Hyperacusis and Reactive Tinnitus — Help with Sound Generators & Treatment Methods?

[LynsieIndiana]

Hello,

I developed reactive tinnitus and mild hyperacusis Dec 2019. My tinnitus goes from total silence to a ring, a hiss, an electric sound, or clicking of various degrees primarily in my right ear. I am scheduled to get sound generators 5/20, but I have several questions and am hoping that some of the people on this forum can help.

I live in Indiana and there are not any audiologists or ENTs that specialize in hyperacusis or even TRT. I even had to print out information for my audiologist about hyperacusis. My questions are below:

1. Once I receive the sound generators what is the schedule of wearing and how should it be increased?
2. Since my tinnitus is not present all of the time, at what volume should the generators be set?
3. Since I have reactive tinnitus, is this the best treatment option for me?

Any advice would be much appreciated!

 

[Zugzug]

Firstly, I recommend finding out your experience with pink noise in general. If you go on Youtube and listen to pink noise at a low volume, what is the outcome? Do your ears hurt more? Does the tinnitus temporarily spike?

 

[Michael Leigh]

Hello,

I developed reactive tinnitus and mild hyperacusis Dec 2019. My tinnitus goes from total silence to a ring, a hiss, an electric sound, or clicking of various degrees primarily in my right ear. I am scheduled to get sound generators 5/20, but I have several questions and am hoping that some of the people on this forum can help.

I live in Indiana and there are not any audiologists or ENTs that specialize in hyperacusis or even TRT. I even had to print out information for my audiologist about hyperacusis. My questions are below:

1. Once I receive the sound generators what is the schedule of wearing and how should it be increased?
2. Since my tinnitus is not present all of the time, at what volume should the generators be set?
3. Since I have reactive tinnitus, is this the best treatment option for me?

Any advice would be much appreciated!

HI @LynsieIndiana

I have used white noise generators for many years and have had TRT treatment which lasted 2 years. This required wearing white noise generators and having regular counselling with my Hearing therapist. When the treatment ended my hyperacusis was completely cured and the tinnitus reduced to a low level until 2008 when I had a 2nd noise trauma.

Firstly, I want to say that I do not believe there is such a thing or condition called Reactive tinnitus, although I am aware that a lot of people have mentioned it in this forum and other tinnitus forums that I visit. Therefore, I respect what you believe. I believe any oversensitivity to sound particularly when it's caused by exposure to loud noise is Hyperacusis. Contrary to what some people think, pain isn't always felt with hyperacusis and is experienced in different levels of severity like tinnitus.

One of the best ways to start using white noise generators is as follows: Put them on in the morning and set the volume slightly below the tinnitus. wear them for just 1 or 2 hours then take them off for the same duration. After 1-2 hours has elapsed put them on again and continue wearing for another 1 or 2 hours. Continue doing this throughout the day. Ideally you want to be able to wear the white noise generators continuously for 6 to 8 hours. However, trying to do this in one go might cause irritation to you ears and thus, increase the hyperacusis and tinnitus if it is present. This is the reason I have suggested that you slowly build-up the wearing time.

Once you are able to wear them continuously for 6 hours or more, try not to keep adjusting the volume of the WNGs. Some people do this when leaving their home and going out on the street. Traffic noise and other environmental sounds can make it difficult to hear WNGs. To compensate some people turn up the volume so they can be heard. Please do not do this as it's the wrong thing to do.

Once you put the wngs on in the morning set the volume slightly below the tinnitus and leave them alone. Over time the brain will habituate to the WNGs and slowly push the tinnitus into the background making it less noticeable. If you keep adjusting the volume of the white noise generators, it makes it more difficult for the brain to habituate to them. If you have hyperacusis the WNGs will also treat it by desensitizing the oversensitivity to sound over time.

At night you shouldn't wear the white noise generators while you sleep. Keep a sound machine by your bedside that plays nature sounds, and set the volume below your tinnitus.

Best of luck
Michael

 

[LynsieIndiana]

Thank you Michael. I agree that reactive tinnitus is just hyperacusis which causes a spike in tinnitus. I really appreciate your expertise. Will you answer some questions for me please? As I stated previously, my audiologist does not know the treatment protocol for TRT.

