Hyperacusis, As I See It

[Michael Leigh]

Thank you very much for your detailed explanation . You are really expert in this field, you know so many things about this matter. I really appreciate your effort and time to help me and other people.

Thank you for your kind comments @Marko Nakovski

I have had tinnitus a long time and acquired a lot of experience but do not consider myself an expert in this field because it is very complex. When I first got this condition twenty two years ago, I was helped in a tinnitus forum similar to this one by people that had it for many years and coped. Their help and wise counsel was invaluable, for I was very scared for my future and thought my life was over. It is my purpose to try and help people affected with tinnitus in anyway possible.

You should be able to order the Oasis S-650 or another one of their models from Amazon and get it shipped to your part of the world. If you are having difficulty, then contact me and I'm sure something can be worked out.

Take care
Michael

 

[Michael Leigh]

Hi Michael, white noise actually mask my T louder so this device will not be good for me? also what should I do about the very low frequencies? I recently acquired T tones as low as 160hz and 600hz which as now the most intrusive.

Also do videos like these count as sound enrichment? I have been this track for a long time and it helps because it has high and low frequencies

HI @Eric N

As long as you are not deliberately trying to mask your tinnitus with white noise or any other sound you will be fine. Just set the volume of the sound machine to low and doesn't matter if it mask your tinnitus because the tinnitus is quite low anyway and you should habituate in time. I always advise using sound enrichment even after habituation has been reached.

The video you mention does count as sound enrichment and if you find it helpful then continue with it. As long as you are not playing sound enrichment through headphones any sound or video that helps then use it.

Michael

 

[ozgeA]

What about TTTS @Michael Leigh? Any recommendation?

 

[Michael Leigh]

What about TTTS @Michael Leigh? Any recommendation?

People that have TTTS usually have hyperacusis and tinnitus. These three conditions will require treatment using sound therapy, in the form of white noise generators and counselling with a Hearing Therapist or Audiologist.

 

[Gman]

People that have TTTS usually have hyperacusis and tinnitus. These three conditions will require treatment using sound therapy, in the form of white noise generators and counselling with a Hearing Therapist or Audiologist.

When you started TRT did the white noise make your T ring louder temporarily? i.e. did it react to the sound?

 

[Michael Leigh]

When you started TRT did the white noise make your T ring louder temporarily? i.e. did it react to the sound?

Yes it did but there was a workaround that my Hearing Therapist advised and something I tell people that are new to wearing white noise generators.

Some people new to white noise generators, are told by their therapist to wear them straight off for 6 to 10hrs continuously. This can cause irritation and make the tinnitus ring louder and if they have hyperacusis, make it more acute. The solution is to start off wearing the WNGs for just 1 or 2hrs then take them off for the same duration. Slowly increase the wearing time over a few weeks until 6 to 10hrs wearing time is achieved.

By slowly introducing the WNGs to the ear and auditory system, there is less chance of irritating the tinnitus and hyperacusis.

 

[Gman]

Yes it did but there was a workaround that my Hearing Therapist advised and something I tell people that are new to wearing white noise generators.

Some people new to white noise generators, are told by their therapist to wear them straight off for 6 to 10hrs continuously. This can cause irritation and make the tinnitus ring louder and if they have hyperacusis, make it more acute. The solution is to start off wearing the WNGs for just 1 or 2hrs then take them off for the same duration. Slowly increase the wearing time over a few weeks until 6 to 10hrs wearing time is achieved.

By slowly introducing the WNGs to the ear and auditory system, there is less chance of irritating the tinnitus and hyperacusis.

That makes a lot of sense.

I've recently had a worsening of T, H and my fluttering style TTTS came back (although the cramping style never went away but it had weakened somewhat over the year). I had almost rid myself of H and T was mostly bearable.

But it's the worsening T and the return of H that is most concerning. I've been very careful not to be exposed to loud sounds, without overprotecting of course, but it seems some brief exposure to vibrations got me.

