I've Become a Severe Multitonal Tinnitus Case

[Wrfortiscue]

Yes, I very much do. High pitched, unstable, unmaskable as well. The reactive part is the reason I come to Tinnitus Talk at all. I have a lot of friends and family with tinnitus without the reactiveness and they do not seem to care too much. I was basically dysfunctional for 6 months knocking myself out with a benzo. Then I for the second time started with the noise generators. Slowly, in a process which I cannot explain, I realized there is a world just outside my bedroom that I can be a part of. I am by all means not cured. My reactive tinnitus just gets worse and worse but the thing is I also care less and less. I avoid all noises that trigger my tinnitus. That could be a challenge but nothing I can't overcome.

Here are the main reasons why I think most of us struggle so much more than others to overcome tinnitus:

1. My tinnitus is not possible to mask or even worse, it tends to get more pronounced around other sounds.
2. My tinnitus is accompanied by sound sensitivity that manifests itself with physical pain or great discomfort.
3. My tinnitus is also accompanied by hearing loss which makes it hard for me to interact with other people.

I suffer from 1 and 2 but not 3. I can still live a very normal productive family life. I used to punish myself quite bad because I messed up my life so bad. I stopped doing that which in itself was a great relief.

Starting with the sound generators for the second time was really a challenge. Every fiber in my body said no. I felt my life was over anyway. What do I have to lose? Read back on my posts from less than a year ago and you understand my struggle.

Thanks man, and yeah, I believe you. I started sound therapy around the same time. I just didn't pull through lol.

 

[momus]

I haven't waded through all the comments here, so ignore anything I say that's been said before. Nearly all of us have had periods when our tinnitus got a lot louder, often seemingly for no apparent reason. And we've had periods when it has got a lot quieter even though we couldn't point to what changed in our lives. So don't get worried that it may continue at the level it is now, or worse, project into the future what might happen. Focus on the here and now.

There are a lot of non invasive things you could do. See if you can mitigate it w/ a fan or something like that. White or pink noise generators too, but if it goes up, stop. Stay busy and don't get on the internet unless it's a fun thing. The internet itself can be full of gloom and doom, and sitting for extended periods is known to be very unhealthy. Engage w/ the real world as much as possible, and get exercise and fresh air. Allergies can make tinnitus worse, and it doesn't hurt to have a health diet w/ lots of antioxidants and anti inflammatory foods. Often, the sound of waves, a fountain or a stream can make a natural noise to mask tinnitus. Bike or walk, take up a new hobby, things you enjoy, but don't just sit at home. Maybe talk w/ your doctor about low level medication that might make your life less stressful, but still leave you functional.

FWIW, when I first got my tinnitus it was screaming loud in both ears. I had to sleep w/ a radio tuned between stations in the bed at full volume to get any sleep. That's been 15 or 20 years ago or more, and since then I've gone through periods when my tinnitus is barely audible, as well as times where it can be very annoying. But it has never gotten as loud as it was when I first got it.

 

[Leila]

Hi @WildJello and sorry your tinnitus worsened like that. I've been bemoaning my three noises, I can't imagine what an impact the number of noises you are experiencing will do to a person's peace of mind. I hope that whatever has caused this increase in noises will be temporary!

My tinnitus turned reactive and painful literally over night. It got to the point that scratching my head hurt and I couldn't communicate in person or listen to artificially created sounds at all. Any little noise felt like somebody was putting out a cigarette in my ear.

My recommendations are to absolutely and positively avoid any electronic noise whatsoever, speakers included. My tinnitus was insanely reactive, and still is to an extent, and this is the absolute worse trigger that I ever had and still have.

I don't normally spike anymore from natural noises, such as voices, but anything from a speaker will worsen me to an unimaginable degree. Avoid it like the plague. Take it real easy for a few months. Use hearing protection. You will get better.

Just like @AnthonyMcDonald describes it, I was forced to give up on pretty much everything for a while. The reactivity is still there and certain environments make it worse (tiled rooms for example) just as certain noises and voices do. The moment I feel the first fluttering I try to get away from the situation and give my ears some rest. It's by no means a perfect system, but it works for me.

What this new sensitivity to sound has taught me is patience and the importance of taking good care of myself.

Don't do anything to make somebody else happy or just because somebody recommends it to you. You're the one who knows their body best and you are the one who will have to live with the pain if some of the recommendations don't work the way they were supposed to. Put yourself first and don't feel bad about it!

