Hyperacusis, As I See It

I definitely understand. No one told me don't fall asleep with headphones on. No one told me don't go to concerts, you might get a preeminent ringing in your ear.
Sure maybe losing hearing was a thing I understood. But hearing aids I was prepared for in my 60s. I'm hoping Frequency Therapeutics is successful in repairing hearing.

 

Does anyone feel that their affected ear gets cold?

 

Michael, can hyperacusis go away on its own? This is really upsetting to me as well aside from the tinnitus. I can’t think about not spending time with family and friends because of this. Why is this happening

 

It does get better. Takes some patience, but it does improve.

 

how should I go about improving this? Expose myself to every day noise? I don’t want to aggravate the tinnitus... ugh

 

I started with a controlled environment, where I could manage sound levels. TV and Music on in any room I was in at a low volume, for example. In my office at work, I'd play podcasts at a modest volume, or music that has a wide sound range, like jazz. and over time turned it up to just below my comfort limit. I would advise against headphones or earbuds, its too much sound too soon, just use the speakers on your TV, Stereo, Computer, etc.

I kept earplugs on me when I went out in public for a while to not aggravate the Hyperacusis/tinnitus. Unexpected stuff caused me to have setbacks for a little while early on; but now I'm doing pretty good.

It took months and months and a lot of patience to make the Hyperacusis manageable; but you'll get there.

 

Thanks for this info... I can’t believe this is my reality .

Do you suggest ear plugs while I am at work? I work in an open environment and lots of people, phones, fax machines etc... I hear so many mixed things about this!

 

I couldn’t either. But, looking at my history with being around loud stuff, I learned to accept it, adapt, find patience, and give myself a little grace.

If it makes you feel better/more comfortable to wear earplugs while you’re working on recovery, then do it. I had a set of Eargasm earplugs for a while that I took everywhere. Can be bought on Amazon.

Recently upgraded to a set of Westone TRU Customs molded earplugs. They have custom filters and are really comfortable. They come in a few colors if you want to try to have a little fun with it. You can have an audiologist make the ear molds and order them for you. I upgraded to the 20db filter. Now that the hyperacusis has gotten more manageable/less intense, I only use the ear plugs in case of emergency or when a loud setting is unavoidable.

 

HI @Tara Lyons

Hyperacusis can go away by itself naturally over time for some people. It also depends on its severity and the way a person reacts to it emotionally which can have a profound impact on the condition and tinnitus which usually accompanies it. One can do a lot by helping themselves which I have explained the title of this thread: Hyperacusis, As I see it. I previously sent you a link to this post with other articles I have written. Sometimes additional help is required with an Audiologist that specialises in Tinnitus and Hyperacusis management and this may require regular counselling.

Some people believe Hyperacusis doesn't improve nor can it be cured but this is incorrect. This type of mindset is an assured way of instilling long term negative thinking, and such a person could find it difficult to get better, because they have convinced themselves from the outset their situation will not improve. I once had very severe hyperacusis and often had to ask anyone that I was in conversation with to please lower their voice as my ears would hurt. The hyperacusis was completely cured in 2 years using white noise generators as part of TRT and has remained this way for over 20 years. Normal everyday sounds do not bother me in the slightest and includes road traffic noise. I only use hearing protection when using noise gardening equipment or electric power tools at home.

A forum member told me his Audiologist specialises in hyperacusis treatment. She said all her patients have been cured of hyperacusis by following her treatment plan. This required wearing one white noise generators and not two. According her the brain has only one audio centre for hearing. She also provides regular counselling and treatment takes approximately 18 months. She said the only patients that don't improve are the ones that don't follow her treatment program.

Hope this helps.
All the best

Michael

 

This sounds more like mild to slightly moderate hyperacusis according to Jastreboff's chart. You don't want to know what "very severe hyperacusis" is like, trust me.