Now my T even reacts to 32db pink noise played on the computer.
After nearly 2 years since getting H, I've decided to see a well respected audiologist in my home country to try and overcome this, although I now am very distrustful. I've been worsened by almost all medical and audiological professionals I've sought help from in this miserable country. My T was not even sound induced and was so mild at the start, I just can't fathom how bad luck, stupidity and my ignorant trust has put me in this predicament.

Anyway, with my cramping TTTS from ASD they don't recommend any in ear WNGs, so TRT wouldn't be an option, as far as I know. But hopefully something can help.

 

[Marko Nakovski]

@Michael Leigh Unfortunatelly they dont ship their products to my country. Even amazon doesnt ship the sound machines, so I supposse that I cant get them

 

[Tinker Bell]

@Michael Leigh Unfortunatelly they dont ship their products to my country. Even amazon doesnt ship the sound machines, so I supposse that I cant get them

Could you download the ReSound app? It has a variety of sounds, include white, pink and brown noise. I use the crickets sound paired with a Bose wireless speaker. The sound quality is excellent.

The app is designed for individuals with tinnitus, and I like the ability to use different sounds. You can also combine sounds, like crickets with pink noise, to create combinations personalized to your tinnitus.

 

[Marko Nakovski]

@Tinker Bell Where can I download it ? ITs on youtube or playstore ? I think I can but I dont have any sound machine ... I just found one company sound of sleep , based in UK. THey have some sound devices and I already contacted them. They are in Europe just like my country so I think they can ship their products. I cant find Bose email for contact. Do you maybe know their email ?

 

[Tinker Bell]

@Tinker Bell Where can I download it ? ITs on youtube or playstore ? I think I can but I dont have any sound machine ... I just found one company sound of sleep , based in UK. THey have some sound devices and I already contacted them. They are in Europe just like my country so I think they can ship their products. I cant find Bose email for contact. Do you maybe know their email ?

Do you have access to Amazon? Bose sells its products on Amazon.

ReSound is an app for smart phones. Search your phone or tablet's app store and hopefully you will find it. There are members in Europe who use it, so hopefully you can too.

 

[Marko Nakovski]

@Tinker Bell I dont have but I can make some. However amazon doesnt ship their products to my country .. Maybe I should find something in UK . THanks for the information

 

[Tinker Bell]

@Tinker Bell I dont have but I can make some. However amazon doesnt ship their products to my country .. Maybe I should find something in UK . THanks for the information

I did a quick search and found some Bose contact information for your region, in case you're able to use ReSound or a similar app.

https://global.bose.com/en_us/europe/macedonia.html

I wish you luck! I remember it was frustrating finding the right sound enrichment that did not further irritate my tinnitus. Particular frequencies really bother me, and I find white noise to be harsh compared to pink noise. It was a huge relief when I finally found a crickets sound I preferred.

 

[Marko Nakovski]

@Tinker Bell Oh they have stores in Europe too, I didnt know that. I will contact them right now. Thank you very much for this information. So now I should ask them for some sound device for tinnitus while Im sleeping ? That will be the right explanation when Im asking for product ?

 

[Tinker Bell]

@Tinker Bell Oh they have stores in Europe too, I didnt know that. I will contact them right now. Thank you very much for this information. So now I should ask them for some sound device for tinnitus while Im sleeping ? That will be the right explanation when Im asking for product ?

I am unsure if Bose makes tinnitus sound devices. They make speakers, which can be used in conjunction with a phone or tablet to play sounds. For members who already have those devices, adding a quality speaker is an easy way to provide sound enrichment.

 

[Michael Leigh]

Anyway, with my cramping TTTS from ASD they don't recommend any in ear WNGs, so TRT wouldn't be an option, as far as I know. But hopefully something can help.

I have read your first post to this forum and you have quite a lot going on regarding various medical conditions. I tend to agree that WNGs may not be suitable for you particularly as you've mentioned, your tinnitus wasn't noise induced. One of the most important parts of TRT that a lot of people do not realize is the "counselling". I have mentioned this numerous times in my posts and also in my article o my started threads: What is TRT and when should it be started?

