How Things Have Changed Over My 30 Years Living with Tinnitus

My tinnitus started about 30 years ago in 1986 after a bad car accident. I was worried. I saw my family doctor. He sent me to an ENT. He told me it wasn’t from my car accident. I was mad. He told me nothing could be done. Learn to live with it. I was sad. I became an audiologist. Learned nothing could be done since I had normal hearing. (If you had hearing loss, you could be fit with an analog technology hearing aid full of static.) I became more worried, mad, sad. Realized I had to figure out how to live with my T on my own.

I also had hyperacusis (sound sensitivity), but most people still don’t know it even has a name. Hyperacusis is definitely part of tinnitus world. The forgotten fraternal twin of tinnitus. It never seems to be included during tinnitus awareness events.

Hyperacusis is reversible for the most part. There is no cure for tinnitus. Despite cure $ale$. But tinnitus/hyperacusis world has changed a lot since 1986. Lots of people have tinnitus and hyperacusis from children to adults. Scientists have found bilateral tinnitus may be hereditary, especially in men. Scientists have proven both tinnitus and hyperacusis are from an overactive hearing system in the brain. Benign. Coping tools and therapy are similar for both. There are lots of options for people with tinnitus/hyperacusis distress from self-help coping tools to tinnitus/hyperacusis therapy. Nobody should be told nothing can be done. Nobody should be told just learn to live with it without being given information on how.

For various reasons, finding coping tools to help with distress is still trial and error. What will help you? We’ll know better when questions like these have a scientific answer:

  • What is the prevalence of tinnitus and hyperacusis in children?
  • Are there different types of tinnitus or hyperacusis? With different patterns of brain hearing system overactivity?
  • Which sound type works best? (e.g. coloured noise, relaxation music, synthesized music, tinnitus match, personal music library)
  • Does it matter when you listen to sound (e.g. as needed/recommended, awake, asleep, awake and asleep)?
  • Which tinnitus/hyperacusis therapy works best? (e.g. Progressive Tinnitus Management, Tinnitus Retraining Therapy, Neuromonics Tinnitus Treatment, Cognitive Behaviour Therapy, etc.)
  • If you have a tinnitus match (frequency/intensity) would noise cancellation technology work on this brain overactivity? By listening to the opposite of your own T ‘sound wave’?

There are other issues. I have turned into an obsessed tinnitus world stalker (Remember hyperacusis is part of that world). I do continuing education every year as an audiologist, taking every tinnitus related course. I follow tinnitus world on twitter and evidence-based websites and research. But change comes slowly with tinnitus.  Great research is happening. But it takes time for scientific evidence based research, especially if starting with animal trials, to evolve into something clinically available for the tinnitus/hyperacusis community. Important issues and highlights include:

TINNITUS AID

Why do tinnitus sound therapy manufacturers call their product different names? I think it’s really confusing for their tinnitus/hyperacusis target market.

For Example:
Product = car
(Note: We don’t call a car a 4Roller or ZoomZoom.)
Different models (e.g. compact, sedan, SUV)
Many manufacturing companies (e.g. Chevrolet)
Each has own product line names (e.g. Corvette)

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Product = hearing aid
(amplification for people with hearing loss)
Different models (e.g. in ear, behind the ear)
Many manufacturing companies (e.g. Phonak)
Each has own product line names (e.g. Lyric)

Product = tinnitus masker, noiser, sound therapy, etc.
(at-ears sound therapy for people with tinnitus and/or hearing loss; these could also be used for hyperacusis)
Different models (e.g. in ear, behind the ear, headphones)
Many manufacturing companies (e.g. Otoharmonics)
Each has own product line names (e.g. Levo)

Wouldn’t it be better for tinnitus world if we actually have one name for a wearable sound therapy product used directly at the ears? The term masking is from the 1990’s. Who wants to wear a noiser? In my opinion, other product names in use are pretty lame. My vote is for tinnitus aid. So we know what different manufacturers offer (e.g. hearing aid, combo hearing aid and/or tinnitus aid, tinnitus aid). If deciding on a tinnitus aid, people should consider manufacturer info: what sound type(s) does it have? What is the recommended listening time? What features does it include? Is that what you want to try?

OBJECTIVE TINNITUS/HYPERACUSIS TESTING

Objective brain imaging tests are showing hearing system activity differences in people with T and H. Functional MRI is being used in legal cases to prove whether a person has T. As research continues using brain imaging testing, could therapy become more targeted based on what pattern of brain activity the person with T or H has?