Furthermore, I find your post hurtful and ignorant. "Hyperacusis" is no longer a legit diagnosis. Instead, it's used as an umbrella term for probably 10+ different forms of decreased sound tolerances, with different symptoms and probably with very different possible pathologies ranging from the brain to the inner ear and to mechanical dysfunctions in the middle ear. So what might work for one type might not work for another. As of today there are no ways to diagnose any type of hyperacusis so there is no way of knowing beforehand what possible treatment/therapy/surgery will work for what person. You simply can't blame a patient's mindset if sound therapy doesn't work. That is not only mean but absolutely asinine. We here at Tinnitus Talk take pride in being a scientific forum and we simply won't tolerate this ignorance.

 

@lapidus

I do not like you for various reasons and I'm sure the feeling is mutual. Therefore, please have the courtesy and respect to keep off my thread. I have corresponded with Tara quite a few times on this forum. She is going through a difficult time with tinnitus and hyperacusis at the moment, which isn't unusual for someone new to tinnitus but she will improve with time. Please allow me to try and help her.

Take your negativity and impudence elsewhere on the forum because it's not wanted here.

 

This is in no way an answer to anything I wrote but ok. You can give her support without being rude towards patients who didn't respond to sound therapy/TRT. You've been warned before by the admins about patient blaming and posing as an authority on T and H. Please have the courtesy and respect to heed their warnings.

 

I was not corresponding with you and I will write what I believe is correct based on my years of experience with tinnitus, to anyone that asked for my help. I give you a wide berth, yet you continue to be a nuisance because I have struck a sensitive chord, something you and a few others don't like. Now you will be placed on ignore, so you can continue to comment on my posts and I will no longer see any of them.

Michael

 

I've never seen @Michael Leigh "blame" a person's mindset if sound therapy doesn't work them. But I have seen him mention many times that a person's mindset is an important factor. I agree with that assessment, as a person's mindset is a factor in literally every aspect of our lives.

I think Michael has consistently said that tinnitus/hyperacusis is very complex, and each person's case is going to be dependent on any number of different factors. So I would be surprised if he has ever been so explicit to categorically say that someone's failure or success is definitely because of any single factor.

If that's the case, then your comment strikes me as a strawman argument; trying to say somebody said something when they actually didn't. If anybody is able to provide evidence that my understanding of Michael's comments and perspectives is incorrect, I'd be happy to stand corrected.

 

Spoiler

While I find it quite petty to go through someone's posting history, I do think it was important this time since I've agreed with posts that call out Michael. I think many people would react differently to Michael's posts if he at least tried to understand where they're coming from when they disagree with him instead of quickly calling others negative.

 

@Lane

HI Lane,
I am sorry that you have been brought into this but thank you for taking the time and trouble to express, what I consider to be a true representation of how I view tinnitus and the way it can affect a person's mental and emotional wellbeing. I have had tinnitus for many years, corresponded and counselled people with it and also those that have had difficulty with hyperacusis. I will not be browbeaten into submission by the likes of Lipidus and others because of what I write, goes against the grain in what they believe in.

This evening a forum member asked to telephone me as he is having problems with acute hyperacusis. I spent quite a while talking to him and giving advice based on what I know having once endured very severe hyperacusis that was treated, and now completely cured for over 20 years. I visit this forum regularly and get to know the regulars and asked him why he doesn't post? He said due to so much negativity in this forum, he prefers read posts from members that are positive. I am not patting myself on the back here or exulting myself, but it was uplifting to hear him say, he visited this forum today in the hope I was here.

You and quite a few others, give inspiration and hope to many that visit to this forum for help and support. Please keep up the good work.

Take care
Michael

 

just reading that someone beat their hyperacusis fills me with hope....

 

A person's mindset can also be a symptom. One becomes negative because every treatment they've tried doesn't work. The "mindset factor" often invites victim blaming, unfortunately. If we start saying mindset matters a lot, then it stands to reason that if the person isn't improving, they may be doing something very wrong that matters a lot. This all just beats around the bush towards toxic positivity.

For the record, I've had massive ups and downs through all sorts of mindsets. Sometimes I begin an upswing when I'm feeling super negative. Other times, I watch my problem spiral out of control during a positive stretch. Sadly, I don't think mindset matters much.

