Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

[MarilynK]

My tinnitus is not even noticeable now that I have hearing aids. I only hear the noise when I am NOT wearing my aids and in a quiet place.

What is the role of hearing aids and tinnitus?

Also, why is there a monopoly on hearing aids such that it costs $4K to $5K to get them???

This is so unfair, there are people with hearing loss suffering agonizing tension and tinnitus who could be relieved if only they could afford hearing appliances

 

[GregCA]

My tinnitus is not even noticeable now that I have hearing aids. I only hear the noise when I am NOT wearing my aids and in a quiet place.

What is the role of hearing aids and tinnitus?

Many cases of tinnitus are believed to be due to the auditory deprivation causing the brain to "fill in the blanks". If you restore auditory data with a hearing aid, the need to "fill in the blanks" disappears. Well, that's one theory.

Also, why is there a monopoly on hearing aids such that it costs $4K to $5K to get them???

Where do you live? My Costco hearing aid cost me $1,300. Not cheap, but quite far from $5K.

 

[toolman]

Dave Carr: It seems gene therapy for hearing loss has moved into the human testing phase with a number companies like Frequency Therapeutics. What do you think the chances are that gene therapy can become a potential cure for hearing loss and will that also cure tinnitus?

 

[Autumnly]

To be honest, I don't know how to feel about the statement 'less social isolation means less tinnitus distress' because it doesn't explain that some people can't socialize because of their tinnitus or hyperacusis. But obviously I don't know what you guys said during the presentation and I can only see the PDF slides. It just reminds of my ENT that said 'just go out there and live your life' and I did and my tinnitus got worse.

However, I also understand that there are people with tinnitus who isolate themselves though they actually don't have to and they are in a different situation than I am when it comes to social isolation.

Overall, it's amazing to see how many people participated, the 'reasons for not discussing tinnitus' were very honest, the slides look great and it's clear that a lot of work, effort and time was put into this.

Thank you all very much!

Edit:
The key finding was a very strong and statistically significant correlation between the degree to which someone is bothered by their tinnitus and how socially withdrawn they are.

I don't mean to say the statement isn't true, just that the reasons why someone isolates themselves due to tinnitus can vary. For example: being scared of making tinnitus worse, (severe) hyperacusis, feeling ashamed, tinnitus is (very) reactive,...

 

[glynis]

@Candy,

It was lovely to meet you and sorry to hear your ears spiked and had an emotional time the day after.

It can be upsetting hearing people struggling with tinnitus. I know it can play on your mind.

I have been supporting Tinnitus Sufferers many many years by phone and forum, email and face to face and it is so important to make sure that also our team gets support when they also need it especially after an event.

I'm always around so please make sure you contact me anytime for support and It was so lovely to have our first ever stand for Tinnitus Talk and Tinnitus Hub... What a team.

So proud to have met you all and a day I will always remember.

love glynis xxx

 

[Contrast]

My tinnitus is not even noticeable now that I have hearing aids. I only hear the noise when I am NOT wearing my aids and in a quiet place.

What is the role of hearing aids and tinnitus?

Also, why is there a monopoly on hearing aids such that it costs $4K to $5K to get them???

This is so unfair, there are people with hearing loss suffering agonizing tension and tinnitus who could be relieved if only they could afford hearing appliances

You won't need a hearing aid once this happens, don't beg for a glorified microphone/equalizer inside your ear. Support the science of hearing loss restoration!

https://clinicaltrials.gov/ct2/show/NCT03616223

 

[Steve]

I don't mean to say the statement isn't true, just that the reasons why someone isolates themselves due to tinnitus can vary. For example: being scared of making tinnitus worse, (severe) hyperacusis, feeling ashamed, tinnitus is (very) reactive,...

Absolutely right. Isolation can be due to something like hyperacusis being so bad that you can't tolerate the outside, it could be from not wanting to engage because you feel alone, or any number of things.

For us it shows statistically that the two can go hand in hand. It seems blindingly obvious but we couldn't really see any data out there to show it. Like any figures it does not mean they always correlate as there are always differences in each of us with tinnitus, we all have different experiences so it's important to take the things from research and understanding that are relevant to us.

I think that it does show another reason that support networks are so important. Be that family, friends, face-to-face sessions or groups, and of course places like Tinnitus Talk.

 

[Steve]

(Talking Tinnitus Expo, the day after):

Got up early today, my tinnitus was screaming.

I've also shed some tears, yesterday knocked me for six and today am feeling deflated and a bit lost.