1. I typically cannot hear my tinnitus unless I am in a quiet room or lay my head on my pillow. I can, at times hear the hissing or pings, when I am in a normal environment, but it is rare. So, should I just set the volume low to help with the hyperacusis?
2. I don't have any pain related to my hyperacusis, it is purely increased tinnitus in the form of different sounds or increased volume when I am exposed to high levels of noise (a restaurant, driving, too much TV, etc.). So, will the sound generators work for me?

 

[LynsieIndiana]

Zugzug. I have attempted to use pink noise. I order the CD and listened to it for various amounts of time. The noise did not cause any pain, but later in the day, the tinnitus would spike each time.

 

[Michael Leigh]

Thank you Michael. I agree that reactive tinnitus is just hyperacusis which causes a spike in tinnitus. I really appreciate your expertise. Will you answer some questions for me please? As I stated previously, my audiologist does not know the treatment protocol for TRT.

1. I typically cannot hear my tinnitus unless I am in a quiet room or lay my head on my pillow. I can, at times hear the hissing or pings, when I am in a normal environment, but it is rare. So, should I just set the volume low to help with the hyperacusis?
2. I don't have any pain related to my hyperacusis, it is purely increased tinnitus in the form of different sounds or increased volume when I am exposed to high levels of noise (a restaurant, driving, too much TV, etc.). So, will the sound generators work for me?

HI @LynsieIndiana

Noise induced tinnitus and hyperacusis are two conditions that interest me because I am familiar with them. Please ask any questions you like and I will try to help. I may not be able to answer all your questions, but hopefully someone on the forum will be able to help. I will paste some links below to articles that I have previously written on tinnitus and hyperacusis that you might find helpful. Should you wish to contact me in future when writing a post, please write my name starting with the @ sign: @Michael Leigh Then I will usually receive an alert message. You can also send me a private message. Click on my Avatar and a box will appear and you should see three tabs, with one headed "start conversation" Just click on that and write your message.

It is good that that you only hear your tinnitus in a quiet room. Therefore, I suggest that you try to avoid quiet rooms whenever possible, by using low level sound enrichment. There is a reason for this which I have written about in my post: New to tinnitus what to do, in the Link below. Try to avoid sleeping in a quiet room too.

In answer to question 2 of your post: The white noise generators should help to desensitise your oversensitivity to sound. The fact that you have low tinnitus I believe puts you in a good position. Treating hyperacusis normally takes about 12 to 24 months. However, because you have low tinnitus I think you will see improvements a lot sooner. I cannot give a specific time frame as we are all different.

All the best
Michael

PS: I advise you not to use headphones to listen to any type of audio even at low volume, as this could increase your tinnitus and aggravate the hyperacusis.

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

[Zugzug]

Zugzug. I have attempted to use pink noise. I order the CD and listened to it for various amounts of time. The noise did not cause any pain, but later in the day, the tinnitus would spike each time.

If there's a "quick reset" aspect to it, that should be fine. Reactive tinnitus is not necessarily a sign that you are damaging your hearing. It can just be your brain's reaction to reduced input. If it goes away after a few hours, resets, and doesn't progressively get worse, that shouldn't be alarming.

However, this is not a game of "no pain, no gain." If something is making you worse, stop. TRT helps some people, but hurts others so be aware of this.

 

[LynsieIndiana]

@Michael Leigh I appreciate your response. I do use a sound generator at night set at a low level. When I go to bed it is set just below my tinnitus level, but by the time I wake up in the morning, my tinnitus is usually quiet. I did read you thread regarding newbies. The information is appreciated.

 

[Michael Leigh]

@Michael Leigh I appreciate your response. I do use a sound generator at night set at a low level. When I go to bed it is set just below my tinnitus level, but by the time I wake up in the morning, my tinnitus is usually quiet. I did read you thread regarding newbies. The information is appreciated.

@LynsieIndiana

That's great news you seem to be doing all the right things. I have the feeling you know a lot more than you're letting on.....

Michael

 

[simb999]

How is it possible for an audiologist not to have some basic knowledge about hyperacusis? We need an information sheet to educate them!

