I Started TRT for Hyperacusis — Tips Regarding WNGs and Having Children in the Home?

Hello,

I am new here but have looked at some really helpful posts by @Coffeebean and @Michael Leigh that have gotten me through some tough days. I developed increased tinnitus (original tinnitus began in 2011 following acoustic trauma) followed by hyperacusis in late January following a couple of very loud instances, one of which being a scream by my toddler in nearer to my left ear. I believe that increased headphone use over the last year as well as exposure to many children in small spaces made my ears more susceptible.

I have hyperacusis in both ears (ULLs, uncomfortable loudness level, in the upper 50s) but the left ear is the one with a lot of reactive tinnitus. I have the beeping/chirping overlay to certain frequencies and loudness levels. For example, the toilet paper often gets me, so does crinkling a bag, running the faucet etc. Sometimes it's really sensitive so that my voice triggers it, but not always. This reactive tinnitus seems to (later in the day, based on noise exposure or stress) blossom into more of a steady tinnitus of the same high pitch. I don't feel as sensitive to sound when that happens, but perhaps it's because I don't have the chirp reminder. The right ear has a bit of reactive tinnitus too, but only an increase in its current tinnitus and only when it's really been taxed.

I am doing WNG pink(ish) noise therapy through a local clinic that does TRT/HRT. The counseling piece is minimal. I was told to wear them from waking up until bed time at a level that I found comfortable (didn't need to be up very loud) and not to protect my ears. I have been doing that for 3 weeks and haven't seen any improvement. In actuality, the reactive tinnitus has seemed worse many days. I am concerned about two things and would love tips from the users I mentioned above or anyone else who has done TRT with some successs:

1) I have a toddler at home. When he gets revved up inside, I have been wearing ear earmuffs over the WNGs. I also wear them if the reactive tinnitus runs away from me or during particularly loud parts of my day like picking up my son from daycare and dinner time. I know this isn't a level of sound that others would find damaging, but to me it just seems like too much. Am I making a mistake there?

2) Should I be taking them out when the reactive tinnitus flares up to let my ears "cool down." I have loudness hyperacusis, no real pain in my ears to boot but an occasional flutter and some tense jaw muscles, I think due to the stress. Sometimes jaw movements produce the same reactive tinnitus sound when I am in a hypersensitive mode. Thoughts there?

3) Is there anyone on here that has recovered from this with small children in the home? I am definitely developing a fear of regression/setbacks due to my son's outbursts. He's a "typical" toddler but he can get up to 90+ dB in our house.

Any additional insights for my situation would be immensely appreciated.

 

I also have reactive tinnitus.

3 weeks seems to be a very short time to notice any improvement. I think it will take a month at it best.

I tried to wear earmuffs on top of my WNGs and that spiked my tinnitus a lot. Did not like it at all. I would rather just use 3M soft earplugs in those situations.

For the time being I am focusing not to overprotect rather than wearing the WNGs all day. I need to introduce the WNGs slowly.

Are you sure your toddler makes your tinnitus worse or is it just that you dislike it? For me it’s more like frying pans, vacuums etc.

I understand that you are under a lot of stress. I think you are doing good. How is your sleep? Did you try any medication?

 

Hi @OnlyUP.

I am pleased that you have found some of my posts helpful.

@Coffeebean, successfully treated his tinnitus and hyperacusis with self-help and I wish he visited this forum more often, as I think he would be able to help a lot of people.

You have had noise-induced tinnitus for quite some time. Since you have read some of my posts, you probably know that I don't recommend anyone with this type of tinnitus to listen to audio through headphones even at low volume. This includes earbuds, AirPods, headsets, bone conduction and noise-cancelling headphones, as there's the risk of making the tinnitus worse.

I agree with the advice that you have been given at the TRT clinic, on how to wear white noise generators and not to protect your ears, as this could delay or completely stop your oversensitivity to sound from improving. However, I understand your reasons for using the earmuffs so all I will say on this matter, is to try and not become too dependent on them.

Reactive tinnitus is something that I don't believe exists, by this I mean I do not regard it as a medical condition. My opinion is that tinnitus can react to sound. Most people that complain of reactive tinnitus, usually have noise-induced tinnitus and developed some oversensitivity to sound. This oversensitivity can manifest itself in many ways and there are different levels of severity. It all comes under the umbrella of hyperacusis. If one wants to say they have reactive tinnitus I haven't got a problem with that since the treatment for it, is wearing white noise generators and ideally having counselling which is the same for hyperacusis.

In the future I hope to writing a piece on the potential problems that can occur by overcomplicating tinnitus. Keeping things simple I believe is the best way forward.

It might be a good idea to discuss this with your audiologist at the TRT clinic you attend. The correct way to use white noise generators, is to put them on in the morning keeping the volume low and wear them all day. Only take them off when retiring to bed. Then use a sound machine by the bedside set to play throughout the night until morning.

