Hyperacusis, as I see it.

The post below I wrote on another forum and have posted it here as it might be of some help to anyone that has hyperacusis. It is just my personal opinion and not professional medical advice.

Michael Leigh

Hyperacusis, As I See It.

Some members have asked for my opinion on hyperacusis as they are finding it increasingly difficult to live with. They want to know if there is a way of treating this condition so that their life can become a little easier? Or whether it can be completely cured? For a few it has become so distressing they have decided to only leave their homes when it’s absolutely necessary. This is because of the fear of making the symptoms worse, by subjecting their ears to the hustle and bustle of everyday road traffic noise and other environmental sounds that we are all familiar with.

Reading some of the posts in this forum, one can easily see that certain people daren’t leave their homes without first checking they have their earmuffs and an assortment of earplugs in various degrees of attenuation, in readiness for any potential environment that they happen to find themselves in. The cinema, nightclub, restaurant, or on public transport. If money is no object aspiring to custom made moulded earplugs for some is the way to go. It can bring the added assurance they will be getting the best hearing protection. Whether this is true or not doesn’t really matter because it’s what the person believes and this helps to give them that peace of mind which is something many of us strive for at one time or another.

The above may seem a little extreme until I tell you one member provoked a lot of discussion here, when he mentioned having the air bag in a car that he had just purchased disabled in case it was deployed in an accident. I suppose the thought of 170 decibels raining down on his auditory system and the possibility of his tinnitus and hyperacusis shooting through the roof was too much too bear and is more important than a potential life saving device. As strange as this might seem, others have discussed doing the same thing elsewhere on the Internet.

I am not an expert in this field but do have the experience of living with very severe hyperacusis that was brought on with the onset of my tinnitus twenty years ago due to loud noise exposure. It was so severe; conversation with someone at times caused immense pain. However, it was completely cured in two years with TRT and having counselling with a hearing therapist. I wore white noise generators for 10hrs a day and used a sound machine throughout the night until morning for sound enrichment.

My tinnitus had reduced to a very low level.

Some people believe hyperacusis cannot be cured and if treatment such as TRT works then it merely suppresses the condition. In the event of future loud noise exposure it will return and the condition will be worse than before. I believe it's up to the individual to take care of their hearing and not subject themselves to loud noise exposure. However, accidents do happen as in my case. I have previously explained in this forum that my tinnitus increased to very severe levels in 2008 due to noise exposure so won’t go over it again.

To my surprise the hyperacusis did not return and has remained the same till this day, completely silent.

This summer I went onto the Brighton Pier and into the arcade. The place was a hive of activity and many people were using the slot machines. Music was playing and this was mixed with loud laughter so everyone seemed to be having a good time. I had my sound level meter and also a sound App on my mobile phone. Just in case things got too uncomfortable I had my noise reducing earplugs with me that reduce sound levels by 18 decibels.

This was a test and not something I normally do or recommend anyone else to try.

The sound level in that place remained constant at just over 100 decibels. My ears didn’t feel uncomfortable nor did I feel any pain. I stayed at the venue for 30 minutes and then left.

The next morning my tinnitus was silent and I experienced no symptoms of hyperacusis. I do not believe that it is a good idea for someone with tinnitus or hyperacusis (or both) to wear earplugs or noise-reducing earplugs with filters too often, because it’s possible for the auditory system to become hypersensitive.

In some cases it could make matters worse and cause a condition called phonophobia. This is literally having a fear of sound.

I used to counsel someone that had phonophobia like symptoms although she wasn’t diagnosed. This person had hypercausis that gradually got worse and at every opportunity she kept away from sound. This got so bad going out the front door because of the noise was a problem. Her ears couldn’t tolerate the sound of the microwave, dishwasher or the washing machine. She even complained of the sound of rain falling on her conservatory roof that was made of glass. Fortunately she has improved.

There is much discussion on this in the medical field from experts saying that the overuse of hearing protection isn’t good and therefore discouraged as it will lower loudness threshold and I completely agree with this. I think if one isn’t careful they can become paranoid over sound making their hyperacusis and tinnitus worse and I don’t think it’s healthy.

I believe the answer is to seek proper treatment. If TRT is unavailable then start using a sound machine by the bedside at night for sound enrichment. This usually helps to desensitise the auditory system. Try going out for long walks and getting used to everyday sounds instead of keeping away from them by staying at home.

I don’t normally recommend anyone to use white noise generators unless they are under the care of a hearing therapist. However, if your tinnitus is under control and you have habituated but experience hyperacusis, that some call: Reactive tinnitus. Then white noise generators could be the way to go. Two should be used to keep the auditory system in balance and set the volume level low, preferably below the tinnitus. This will help to desensitise the auditory system and treat the hypercusis.

Hearing protection is important and does have its place. If I am going to venues where I believe noise level could become loud then I have my earplugs with me. Night clubs, parties etc.

I would always use them at the cinema although I haven’t been to one in years. Reading some of the posts on this forum people say those places can be very loud.

When I use my petrol lawn mower or electric power tools for those DIY jobs around the home, I always use my ear defenders. I want to live life and enjoy it. Not to be living in fear of hearing a fire truck or ambulance siren coming towards me and I have to panic and quickly insert earplugs or reach for earmuffs to protect my hearing. I just think this is overkill.