TINNITUS/HYPERACUSIS PREVALENCE IN CHILDREN

I’ve seen different numbers in the news and on websites. Recent research reviewing over 1000 studies on this question did not find the answer because the studies used different questions. There was no consistent standard criteria for presence of tinnitus or hyperacusis. In other research, one study found only 6.5% of children spontaneously report tinnitus. So how do we know if nobody asks? Another study asked if children had heard tinnitus in the past year. Answer was 55%. I’m surprised it wasn’t higher. When put in a sound proof booth, only 29% heard constant tinnitus. Usually kids don’t worry over tinnitus or complain about it. Adult prevalence is about 15%. Is it really higher in kids? Would 10% higher be typical for children? We’ll find out when all the studies ask about it consistently using standard criteria.

TINNITUS EVALUATION

Is tinnitus world consistent in how tinnitus or hyperacusis is evaluated? From family doctor (GP) to ear specialist (ENT) to audiologist? It can depend on who you see.

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UNIVERSAL OUTCOME MEASURE

Remember all those questions that haven’t been answered scientifically yet? This is one of the big reasons. There is still no universal outcome measure for tinnitus (or hyperacusis) distress. There are several being used by researchers and clinics offering tinnitus services. Some might use the Tinnitus Functional Index (TRI). There is the Tinnitus Handicap Inventory (THI): 25 questions; scored from 0 – 100. THI-S with only 10 questions is as valid and reliable as the THI. THI has been thoroughly studied and translated into many languages. Some research uses the Tinnitus Reaction Questionnaire (TRQ): 26 questions; scored from 0 – 104. Some use completely different outcome measures. So when Research Team 1 finds 20% improvement on THI for a specific tinnitus therapy approach, and Research Team 2 finds 20% improvement on TRQ for a different tinnitus therapy approach, which approach is better? Same problem for clinics offering tinnitus services. If you improve 50% at Clinic 1 using THI and 50% at Clinic 2 using TRQ, which clinic helped more? Nobody knows because it’s comparing apples to oranges. Researchers and tinnitus/hyperacusis care providers need to pick one single universal outcome measure. One with a valid shorter version for clinics would be nice. So we could compare apples to apples.

There isn’t a universal outcome measure for hyperacusis.

Are children distressed by tinnitus or hyperacusis? Does therapy help them? Who knows. No universal outcome measures.

My vote is for THI-S, at least clinically. Maybe a consistent visual analog scale for children with tinnitus/hyperacusis and one for adults with hyperacusis. And change the ‘c’ word severity category on the THI/THI-S. I was taught never to say the ‘c’ word. The THI score puts you into four categories of distress: mild, moderate, severe, catastrophic. When I had severe tinnitus distress, if somebody told me it was catastrophic, I probably would have killed myself. I was teetering on the edge anyway. Nobody needs to hear their tinnitus involves great damage or suffering. If they wanted to know, I told clients their tinnitus was ‘very severe’. The last thing people need is unnecessary negativity.

HEARING PROBLEMS

If you have hearing loss, the first tinnitus coping tool is still to aid your hearing. But now devices are digital. Lots more features including wireless connectivity, built-in tinnitus aid, apps, etc.). Research has found that people with tinnitus have a harder time with a listening task than someone with no tinnitus. It’s like having a mild hearing loss, so you may need to use some communication strategies if you have tinnitus and normal hearing. If you have tinnitus and hearing loss, I would predict you would have more trouble with a listening task than someone with hearing loss alone.

VAPING

There is concern about e-cigarettes or vaping causing hearing loss and/or tinnitus because of an ototoxic (ear damaging) ingredient called propylene glycol. The Hearing Review, Healthy Hearing and the FDA have all warned consumers. Research on this will be challenging because of the number of factors to consider including frequency of vaping and whether there are any differences in ear damage from different vape juices (e.g. no nicotine, nicotine at different concentrations). Plus can they use human trials if they are testing whether it might cause you permanent damage?

PERSONAL HEARING PROTECTION

Listening to music or noise at 80 – 85 dB and above can cause hearing loss (and/or tinnitus). This type of hearing loss is painless and permanent (if it continues over time). You don’t know the ear damage has happened until it’s too late. You end up with grandma or grandpa ears needing hearing aids. As always, many types of earplugs and earmuffs are available. From basic to special features including level-dependent, built-in amplification or 2 way communication. Some hearing protection manufacturers are using noise cancellation technology in their product which sounds interesting. Note that military and workers with hazardous noise exposure must be provided appropriate hearing protection.

For music, people should use hearing protection when going to concerts, nightclubs or other places with loud music (especially amplified). There are musician’s earplugs available. But if you’re not picky over a bit of distortion, any hearing protection will do. I go for the highest dB reduction I can (foam earplugs).

Often people don’t use hearing protection for personal noise either. Power tools, hunting, ATVs, snow mobiles, gas lawnmower, farming…The list goes on.