All the best,
Leila

 

[Nick47]

Time helps tinnitus go into remission, not blasting ears with more noise. I don't understand where this opinion on sound enrichment lowering tinnitus came from.

When I saw an ENT privately, he wrote to my GP and said sound enrichment can make my condition worse, but then recommended CBT/TRT?

I've looked at studies and there is little evidence for TRT. @Michael Leigh will never know if it was time or sound enrichment that helped him, because there is no control. I believe he wants to help people and his advice about a positive mindset is good advice. Yes, my real critique would be that he seems to fit each case into his own experience, which many of us do, if we are honest.

My recommendations are to absolutely and positively avoid any electronic noise whatsoever, speakers included. My tinnitus was insanely reactive, and still is to an extent, and this is the absolute worse trigger that I ever had and still have.

Watching YouTube videos on my phone even at low volume caused me pain a year ago. This is what annoys me a lot about apps and silly telehealth for tinnitus.

 

[Michael Leigh]

@Michael Leigh will never know if it was time or sound enrichment that helped him,

With respect @Nick47, please speak for yourself whether sound therapy is helpful or not. Although you are entitled to your opinion about me, I assure you TRT with counselling and wearing sound generators for sound therapy, helped to reduce my tinnitus to such very low levels that for the majority of the time I wasn't aware of it. My severe hyperacusis was completely cured and has remained this way. Unfortunately in 2008 I had a second noise trauma that resulted in my tinnitus returning with a vengeance and changed to variable tinnitus. I explain what variable tinnitus is in my thread: Can I Habituate to Variable Tinnitus?

I wrote a thread in March 2022 titled: The Typewriter. Please click on the link below and read the entire thread. I mentioned that the noise from the type bars on the typewriter was irritating my ears. Although I wasn't experiencing pain, I decided to try and cure the problem by wearing my white noise generators for 10 hours a day. Within 6 months I was able to use the typewriter without earplugs.

real critique would be that he seems to fit each case into his own experience, which many of us do, if we are honest.

I want to clear up some misconceptions that some people may have about me. I mostly advise on noise-induced tinnitus, with or without hyperacusis, because I am familiar with these conditions. Please note, it is advice, and not absolute because we are all different. To some extent this advice is based on my own experience. It has to be, for I believe in order to give good advice on tinnitus and hyperacusis, one has to have experience of living with these conditions, because they cannot be learnt in any great depth from a book or at medical school. Therefore, in my opinion, having a string of medical qualifications doesn't make one a tinnitus therapist.

My advice is also based on corresponding and counselling people that have tinnitus over the 26 years that I have lived with noise-induced tinnitus. The positive feedback that I get from people is an indication that I am being of some help. I do this because when I first got tinnitus many years ago, I was in a terrible state and thought my life was over. I reached out to a tinnitus organisation here in the UK, who had tinnitus veterans, that volunteered to help anyone that was struggling to cope with tinnitus. I telephoned them for support and spoke with people that really understood what I was going through and who brought me back from the brink of despair. When I eventually habituated and got my life back on track, I became a tinnitus support contact for that organisation and decided to help people and continue to do so.

When I am counselling someone, I try to get as much information as possible about their tinnitus and hyperacusis if they have it. Are they able to work, go out and socialise etc. I ask how the tinnitus impacts on their mental and emotional wellbeing. It is no different to what an audiologist or hearing therapist would ask that works with tinnitus patients.

A lot of the the advice that I give can be found in the posts that I have written on my started threads.

Michael

The Typewriter | Tinnitus Talk Support Forum

 

[GregCA]

When I saw an ENT privately, he wrote to my GP and said sound enrichment can make my condition worse, but then recommended CBT/TRT?

CBT and TRT are 2 different things. The former doesn't involve sound enrichment. The latter does.

 

[AnthonyMcDonald]

ith respect @Nick47, please speak for yourself whether sound therapy is helpful or not. Although you are entitled to your opinion about me, I assure you TRT with counselling and wearing sound generators for sound therapy, helped to reduce my tinnitus to such very low levels

Sound therapy does not reduce tinnitus, this is a very bold and absolutely unbacked by any studies claim. Time reduces tinnitus - this has been proven with many studies.