Hope you start to feel better soon.

All the best,
Michael

 

Thank you both! I know that three weeks is a short time to expect results - I was just concerned about it maybe getting worse. I have decided to lower my volume on the WNGs and also take a break from them during the day if I need to (as long as I am not in silence). I sleep pretty well as it dies down fairly quickly. I notice some ramped up tinnitus in my left ear in the morning when I first wake up - not sure why that's happening. I am just taking some Magnesium and Turmeric, no other medications. Today was a calm day for me after two difficult ones, so I have renewed hope but also understand that the path is not linear.

I am going to try to protect less, as that also could have made it slightly worse. I am working with a therapist of EMDR (like @Coffeebean did) to help work through some of the paranoia/trauma related to sound that has developed.

 

Ditch the white noise generators (snake oil) before it's too late. You will only get worse.

 

FWIW, I saw Dr. Doug Mattox, a Neuro ENT at Emory University and a former board member of the tinnitus and hyperacusis clinic when it was in Atlanta, and asked him if my above the ear sound generators could aggravate my condition since I seem to be so reactive to normal, everyday sounds. He said “not likely.” This might be true for the average person with these conditions but it is implicit in his response that it is possible. I wonder if I should stop after nine months. Some people apparently take several years to see improvement. Jeff Beck, the guitarist, tried this approach and saw some improvement after two years. He has discussed tinnitus but has not referenced hyperacusis (to my knowledge).

 

How can you be so sure? Very many people recovered with sound generators, even those with reactive tinnitus? What would your recommendation be?

I was reading some of your old posts. As I understand you recommend high quality HiFi system for sound enrichment. Would Sonos do? What sound/noise do you recommend?

I also remember that @Coffeebean used to recommend higher quality pink noise.

 

@Michael Leigh, I like my sound generators. A lot of times I feel that they are smooth to my ears. I use them for a couple of days and then I have a setback when I feel more reactivity and sharper tinnitus. What would your recommendation be? Just keep trying? I do not know how much to push?

 

@David S, how long have you been using the sound generators? I had a setback a week or so ago where I also felt like I had to wear them less. Fortunately, I am back on track. Tuesday marks 5 weeks of wearing them; I think I have seen some slight improvement overall. I don't feel as sensitive to normal/slightly louder sounds as I did weeks ago, but reactive tinnitus, particularly to high frequencies like frying pan and such, is still very much there.

What's your sound sensitive tinnitus like?

 

In order to get the best from sound generators they should be worn daily. To achieve this they need to be introduced slowly to avoid irritating the tinnitus and hyperacusis. The goal is to wear them continuously for 8 hours a day, which will desensitise a person's oversensitivity to sound (hyperacusis) and treat the tinnitus. Over time the brain habituates to the white or pink noise and slowly pushes the tinnitus further into the background, so its perception becomes less noticeable.

When retiring to bed at night sound generators should not be worn. They should be removed and a sound machine placed by the bedside and set to play throughout the night until morning for sound enrichment. Regular counselling with an audiologist that specialises in tinnitus and hyperacusis treatment is advised to get the most from sound generators. This treatment takes time.

A person should not have to force or push themselves to use sound generators. This is the reason they should be used under the guidance of an audiologist.

Michael

 

Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of Life

 

@OnlyUP, it has been hard for me to start with sound generators. I used them on an off for the 4-5 last weeks. On the other hand, I do not see that I have too many other options than to continue. Sometimes they are very comfortable and sometimes I feel that they spike my tinnitus. I guess that it is a very long process.

My tinnitus is reactive to all the same things. Car vent, vacuum, frying pans etc. Most of the times I perceive my tinnitus as a high pitched oscillating broader sound. Sometimes it can be more like morse code or electric sensations?

How do you perceive yours?

 

I’m working with an audiologist and I have reactive hyperacusis like yours. It’s going to be a lot of trial and error plus a good amount of time, months to years. We have to stick with it to see results. I was told sound therapy for tinnitus is different than hyperacusis. Hyperacusis is babying it while using earplugs when needed.

 

@David S, @Wrfortiscue, my reactive tinnitus seems to be two different kinds: the most annoying is a high pitch beep or chirp that happens over the aforementioned sounds. The second is a total maxing out of both ears with REALLY loud tinnitus that lasts until I give my ears a break. Usually I can get this second kind down after 25 minutes of removing myself from noise. That one mostly happens at the end of the day after dinner with my family (usually with earmuffs). The chirping/beeping (the more annoying one) is around for most of the day, but only for certain frequencies). It's been around SLIGHTLY less in the past two weeks, and today I didn't have it until midday! This tells me I am making progress.

I get what you mean about the white noise generators. I think I had mine too high for the first four weeks. Since turning them way down I have been able to wear them all day every day. I know they aren't what sets off my reactive tinnitus because when I put ear muffs on over them the reactive tinnitus dies down. Maybe yours are set too high?

