Noise-Induced Hyperacusis and "Reactive" / Sound-Sensitive Tinnitus 80% Gone

Hi all,
I've been reading this forum for over a year now but hadn't made an account myself. Today I made one to post my story, in the hopes that it will benefit those of you who are still struggling.

I've been suffering from noise-induced hyperacusis and tinnitus for about a year. I might post the entire background story another day, but in summary I was exposed to a very loud noise at a music festival. I'd always been quite careful with my hearing, wearing earplugs at concerts etc., but my ears might neverthelss already have been weakened a bit by years of headphones use. And, I suppose, sometimes its also a bit of bad luck.

The day after the incident I woke up with ringing in my ears, almost like an electric hissing, and I became extremely sensitive to sound. Music sounded shrill, harsh and distorted, and it was like I had two megaphones permanently glued to my ears all day long. I also got pain in my ears, pain in my face and jaw, TTTS, hearing distortion, and tinnitus which was very 'reactive' / sound-sensitive: whenever I would hear a sound, the tinnitus would beep over it almost as if it was trying to overlay the original sound and compete with it.

When I first got these symptoms I became very scared and depressed, as the symptoms were very debilitating and limiting my life. I went to various doctors and ENT's who couldn't help and who told me that there was no cure, and that I would just have to 'learn to live with it' and 'wear earplugs'. My audiogramms were fairly normal (between 0 and 15dB on most frequencies), but showed that I had some noise-induced hearing loss which created a 20db "noise notch" on the 2k-4k frequencies. An extended audiogram showed that I was extremely sensitive to high frequencies, sometimes even scoring into negative decibels.

I had always loved music more than anything in my life, and because of the hyperacusis and tinnitus I could hardly listen to any music anymore. I became very scared and depressed, to the point were I genuinely started to feel like life wasn't worth living anymore, having suicidal thoughts on a daily basis.

However, the impact that this had on my life also made me determined to find a solution, so I started looking for one myself. I quickly learned that many people with hyperacusis and tinnitus tend to overprotect their ears, but that this actually makes the symptoms much worse as depriving the auditory system from sound actually caused the auditory system to 'turn up' the volume in an attempt to hear something, thereby increasing the hypersensitivity. I read about 'TRT', which as a treatment uses wearable sound generators in the ear to produce broadband noise all day long, in order to slowly stabilize the auditory system again. Since TRT was not available in my country, I decided to try if I could do it myself by using 'pink noise', which is broadband noise with less energy in the high frequencies, so that it is gently on the ears.

It took me a while to find a suitable form of pink noise (i.e. one that did not make my symptoms worse, and one that addressed the entire frequency spectrum) and a suitable headphone (as I could no longer tolerate most headphones/earbuds). I started out with a low level of pink noise each day, slowly increasing the length and volume over a period of months, and tweaking the frequencies to address my specific challenges. It took many months before I noticed a little bit of improvement, but I decided to stick with it as I was convinced that an overly sensitive auditory system needs to be desensitized, rather than kept in quiet.

There were a lot of everyday sounds that caused me trouble, such as the clanking of dishes. Again, I tried not to avoid these sounds, and instead I purposefully tried to clank them a bit louder every time to improve my tolerances. I also learned that 'reactive' tinnitus is a poorly chosen term, as it is actually a symptom of hyperacusis, which can decrease as well as you build your tolerances to sound.

Of course, I still remained careful around loud sounds, but I learned that it is very important to only use hearing protection when you are in a place in which the sound is actually too loud (i.e. so loud that it could also be dangerous to someone with normal hearing), and that you only make your symptoms worse if you start wearing hearing protection in everyday situations.

Many days were - literally - quite painful, but I soon started to view the sound exposure and pink noise as a form of exercise, like training your muscles: at the end of the day you will be sore, but when you recover you will be a bit stronger next time. The same applies to your ears. The trick is to push yourself a little bit each time, but not so much that you injure yourself. I realized that because of my experiences, I had also built certain fears and anxieties around sound that I needed to address. For that I used EMDR therapy, which is a form of psychotherapy of which I believe that it would actually deserve its own topic here on TinnitusTalk, as it was very effective in reducing my distress and effectively moved the hyperacusis and tinnitus from the foreground of my perception to the background.