The vast majority of people who get tinnitus go into remission with time (~85%), TRT or not. The only controlled studies I've seen on sound therapy show that it makes tinnitus worse. Correlation does not imply causation. If many people use sound therapy, and many of them would have gone into remission regardless, you can't automatically assume it was sound therapy.

If the same amount of people had drunk piss, they would have said drinking piss reduces tinnitus.

 

[Nick47]

Sound therapy does not reduce tinnitus, this is a very bold and absolutely unbacked by any studies claim. Time reduces tinnitus - this has been proven with many studies.

There is no evidence that sound therapy reduces tinnitus. Where I think @Michael Leigh has a point is that done right, it may reduce hyperacusis. There are studies showing sound deprivation induces hyperacusis. The issue is when you have pain. It seems it's a case of when and how much sound enrichment. Until we have objective measures or biomarkers for these conditions, it's difficult to prove.

 

[DaveFromChicago]

Sound therapy does not reduce tinnitus, this is a very bold and absolutely unbacked by any studies claim. Time reduces tinnitus - this has been proven with many studies.

The vast majority of people who get tinnitus go into remission with time (~85%), TRT or not. The only controlled studies I've seen on sound therapy show that it makes tinnitus worse. Correlation does not imply causation. If many people use sound therapy, and many of them would have gone into remission regardless, you can't automatically assume it was sound therapy.

If the same amount of people had drunk piss, they would have said drinking piss reduces tinnitus.

I submitted a report to the New England Journal of Medicine that concludes that imitating the sounds of an Asiatic Rhinoceros In Labor will reduce tinnitus. I included a CD that records me making these sounds.

Every "Sound Therapy" (Neuromonics, SoundCure, Desyncra, The Levo System) has been proven to be well nigh worthless and no longer available. I will always chastise myself for having spent $6,200.00 on Desyncra.

I dutifully wore their headset for 36 weeks, and their "Sound Therapy" had as much of an effect on my tinnitus as shining a flashlight on my head would have had.

 

[Michael Leigh]

There is no evidence that sound therapy reduces tinnitus. Where I think @Michael Leigh has a point is that done right, it may reduce hyperacusis.

With all due respect @Nick47, I don't think you understand how sound therapy works for tinnitus. I am referring to white noise generators. When they are used correctly, they can help to lower tinnitus or, to be more precise, the brain does which is where the tinnitus noise stems from.

The volume of the white noise generators should be set low, ideally slightly below the level of the tinnitus and kept there. Over time the brain habituates to the white noise and slowly pushes the tinnitus further into the background making the perception of the tinnitus less noticeable. You are quite right saying sound therapy can help to treat hyperacusis. In my case, white noise generators completely cured my severe hyperacusis as part of TRT in 2 years.

Michael

 

[AnthonyMcDonald]

There is no evidence that sound therapy reduces tinnitus. Where I think @Michael Leigh has a point is that done right, it may reduce hyperacusis. There are studies showing sound deprivation induces hyperacusis. The issue is when you have pain. It seems it's a case of when and how much sound enrichment. Until we have objective measures or biomarkers for these conditions, it's difficult to prove.

I have seen mixed results when introducing sound to my life. I'm sure my loudness hyperacusis wouldn't have improved if I hadn't done that a little bit.

On the other hand, introducing noise sometimes spiked me. So I can't really say what actually helped.

point is that done right, it may reduce hyperacusis. There are studies showing sound deprivation induces hyperacusis

I think I'm pretty sure I know what studies you're talking about - but just in case, could you link them to me? I don't really remember what the results were or if they had legitimate objective measurements.

 

[HopefulFranky]

The vast majority of people who get tinnitus go into remission with time (~85%), TRT or not.

Hey, do you have some reference to that estimate? Is a general timeline for remission given, or does it vary a lot from person to person? I'm curious about that.

 

[Nick47]

but just in case, could you link them to me? I don't really remember what the results were or if they had legitimate objective measurements.

Hey, err, yes, it was the live reporting @Hazel did from the Palm Springs Hearing Seminar that Dr. Shore attended in December.

But I see it from all points. If you have pain to external sound, then sound enrichment may not be the best avenue for sure...

 

[AnthonyMcDonald]

With all due respect @Nick47, I don't think you understand how sound therapy works for tinnitus. I am referring to white noise generators. When they are used correctly, they can help to lower tinnitus or, to be more precise, the brain does which is where the tinnitus noise stems from.