Even though my reactive beeping tinnitus is around a lot, I do feel like my overall sound tolerance has improved by 15-20% within the last two weeks. I have been doing sound therapy for 5 weeks total. I think my improvement is due to my sound generators but ALSO due to lowering my stress around the issue. I read success stories whenever I feel down and I also read chapters 10 an 12 of Dr. Neil Bauman's book on Sound Sensitivity, too. I am also doing EMDR therapy with my local psychotherapist. This has allowed me to grieve over the loss of my pre-hyperacusis life and release some of the fear I have about being around my toddler. I stopped ear muffing so much in the past two weeks, too. All of these things have brought my sound tolerance up and *slightly* decreased my reactive tinnitus.

Hope this helps. Keep me posted!

 

Hi @Michael Leigh,

I have been reading a lot of your posts and they give me hope! I have been wearing the WNGs for 7 weeks now and I haven't been protecting as much in normal situations. As a result, my sound tolerance has gone up. When I used to have tinnitus that would react to sound AND a sort of blown speaker sound/feeling, now I only have the tinnitus spikes to sound.

I have read your post on variable tinnitus. How do you know if you have variable tinnitus or hyperacusis linked tinnitus (I won't call it reactive tinnitus, I promise! ) I suppose you're going to say "if it reacts to sound then it's hyperacusis. My tinnitus most definitely does react to sound, but when it's in the super reactive mode (like when my house gets louder with my son playing), my jaw can also produce the same sound, as well as getting up from sitting to standing, etc. It's like it just becomes a big festival of things that provoke this high pitched chirp/beep. If I put on earmuffs or go to a completely silent room, most of this dies down, except in most cases once it's been activated during the day my jaw opening wide can always cause it. What do you make of this?

Sometimes, instead of the beep/chirp, I have a steady but LOUD high pitched tinnitus in the left ear. That is usually after I get moving/making sounds first thing in the morning. That one usually quiets to my baseline tinnitus if sounds are avoided. If no, it goes to the chirp. Basically, throughout the day my left ear switches from steady loud tinnitus to chirping, back and forth. My evening, after a glass of wine and putting my son to bed, all is quiet - throughout the entire night until I get up the next day and sounds come in. Is this standard hyperacusis? Do you think the tinnitus will level out once it's more under control?

Thanks!

 

No two people will experience tinnitus and hyperacusis the same, although they will probably share some similarities.

These conditions can be complex because they can affect a person's mental and emotional wellbeing a lot, and this complicates matters further. It is good that you are under the care of an audiologist and I suggest you wear your white noise generators as you have been advised.

You have gained some improvement within a short period of time of just 7 weeks and that is good. This will continue with time, so keep wearing the WNG and remember to use sound enrichment at night. Place a sound machine by your bedside and set it to play throughout the night until morning. Keep the volume low so it's not drawing attention to itself.

The opening and closing of the jaw can affect tinnitus in some people in the way you described. This is because some nerves that are located in the auditory system, also encircle the temporal jaw joint which connects (hinges) the lower and upper jaw to enable the mouth to open. It can also be caused by a condition known as TMJ (Temporomandibular Joint).

Please read my post on variable tinnitus again as I explain it in full. If you are able to print the article instead of reading on a phone or computer screen it will be better.

Variable tinnitus mostly affects people that have noise induced tinnitus and have suffered a second noise trauma. The tinnitus will be variable having large fluctuations in intensity, from silent, mild, moderate and severe. Although no two people will experience variable tinnitus the same, as in normal tinnitus they will share some similarities. This type of tinnitus can be challenging to habituate to but it's still possible with time.

Try not to pay too much attention to the way your tinnitus and hyperacusis reacts. They will settle down in time and become more manageable. Continue using your sound generators and try to engage in things you like to do. If possible start a new hobby or interest, anything to help take your attention away from focusing on the tinnitus and your oversensitivity to sound.

Things will improve, give it time.

All the best,
Michael

 

Hello @OnlyUP and @Michael Leigh, I have been using my sound generators off the NHS and I have over several months built up my usage of them by minutes per day. I am now wearing them for at least 2 1/2 hours a day and I find them extremely soothing. They are on very low volume, it’s supposed to be a white noise but I don’t think it is as it’s soft and not as harsh.

I use low sound constantly from my oasis sound machine. Plus radio and tv on very low in the background. I also have private counselling.

 

Hi Eleanor! I am glad you're liking your WNGs. I like mine too. I can wear mine all day - actually my ears feel naked without them. Does your private counselor advise you to wear them for longer periods? It seems if you like them then you could go a bit longer. How has your tolerance been? Mine has improved in 2 months of WNGs, but it may be due to protecting my ears less. Once I let go of some fear about being around my two year old, I was able to not muff too much and, as a result, he and other household sounds do not seem as loud. I am a happier mom as a result - parenting too much with ear muffs on was stressing me out.

I look forward to hearing more about your journey.