After a year I would say I am about 80% better. I am not entirely cured as I am still a bit sensitive to certain frequencies of sound, but I have faith that I will continue to improve as I work on desensitizing. Improvement can sometimes take many years and I am still in my first year. I have a little bit of hearing loss, which makes certain music sound a little different, but it is nowhere nearly as bad as when the hyperacusis and tinnitus were at their worst. I no longer use the in-ear headphones, and I avoid very loud situations such as very loud rock concerts, but for the rest I live a normal life. I do not overprotect, but wear custom earplugs whenever things get real loud (live musics, loud bars, using power-tools, snowmobiles etc.). I still have a little bit of T, but as it is no longer as reactive as it was it is much earlier to live with. Sometimes I have to struggle to hear it at all.

I hope that anyone who reads this who is suffering from hyperacusis and/or tinnitus which reacts to sound and/or the other auditory symptoms I describe, will find some hope and confidence in my story that it really is possible to improve. It takes a lot of hard work and there will be setbacks, but a slow and purposeful desensitization to sound will help you in the long run. I would also like to take this opportunity to thank @Michael Leigh , whos many posts on TinnitusTalk regarding T&H were very valuable to me during my darkest days, and provided me with a lot of information and insight.

Feel free to ask me any questions!

 

@Coffeebean . Great news !! and thanks for posting your positive story. I hope it continues to improve. Could I ask what you found to be "a suitable headphone" ? Thanks

 

@Kelvin

With hyperacusis and tinnitus, it is usually not advisable to use closed headphones or earbuds extensively, as they can make symptoms worse. As per recommendation of some other sufferers, I used and open over-the-ear headphone which was capable of producing the entire frequency spectrum from 20hz to 20khz, while still enabling me to hear the sounds around me. Having pink noise in the 'background' like this, is believed to give the best results.

Edit: the exact make and model I used was the "Sennheiser PX 100-II ". It looks like a cheap headphone from the 90s, but worked surprisingly well in my case.

 

Thanks @Coffeebean...just happens I have some PX100's that I purchased some time ago. Will have a gentle go with some quiet Pink noise samples I have from www.hyperacusis.net. I like the idea of WNGs but they are very expensive and limited in the sounds you can get pre-installed. Thanks again.

 

@Kelvin

Yes, I agree with you on the WSG. They are not always the best choice due to price and technical limitations. For example, I was highly sensitive to sounds of 14khz. A lot of WSG do not go that high, so they do not desensitize those frequencies as effectively.

Using a laptop or smartphone with high-quality pink noise also gives you more opportunities to tweak and EQ as required. I even know of some people who have gone so far as to make a custom pink noise based on their specific issues, and adapt every once in a while. Making an analogy again with training your muscles: there are some basic principles which apply to everyone, but everyone also has some individual needs, which may warrant changes in your approach.

I also believe that pink noise by itself is not sufficient to get you desensitized to impact-sounds, such as clanging dishes, as by its nature pink noise is a continuous and monotonous sound, and therefor does not train your auditory system to deal with those impact sounds.

 

HI @Coffeebean

Thank you for your very kind comments and I'm so pleased that you have found my posts helpful. As you know I once had very severe tinnitus and hyperacusis. The hyperacusis was completely cured in two years using white noise generators, and the tinnitus reduced to a very low level. The hyperacusis was so severe, during a conversation with anyone, I had to ask them to please lower their voice as my ears were in so much pain.

Your well written post mentions all the salient points, one needs to take if they want to try and reduce their tinnitus and hyperacusis with self help. I commend you wholeheartedly with your improvements and I'm pleased that you have been able to use headphones, to administer pink noise to your specific needs without making your symptoms worse. It is clear, you have taken time and researched this matter at length. Well done and I'm sure your hyperacusis will improve further.

