Research to Examine the Support for People with Hearing Loss Who Experience Tinnitus

[valeri]

British tinnituseless association

 

[Silvio Sabo]

Yes, making serious structural changes to one's life, is difficult, time consuming, and requires a lot of commitment. However, I don't think that deciding that meditation is a worthwhile pursuit requires any "belief" in anything other than empirical, rational science. It's certainly true that the historical contexts for meditation mostly wrap it up in some kind of theology, but in the modern world, the number of atheist mediators are... legion. Meditating at its core is nothing more complex than willfully paying attention to each moment as it occurs. This does not imply a belief in karma or any other dogmatic, woo-woo thing.

By belief I didn't mean belief in a theological standpoint like believing in Buddha, but rather believing in the practice. I'm guessing that it takes more then a couple of sessions of meditation to see results no matter who does the study and how they preform it.

My bet would be that, if it now works, it would take months if not years. It takes devotion to keep doing something for a long time without any noticeable progress.

Skepticism is healthy and should be at the core of any scientific inquiry; however, if you don't believe that there are a shitton of skeptical rational people who are fascinated by this research, I would encourage you to look a little deeper, because there are a lot of us out there.

I have tried meditation. I really have. I have been to about 10 sessions just in the last couple of months with a therapist, I've tried it at home and really put in an effort but it simply can't do it. It puts me off when she starts talking about things like energy spreading from my toes up to my head or saying things like "believe that the floor will hold you". Like I would be able to break the laws of physics and fall through it. Or things like "fell your own body" or "when I meditate I feel myself within my self". Er....whaaat!?

And when you talk to these people for more then a few moments you can tell that they have no idea what they are blabbing about. You are always told that all of your problems can be fixed with this or that or that your problem with this is because of that and none of it makes any sense and I've taken courses in human physiology in my studies. And most of the time they contradict each other and sometimes even them selves (pretty much like religious people do).

I've tried with different therapists, group sessions, hypnotherapy and so on and it's allways the same thing. They all talk about energies surrounding the body and other utter BS (none of which is measurable by the way). One of them even said I had no blood flow in the right part of my head by putting her hands on my head for a few seconds. Now I'm no doctor but if you don't have any blood flow in a part of your body, wouldn't the cells in that area die and molt away?

And most of these people that I have met was in clinics and hospitals that aren't private. So they were no private gurus or anything like that. But people that in some cases had degrees in physiotherapy or similar.

I am afraid I don't follow your line of reasoning about drugs; if you haven't noticed, I am deeply, deeply skeptical of pharmacological interventions as the exist in the current context of profit-oriented drug research, and I'd also be shocked if cocaine did anything for tinnitus other than exacerbate it because it decreases the inhibitory mechanisms which are responsible for keeping tinnitus in check.

All I'm saying is that if one is in a state of happiness or euphoria one does not have any issues with things like T. Many people who meditate describe the experience in this way just like people who attend churches might describe it in the same way, like being in touch with God and feeling Jesus presence or something.

But what about us who simply aren't as ignorant (Yeah I said it! ) and don't believe in this sort of mumbo jumbo. I have tried hypnosis and it just doesn't work on me. I am physically unable to reach such a state of, call it relaxation, where this would be made possible. What about the likes of me?

 

[undecided]

The British Tinnitus Association (BTA) has received £134,039 from the fund's Reaching Communities programme to hold one-day information events which will help sufferers cope better with the condition.

Another £134,039 down the drain.

 

[Silvio Sabo]

Another £134,039 down the drain.

That could have paid a couple of researchers in a lab for a whole year!

 

[Danny Boy]

That could have paid a couple of researchers in a lab for a whole year!

They're only wasting money on this, to make it look like they are doing something....Bloody fund drug treatments, invest in Autifony you'd make a large return at that.

 

[Christian78]

They're only wasting money on this, to make it look like they are doing something....Bloody fund drug treatments, invest in Autifony you'd make a large return at that.

You are overly optimistic i think. What would happen if in November autifony declare failure, you are ok, you fixed it with trobalt, so it won't hit you so much...

You do pump people hopes to high heavens. Will you be there to catch them if autifony failed?

+ you look cute on that pic

 

[Danny Boy]

You are overly optimistic i think. What would happen if in November autifony declare failure, you are ok, you fixed it with trobalt, so it won't hit you so much...

You do pump people hopes to high heavens. Will you be there to catch them if autifony failed?

