Book: Hyperacusis and Disorders of Sound Intolerance

https://www.amazon.com/Hyperacusis-Disorders-Sound-Intolerance-Perspectives/dp/1944883282/

This book was published half a year ago. Has anybody read it? Do you think there might be any insights that are worth the 70$?

 

Baguley has written some of the most stupid things on hyperacusis I have read in my life. I don't think it is worth the money.

Baguley wrote, together with Laurence McKenna, "Living with tinnitus and hyperacusis", and the book in my expert opinion as a long-time sufferer from hyperacusis, is a piece of rubbish.

Take into account that most of these academic types live on research grants, subsidies, etc and no matter what they have to produce a number of articles and books, and "teach" about their topic of research.

To sum up: don't waste the money.

 

There might be. You won't know until you read it. Publisher: Plural Publishing; 1 edition (March 15, 2018) That's quite recent.

I'm sorry to hear you're a long-time hyperacusis sufferer but that fact alone doesn't really make you an expert. I've got the book "Living with Tinnitus and Hyperacusis" and I liked it.

 

What parts specifically do you dislike about their view?

 

That's the problem with the world today. There are so-called experts on every field that never actually worked on that field, and there are "experts" on all sort of things that never experienced them. So who is an expert on hyperacusis? Someone who never had hyperacusis and just wrote a book full of wrong, dangerous or misleading statements?

 

The book implies that tinnitus and hyperacusis are similar and that there may be treatments that work equally for both. This is wrong because as of today there is no treatment that really works and T and H are not the same thing.

Here there are some of the notes I took when reading the book a couple of years ago:

Chapter 10, sound therapy, page 104, sound therapy for hyperacusis. There are two very dangerous statements in this section. The first one is suggesting to follow the "take the hits approach" when the book says "Wean yourself off the use of any hearing protection devices you use. These do have a role when using noisy machinery or if you want to go to a loud concert, but, when used in everyday life, they can increase your hypersensitivity even further." Well, the fact that it is suggested that people with severe H can use noisy machinery or go to a loud concert.. sorry to say this so bluntly, but seems plain ignorant; we cannot use noisy machinery or go to a loud concert. I agree with the second part "they can increase your hypersensitivity even further" if used routinely inside home or at quiet environments. I have used the "take the hits" approach myself and that's in part why I have not recovered from H in many years. The world is noisy and protection is needed until the LDLs are going up again and maybe back to 90 dbs at least; everyday there are sounds in excess of 100 dbs, loud motorbikes, traffic, construction noises. If a person who suffers from H does not use hearing protection if the possibility of hearing these very loud sounds exists, a relapse is very likely, losing hearing and making recovery more difficult is also very likely. It is irresponsible to advise that as a general statement in the book. Please take into account as well that there are very noisy cities out there (i.e. Delhi, Cairo etc). At any rate, in any city there is the risk of facing very loud and unexpected sounds.

The second statement is "one crucial thing to bear in mind with hyperacusis is that you are not at risk of damaging your hearing by exposing yourself to normal levels of sound. While the sounds experienced at a supermarket may be extremely uncomfortable, they will cause you no lasting harm." Generalizing like that is not a good idea. What are "normal levels of sound"? The PA systems at supermarkets can be very loud, and there are usually sweeping machines inside them that produce a high-pitched frequency, and other carrying machines, there is clanking of bottles etc. Of course I am talking about severe hyperacusis.

Page 120, section "preventing relapse". It is stated that "old ideas about diet and tinnitus have largely been discounted". It would be interesting to read why. In my personal experience with H, I have identified a number of specific items of food that make me feel a lot better. It was just by chance, but I believe there is a link between having certain kinds of food with antioxidant and anti inflammatory properties and feeling better or recovering better from sound offences.

The book generalizes a lot and does not really provide any answer on how to recover from hyperacusis. The general idea is, let time go by, try to be sensible using hearing protection, and we will see. And the book is plain wrong when it comes to the use of hearing protection, because it implies that you can walk around without earplugs and you are going to be ok, and that's not true. The book suggests a person with hyperacusis can use power tools or go to a loud concert with hearing protection and that's a big no-no.

 

Fascinating statements. I wonder how they view cases like us. I got my 2nd relapse from a restaurant that had safe levels (i'd say 75 to 85 dB) for 2 hrs. It's like they just ignore us because it does not fit in their model.

And I agree... our "normal" world such as supermarkets or walking the street has so many sounds that are above 85dB. How can they argue that those environments are safe?

Just one thing though, this book is from 2018, so there might be something new in there (or not)

 

Do they offer a solution to this madness? Then no.

 

Look what I found:

 

Does the book make a distinction from pain hyperacusis, loudness hyperacusis, and trigeminal nerve irritability from noise?

 

Maybe...