Take care and wishing you all the best
Michael

 

Hi @Coffeebean

At any point did you ever increase your baseline thru daily sounds or using headphones and generators, since onset?

 

@another sean

Are you referring to my baseline T, baseline H, or baseline level of the sounds that I used?

 

for reactive T there is no baseline, at least for me

 

Your initial experience really hits home with me right now. I'm also perceiving sounds over or within external sounds. I consider these as my T assimilating into external sounds (since they are sort of the same tone but with the source in that external sound). I'm wondering though, whether this feedback you heard aggravated your regular T as well (what is usually referred to as 'reactive T' in these parts) or if that extra input ran completely parallel to the external sounds you were perceiving and thus began and disappeared together with them?

If so, exposure to these sounds and increasing tolerance to them is what essentially cured you of this condition? Does this therefore mean that such a phenomenon is nothing else than a corollary of H? I'm really trying to find a solution for this problem, that could then help me habituate to my 'regular' T. I've already started up TRT counselling with an audiologist in my home country, but she advised against White Noise Generators because of this 'reactive' phenomenon. What should I do?

 

@Mellow7

A very good question, and I believe this is why it can be tricky to use terms such as 'reactive T' as everyone might use the term a little differently.

I will try to explain in more detail what I mean, and hopefully this will help you. First of all, although tinnitus and hyperacusis often co-exist, I believe that we can make a distinction between the two. On the one hand, we have tinnitus whereby one perceives a phantom auditory perception. In general, this term is used to describe a perception of sound (beeping, buzzing, chirping etc.) when in reality there is no sound present. On the other hand, there is hyperacusis, which means that - unlike with tinnitus - there is an actual sound, but it is perceived as very loud, distorted, and sometimes even painful, because a persons tolerance to sound (or to certain frequencies thereof) has decreased.

In know that I am generalizing here but bear with me. Between these two phenomenon, there is a bit of a grey area of symptoms, in which - for example - tinnitus is present but it responds to external sounds, making them sound 'distorted' for lack of a better word, or - as you describe - the tinnitus assimilating with the external sound.

Some people with tinnitus experience what is known as 'kindling' or 'winding up', which means their tinnitus can (temporarily) increase after being exposed to sound.

What I mean to describe as "reactive" / sound-sensitive tinnitus (and I used the quotation marks on purpose as it is such a vague term), is a phenomenon whereby the tinnitus immediately responds to the external sound, as if it is trying to overlay / compete with / mimic the external sound. So, for example, when I would hear a car pas by, I would also hear beeps at the same rhythm as the engine noise. As the car came closer and the sound grew, the beeps grew as well. As the sound faded, the beeps faded along with it. When in complete silence, I could still hear some T but it was not nearly as loud as when external sound was present to 'trigger' it. The aforementioned, I believe, is related to H and can decrease when the H is treated. The 'regular' T can also decrease somewhat if H is treated, as it is no longer amplified by your hypersensitive auditory system.

I believe that the reason why you have been advised against the WSG's, is because there exists a 'category 4' patient, who experiences an increase in T and/or H when using the WSG's, which lasts more than 24 hours and the T/H do not die back down after a good nights rest. The latter is important. If this is not the case, then I believe the WSG's can be used to treat H, the "reactive" T, and thereby - to a certain extent - also reduce the 'regular' T, and help habituate to whatever sounds remain. Adding to that, I do not believe it is a bad sign if one experiences a temporary increase of T (which you could consider to be 'kindling' or 'winding up'), reactive T, and/or H when starting out with the WGS. or pink noise As I described, it is a bit like weight training, where you'll be sore at the end but if you challenge yourself in the right way (not too little, not too much), you will come out stronger after a bit of rest.

Be aware that I am not an audiologist and you should discuss your specific challenges with one who has the required expertise. When you do, please explain in detail what happens to your T & H upon sound exposure, and how long the phenomenon lasts. If WSG's are not a solution, then you might still make progress with pink noise, as people with very severe T&H (even cat. 4) have been able to make progress with them. It is more difficult however, as there is a risk of longer set-backs.