+ you look cute on that pic

Well, Autifony is looking hopeful at the moment. And if they do fail, then well, they fail, but I don't know at the moment, I just prefer being hopeful. And thanks xxxxxx

 

[linearb]

I'm going to reply to you sort of in reverse order

But what about us who simply aren't as ignorant (Yeah I said it! ) and don't believe in this sort of mumbo jumbo. I have tried hypnosis and it just doesn't work on me. I am physically unable to reach such a state of, call it relaxation, where this would be made possible. What about the likes of me?

Well, I don't believe in what you're describing as mumbo-jumbo, I don't think. That is, to the extent that I think meditation is useful, I believe its effect is related to neurotransmitter levels, specific kinds of cortical firing (and the effect this firing has on the HP axis / stress response / cortisol / etc).

I also don't think that "relaxation" has much to do with meditation. That is, if I am relaxed, and meditating, then I'm more aware than usual of how relaxed one is -- but by the same token, if I'm agitated, and meditating, then I am more aware than I usually am of my agitation. And, I think people who do achieve a relaxed state with meditation right off the bat, are probably setting themselves up for failure, because when things are pleasurable then the normal human response is to form an attachment to them, which is then missed when the pleasure has ended -- which seems exactly contrary to the sort of equanimity that you're trying to achieve with mindfulness work.

All I'm saying is that if one is in a state of happiness or euphoria one does not have any issues with things like T. Many people who meditate describe the experience in this way just like people who attend churches might describe it in the same way, like being in touch with God and feeling Jesus presence or something.

I think people who are trying to attain peak experiences through meditation have different goals than I do; again, peak experiences are always fleeting, and attaching to that just creates more suffering and not less. But, I certainly agree that sometimes people report such things happening during intense meditative practice. It may well have a shared neurology with other kinds of ecstatic religious experience, but chasing after such things doesn't seem wise to me.

I've tried with different therapists, group sessions, hypnotherapy and so on and it's allways the same thing. They all talk about energies surrounding the body and other utter BS (none of which is measurable by the way). One of them even said I had no blood flow in the right part of my head by putting her hands on my head for a few seconds. Now I'm no doctor but if you don't have any blood flow in a part of your body, wouldn't the cells in that area die and molt away?

Yes, this sounds like utter rubbish to me. There are plenty of new-age charlatans out there trying to make a small fortune off of claiming to have some secret knowledge. My main sniff test is that if someone is trying to charge me money to help me find "inner peace", then they are almost certainly selling something they do not possess.

Meditation shouldn't cost much money -- it's very simple, there is no need for a man behind the curtain.

I have tried meditation. I really have. I have been to about 10 sessions just in the last couple of months with a therapist, I've tried it at home and really put in an effort but it simply can't do it. It puts me off when she starts talking about things like energy spreading from my toes up to my head or saying things like "believe that the floor will hold you". Like I would be able to break the laws of physics and fall through it. Or things like "fell your own body" or "when I meditate I feel myself within my self". Er....whaaat!?

It definitely takes effort. I was incapable of just sitting for a long time, so I used various guided meditations, mostly body-scans and other things that are very attention based and not talking about woo-woo energy.

I think (based entirely on my own experience and people I have spoken with) that most people will probably start to notice some benefit if they can commit to even 10-15 minutes of daily meditation practice for a period of 1-2 months. That definitely takes a considerable amount of effort to really follow through with, but I think some of that just depends on how miserable you are. When I am happy, engaged with my life, and all is well, then taking that time every day can be pretty hard. But, when I was literally so unhappy that I was spending hours a day thinking about how unhappy I was, I was desperate, and 15 minutes a day didn't seem so bad.

My bet would be that, if it now works, it would take months if not years. It takes devotion to keep doing something for a long time without any noticeable progress.

Yes, it does. It's not a drug, it's not a quick fix -- but, neurology is plastic to a point that I still find surprising. A UMass Amherst study showed significant and predictable changes in the volume of the amygdala after 8 weeks of daily practice. Granted, this was in a group of people with chronic stress problems who were therefore desperate and willing to do 45 minutes a day, which is more than I think is necessarily wise to try to commit to off the bat, but, I think it's very interesting that the size of a brain structure can change to the point that it's obvious on fMRI after only 8 weeks, that's not really very long.

So, yeah, the shit is hard! It's simple, but it's very difficult to just keep doing. But, intuitively, it seems to me that for people who maybe have bad problems and are spending hours a day ruminating on their bad problems -- 10-15 minutes every morning shouldn't be that hard. It's not like training for a marathon or something.

 

[ruben ruiz]

Meditation should be a part of everyone's routine. I do it before bedtime trying to relax. Sometimes its
very difficult, the screaming T takes care of that. Tonight its just screaming. I wanna pull out brains and stomp on them. I hope this goes back down. Its amazing how it can be so quiet then do a 360 and come out blasting.
Yes when your able to relax do so.