Tinnitus can be a very complex. Depending on how severe it is and a person's make up will determine how they are able to cope emotionally with it. It is alright for some people to say, don't take antidepressants or benzodiazepines such as clonazepam. These people may not find tinnitus debilitating enough to warrant taking such medications. I advise clonazepam shouldn't be taken too regularly as dependency issues may arrise. I have had no problem in the 8 years I have been taking it, when my tinnitus is very severe and nothing else will calm it down.

If a person also has hyperacusis with the tinnitus more stress is put on their mental and emotional wellbeing. The medical conditions that you describe, lead me to believe counselling with a Hearing Therapist or Audiologist specialising in tinnitus and hyperacusis management will be helpful.

 

[Michael Leigh]

@Michael Leigh Unfortunatelly they dont ship their products to my country. Even amazon doesnt ship the sound machines, so I supposse that I cant get them

@Marko Nakovski

That is unfortunate. You could download nature sounds to your mobile phone from YouTube and Bluetooth it to a high quality Bose speaker. Alternatively, you could buy a Bluetooth speaker off ebay and there are many. They will be cheaper than the Bose and probably not as high quality, but they should supply sufficient sound enrichment compared to the small speaker within your mobile phone, which is just not suitable.

Michael

PS: Consider purchasing a radio that can be bluetoothed to your mobile phone.

 

[Gman]

I have read your first post to this forum and you have quite a lot going on regarding various medical conditions. I tend to agree that WNGs may not be suitable for you particularly as you've mentioned, your tinnitus wasn't noise induced. One of the most important parts of TRT that a lot of people do not realize is the "counselling". I have mentioned this numerous times in my posts and also in my article o my started threads: What is TRT and when should it be started?

Tinnitus can be a very complex. Depending on how severe it is and a person's make up will determine how they are able to cope emotionally with it. It is alright for some people to say, don't take antidepressants or benzodiazepines such as clonazepam. These people may not find tinnitus debilitating enough to warrant taking such medications. I advise clonazepam shouldn't be taken too regularly as dependency issues may arrise. I have had no problem in the 8 years I have been taking it, when my tinnitus is very severe and nothing else will calm it down.

If a person also has hyperacusis with the tinnitus more stress is put on their mental and emotional wellbeing. The medical conditions that you describe, lead me to believe counselling with a Hearing Therapist or Audiologist specialising in tinnitus and hyperacusis management will be helpful.

It's true, I do have some conditions, any of which could have contributed to developing T, not just the ear wax. Also once you reach a certain age, one can't rule out noise exposure as a factor, especially if a long time city dweller.

Sound is most definitely an issue for me now. Trying to find out what was wrong only made things worse, because not all medical professionals are equal and many are incompetent. They mostly want to make money and do not worry about conducting dangerous procedures.

Clonazepam helped me a lot earlier this year, even though I didn't take much of it.

Anyway, thanks Michael, I will be seeing an audiologist in the not too distant future who is an expert on TTTS/ASD. The ones in this country do not know much and, as I have found out, can exacerbate issues.

 

[Michael Leigh]

Trying to find out what was wrong only made things worse, because not all medical professionals are equal and many are incompetent. They mostly want to make money and do not worry about conducting dangerous procedures.

It is a very sad that some people in the medical field, who ae supposed to be caring and helpful towards someone in difficulty. Their main interest seems to be making money from people that are in distress. One person new to tinnitus recently contacted me. The tinnitus was caused by noise trauma. She has very mild hearing loss and all the Audiologist was interested in was getting her to buy a very expensive hearing aid which is totally unnecessary, especially for someone just 2 months in with tinnitus.

Best treatment for tinnitus in the early stages is to do nothing and leave it alone. Providing there is no deafness, pain in the ears, dizziness or balance problems.

I will be seeing an audiologist in the not too distant future who is an expert on TTTS/ASD. The ones in this country do not know much and, as I have found out, can exacerbate issues.

I wish you the best of luck with the Audiologist you are going to see Gman. Hopefully you will get the help you need.