"This book highlights the importance of a multidisciplinary approach and discusses the importance in creating clear definitions of each type of DST. The concise chapters of the book make it easy to dip in and out of each subject area. The reader gets a detailed overview of a variety of research areas in manageable chunks."

 

I just skimmed through it. It just explains what we already know here. There is nothing about the underlying mechanisms of hyperacusis and tinnitus that you can't find just researching on the internet. Chapter 20 has an overview of potential treatments and it just explains hearing aids, cognitive behavioral therapy, and AM-101. Nothing about regenerating damaged parts of our ears. Here's a quote from chapter 20, "Tinnitus in the Future":

"Hosted by the British Tinnitus Association (http://www.tinnitus.org.uk), this group of clinicians, researchers,
and patients worked together to identify the top 10 research uncertainties in tinnitus, with the aim of focusing future research on these areas of interest. The priorities identified cen-tered on answering the following questions:

• What management strategies are more effective than a usual model of audiological care in improving outcomes for people with tinnitus?
• Is cognitive behavior therapy (CBT), delivered by audiology professionals, effective for people with tinnitus? Here comparisons might be with usual audiological care or CBT delivered by a psychologist.
• What management strategies are more effective for improving tinnitus-related insomnia than a usual model of care?
• Do any of the various available complementary therapies provide improved outcome for people with tinnitus compared with a usual model of care?
• What type of digital hearing aid or amplification strategy provides the most effective tinnitus relief?
• What is the optimal set of guidelines for assessing children with tinnitus?
• How can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?• Are there different types of tinnitus, and can they be explained by different mechanisms in the ear or brain?
• What is the link between tinnitus and hyperacusis (oversensitivity to sounds)?
• Which medications have proven to be effective in tinnitus management compared with placebo?"​

Nothing about a cure, or regenerating hearing damage. NOTHING. Just management strategies like CBT and/or drugs. This is a textbook that researchers and clinicians are reading. This is why there is no talk about a cure, because useless nimrods like the BTA are stuck up the ass of management strategies. I thought Pawel Jastreboff was our enemy, I think it is the ATA and especially the BTA.

@David, honestly. I really don't like you or your little association man. This book was published in 2013, well after successful experiments showing that regenerating mammalian hearing is a possible goal, and we now are into human trials for this. Maybe we'd be further along if the ATA and BTA would be talking about this and promoting it. I can really tell from your podcast that you will have absolutely no interest in this technology whatsoever until after some corporation funds it to be developed and trialed. You guys are seriously holding back progress. The chapter of this book I quoted is "TINNITUS IN THE FUTURE". Get with the program dude. Stop wasting our time with nonsensical non curative research and offensive femenazi comedians.

References
Baguley, D., & Fagelson, M. (2013). Tinnitus : Clinical and Research Perspectives. San Diego: Plural Publishing, Inc.

 

By using search tools and skimming through chapters, I cannot find any distinction made between different types of hyperacusis.

It appears their definition of what hyperacusis is very limited.

"Hyperacusis, an abnormally heightened response to sound, often accompanies tinnitus with a reported overlap of between 10% and 80% (Tyler et al., 2014). Hyperacusis is frequently rated as dis-turbing as tinnitus or more so. As is true for tinnitus, the pathophysiology of hyperacusis is incompletely understood, and both disor-ders likely share common pathological mecha-nisms (Pienkowski et al., 2014)."​

Check this out:





More garbage from the mainstream garbage status quo, and this is from 6 years ago.

References
Baguley, D., & Fagelson, M. (2013). Tinnitus : Clinical and Research Perspectives. San Diego: Plural Publishing, Inc.

 

Search for Liberman, Richard Salvi, Roland Schaette

These are researchers that investigate hyperacusis and the central gain mechanism that may have something to do with one subtype of hyperacusis. They should be mentioned don't ya think?

Also search the paper's keywords for central gain, noxacusis, synaptopathy, neuropathy, neuralgia, allodynia, demyelination.

Researchers often use these terms to describe issues associated with hyperacusis with pain and hidden hearing loss when they speak formal.

 

Mol Cell Neurosci. 2007 Jan;34(1):59-68. Epub 2006 Nov 20.
Bone marrow mesenchymal stem cells are progenitors in vitro for inner ear hair cells.
Jeon SJ1, Oshima K, Heller S, Edge AS.

https://www.ncbi.nlm.nih.gov/pubmed/17113786

This is from 12 years ago. Yes, there is still not any hard evidence that this will cure tinnitus, but guess what? All that other CBT, cutting the auditory nerve garbage, etc, isn't a cure either, but that stuff gets promoted and the actual thing that truly holds the promise of being a viable cure is being totally ignored, except by us, the real sufferers.

The only thing the ATA, and BTA really have to offer is advice on basically listening to a fan or going to see a shrink. What good are they?

 

Search the paper John, we can share this privately if you want.