The volume of the white noise generators should be set low, ideally slightly below the level of the tinnitus and kept there. Over time the brain habituates to the white noise and slowly pushes the tinnitus further into the background making the perception of the tinnitus less noticeable. You are quite right saying sound therapy can help to treat hyperacusis. In my case, white noise generators completely cured my severe hyperacusis as part of TRT in 2 years.

Michael

I don't get it. You are contradicting yourself. Do WNGs help you habituate or lower tinnitus? Because in the first paragraph you wrote some nonsense about WNGs lowering tinnitus, then in the second one you wrote it helps "push it into the background", which is what TRT and habituation preachers constantly mention.

Which one is it? Does it lower tinnitus or help with habituation?

Hey, err, yes, it was the live reporting @Hazel did from the Palm Springs Hearing Seminar that Dr. Shore attended in December.

But I see it from all points. If you have pain to external sound, then sound enrichment may not be the best avenue for sure...

"Tinnitus might also be suppressed by sound therapy."

Yeah I don't think I'm gonna trust this guy's research. Classic case tunnel vision, ignoring multitudes of other factors.

Hey, do you have some reference to that estimate? Is a general timeline for remission given, or does it vary a lot from person to person? I'm curious about that.

This is the number given to people "recovering". I assume it's a mix of remission and habituation.

 

[Sevv]

On the topic of sound therapy for tinnitus and hyperacusis:

1. The study "Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of Life" in the year 2019 compared the outcomes for three different patient groups (about 50 patients in each group for a total of 150): 1. Tinnitus Retraining Therapy with sound generators (TRT) with tinnitus counseling; 2. placebo TRT with tinnitus counseling; 3. standard of care (just counseling it seems). There was no clinically meaningful difference in extent of reduction in tinnitus distress or other important end points among patients in the 3 different groups. Tinnitus Retraining Therapy with conventional sound generators thus has been found to be no better than Tinnitus Retraining Therapy with placebo generators or standard of care.

2. The study "A Phenotypic Comparison of Loudness and Pain Hyperacusis: Symptoms, Comorbidity, and Associated Features in a Multinational Patient Registry" in the year 2021 noted the following on the use of sound therapy for hyperacusis:

"Of our sample, over 50% of each group [note: about 90 for pain hyperacusis, about 50 for loudness hyperacusis] had attempted to treat their hyperacusis with sound therapy, including both self-directed protocols and those prescribed by professionals (pain: 59.9%, loudness: 53.8%; OR = 1.273 [0.763, 2.173], BF 10 = 0.248, BF ROPE = 0.141). The most common form of sound therapy was self-administered pink noise (n= 85), followed by self-administered white noise (n= 84), structured interventions that included counseling (n= 58), tinnitus retraining therapy (n=55),"Other"(n=48), hearing-aid sound generators (n= 26), and the Neuromonics protocol (n= 3). Participants reported engaging in sound therapy for a median of 1–2 years, with the loudness hyperacusis group reporting a moderately longer duration of sound therapy compared to the pain hyperacusis group (d=−0.525 [−0.908, −0.137], BF 10 =8.42,BF ROPE =7.55). Notably, the loudness group also reported more perceived benefit from sound therapy than the pain group (d=−0.425 [−0.806, −0.047], BF 10 =3.12,BF ROPE = 2.84). Individuals in the loudness group were substantially more likely to report that sound therapy resulted in "significant improvement"or "hyperacusis [being] almost eliminated"(pain: 4.4%, loudness: 22.4%; OR = 0.176 [0.054, 0.557]). However, the proportions of patients reporting (a) no change in symptoms with sound therapy (pain: 38.5%, loudness: 32.7%; OR = 1.274 [0.618, 2.605], BF ROPE = 0.162) or (b) worsening tinnitus/hyperacusis (pain: 27.5%, loudness: 18.4%; OR = 1.616 [0.702, 3.801], BF ROPE = 0.313) did not differ meaningfully between the two groups."​

To summarize the results:

Treatment duration: median of 1-2 years (not placebo controlled, so not doing anything could have resulted in the same outcome).

For loudness hyperacusis:

Patients: around 50
Significant improvement: 22,4%
Minor improvement (hinted at on page 14 of the study, missing difference for getting 100% of patients): 26,5%
No change: 32,7%
Worsening (any amount): 18,4%

For pain hyperacusis/noxacusis:

Patients: around 90
Significant improvement: 4,4%
Minor improvement (mentioned on page 14 of the study, missing difference for getting 100% of patients): 29,6%
No change: 38,5%
Worsening (any amount): 27,5%

 

[Jupiterman]

I am by all means not cured. My reactive tinnitus just gets worse and worse but the thing is I also care less and less.