 

[Marko Nakovski]

@Michael Leigh I found devices that ship their products in Europe. I see that you already discussed on another topic last year about the Lectrofan sound devices. I found out that they have great rating from customers and some people who do review in depth about these kinds of devices. Now speaking about white noise while we sleep, what type of sound is considered as white noise ? Can I listen to rain sounds, spaceship, ocean and similar sounds to help me for this problem ? Im asking this beacuse I saw that Lectrofan doesnt have so many type of sounds to choose while the other product Sound+Sleep mini and classic have much more like ocean, rain, city and etc. They are also more expensive but Im willing to spend more If these type sounds can be considered as a therapy. So should I listen strictly white noise, pink noise or I can listen sounds from nature? Sorry that Im boring and asking you so many questions.

 

[Michael Leigh]

I found devices that ship their products in Europe. I see that you already discussed on another topic last year about the Lectrofan sound devices.

HI @Marko Nakovski

I do not recall discussing the Lectofan sound device but believe it will suit your needs for sound enrichment. It doesn't matter what sound you are using for sound enrichment at night, as long as it is not "music". Music draws attention to itself and therefore not ideal for night time use as the brain can find it more difficult to ignore. All the sounds that you have mentioned are suitable for sound enrichment.

So should I listen strictly white noise, pink noise or I can listen sounds from nature? Sorry that Im boring and asking you so many questions.

You do not have to strictly listen to white noise. Use any sound that you find easy to relax to, at the same time easy to ignore so it's drawing too much attention to itself. I do not find your questions boring. On the contrary, I find them to be interesting and well thought out. Hopefully if my answers are helpful others reading this thread might find them useful too.

All the best
Michael

 

[Marko Nakovski]

@Michael Leigh Thank you, I really appreciate your help. Tommorow I will order another product from the same company which is similar to Lectrofan and have the same sounds plus offer even more. Its sound+sleep, it has 30 sounds and a timer.

 

[Irish]

HI @Irish

People that experience hyperacusis often notice improvement over time without treatment. In more severe cases specialist treatment wearing white noise generators and counselling with a Hearing Therapist or Audiologist may be necessary. A lot can be achieved with self help as I have mentioned in my post: Hyperacusis, As I see it.

In addition to your hyperacusis, you have mentioned that you have TTTS, which I believe to be the abbreviation for: Tonic Tensor Tympani Syndrome? If this is so, then I assume you have been diagnosed with this condition and therefore, aware that it is complex and requires specialist treatment in the form of counselling?

From your post I gather that you are only troubled by tinnitus occasionally. So the main problems seem to be Hyperacusis and TTTS. If this is correct, then I think you might be expecting too much from your self help treatment using sound therapy. It is a good idea to continue with it but please keep in mind, you may have to seek professional help to treat your hyperacusis and (TTTS) Tonic Tensor Tympani Syndrome.

Set the volume of the sound machine at a level where you can easily ignore it without it drawing attention to itself. It takes time to get used to a sound machine. I recommend up to 2 months.

All the best
Michael

Thanks @Michael Leigh for the reply.
Yes I agree with you that the kind of sound enrichment I am currently using probably will not help all that much with my H and TTTS and that WNGs and counselling sessions will be required to make any real progress on my situation.
Actually I was never diagnosed with anything, the consultants I went to did not know for sure what I had (aside from Hyperacusis). One of them postulated that it 'could' be ETD, but he was somewhat unsure as he said I did not fit some of the symptoms. And these are pretty much the top ear consultants in Ireland.
So I've pretty much given up on them, and through my own research and this forum, I have narrowed down to almost definitely being some form of TTTS, going on the symptoms I have.
I am building up the funds to buy WNGs, and while my H can be troublesome (particularly when driving and people are speaking to me in raised voices) and my TTTS is almost every day uncomfortable, unpleasant and sometimes painful too, it's not so bad that I want to throw myself off a bridge.
Thanks for all the useful info Michael, I'll continue to keep reading your informative posts.

 

[dpdx]

Hyperacusis usually goes away but it also can be permanent. I think Hyperacusis is caused by nerve damage. I have very bad hyperacusis on my right ear from the ear tests. I have the sound oasis machine on every night but its not doing much. I might have to do TRT therapy in a year or so since I am not getting better. I damaged a lot of my hearing.