Michael

PS: There is a condition called: vestibular hyperacusis. This is where the sound can cause a person to fall, lose balance or experience dizziness, and will probably require more professional help.

[blaze1000]

What is TRT ? I've have Hyperacusis for over 20 years and it still troubles me, for example, I live in a flat and I can hear all my neighbours central heating systems humming away all night and all day too, its hell in the winter but much better spring and summer and sleeping is difficult, a loud bang can be someone dropping a plate in the kitchen ! I have Tinnitus also which doesn't make for a quiet life !!! Your post is very interesting to me !!

[Hidden in reply to blaze1000]

Hi Blaze.

Below is a post about TRT (Tinnitus Retraining Therapy) It is taken from a tinnitus article that I have recently written. If you would like a copy, please send me a private message with your email address.

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Tinnitus Retraining Therapy or (TRT) has been around for a while and is one of the most effective treatments for tinnitus. Many patients achieve good results with it but like anything, the benefits will be variable from person to person. It involves using sound enrichment and counselling. Sound enrichment is achieved by wearing white noise generators (wngs). The device closely resembles a hearing aid and fits around the back of the ear, from which a small tube is attached that rests in the entrance to the ear canal. The white noise is adjusted via a small rocker switch on the wngs.

There is another type of white noise generator that serves the same purpose but is smaller and more discreet which some people might prefer. The device is inserted into the ear canal and has a small volume control to adjust the white noise. The second part of the treatment involves counselling. It is necessary for the patient to have regular outpatients appointments, with their Hearing Therapist who is trained in the field of tinnitus and the perception of it. Some patients are also affected with Hyperacusis (sensitivity to sound). If it is present at the same time as having tinnitus then the white noise generators will also treat it. TRT was founded by Professor Pawel Jasterboff and follows a strict protocol, which should be adhered to for the patient to receive maximum benefit.

It must be said, the treatment can be expensive and it’s not available at all hospitals and tinnitus clinics. Some that practice it have adapted the treatment to their requirements but good results are still possible. If one chooses, they can do their own research to find a clinic that practices the Jasterboff method. Tinnitus retraining therapy is not a quick treatment and therefore must not be rushed. It requires the patient to wear two white noise generators for up to ten hours a day. They are first put on in the morning and the white noise set to just below the tinnitus, and then left alone. It can be tempting to turn up the volume when out on the street as traffic noise can make it difficult to hear them. Please don’t do this.

Constantly adjusting wngs volume will delay the habituation process. Over time the brain habituates to the white noise generator and pushes the tinnitus further into the background where it becomes less noticeable. This cannot be successfully achieved if the wngs is repeatedly adjusted throughout the day.

Tinnitus counselling is a vital part of TRT. Tinnitus can become a problem when the patient starts to believe nothing can be done about the condition. If one isn’t careful anxiety and depression can start to take hold. Through regular counselling sessions with a Hearing Therapist the patient learns to look at their tinnitus as non life threatening and not to be constantly afraid of it and to be monitoring every little change in its perception.

At first the therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing, which is perfectly understandable. The main goal here is to gradually help them look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured.

Therefore, it must be stressed and understood, this treatment takes time. To complete a course of TRT takes approximately twelve to twenty four months and in some cases longer. The duration of each counselling session is left to the discretion of the Hearing Therapist. Typically, these can last up to one hour or more. The amount of appointments required will be different for each patient, but it is quality rather than the quantity of the counselling that really matters. There are a few misconceptions about this treatment and the way it is administered that some people misunderstand which I want to address.

If a patient is given one white noise generator to wear this is not TRT. When two wngs are issued and no tinnitus counselling is offered on a regular basis, it is not TRT. I am not saying that a patient will not gain any benefit from the above treatments; I only want to state they do not follow the proper Tinnitus retraining therapy protocol. White noise generators should not be used when going to sleep at night. When retiring for the night, one should use a sound machine by the bedside and adjusted to a level just below the tinnitus. The sound machine should be set to play throughout the night until morning.

Michael

[blaze1000]

Michaelee, many thanks for the info, I shall print a copy of your post. One thing I'd like to know is whether it's possible to get TRT on the NHS ? If so, how does one go about approaching the right channels to get the show on the road ? I'm so used to having Hyperacusis that I've just learned to live with the condition, the only thing that has changed is that my Tinnitus has got worse, and I'm waiting for an ENT appointment and some head scans to rule out a more serious condition. One last point, how expensive is TRT if one goes down the private route ? I'm glad you had a result and wish you all the best !

[Hidden in reply to blaze1000]

HI Blaze,

TRT is available on the NHS but only at certain hospitals. Even then, as I've mentioned in my post, some adapt the treatment to their requirements. Your GP would need to refer you an ENT clinic that practices TRT.

If you decide to go private, I think you are looking at 3 to 4k for the treatment.

You have had tinnitus and hyperacusis for a long time and I would have thought, you would have habituated. If your tinnitus/hyperacusis is getting worse then something usually causes this. Do you listen to music through headphones or attending places where loud music is played? If I were you I'd wait for your ENT appointment via the NHS before going privately for TRT.

Hope this helps

Michael

[Greenman2019]

HI Michael Do you know where you can get the sound machines you mention in your article? is there a good make to look out for? many thanks