 

They do talk about central gain theory.

This is the only mention of synaptopathy in the main body of text. Everything else is just citations from other papers talking about it.

"Repeated or long-term exposures increase the risk that the swelling will not diminish and will result in PTS and functional problems for listeners. The process by which synapses are damaged even as hair cell integrity is maintained is termed synaptopathy.Sound levels associated with synaptopathy are lower than those required to produce hair cell damage. After reporting 40 dB TTS following 105 dB SPL broadband noise expo-sure, Kujawa and Liberman (2015) deter-mined that hearing returned to normal, and synapses regenerated if the experimental ani-mals survived for 4 weeks following exposure. Also investigated by this group were the effects of longer-term moderate exposure levels on mice, and they employed a week-long 84 dB SPL noise focused in the 8 to 16 kHz region, which is in the middle of the mouse’s audible range. This level was chosen in an attempt to mimic the exposure levels encountered by humans in industrial settings. Although the reported TTS was less severe (on average <12 dB) as many as 22% of the synapses were affected (Maison, Usubuchi, & Liberman, 2013). The cumulative effects of several simi-lar and repeated exposures would most likely exacerbate the damage."​

It seems as if the discussion of neuropathy is limited because they cannot find a clear measure to correlate neuropathy to tinnitus.

"Electrocochleography has the potential to detect cochlear neuropathy but is a more invasive technique. Moving up the auditory pathway, measurement of temporal processing in the auditory midbrain by assessing neural phase locking at different depths of AM has been proposed as a possible correlate of cochlear neuropathy (Bharadwaj, Masud, Mehraei, Verhulst, & Shinn-Cunningham, 2015). This technique applied to tinnitus may improve our understanding of the role of cochlear factors in tinnitus and the relation between tinnitus and other problems of hearing (e.g., difficulty in hearing in noise) in which impaired tempo-ral processing is likely present"​

Looks like they quote Liberman's work.

"Similarly, Hickox and Liberman reported that mice exposed to acoustic levels that produced clear evidence of cochlear neuropathy, as well as first-order afferent degeneration, also showed exaggerated acoustic startle and PPI (Hickox & Liberman, 2014). Interestingly, they reported that this level of neuropathy did not yield convincing evidence of tinnitus using GPIAS."​

They do in fact discuss trigeminal neuralgia:

"An understanding of TTTS may facilitate the clinician’s explanations regarding the observation that patients with severe hyper-acusis report frequent or constant pain that is triggered by intolerable sound exposure. Trigeminal nerve irritability potentially leads to chronic trigeminal neuralgia, TMD, or myo-fascial pain syndrome (Ramirez et al., 2008; Schames, Schames, Boyd, King, & Ulansey, 2002)."​

However, they do talk about central pain:

"Central pain sensitization can develop from this chronic pain, as indicated by the development of muscle trigger points in the neck, shoulder, and arm in many patients with severe TTTS, hyperacusis, or ASD."​

References
Baguley, D., & Fagelson, M. (2013). Tinnitus : Clinical and Research Perspectives. San Diego: Plural Publishing, Inc.

 

LOL whoops! That book I have been quoting from is by the same authors but it is not the same book that this thread is about.
This is the book I've been quoting:



I'm very sorry about that. I will make up for this by getting a copy of the book called Hyperacusis and Disorders of Sound Intolerance through a library loan and conduct the same searches and see if that one has anything in addition to this one. I'd think it probably does.

 

Do they actually have this at your library?

This book is only about hyperacusis, while the other one was about tinnitus and hyperacusis. That's a difference... So I hope that it's not just an update.

I am curious about this "evidence-based clinical research, and case reports provides practitioners with avenues for supporting patient management and coping". Is there something there that we don't already know from other published research?

 

https://www.entandaudiologynews.com...ntolerance-clinical-and-research-perspectives

I smell TRT:
"A key strength of the book was the range of case studies which will remind clinicians of cases they have been involved with. The treatment protocol for fitting wearable devices provides a practical guide for audiologists. There is also discussion on other desensitisation approaches and the importance of counselling."

 

I bought the book.

There are 16 very interesting pages in the chapter "Peripheral Mechanisms for DST". They cite Liberman many times when discussing synaptopathy. They thoroughly discuss possible mechanisms for loudness increase as well as pain.

I will put in some paragraphs later, but this is definitely not just TRT/CBT babble.

The next ENT that tells me "Your audiogram is great, you cannot have any cochlear damage." I will hit in head with this book.

 

*Update*

I have not read all the chapters. My view so far is that as a book it is a schizofrenic mishmash. There are many high quality components though.

Each chapter is contributed by a different author. Some chapters are technical and/or science focused, such as the "Peripheral Mechanisms of hyperacusis" chapter. Liberman among others are cited frequently there. This is basically physiological causes for H.

