also it's a very nice meeting place in this COVID-19 self-isolating. pandemic world of face masks.

 

[Flowergirl]

THANK YOU HAZEL ET AL.

NO WORDS. JUST GRATEFUL.

 

[Bob3382]

If I had not found Tinnitus Talk, I might have spent thousands on one of a dozen quackeries. Thank you for keeping it going. I have learned from the experiences of many people here. I should have listened to @RunningMan when he said Tinnitus Mix was a hoax, but I had to see for myself.