 

[Michael Leigh]

How is it possible for an audiologist not to have some basic knowledge about hyperacusis? We need an information sheet to educate them!

@simb999

You do have a point but it also depends on what training the Audiologist has had? In the UK the role of an Audiologist primarily is to test patients hearing and supply and fit hearing aids and white noise generators. Some of these devices are digital and need to be setup on a computer while the patient is wearing them. My white noise generators are digital. The Audiologist set them up to my specific requirements: giving me the choice of white noise, pink noise and wave sounds. The pitch or frequency of sound could also be tailored to my liking.

My Audiologist is not trained in CBT, TRT or Hyperacusis treatment, that is the role of my Hearing Therapist. However, some Audiologists do practice Tinnitus and Hyperacusis management and treatment and therefore will have this knowledge. It is not unusual to find some of these health professionals, were born with tinnitus or acquired it at some time in their life, hence their interest in tinnitus and hyperacusis treatment.

Michael

 

[Mister Muso]

How is it possible for an audiologist not to have some basic knowledge about hyperacusis? We need an information sheet to educate them!

Audiologists and the medical profession in general are only just now beginning to take tinnitus seriously. It may be another few years until hyperacusis reaches the same level of understanding.

Your best chance is if you happen to find an audiologist who has an understanding of hyperacusis, probably through having experienced it themselves. Many audiologists are tinnitus sufferers, which is what has led them into that profession. If your current audiologist doesn't seem to have the required understanding of your condition, just look for another audiologist.

 

[simb999]

Hi Michael, that's fair enough, I think my comment was borne of the frustration of a condition very few people seem to understand.
Thank you for the support and understanding you give on this forum.

 

[simb999]

Thanks Mister Muso, I've found the only real way forward is self management, understanding triggers etc.
This site has been a huge help, particularly in the early days and just knowing you're not alone.
It sounds like we've trodden a similar path with our tinnitus and hyperacusis. Hope you're managing ok, any tips welcome.

 

[simb999]

Sorry for hijacking your thread Lynsie.

 

[Juan]

@Michael Leigh I appreciate your response. I do use a sound generator at night set at a low level. When I go to bed it is set just below my tinnitus level, but by the time I wake up in the morning, my tinnitus is usually quiet. I did read you thread regarding newbies. The information is appreciated.

Tinnitus sometimes follows patterns that are specific to each person. For some it is louder in the mornings, for others in the evenings...

 

[Michael Leigh]

Hi Michael, that's fair enough, I think my comment was borne of the frustration of a condition very few people seem to understand.
Thank you for the support and understanding you give on this forum.

Thank you for your kind comments @simb999 I hope to continue to help people in this forum if possible. I do understand the frustration you are talking about, as some health professionals are not so well informed about tinnitus and hyperacusis, as we would like them to be. I see that you have noise induced tinnitus. May I ask how are you managing with it now and have you had any treatment?

Michael

 

[Chris809]

To anyone who has reactive T the link below has helped me mask it (90%) for sleep so hopefully it can do the same for you! I use a sound pillow for sleep and I've discovered that the speaker gives off an additional white noise for most of my cricket sounds but the one below doesn't which helps a lot.

 

[simb999]

Hi Michael, I'm 18 months into this and certainly managing a lot better. The first 3 months were horrendous, I was off work and in a very dark place. Had ENT appointment then referred to audiologist who provided me with hearing aids, this helped a huge amount, particularly in my right ear. I then went back to work in March last year but it soon became apparent I couldn't tolerate even normal levels of noise, not ear pain but strange feeling of pressure in my head , sometimes a numbness in my face and tinnitus would spike. Unfortunately I started spiralling into depression again and having suicidal thoughts daily so decided I would give up work, finished in June last year. As far as treatment for the hyperacusis goes, I've never really had any, but last autumn my tinnitus was going crazy at night and in the morning so I started taking my hearing aids out when out and about, driving etc and when doing anything noisy like unloading the dishwasher etc, even though the t went full blast. Also put my Oasis machine to switch off after an hour at night. Trial and error but it stopped the spiking and it's pretty much stayed at a baseline since, I think it's also helped me to get used to hearing the tinnitus and not using the hearing aid as a crutch.

