Who Are the Tinnitus Experts?

[dboy]

Hi @glynis,

I don't think we need to put a thread to bed just because of a disagreement. Tinnitus Talk has always been (or at least always used to be) a forum for discussion and exchange of ideas as well as support. This thread/title actually raises important issues around what constitutes expertise and I think there is probably more to be explored there if we can do it without antagonising each other. I apologised to Michael because I don't want to cause any offence to anyone and I recognised a lack of consideration for that in how I expressed myself to him. But also I really don't want the relevance of the points I made to get lost in a needless battle of egos.

I still think it is reasonable to ask the basis on which a particular piece of advice is given, and find it intriguing that no answer has been given. I appreciate that my concerns are not those of everybody on the forum, but diversity allows us to learn from each other, as well as making life more interesting. Lets not shy away from open exchange of ideas.

Best wishes.

 

[glynis]

Ok @dboy,
Im not getting involved as its not my thread..lots of love as always glynis

 

[Ken219]

As a long time sufferer I know one can get angry and lash out at the next person that said hello. Tinnitus is a terrible condition. Mine is loud and has sent me to places I'd never thought about. But I'm still here. Lets not attack each other. God bless and appreciate today.

 

[dboy]

Ok @dboy,
Im not getting involved as its not my thread..lots of love as always glynis

OK, love to you too. I don't mean to blunder around like a bull in a china shop.

 

[Danny Boy]

We are the experts .

We are indeed

 

[Telis]

@dboy all valid points.

@Michael Leigh stop acting like a arrogant a hole and listen to what dboy says, you might learn something. I've asked you to elaborate on your know it all posts in the past, you can't even be bothered to support the info that you hand out, instead you whine about being "shot down" when people ask you questions about your advise. Get a grip and check your ego at the door.

 

[dboy]

@Telis, thanks very much for your support.

The mistake I made was letting what I said seem to be about Michael himself rather than the principle. The principle was that if you are going to advise someone to go against their own experience, to abandon what they say is "the only relief" that they get, or if what you advise might involve parting with money, then you also say the basis on which you give that advice.

This allows readers to properly evaluate for themselves how far they want to follow the advice. We need to remember that advice given on the forum is not only read by the person to whom it is directed. This is the internet and many other people will also read it who may be in a similar situation. The threads remain available and will be searched and read in the future so their influence is wider than that of a telephone call or other one-to-one support.

The principle of stating openly the basis for assertions has always seemed fairly self-evident and uncontroversial in the way that discussion has gone in the past on Tinnitus Talk, and has seemed one of its great strengths to me. I doubt I would have ever joined or visited as often as I have if this were not the case.

Experts are people who expect their pronouncements to be accepted without question and without need for explanation or justification. Because this is potentially dangerous for others, society almost always requires its 'experts' to have qualifications that are hard won and verifiable. Even so, 'expertise' is open to abuse and folly, as Michael's example of the tinnitus expert in his original post shows.

Let's not be experts. Let's just show each other the courtesy of saying why we believe something might be helpful, and being open to dialogue about that in the spirit of equality that the internet was founded on.

 

[noisebox]

I understand what dboy was asking. As Michaels posts are very detailed and also so obviously a fan of sound enrichment he wanted documentary evidence to support the theory. All I can say is here in the uk in my experience they are obsessed with the theory that they are the only way forward. It may be true or anecdotal. Personally when a health worker tells us to use them I believe that is because they simply have nothing else to offer.
But I personally do find comfort with my clock as it distracts me if needed. At one point water sounds did but then annoyed me so I stopped. I am sticking with my clock, trying to relax, trying to reduce blood pressure, eating healthy and hoping it will get better again.

 

[dboy]

I understand what dboy was asking. As Michaels posts are very detailed and also so obviously a fan of sound enrichment he wanted documentary evidence to support the theory. All I can say is here in the uk in my experience they are obsessed with the theory that they are the only way forward. It may be true or anecdotal. Personally when a health worker tells us to use them I believe that is because they simply have nothing else to offer.

Thanks noisebox, I got a very similar impression to you about the way the NHS handles this. Best of luck with the things you are trying - I hope you find something that works.

 

[PaulBe]

All I can say is here in the uk in my experience they are obsessed with the theory that they are the only way forward. It may be true or anecdotal. Personally when a health worker tells us to use them I believe that is because they simply have nothing else to offer.

I think you're right and what you say is applicable here in Australia as well. Audiology owns the debate over treatment now, and ENT is happy to keep it that way. Its all sound enrichment and CBT, which may be well and good for some, but there is still no serious diagnostic effort at the Institutional level to rule out reversible causes, which I thought was an ethical imperative in medicine. Basically they are happy for the symptom to be the whole disease in this country, and half the audiology chains (one I know of invested in by ENTS no less) are Neuromonics franchise holders. Profitable treatments will always trump cures.