Starting with the sound generators for the second time was really a challenge.

I actually think that my tinnitus is a little bit worse compared to when I started with sound generators.

Your reactive tinnitus keeps getting worse.

You're worse off because of sound generators.

Yet, you couldn't care less!

I don't know if this frightens me or assures me?

 

[gameover]

Seriously. ChatGPT would be more emphatetic and knowledgable than this @Michael Leigh persona is. If he did not predate these chat bots, I would think he is one. Maybe he is an early prototype, hence his limited knowledge base. The fact he denies existence of reactive tinnitus, with this incredible stubbornness and refusal to provide any sensible arguments, tells you about everything you need to know about him.

 

[Jammer]

Seriously. ChatGPT would be more emphatetic and knowledgable than this @Michael Leigh persona is. If he did not predate these chat bots, I would think he is one. Maybe he is an early prototype, hence his limited knowledge base. The fact he denies existence of reactive tinnitus, with this incredible stubbornness and refusal to provide any sensible arguments, tells you about everything you need to know about him.

Completely disagree. @Michael Leigh has helped many here on this forum; his advice is welcome here, as is anyone's who has had tinnitus long term. This forum is a place to offer advice, consultation and his has been greatly appreciated by me.

 

[gameover]

Completely disagree. @Michael Leigh has helped many here on this forum; his advice is welcome here, as is anyone's who has had tinnitus long term. This forum is a place to offer advice, consultation and his has been greatly appreciated by me.

And that's perfectly fair for you to think this way and voice your opinion.

 

[RunningMan]

I think @Michael Leigh wasn't exactly denying reactive tinnitus exists but was stating it wasn't an independent medical condition and was rather a subset of hyperacusis. I do know that many years back after being in loud clubs, riding my dirt bike, listening to my car stereo loud for an hour, or even listening to music with headphones (or earbuds), I would hear ringing for a while before it faded away (maybe hours later or next morning), so there was definitely a reactivity to being around those loud noises. And that was back when I really didn't give it much thought, although probably 10 years ago or more, I started wearing earplugs more, not listening to loud music, and cutting way back on the use of headphones/earbuds and using low levels. Anyway, apparently too little too late in the long run.

 

[gameover]

Yes, I very much do. High pitched, unstable, unmaskable as well. The reactive part is the reason I come to Tinnitus Talk at all. I have a lot of friends and family with tinnitus without the reactiveness and they do not seem to care too much. I was basically dysfunctional for 6 months knocking myself out with a benzo. Then I for the second time started with the noise generators. Slowly, in a process which I cannot explain, I realized there is a world just outside my bedroom that I can be a part of. I am by all means not cured. My reactive tinnitus just gets worse and worse but the thing is I also care less and less. I avoid all noises that trigger my tinnitus. That could be a challenge but nothing I can't overcome.

Here are the main reasons why I think most of us struggle so much more than others to overcome tinnitus:

1. My tinnitus is not possible to mask or even worse, it tends to get more pronounced around other sounds.
2. My tinnitus is accompanied by sound sensitivity that manifests itself with physical pain or great discomfort.
3. My tinnitus is also accompanied by hearing loss which makes it hard for me to interact with other people.

I suffer from 1 and 2 but not 3. I can still live a very normal productive family life. I used to punish myself quite bad because I messed up my life so bad. I stopped doing that which in itself was a great relief.

Starting with the sound generators for the second time was really a challenge. Every fiber in my body said no. I felt my life was over anyway. What do I have to lose? Read back on my posts from less than a year ago and you understand my struggle.

Any progress with your reactive tinnitus, @David S?

 

[David S]

Any progress with your reactive tinnitus, @David S?

Yes, I would say that I am still improving. Day by day. It took me well over 12 months of consistent use of sound generators to get where I am now.

 

[RunningMan]

Yes, I would say that I am still improving. Day by day. It took me well over 12 months of consistent use of sound generators to get where I am now.

How much do you typically wear them during a day? How much did they reduce your tinnitus volume?

Do you still take the SSRI and benzo to deal with depression and/or anxiety?