Then there is a chapter from a patient who basically tells his success story and gives a one year treatment protocal for sound therapy. I don't mind a patient's story, but I do mind that there is no proof whatsoever that it works. Why not include stories of those that improved from sitting for three months silence? Or the Silverstein surgery? Etc...

The big issue with the book is that the main authors do not manage to combine all these "perspectives" in the final chapters. How does synaptopathy relate to sound therapy for example?

 

@Johan_L Do they separate hyperacusis sufferers into different categories? Like patients in category 3 or 4? Do they separate the cases into mild, moderate or severe groups?

Because I think that some advice cannot apply to everyone, that's what bothers me when I see someone talk and give advice in general rather than separate them so every person can know their limits.

Is this book worth a read, what do you think?

 

I am still amazed that people like Jastreboff managed to make so much money out of a scam like TRT and something so basic and un-scientific as white noise "therapy".

A big change in how ENTs view hyperacusis is that 8 years ago they would try to point the hyperacusic patient to some "treatment" they had likely read in a book or heard of at a conference, mainly TRT, and today they dont even attempt to give advice, they know that none of these approaches work to cure hyperacusis. Many practicioners just tell you there is no way to fix this and just advice to be careful with noise (this is the best advice they can give) and see how things go over the years.

My guess is hyperacusis has mainly to do with the cochlea and hearing nerve plus two extra factors, the central processing of hearing and the way the lymbic system affects sounds we hear (classifies them as "danger" mainly if one hears so loud). So we are far away from a solution, taking into account that even the visual nerve cannot be repared today, and hearing issues are way under-researched and there is less money for research as compared to cancer, visual problems etc

 

@Johan_L, is there a section in the book written by Dr. Gayle Whitelaw?

I found her name linked to this book from ResearchGate. I am currently seeing her at the Ohio State University speech and hearing clinic for hyperacusis treatment supposedly. Currently, all we’ve completed is a new patient interview.

Honestly, pretty discouraged. She brought up hearing aids though I have no visible losses on audiometry in the frequency range hearing aides work up to. She of course referred me for CBT. She said she’d get in contact with the author of the book about my case as she boasted they are good friends and he is asking her to write a paper for him. She also said she’d get in touch with a neurologist who is familiar with tinnitus to see about getting me in to see him.

It’s been over a week since I saw her and I’ve heard nothing so far. Not surprised though. When I was initially referred I was told there was over a year long waiting list. Thankfully for me (not those on the waiting list), my ENT has pull with her and got me an immediate appointment.

If I receive any further information or have any appointments I’ll update. We shall see...

She said I was the best “interviewee” she had because I was familiar with the terminology and able to describe my issues in great detail. She said people usually don’t even know they have hyperacusis when she sees them. However, during the interview she did seem to get a little perturbed when I questioned things such as the use of hearing aids and TRT and referenced newer research stating for pain hyperacusis it wasn’t an advisable route. This somewhat worries me she will not prioritize me as she said during the appointment.

 

@GoatSheep, how did your experience end up going with the offices of Dr. Whitelaw? I have an appointment soon. Did you ever try hearing aids and did they run any tests that I should avoid due to my severe tinnitus and hyperacusis?

 

My experience with Dr. Whitelaw was very bad. Yours may not be the same.

My original visit was prior to the pandemic. I was assured at this intake appt that she would not leave me hanging as she knew I’d had issues getting any help up to that point.

I then never received follow up other than a write up of some recommendations. I called her office and emailed her secretary and her personal email several times. I received no response.

I just recently asked my ENT who had referred me about it and got a follow up from Dr. Whitelaw saying it was due to the pandemic.

So basically I got lost in the shuffle for two years is what she implied. Saying that the office was closed during the time I contacted.

There was no indication of this. No message saying the office was closed when I called or anything. Even if it was the case I feel I should have received follow up once things were back in order.

I hope you have a better experience with Dr. Whitelaw. She is the only “expert” in Columbus I know of.

 

Sorry to hear that @GoatSheep and thanks for the info. Did you ever try hearing aids from her?

 

I have no hearing loss in a range detectable on audiometry that warrants hearing aids. All of my losses are ultra high frequency. Or at least were at the time of my visit. I haven’t had an updated audiogram in 2 years. Right now I have a severe noxacusis setback so I couldn’t even if wanted to.

 

I have loudness hyperacusis (not pain hyperacusis) and my standard audiogram last November didn’t show any losses.

However, I had a worsening about 3 months ago and haven’t had an audiogram since. I now have high frequency tinnitus that is not maskable usually. I’ll have to talk to the doctor and get a new audiogram, I suppose. I was thinking of doing an extended audiogram to check the high frequencies too.

Do you think it’s possible a hearing aid will help me @GoatSheep even with loudness hyperacusis? Or is it only advisable to avoid them if you have noxacusis?

Thanks for the help.