 

[japongus]

I think you're right and what you say is applicable here in Australia as well. Audiology owns the debate over treatment now, and ENT is happy to keep it that way. Its all sound enrichment and CBT, which may be well and good for some, but there is still no serious diagnostic effort at the Institutional level to rule out reversible causes, which I thought was an ethical imperative in medicine. Basically they are happy for the symptom to be the whole disease in this country, and half the audiology chains (one I know of invested in by ENTS no less) are Neuromonics franchise holders. Profitable treatments will always trump cures.

Here in Spain, private medicine isn't by law allowed to ''carry out experiments'' like ''giving me local anaesthetic just to see what happens'' like in the Brazil case of the 21 year old women who was cured by tenotomies of her tinnitus, and I have to go to a university hospital, which are rare as fuck and they'll probably not be interested. Funny how what is allowed by law is garbage like laser, neuromonics, TRT or those shameless CBT shrinks with their bullshit clerical rhetoric. None of them of course will have bothered to even read hyperacusisfocus.org to realize that none of those ''treatments'' have any proven double blind results.

 

[japongus]

Noisebox.
I am sorry hear of the discomfort that you are in. As you know something has caused this increased sensitivity to your auditory system. I am quite taken aback by your audiologist's attitude to be honest, and I suspect she doesn't have tinnitus like so many hearing therapsists and audiologist do who treat tinnitus patients. That way, they can at least have some understanding of the condition and what their patients are going through. My hearing therapist was born with tinnitus.

If it is a medical condtion that's caused this increased sensitivity then what I propose as a solution may not work. Although hyperacusis can cure by itself there is no assurance that it will. The best way to cure or reduce the sensitivity to the auditory system is by using sound enrichment. Now I understand that you may not want to do this but, that is what Drs and hearing therapists advise. If you try to avoid everyday sounds by keeping in the quiet, it is likely to make your hearing more sensitive, which will increase the hyperacusis.

As you know hyperacusis is usually treated by wearing white noise generators, but counselling is also recommended otherwise the treatment doesn't usually work. If you are unable to get this treatment. I advise using a sound machine at night by the bedside. Some people prefer silence but anyone with intrusive tinnitus or hyperacusis is not helping themselves by sleeping in a quiet room. The sound machine supplies the brain and auditory system with sound enrichment whilst in deep sleep. Over time the hearing receptors or pathways in the brain start to close. By not using sound enrichment these pathways continue to open making the auditory system more sensitive, which result in make the tinnitus and hyperacusis more intrusive during waking hours.

Using a sound machine at night takes time to get used to at least 4 weeks. Start by turning down the volume until it can just be heard and not drawing attention to itself. Over the next week or two slowly increase the volume but be careful not to mask or coverup your tinnitus. The brain cannot habituate to tinnitus if it cannot hear it. That's why totally masking tinnitus doesn't work.

Another thing that many people do not realize is this: If hyperaucusis is present and not cure then tinntius will always be a problem. Some people believe they have habituated to their tinnitus not realizing they haven't cured the hyperucisus. This is one of the reasons they continue to get spikes in their tinnitus, because the auditory system is hypersensitive.

Nature sounds are usually the best at night coming from a sound machine rather than music. However, we are all different, so if you prefer to drift off to sleep listening to music that's fine, just make make sure whatever sound source you use, it plays throughout the night until morning.

The idea is to desensitize the auditory system by using sound enrichment at night and during the day, this is the best way to cure the sensitivity to sound.

Michael

This is an example of why sound therapy is so under suspicion. I recommend everyone go to hyperacusisfocus.org which has a summary of the best research papers on sound therapy to see why.

But your write up is also a good example for two reasons. One is that sound therapists can't seem to agree about how important it is for the sound therapy to not exceed the tinnitus levels itself. One camp claims ''the brain cannot habituate to the tinnitus if it can't hear it'', and the other believes that sound therapy is about increasing the sound therapy progressively as much as you can, well not ad infinitum of course but rather, and what a coincidence, up to the point where society at large has agreed that sounds might cause damage, around 85db. And the other reason is kind of hilarious, and it is myself. My muscle spasms induced by sound are so bad I have to sleep with constant low frequency sound to drown out external sounds and not get woken up every 5 minutes by a bird, dog or car. I am clearly a great example of ''tinnitus'' at its extreme and an absolute proof that sound enrichment at night, and most probably sound enrichment in other forms, is nonsense. And that is probably because I really have myoclonus of muscles that when tensed up can produce a continuous sound, but have I been looked inside to verify this possibility? Of course not, I've just been told its tinnitus and to do sound therapy, to join le club. In fact, in the largest case study on middle ear myoclonus applied to 58 patients, where 49 where treated with reassurance and muscle relaxers and the remaining 9 were subjected to middle ear muscle tenotomies, they claim that this kind of tinnitus emerges at an early stage of life, whereas sensorineural hearing loss tinnitus does so later in life.

 

[Jptsr1]

My opinion is that it is always best to be wary of anyone who claims to be an expert. Most people who know anything much about anything of consequence are acutely aware of how little they actually know. People who claim to be experts are probably guilty of hubris in my opinion/experience.

Winner Winner chicken dinner! Very well put.