Why aren’t we all wearing hearing protection when we should? There are options for babies and children (small sized earmuffs) and teenagers to adults (earmuffs and earplugs with basic or high tech features). It’s like seat belts in cars. Or bike helmets for bikes. Using personal hearing protection for hazardous music/noise should be the norm for society.

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VOLUME LIMITING HEADPHONES/EARBUDS

Some manufacturers do offer “volume limiting” headphones (limit <85 dB). But at a store, I saw product packaging offering <95 dB limit for “older children”. And researchers have found that only 1 in 3 limit the volume as advertised. Why are the manufacturers allowed to continue with this false advertising/packaging? These are often used for kids.

I have to also ask, why are we worrying over the loudness of personal listening devices e.g. for music? Why are we trying to calculate safe listening times? Why are we hoping and crossing our fingers that if we use a low enough volume setting-50%? 60%?-that people won’t get hearing loss and/or tinnitus (children, teenagers, young adults, adults)? Because I think we’re missing the real issue with personal listening. Why don’t headphone/earbud manufacturers make products with built-in volume limits (e.g. <85 dB)? That can’t be tampered with? Then the product would be safe no matter how loud you turn up the volume or how long you listen. No painless permanent hearing loss from personal listening in our society. We’re almost sending people to Mars. With current technology, shouldn’t this be possible for these manufacturers to make? Safe personal listeners? No matter with what device?

HEARING HEALTHY ACOUSTICS & LOW NOISE PRODUCTS

Certain work in intermittently loud environments may cause tinnitus or hyperacusis. For example, teachers. Earplugs are available that are level dependent e.g. custom made at hearing/tinnitus clinic or online from reputable companies. Some manufacturers are starting to use noise cancellation for this which sounds interesting. These types of plugs allow voices through but cut out any loud sounds. People with tinnitus or hyperacusis could also use them at louder places like the dentist or hair salon if needed. But with open learning environments, modular operating rooms and other potentially noisy spaces increasing, better acoustics need to be a design and architectural goal. Hearing protection might still be needed (e.g. teachers will still have fire bells and shouting voices around them), but consideration of hearing friendly acoustics in future is important.

Why don’t more manufacturers make low noise products? Soft dishwashers. Hair dryers below 85 dB. Softer hearing-safe garden equipment (e.g. lawn mowers, blowers, etc.). They are available depending on the product. But why don’t consumers demand currently loud products be manufactured using low noise technology?

TINNITUS HYPERACUSIS WORLD WIDE WEB

I get so frustrated when I go online. Myths and bad advice. Negativity. Cure $ale$. Wrong information even on tinnitus association and manufacturer websites. There are no hearing hair cells in the middle ear. Tinnitus will not get worse if you do nothing. Tinnitus will not make you lose your hearing. Longstanding tinnitus in children is not abnormal (e.g. can always remember hearing it). It’s like dimples. Some have them; some don’t. Acoustic reflex testing is not recommended for people with tinnitus or hyperacusis. Don’t believe everything you read. On the plus side, there are open access research sites like Internet Interventions, Elsevier, Science Direct. Part of the problem is that scientific results are shared too slowly. There needs to be open science. David from the British Tinnitus Association tweeted a good question: Will tinnitus researchers lead the way and pre-publish?

CURING HEARING LOSS

Gene therapy research for curing sensorineural hearing loss is very exciting. Scientists are re-growing hearing hair cells in deaf mice. After the therapy, the mice can hear around 25 – 30 dB. That’s amazing when normal hearing is 0 – 25 dB. Human trials might happen in approximately 3 years. Other ideas are also being researched including a new drug cocktail. Imagine a cure for sensorineural hearing loss. What would it do for tinnitus? When they get to human trials, I’m sure there will be lots of people with sensorineural hearing loss and tinnitus willing to do anything to sign up.

GROWING OUTER EARS

Scientists are growing human-ish ears on rats. Ingredients include human DNA and cow collagen. This could be useful in future if somebody needed a new outer ear for some reason. But if you’ve read Oryx and Crake by Margaret Atwood, this could lead to apocolyptic results.

It will be interesting to see what the coming years will bring.  Jan


Released February 2019

For all the latest science, self-help and professional tinnitus-hyperacusis management approaches, check out Jan’s latest book. Click the cover at left to learn more.

Jan L. Mayes MSc writes horror fiction and non-fiction, and is an international Eric Hoffer Award winning author, blogger and audiologist specializing in noise, tinnitus-hyperacusis, hearing health education and plotting murders. Her writing has been featured at Tinnitus Today, Communique, silencity.com and The Horror News Daily.

2 thoughts on “How Things Have Changed Over My 30 Years Living with Tinnitus”

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