Sorry for the long post, it's difficult to condense such a life changing experience as this.
I would be interested to hear your thoughts.

Many thanks
Sim.

 

[lapidus]

I don't have any pain related to my hyperacusis, it is purely increased tinnitus in the form of different sounds or increased volume when I am exposed to high levels of noise (a restaurant, driving, too much TV, etc.). So, will the sound generators work for me?

Hyperacusis and reactive tinnitus are two different symptoms (although they could be connected in some way in some individuals, no one knows at this point). From what you've written so far it doesn't seem to me that you have hyperacusis.

 

[Michael Leigh]

Hi Michael, I'm 18 months into this and certainly managing a lot better. The first 3 months were horrendous, I was off work and in a very dark place. Had ENT appointment then referred to audiologist who provided me with hearing aids, this helped a huge amount, particularly in my right ear. I then went back to work in March last year but it soon became apparent I couldn't tolerate even normal levels of noise, not ear pain but strange feeling of pressure in my head , sometimes a numbness in my face and tinnitus would spike. Unfortunately I started spiralling into depression again and having suicidal thoughts daily so decided I would give up work, finished in June last year. As far as treatment for the hyperacusis goes, I've never really had any, but last autumn my tinnitus was going crazy at night and in the morning so I started taking my hearing aids out when out and about, driving etc and when doing anything noisy like unloading the dishwasher etc, even though the t went full blast. Also put my Oasis machine to switch off after an hour at night. Trial and error but it stopped the spiking and it's pretty much stayed at a baseline since, I think it's also helped me to get used to hearing the tinnitus and not using the hearing aid as a crutch.

Sorry for the long post, it's difficult to condense such a life changing experience as this.
I would be interested to hear your thoughts.

Many thanks
Sim.

HI @simb999

I have only seen your post by chance as I didn't receive an alert message. Please type the @ sign then my name in future correspondence then hopefully I'll see your post. Thanks for explaining your situation, and I'm pleased that it is under better control and hope your sensitivity to sound continues to improve.

Take care and I wish you well
Michael

 

[simb999]

@Michael Leigh thank you it's much appreciated.

 

[LynsieIndiana]

@Mister Muso I looked all of the state of Indiana for an audiologist, and even an ENT, who were well educated in TRT and hyperacusis. However, there are not any. I have had to provide education to my audiologist so that she would understand the rationale for sound generators for hyperacusis. Unfortunately, I am having to determine the protocol on my own....

 

[Michael Leigh]

@Mister Muso I looked all of the state of Indiana for an audiologist, and even an ENT, who were well educated in TRT and hyperacusis. However, there are not any. I have had to provide education to my audiologist so that she would understand the rationale for sound generators for hyperacusis. Unfortunately, I am having to determine the protocol on my own....

@LynsieIndiana

I would like to know how are you getting on with the white noise generators?

Thanks
Michael

 

[LynsieIndiana]

@ Michael Leigh. I have an appointment at 3:00 today (5/20) to get my noise generators. I know that you said to start wearing them 1 hour on and 1 hour off at first. How do I progress the time to achieve the 8 hours per day? And, when will I know that progress is being made? Appreciate your insight.

 

[Michael Leigh]

@ Michael Leigh. I have an appointment at 3:00 today (5/20) to get my noise generators. I know that you said to start wearing them 1 hour on and 1 hour off at first. How do I progress the time to achieve the 8 hours per day? And, when will I know that progress is being made? Appreciate your insight.

HI @LynsieIndiana

I have only seen your post by chance. If you wish to contact me in future, please write my name as:
@Michael Leigh My name should highlight in yellow and hopefully receive an alert message. I think you left a space after the @ sign then wrote my name and for this reason didn't get an alert message to your post.

See what works for you providing you are not feeling any irritation. Put the noise generators on and where them for 1 or 2hrs. Then take them off for 1 or 2hrs to give your ears a rest. Continue doing this throughout the day. Do this for 5 days. After that increase the wearing time to 2 or 3hrs. Then take them off for 1,2 or 3hrs to give your ears a rest. Experiment to see what works for you. Slowly increase the wearing time until you are able to put them on in the morning, set the level just below your tinnitus and wear them continuously for 6,8 or 10hrs or what your Audiologist has advised.