 

[Nic]

Hello everyone again. Wow, I wasn't expecting this sort of response, so hopefully I can explain a little bit more about the research in question, why we are supporting it, how we are funding it and what we expect to be able to do with the results.

I think some of the comments made perhaps have arisen from me not really explaining properly what the project is about, who it is aiming to help, and what we hope to achieve, so I will address those questions first.

Back in 2011/2012, with the help of the tinnitus community - patients, carers, clinicians and researcher, we undertook an exercise under the aegis of the James Lind Alliance http://www.tinnitus.org.uk/JLA to identify the Top Ten Research Uncertainties for tinnitus. These can be seen here in full, but one of the priorities was "how can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?" - because as you no doubt understand, the existing strategies (sound therapy, relaxation, CBT, counselling, providing information) can be more challenging or even impossible to provide for someone with a profound hearing loss. Many of you will know the upset of being told, erroneously, by a medical professional "there's nothing you can do, learn to live with it" - well, for some people with a profound hearing loss, there really is nothing for them, and that's unacceptable. It was a question important to the tinnitus community, and important to us.

The aims of the survey - and this is only the first stage in this project - is to identify the scale of the need for the Deaf community; to identify what people who are profoundly Deaf currently manage their tinnitus; to identify what support (if any) is being offered to people who are Deaf/have profound hearing loss, and then to find out what those with such severe hearing loss actually want in terms of resources and support. The results of this survey will be used to publish a report which we can then use to help in the development of improved services and resources.

Given that at this point it's pretty well documented that tinnitus is not an inherent result of HL, but is instead the result of problems in several brain structures, which have been understood with more and more specificity over the past two decades based on fMRI studies, I am curious to know why the BTA thinks that this is a useful line of inquiry.

We're not disagreeing with this linearb, however, what we are trying to address is how people with a profound hearing loss can manage their tinnitus successfully when current support and resources are limited. We are asked time and again when we attend community events what we are doing to help the Deaf community, and this survey is the first step in putting a support toolkit together.

How much money did the BTA give to this survey?

All the money for this project has been raised by the BTA through approaching grantmakers and trusts. No BTA reserves or member donations have been used. These grants are awarded on a competitive basis, with the grantmakers assessing the likely benefits and impacts of the research they are funding

...there should be more focus and funds for an actual cure, something the BTA should strive for.

We remain fully committed to research for a cure - as you can see from this quote from David Stockdale when we launched our Six Year Research Strategy: "The BTA aims to ultimately find a cure for tinnitus but also seek to prove the efficacy or otherwise of current treatments and seek a better understanding of the impact and burden of tinnitus on the UK."

I'm just not sure what it will take for ATA and BTA to wake up and realise that we need not another survey but a cure/relief of some sort.

In the recent Q&A, we were challenged by you valeri on the same point and I responded there, my answer then still stands, it's post #14 if anyone is interested. https://www.tinnitustalk.com/threads/british-tinnitus-association-q-a.7746/

Dont tell me the German Tinnitus League, the British T Association and the American T Association, do not have enough combined money to fund such a trial

We don't, seriously, we don't. It takes millions of pounds to get a drug trial underway. Our income last year was just over £600,000.

WHY DOES THE BTA IGNORE POTENTIAL DRUGS FOR TINNITUS?

We don't - we're following both the Auris Medical and Autifony trials closely, and for both we assisted in publicising the calls for volunteers. The minute there's news, you can be sure we'll be talking loudly, spreading the word, good (hopefully) or bad (hopefully not). We just can't ourselves support drugs trials.

If I were to organize an ANTI BTA rally outside their UK headquarters, how many T sufferers would join me?

Dan, we'd welcome you to our office (calling it a headquarters gives it a glamour it doesn't have!), and you can have a chat with us about research, support, whatever you wanted - we could probably stretch to tea and biscuits. This offer is open to all of you - we do take your feedback on board.(BTW, the staff contribute for the tea and biscuits, we're not spending money that would otherwise go on research!)

@Nic , can you honestly tell me that this research isnt intended to introduce more people with hearing loss to hearing aids?
Please answer this question. Thanks you.

Dan, the people we are talking about have a profound hearing loss, so either they cannot be aided, or have already been offered a hearing aid. This research is not about correcting hearing loss, but about tinnitus management.

This money need to be spend somehow why would they be spent on tinnitus research when they can be spend for something useless.

The Big Lottery Fund doesn't support medical research. However, by supporting these events with the £134,000 grant, this means we have £134,000 in our reserves to spend on research over the next 3 years. So everyone wins - those struggling with their tinnitus now who want support, and those looking for a cure.