For myself, if I use the above definitions, I would summarize my progress as follows:

• Hyperacusis: has improved significantly.
• "Reactive T": has improved significantly as well, although progress came later than the initial improvement of H.
• "Normal T": has improved somewhat as well, but was never my main issue .
• Increase of T and/or H after sound exposure: I still experience this after a long day with a lot of sound (e.g. cellphone use), stress etc., although not as much as in the beginning. I suppose you could call it a form of "kindling" or "winding up", but for me it dies back down after a good nights sleep. It is however for a clear sign that my auditory system is not entirely recovered as of yet.

On a side note, despite there also being an emphasis on sound enrichment at night in the literature for treating H, I haven't used that consistently as this would in fact often have me wake up in the morning with more T, H and a sore jaw. I believe that, due to TTTS, I had developed a sort of reflex/ pavlov-response whereby I would clench my jaw upon sound exposure. It could also have been the sound that I was using or the cheap speaker, but it could also be an indication that everyone is a bit different in what is helpful for them. I'm still figuring out if I can find a sound that is beneficial to me at night.

I hope the above was helpful and I'll be happy to answer any questions you might have.

 

It certainly has been an interesting read. Personal experiences like this bring me much more insight than any professional health care provider has been able to so far. Thank you for sharing.

I do not know if I could classify myself within 'category 4'. I do not really experience winding up or kindling to 'moderate' noise. The definition of what is moderate to me may of course be much lower than what it used to be or what it is for someone else. My threshold is most definitely lower than what it used to be, but I am not suffering physical discomfort from noises, apart from TTTS (fluttering in the left ear - especially when handling cutlery and the like). Do you have a link to the source which categorizes patients in this manner?

However, I do most definitely get the same type of 'distortion' (which may be the better word?). When I am near constant, low frequency sounds (such as when driving my car or when the kitchen range hood is humming, I hear an intermittent whistle and sometimes a tuning fork competing for my attention and trying to set itself above the baseline of the external noise. Once I pull into the driveway or turn off the hood, that whistling is gone as well...

The information you shared will certainly be something I will bring up when visiting the audiologist again. Maybe I really just need to bite the bullet for a while, to get further improvement. The reason I think it might work for me too is that after a night of sleeping with sound enrichment, the reactiveness is often gone or much less present. The nature of the normal T has changed a bit too by that point though, but is not any more intrusive than the night before.

What has me a bit perplexed though is that I had this 'distortion' or 'reactivity' since day 1 of my T, which I doubt was brought on by acoustic trauma (since I got it during exams). At that point I did not know what it was and had not even an inkling of sound sensitivity. It is only later that it developed into that (and the T became even more reactive).

In any case, I'm glad yours has improved as much as it has and I wish you further success.

 

@Mellow7

I believe this categorization was originally done by Jastreboff, for example in his book Tinnitus Retraining Therapy: Implementing the Neurophysiological Model. I realize that Jastreboff and his findings are heavily debated here, but they are often still at the basis of any form of proper TRT by an audiologist, and hence yours might have put you in a certain category.

Regarding the changes in auditory symptoms you mention, it is not uncommon - especially in the early stage - that the symptoms change. Quite often they improve over time, and I suppose also in my case I cannot prove to which extent simply the passing of time also has an effect on the healing process. Generally though, I believe time + protection against excessive loud sound + continued gradual exposure to normal levels of (broadband) sound + reduction of anxiety stress and any other contributing physical or mental issues that might contribute to H&T, is the best way forward.

Edit: since you indicate that your T&H are not caused by acoustic trauma, it would be a good idea to rule out any other causes that may be treatable as well. Auditory symptoms can also be caused by pinched nerves, certain diseases, certain medications etc.

 

Thanks a lot for this threadate im in a veery similar situation and ive already came to the same conclusions as u. Only thign is that im not sure if pink noise is good for me. Well at least i havent found a good one yet.