 

[Lola808]

@Michael Leigh I have tinnitus that calmed down in both ears mostly in left but bearable. I've read almost all your advise. My hyperacusis is what seems most apparent in left ear. We sleep with ac on and I can sleep through the night. As soon as day starts the sound of water pressure in a hose is all I hear from left ear. I'm seven weeks in. I was falling asleep in head phones watching movies.

As I put light ear plugs in its not that bad.
Can you tell me what you recommend for me?

 

[Michael Leigh]

@Michael Leigh I have tinnitus that calmed down in both ears mostly in left but bearable. I've read almost all your advise. My hyperacusis is what seems most apparent in left ear. We sleep with ac on and I can sleep through the night. As soon as day starts the sound of water pressure in a hose is all I hear from left ear. I'm seven weeks in. I was falling asleep in head phones watching movies.

As I put light ear plugs in its not that bad.
Can you tell me what you recommend for me?

HI @Lola808

Thank you for your post and I hope my articles were of some help to you. As you know I do not recommend people with tinnitus to use headphones even at low volume and especially when the tinnitus is noise induced. This is just advice and I appreciate we are all different. If you wish to continue using headphones then do so but it's something I don't advise.

You are just 7 weeks in and therefore quite new to tinnitus. The early weeks and months can be especially troublesome for some people. It will improve with time as is often the case, so I advise using low level sound enrichment during the day and at night. If you find the noise from the air conditioning bothersome this could be an issue. However, since you're able to sleep throughout the night until morning it would appear not. I think it's a good idea to be seen at ENT for tests to be done on your auditory system: hearing test and MRI scan etc, just to make sure everything is in order and nothing untoward is going on.

If it is "noise induced tinnitus" that you have from using headphones, then you see the reasons I have advised not to use them and keep away from overly loud sounds as mentioned in many of my posts. Things will improve but it takes time. If you are feeling stressed and anxious which is quite understandable with this condition, then talk to your doctor, who may prescribe something to help you relax and the stress will improve with time.

Please follow some of my suggestions in Hyperacusis, As I see it, and hopefully with time you will make steady improvement. Please contact me again if you think I might be able to help.

All the best
Michael

 

[East]

@Michael Leigh I have tinnitus that calmed down in both ears mostly in left but bearable. I've read almost all your advise. My hyperacusis is what seems most apparent in left ear. We sleep with ac on and I can sleep through the night. As soon as day starts the sound of water pressure in a hose is all I hear from left ear. I'm seven weeks in. I was falling asleep in head phones watching movies.

As I put light ear plugs in its not that bad.
Can you tell me what you recommend for me?

Hey another person from Hawaii! I'm in Honolulu as well

 

[Lola808]

Hey another person from Hawaii! I'm in Honolulu as well[/QUOTE

Aloha: Where do you go to get support?

 

[East]

Aloha: Where do you go to get support?

As in doctors?? I've seen a few GPs and they cleaned some earwax and said my ears looked fine. Going to see an audiologist and probably an ENT soon. Doubt they will be of any help.

For emotional support basically nobody understands except people on here and the hyperacusis facebook page. It's a really lonely feeling having a rare, invisible disease.

 

[Michael Leigh]

As in doctors?? I've seen a few GPs and they cleaned some earwax and said my ears looked fine. Going to see an audiologist and probably an ENT soon. Doubt they will be of any help.

@East

You need to see an Audiologist that practices tinnitus and hyperacusis management and treatment. This will usually include the wearing of white noise generators. The idea of this treatment is to desensitise your oversensitivity to sound. Counselling would be advisable to help with any stress or anxiety that tinnitus and hyperacusis can have on a person. Unless you have an underlying medical problem within your auditory system that is causing the tinnitus and hyperacusis, an ENT doctor in most cases will not be able to help you as this is not normally their area of expertise.

Michael

PS: If you are unable to find an Audiologist that specialises in Tinnitus and hyperacusis treatment, then you could try self help.