Lots of stories to take in. We were all fully engaging with people, which I felt was important, as when I went to the last BTA conference, meeting people provided me with comfort so wanted to do the same for them.

Many of them were accompanied by well meaning friends or partners but I couldn't help feel that it's a lonely burden to carry, that only "club members" truly understand. That in our day-to-day life we are on our own.

Echoing @Jazzer's comments, I wish I could just take it away from all of them.

Then I remind myself of how we have this forum to connect with each other and how just because it's not face to face one still gets to know people and sometimes in a more intimate way.

That as a community we have a strong voice and that people are starting to take the condition seriously, which was my main take-home message, given the increase in research activity.

For that we have @Markku and @Steve to thank. Your devotion to this cause is laudable and I can't express my gratitude enough.

@Steve - I'd read some of your posts and knew you were a sound guy. In person you are ray of sunshine. I felt cross at myself for getting so upset today, knowing that you engage with people in distress all the time and just want to give you a virtual hug.

@glynis - I thanked you yesterday for being always there for everyone on the site, what an amazing contribution.

@Hazel - such a doer, didn't get to say au revoir, I wish you lots happiness in your next adventure.

@Jazzer - what a charming gent, thank you for being there yesterday and making me smile.

@Angeline - you gave me hope, you are a trooper and hope one day we can share a glass of Sauvignon together. I know you'll bounce back.

Sorry didn't mean to produce an Oscar speech but "it's been emotional" .

Good night x

Hi Candy,

Thank you for the hug

I know that it can be an emotional ride, you shouldn't feel cross. It's inevitable that it will take some kind of toll, especially when you hear so many stories and personal experiences for a prolonged period. What you did by volunteering was something special that helped a lot of people. I'm sorry that your tinnitus jumped up because of it and I wish I could take it away, I hope you feel better soon.

It was truly a pleasure to meet you.

Steve

 

[GregCA]

To be honest, I don't know how to feel about the statement 'less social isolation means less tinnitus distress' because it doesn't explain that some people can't socialize because of their tinnitus or hyperacusis.

This statement seems to imply causation from social isolation to tinnitus distress.

Edit:
The key finding was a very strong and statistically significant correlation between the degree to which someone is bothered by their tinnitus and how socially withdrawn they are.

This statement, on the other hand, just establishes correlation. It's quite possible that there are implications both ways: you can be so bothered by your tinnitus (and hyperacusis) that you have no option but to withdraw socially (I had a period with severe hyperacusis where this was the case - no way to socialize, much like there is no way to keep you hand in a fire, as your body reacts automatically to get away from the situation), but also the other way around, where your social withdrawal artificially elevates tinnitus in your consciousness and increases its bothering power, simply from the lack of other brain stimulation that acts as a distraction from tinnitus.

 

[david c]

To be honest, I don't know how to feel about the statement 'less social isolation means less tinnitus distress' because it doesn't explain that some people can't socialize because of their tinnitus or hyperacusis. But obviously I don't know what you guys said during the presentation and I can only see the PDF slides. It just reminds of my ENT that said 'just go out there and live your life' and I did and my tinnitus got worse.

However, I also understand that there are people with tinnitus who isolate themselves though they actually don't have to and they are in a different situation than I am when it comes to social isolation.

Overall, it's amazing to see how many people participated, the 'reasons for not discussing tinnitus' were very honest, the slides look great and it's clear that a lot of work, effort and time was put into this.

Thank you all very much!

Edit:
The key finding was a very strong and statistically significant correlation between the degree to which someone is bothered by their tinnitus and how socially withdrawn they are.

I don't mean to say the statement isn't true, just that the reasons why someone isolates themselves due to tinnitus can vary. For example: being scared of making tinnitus worse, (severe) hyperacusis, feeling ashamed, tinnitus is (very) reactive,...

I share your concern @Autumnly regarding this "key" finding. While I have no doubt that Tinnitus Hub intend the finding to be used solely to support sufferers - for example through support groups etc, there are unfortunately examples where this sort of survey has been used for other purposes.

ME (Chronic Fatigue Syndrome) is a condition similar in many ways to tinnitus in that many of its causes are still little understood and it can lead to sufferers having to spend long periods at home and therefore suffering from social isolation. When a major study was published in the Lancet suggesting that CBT and a specialised exercise programme can help ME sufferers improve symptoms, reduce social isolation and move back into employment, this initially seemed to ME sufferers a good thing.

Little did they know that the researchers were actually being paid by government insurers to get sufferers off sickness benefits quickly and that they had actually falsified much of the data.