Since we're so similar; which pink noise did u listen to?

 

I think you have various options.

• There is a broadband pink noise CD produced by the hyperacusis network which contains analog filtered pink noise from 1hz to - I believe - 22khz (or thereabouts). This one is supposedly very good, but I have not tried it as it is not (yet) available digitally. (hyperacusis.net)
• There is an "H & T sound therapy" app, made by another sufferer, that contains a high quality pink noise and has the option to EQ certain frequencies. I have used this one in the beginning but unfortunate I got some problems with the gapless playback of the sound.
• There are various other 'noise generator' apps available, many of which allow you to switch between brown, pink, white noise and various settings in between, allow you to eq the sound, and/or allow you to set the lowest and highest frequency manually. A possible downside of those is that the noise is digitally generated and might therefor be a bit more 'harsh' compared to pre-recorded high quality sources.
• Another high-quality source made by another sufferer can be found here: https://sites.google.com/site/johnsaudiopage/broadband-noise-therapy-1

I primarily used a mixture of various apps.

The delivery system is also important, if you use laptop or cellphone speaker you will lose low frequencies, certain mid/high frequencies are amplified, while the highest frequencies are lost. (In-ear)earbuds and closed headphones are in general also not recommended for T&H patients, with the exception being open against-the-ear headphones, such as those that I have used. It is also possible to use a stationary sound speaker but this might be impractical.

One should listen to the pink noise for a fixed amount of time at a fixed level, while ideally not focusing on it and remaining able to hear other sounds around you. Over time, one can slowly increase the length of the exposure and the volume, and possibly certain (high) frequencies. It should never be too load or uncomfortable.

The above is a very general summary of how one could use pink noise to improve H. Again, I am not an audiologist and I simply base this on my own experiences that I would like to share to hopefully give people here some insight. The best course of action with any auditory symptoms is still to have them checked out and treated by knowledgeable professional. Unfortunately, there are not many who really understand H. As a minimum, I would recommend to have LDL's (loudness discomfort levels) checked periodically by an audiologist, as these will show if you condition is improving, and this will most likely be apparent even before you start noticing improvements in everyday life (at least that was the case for me).

On a side note, it is - as far as I am aware - still debated to which extent pink noise is required/essential for improvement, and to which extent the same could not be achieved via regular sound exposure (e.g. to every day sounds, music, etc.). In my view, pink noise has certain benefits as it - in its pure form - covers the entire frequency spectrum, is easy to put on in the background and ignore, and mimics the everyday frequency spectrum in the sense that there is less emphasis on the high frequencies, which are also usually the frequencies that are most difficult for an H patient to tolerate. In addition, one can use it in a systematic and controlled way, while everyday sounds are unpredictable.

I've digressed a bit from your question but hope my reply is nevertheless helpful.

 

You think not listening to pink noise at all can be fine too?

 

Did you also have the tensor tympani muscle get tense and cause a feel of ear fulness making sound muffled?

 

@Dja I believe that one can also improve given time and by exposing yourself to normal levels of sound, while protecting against sound that is actually too loud. In that respect, pink noise is not always necessary, but it has certain benefits when it comes to treatment, as I have mentioned in my post above.

I also experienced TTTS with tension/fullness in my ears, and referred pain in my jaw and face. This has also reduced a lot but isn't quite gone yet. I still get TTTS when I use a phone close to my ear (strangely enough I get it in my left ear when I hold the phone to the right ear!)., I also get it when I touch my face close to my ears. This might be due to the nerves getting stimulated. Generally through, TTTS is believed to be a subconscious protective reflex of the ears if they fear they are being damages by loud noise. With hyperacusis, this protective reflex can kick into overdrive. Anxiety can be a major factor in maintaining these symptoms, as can tension in the back/neck/shoulders.

 

Your T baseline.