My advise is suggestions based on my own experience and what I have gained corresponding with people that use white noise generators. Some people try to start off by wearing the white noise generators continuously for 6hrs or more, and find this causes ear irritation and can make the tinnitus or hyperacusis worse. For this reason I suggest slowly introducing the white noise generators.

When you are able to wear them continuously try not to keep adjusting their volume especially when out on the street, as they can be difficult to hear due to road traffic. If you do this your brain will find it more difficult to habituate to the white noise generators.

At night I suggest not to wear the WNG while you sleep. Take them off and use a sound machine by the bedside and set to play, throughout the night until morning.

Hope this helps.
Best of luck.

Michael

 

[LynsieIndiana]

@Michael Leigh

Thank you for the advise. One last question. There are days when I can't hear my tinnitus unless I am in a very quiet room or laying down to sleep. How should I set the volume on those days?

 

[Michael Leigh]

@Michael Leigh

Thank you for the advise. One last question. There are days when I can't hear my tinnitus unless I am in a very quiet room or laying down to sleep. How should I set the volume on those days?

@LynsieIndiana

Since your tinnitus reduces to a level where it is very quiet that is good news. Please try to avoid quiet rooms or laying down to sleep in silence as this is not such a good thing to do especially when practiced often. The brain is cable of increasing its background activity and this is the reason Hearing Therapists and Audiologists, who practice tinnitus and hyperacusis management, advise tinnitus patients to try and avoid quiet rooms and surroundings especially at night. The brain will not only increase it's background activity it will increase the tinnitus too. This can make the tinnitus more intrusive during waking ours. Hence, when we are asleep the brain and auditory system are still active. Proof of this is when a person is in a coma. Doctors often advise friends and relatives of the patient to talk to them as the brain is able to hear - our sense of hearing is the last sense to go. Using low level sound enrichment playing in the background, or a window open allowing outside environmental sounds to drift in is a good idea. The gentle rustling of trees swaying in the breeze is enough to create the ideal ambiance.

When your tinnitus is quiet set the white noise generators to their lowest volume and carry on. Keep doing this until your oversensitivity to sound reduces or completely goes away and you feel content. This will take time so be patient. It is your choice but my advice is not to get drawn into believing there is such a thing as "Reactive Tinnitus". There isn't. This terminology was made-up in tinnitus forums around 15 years ago. Whilst tinnitus can react to sound, it is not an actual medical condition - a person may not develop full-blown hyperacusis, but this oversensitivity to sounds or certain sounds that you and others speak of, usually but not always is a result of exposure to loud noise or sound that was cable of causing tinnitus and has resulted in the auditory system becoming oversensitive to sound.

Some in the medical field have latched onto the word Reactive Tinnitus, and said it is a condition that is separate from hyperacusis. Although a patient can have both conditions, the Reactive Tinnitus needs to be treated first with and please don't laugh sound therapy! I believe there is an ulterior motive here which I wont go into but I'm sure you get my drift.

Some Audiologists advise their patients to treat hyperacusis first and tinnitus second. This is done by slowly increasing the volume of the white noise generators to desensitise the auditory system. I do not like this method nor does my Hearing Therapist, as it often causes irritation to the auditory system by increasing the tinnitus and hyperacusis. I have corresponded with many people that have been advised to do this and all of them have found it problematic. When I have suggested they try my method, that I was taught to set the WNG volume below the tinnitus, they find it more tolerable. Taking your time and doing this slowly I believe you have a better chance of success.

Please feel free to contact me any time and I will try to help.

All the best
Michael

 

[LynsieIndiana]

@Michael Leigh

Thank you so much for taking time to help me. It means the world to me. I will keep you updated on my progress!

 

[Michael Leigh]

@Michael Leigh

Thank you so much for taking time to help me. It means the world to me. I will keep you updated on my progress!

You are welcome and I would be interested to know how you get on.
Take care.

Michael