Read more about that here: https://www.meassociation.org.uk/20...al-scandals-of-21st-century-20-february-2018/
https://www.bbc.co.uk/news/health-43490335

While reducing social isolation of tinnitus sufferers sounds like a good thing- there is a real danger of pushing sufferers with severe tinnitus too quickly into situations where they will be exposed to stress and noise exposure - the two things which are most likely to lead to tinnitus worsening rather than improving.

 

[Hazel]

To be honest, I don't know how to feel about the statement 'less social isolation means less tinnitus distress' because it doesn't explain that some people can't socialize because of their tinnitus or hyperacusis.

This statement should only be taken as a purely statistical correlation. That means we don't know how the causality works; does social isolation cause more tinnitus distress, or does tinnitus distress cause more social isolation, or both? Or is there some third factor involved that we don't know about? This is the trouble with statistical analysis, it doesn't tell you everything you need to know. Therefore, we don't want to make any unwarranted claims that are not substantiated by our data. Does this help @Autumnly?

I don't mean to say the statement isn't true, just that the reasons why someone isolates themselves due to tinnitus can vary. For example: being scared of making tinnitus worse, (severe) hyperacusis, feeling ashamed, tinnitus is (very) reactive,...

Unfortunately, the data didn't tell us about the reasons behind individual cases. Again, these are just statistical correlations that we found at aggregate level. Obviously, they do not tell the whole story. But I think this data does help in terms of quantifying the huge social impact of tinnitus, and that in turn might help to generate more awareness and understanding.

 

[Hazel]

This statement seems to imply causation from social isolation to tinnitus distress.

No, this was just a correlation, no causation implied. The slides make that clear.

This statement, on the other hand, just establishes correlation. It's quite possible that there are implications both ways: you can be so bothered by your tinnitus (and hyperacusis) that you have no option but to withdraw socially (I had a period with severe hyperacusis where this was the case - no way to socialize, much like there is no way to keep you hand in a fire, as your body reacts automatically to get away from the situation), but also the other way around, where your social withdrawal artificially elevates tinnitus in your consciousness and increases its bothering power, simply from the lack of other brain stimulation that acts as a distraction from tinnitus.

Thank you. You explain it probably better than I did

 

[Hazel]

I share your concern @Autumnly regarding this "key" finding. While I have no doubt that Tinnitus Hub intend the finding to be used solely to support sufferers - for example through support groups etc, there are unfortunately examples where this sort of survey has been used for other purposes.

ME (Chronic Fatigue Syndrome) is a condition similar in many ways to tinnitus in that many of its causes are still little understood and it can lead to sufferers having to spend long periods at home and therefore suffering from social isolation. When a major study was published in the Lancet suggesting that CBT and a specialised exercise programme can help ME sufferers improve symptoms, reduce social isolation and move back into employment, this initially seemed to ME sufferers a good thing.

I can assure you that we have the best intentions with publishing these survey results. We are basically just publishing the hard data "as is" with some statistical analysis on top. We are NOT pushing towards any particular solutions or treatment for sufferers, merely raising awareness about the huge social impact of tinnitus.

Little did they know that the researchers were actually being paid by government insurers to get sufferers off sickness benefits quickly and that they had actually falsified much of the data.

Well, we are certainly not being paid by anyone. We've put countless hours of unpaid time into this survey and analysing and presenting the results. I traveled to UK from the Netherlands at my own expense to present these findings. So I quite resent the implication here!!!

While reducing social isolation of tinnitus sufferers sounds like a good thing- there is a real danger of pushing sufferers with severe tinnitus too quickly into situations where they will be exposed to stress and noise exposure - the two things which are most likely to lead to tinnitus worsening rather than improving.

We are not pushing sufferers into anything, so I don't know what you're getting at.

 

[Starthrower]

Sorry didn't mean to produce an Oscar speech but "it's been emotional" .

@Candy this is the most difficult part of dealing with tinnitus support. I remember my friend from OHSU Dr. Billy Martin dealt with this each day and his staff and he were all affected by each patient they would see. It is even harder when there is not one true way to ease the suffering or when the patient has no finances to pay for services.

We often spoke of this while he visited our home but he always had this upbeat personality and spoke about doing everything they could for each one. But the patient's distress over severe tinnitus... got to him and the staff each time.

But they always provided hope and understanding.

It is hard to disconnect the "emotions" but is necessary with this sometimes.

I am still learning how to do that.

 

[glynis]

@david c,

Every sufferer with tinnitus has their own environment where they live and what is available to them to socialise in a comfortable place for each person's needs.

From living in a city to living in a countryside, and it can also depend on what their financial means are.