 

@another sean

I've experienced a temporary increase of most of my symptoms after using pink noise / sound exposure, but this quickly died back down when I gave my ears some rest. Again, it's like a workout that leaves you a little sore/sensitive, but makes you stronger in the end. So no, I did not have any (permanent) baseline increases, although progress is not always linear and symptoms can fluctuate a bit.

 

So basically you say you treated your H and T with further acoustic traumas. And maybe you were going to be cured anyways. The theory you refer to:

is unproven, and maintained with stories like yours and by clinicians with dubious reporting standards. Often I've talked to these clinicians and they've said that by overprotect they don't mean from loud sounds, but from moderate ones, and yet time and time again we see all of you exposing yourselves to further acoustic traumas like these dishes.

There is never going to be reconciliation between the two camps, there's no middle ground. For us this is very dangerous 'advice' that will make many of its readers worse, and for you guys you think it's helped.

 

@japongus

I agree with @Coffeebean self help treatment that has worked and I believe will continue to do so and congratulate him. Regarding ENT doctors, clinicians etc. I believe they want to help their tinnitus patients to the best of their ability. However, it is my belief whilst they know about the anatomy of the ear and can treat it medically or surgically and any underlying medical problem associated with the auditory system. I believe the majority of them know very little about tinnitus nor understand, it or able to treat it effectively, as most of them have never experienced it.

Michael

 

For all that might be interested, I had another check-up with my audiologist lately and my hyperacusis has improved some more (better LDL scores on all frequencies). I still have the 'reactive / sound sensitive' tinnitus a bit, I discussed this with my audiologist and while he could not give an exact diagnosis he indicated that it is most likely more related to hyperacusis and not to tinnitus, and that it might improve further when my hyperacusis improves further (which according to my audiologist is possible if I continue to desensitize as I have been doing).

To avoid any confusion: I am not advocating to treat T&H with additional 'acoustic trauma's', I'm only saying that if you slowly continue to expose your ears to normal levels of sound, you can improve your H and related symptoms. The clanking of dishes, whilst it may be unpleasant depending on your level of hyperacusis, is not an 'acoustic trauma' unless you smash them extremely loudly in close proximity to your ears, which you should not do of course. Just take slow steps forward to introduce more and more sound into your life, and protect your ears when levels actually become dangerous (live music etc.) or when you might not yet be ready for these sounds due to hyperacusis still being severe. In that sense I do not agree that there is no 'middle ground', the whole of the treatment involves finding a middle ground between over- and underprotection, and slowly increasing your tolerances within safe limits.

Edit: I appreciate that research in the field of hyperacusis is still lacking and that of course simply the passing of time can also contribute to recovery. Generally speaking though, almost all of the research that has been done over the last few decades indicates that slowly desensitizing the auditory system with pink noise, noise generators, exposure etc. provides much greater benefits than simply waiting it out, and that overprotection is dangerous as it will increase symptoms. This research is not the absolute unquestionable truth or anything, but for me if very strongly points in the direction that it is worth it to at least try to take these steps to improve.

 

Thank you for your post, all very interesting. Regarding the medications comment, is there a list of medications most likely to aggravate T or H
Allan

 

Loud noises make me feel very uncomfortable and scary without any pain . Is that Hyperacusis or phonophobia@ Does anybody know?
Even people talking loud in cafeterias make me uncomfortablle .

 

Wanted to ask something about this paragraph. You say you felt sore and then felt better after recovery. What was this recovery period exactly? Was it turning the pink noise off for some time?

 

I read this every day. Thank you

 

even if my tinnitus and hearing loss were cured I would spend the rest of my life advocating for a cure for pain hyperacusis.

bio-medical research is far more important then "lets hope it goes away"

 

How long did the TTTS take to resolve? My feeling is that on days with low Tinnitus the TTTS happens more often and vice versa. My ear is moving a few times a day. This cannot be just a brain thing.

 

I think the brain is telling the tensor typani to be hypersensitive to prevent further hearing damage.

Phantom limb syndrome is accompanied by muscle spasms in the immediate area around the lost limb, TTTS is also a muscle spasm. That's another clue.