Some people have partners, some live alone, some are young and some elderly, religions can also play a part in it and so on.

Some people have severe tinnitus, ear diseases, hearing loss, also language barrier could be a problem.

Lots of subcategories trying to find a solution individually to help social isolation.

love glynis

 

[Hazel]

Hi, thanks for the info so far. Any news on the answers to all of the questions which were asked on this thread?

That will take a while. Tons of video footage to sort out. But stay tuned!

 

[Autumnly]

@Hazel, @Steve,

Thanks so much much for your replies, everything's clear now!

I basically just wanted to ask 'is this statement meant as causation or correlation or somewhat both?' but I couldn't put it into words and instead wrote a little essay.

I'm really happy and immensely thankful to see that we finally have information (as in actual survey results) on how tinnitus can impact people differently.

 

[david c]

I can assure you that we have the best intentions with publishing these survey results.

And I specifically said that "I have no doubt that Tinnitus Hub intend the finding to be used solely to support sufferers"

We are not pushing sufferers into anything, so I don't know what you're getting at.

I appreciate Hazel as you live in the Netherlands that you may not be very aware of the political situation round disability and benefits in the UK. I suggest therefore that you read up on this in the link I gave earlier
https://www.meassociation.org.uk/20...al-scandals-of-21st-century-20-february-2018/

Something very similar to the ME trial on the effectiveness of CBT for ME (a study which turned out to have flawed data) has been happening recently with the BTA funded study by Laurence Mckenna on the use of MCBT for tinnitus. It's already been established on this forum that Dr Mckenna misled the BTA about some of his commercial links (eg to TRT). It wouldn't surprise me to find out that the BTA study also had as one of its ulterior motives the aim of removing sufferers of severe tinnitus from the government's benefits bill.

I think people with severe tinnitus who do claim some kind of benefit because they cannot work (I am not one of them but I do know people who are) should be very concerned by the aims of the BTA's MCBT for tinnitus study.

Similarly while the idea that reduced social isolation correlates with reduced tinnitus seems innocuous, there is a danger it can also be used to push sufferers with severe tinnitus into social situations which actually made their tinnitus worse. @Autumnly testifies in her post that this was what happened to her.

 

[Starthrower]

It wouldn't surprise me to find out that the BTA study also had as one of its ulterior motives the aim of removing sufferers of severe tinnitus from the government's benefits bill.

What the hell? Are you serious @david c?

We need a Stop The Stupidity event.

The people here worked hard at this event. They did so with their own money and time. Stop the slanderous remarks.

 

[Autumnly]

Similarly while the idea that reduced social isolation correlates with reduced tinnitus seems innocuous, there is a danger it can also be used to push sufferers with severe tinnitus into social situations which actually made their tinnitus worse. @Autumnly testifies in her post that this was what happened to her.

I agree, however, the slides themselves don't recommend to push someone with tinnitus/hyperacusis into social situations they're not comfortable with (yet). My ENT would definitely interpret the results to suit her own narrative that tinnitus can't be debilitating and that you just have to live a 'normal' life, but this is not the results' fault.

Also, even someone that is homebound can still have social contacts, e.g. having friends come over for a short period of time, communicating with a therapist via text or living with family members.

Obviously, what kind of social interactions are being recommended should always depend on the individual tinnitus case, but, unfortunately, there will always be doctors who don't understand tinnitus and hyperacusis and thus treat every patient the same way.

 

[david c]

What the hell? Are you serious @david c?

We need a Stop The Stupidity event.

The people here worked hard at this event. They did so with their own money and time. Stop the slanderous remarks.

Actually a significant number of ME sufferers took their own lives after a CBT study for ME was used to push them into work which they were still unwell enough to do and into social situations which they were still unwell enough to cope with. I don't find that remotely funny.

I have no doubt that the MCBT studies for tinnitus which the BTA commissioned can be used for the same purpose. Laurence McKenna - the author of that study has failed to declare his full list of conflict of interests and misled the BTA about some conflicts of interests. I think we need to find out the truth about these.

@Starthrower you know very little about the political, medical and social situation of my country. You are an American who has little knowledge of the BTA although you do seem to know about the ATA which you seem to have fallen out with in a big way.

Nothing in any of my posts has remotely criticised any of the Tinnitus Hub people who worked at the event - to say that I have is a deliberate misreading of my posts. If you think that I have criticised them maybe you would like to quote the section of my post in which you think that happened.

 

[glynis]

@david c,

I have severe bilateral tinnitus in both ears, severely asthmatic and am on lots of medication just to breathe -- my lips go blue, have OA in most joints, hearing loss, Meniere's disease that leaves me off my feet and sick and dizzy 2-3 days at a time.

I pay for all my medication that would be over 80 pounds a month if it weren't for the yearly card.

I get no disability payments and work part time 6 1/2 hours a week to pay for them.

I tried to claim disability and was made to feel an inch high at a DLA interview, I was even throwing up in their sink 3 times through the interview due to a Meniere's attack and holding onto the wall to balance myself as I wanted to check my balance with my eyes closed.

And she asking me with my back to her could I hear her talk with my severe tinnitus and could I understand her and how did I get to the interview myself.

They can stick their benefits up their asses!

I know people who lie on their claims, stating they cannot drive and yet they have a car...

love glynis

sorry for venting x

 

[david c]

@david c,

I have severe bilateral tinnitus in both ears, severely asthmatic and am on lots of medication just to breathe -- my lips go blue, have OA in most joints, hearing loss, Meniere's disease that leaves me off my feet and sick and dizzy 2-3 days at a time.

I pay for all my medication that would be over 80 pounds a month if it weren't for the yearly card.

I get no disability payments and work part time 6 1/2 hours a week to pay for them.

I tried to claim disability and was made to feel an inch high at a DLA interview, I was even throwing up in their sink 3 times through the interview due to a Meniere's attack and holding onto the wall to balance myself as I wanted to check my balance with my eyes closed.

And she asking me with my back to her could I hear her talk with my severe tinnitus and could I understand her and how did I get to the interview myself.

They can stick their benefits up their asses!

I know people who lie on their claims, stating they cannot drive and yet they have a car...

love glynis

sorry for venting x

Indeed Glynis - I know from reading your posts about your health conditions and completely sympathise. Life is tough and often unfair.

What would be really awful is if someone with very severe tinnitus was forced to go back to working full time in an extremely noisy environment such as a factory or construction site - where their tinnitus was likely to only get worse - because of one of these "management strategies" studies which suggest that tinnitus can be treated with some mindfulness and CBT.

That's one of the very real consequences of research money going towards "management strategies" research not long-term bio-medical research towards a cure.

 

[glynis]

@david c,

I cannot work full time and my job I worship -- it is loud but at the same time a great pleasure and uplifting working with children for over 20 years and over 37 years of first aid training.

I am lucky my home is paid for, children grown up and in a comfortable position financially.

I respect you want funds to go towards research but we need tinnitus sufferers to get the greatest of support as they need it now and support their Mental Health to stop suicides from happening.

Research needs a tremendous amount of money and funding but at the same time money set aside for the here and now.

I want to strongly campaign for doctors to ask tinnitus sufferers at early onset to ask the question
"would you like to talk to a counsellor about your tinnitus and how it affects you emotionally" rather than say "you just have to learn to live with it" .

love glynis

 

[Steve]

@david c keep it for another thread, this is about the expo and not your personal mission.

Off topic will be deleted.

 

[GregCA]

They can stick their benefits up their asses!

Indeed, it's a delicate problem as we move the needle such that benefits go to the people who need it, while those who fake can be detected and rejected. False positives and false negatives are a pain in the butt to squash!

Tinnitus has this particularly painful trait of being invisible. I asked the tinnitus expert I saw in San Francisco about disability claims and he told me what you would expect: there are very few tinnitus claims that succeed on the basis of tinnitus alone. What people do is put in a claim through a comorbidity, like depression, because the channels to go through that are already established, whereas tinnitus... well... you already know.

 

[Greg Sacramento]

Agreed.

NORD - National Organization of Rare Disease states that tinnitus is a rare disease because some are not debilitated from it and that some improve.

To get disability, a letter and medical file notation are needed from a GP supporting reasons why you can not work. Your GP must say that you can not work.

The US social security administration uses NORD.

Convincing your GP may take OSHA write ups on your workplace where noise can exceed 85 decibels.

Many employers will not allow noise blocking headphones depending on your employment position and this has no support from the Disability Act.

 

[Tinnitus Talk]

​

We would appreciate your donation towards the costs of running Tinnitus Talk and our awareness activities.​

​

For the Expo we designed flyers, t-shirts and other promotional materials (some examples below). Having all of it done and printed was not free, so any and all help is always welcome from our lovely members.

On top of this there were other expenses (e.g. travel, accommodation) that we paid out of our own pocket. Some of us took unpaid time off our day jobs to be able to attend the expo.​

​

 

[Julien87]

Thank you for your work!

 

[coffee_girl]

As far as I know, none of my friends with severe tinnitus can get in disability.