 

When it comes to hyperacusis this is basically the opposite of what Michael says and that's what's bugging me. According to Michael's posts, there's a one-fits-all solution for hyperacusis (TRT/sound therapy) and if it doesn't work, it's because of your negative thinking. He refuses to realize that "hyperacusis" isn't one and the same thing for everybody but could be many different diagnoses with different pathologies, responding differently to treatments. For example, if someone has hyperacusis due to hypermobile stapes, TRT wouldn't do anything.

Just read his post that I called him out on. He literally writes it out:

As someone who suffers from severe pain hyperacusis/noxacusis and who didn't respond well to TRT (not due to negative thinking, mind you), I feel belittled and mocked by this utter ignorance.

 

@Zugzug

I have no wish to correspond with you due to our previous differences. However, since you are commenting on my thread, I want to make a few things abundantly clear so there is no misunderstanding. When I talk about a person having a negative mindset, I am not victim blaming but rather it is how @Lane has correctly relayed what I endeavour to convey to people. Please read the two posts below.

Thank you
Michael

Tinnitus and the negative mindset.

Whether a person is new to tinnitus or has had it for a while, they will know how debilitating it can be when it’s loud and intrusive. If hyperacusis is present it can make a bad situation worse and I fully understand this, as someone who’s had tinnitus for twenty-one years and once had very severe hyperacusis that has been cured for the passed eighteen years.

I am not going to pretend and say the habituation process is an easy one, although some will find the journey easier than others. My first noise trauma took two years to recover and the second four years. Throughout both ordeals I never allowed thoughts that my tinnitus would never improve or that my life was over to take hold, as I believed negative thinking would reinforce the belief that I faced a future of impending doom. I will admit that occasionally they crossed my mind but just for a fleeting moment and then I’d let them go and direct my thoughts elsewhere. Going out for a walk, playing relaxing music or even doing work around my home brought about the desired effect and helped me to focus on something else.

2010 was a particularly low point in my life as I was having a lot of difficulty coping with the tinnitus and asked my consultant to be candid about my condition, because I felt I had reached a plateau with TRT and wasn’t making any more improvement. Unfortunately it wasn’t as successful as the first time. My doctor confirmed what I had suspected but wasn’t prepared when told, I was the second worst tinnitus patient that she had met in all her years of practicing Audiovestibular medicine. I wanted the floor to open so I could fall in and all my troubles would be gone. I sensed a feeling of dark clouds looming over my head having been told something that I wish I hadn’t asked for.

My doctor said she would never give up on treating me and I was prescribed clonazepam. My recovery was slow but determined not to let the cacophony of noise that at times was tormenting, send me on a downward spiral into oblivion. Although my experience is unique because no two people experience tinnitus the same, it will not be strange to those that have travelled a similar road and come through it to tell their story.

I believe one of the biggest problems a person faces with tinnitus is having a negative mindset. This is completely different from feeling occasionally down or even negative which is something that this condition does to a person as it directly affects one’s emotions but doesn’t take hold or is allowed to fester. Having a negative mindset is not allowing any positive thoughts to come through about your tinnitus. The thought that it will never improve and you won’t respond to treatment takes precedence over everything else. If hyperacusis is present this can be intensified by the overuse of hearing protection, which reinforces negative thinking that even slightly raised sound levels are harmful. If one isn’t careful a fear of sound can develop known as phonophobia, to the point where a person feels scared to leave home thinking environmental sounds will make their condition worse.

Unfortunately it doesn’t stop there as relationship with people often suffers as a person becomes more withdrawn. This can induce depression and one can start to feel angry about their circumstances and vent their frustrations on those nearest to them. It can become an unhealthy situation to be in. Therefore, if person is slipping into a negative mindset, my advice is to seek help by contacting their GP. Perhaps getting a referral to a Hearing Therapist, psychiatrist or counsellor. Someone to talk to before the situation gets out of control.

My purpose for writing this post wasn’t to give an account of what I’ve been through with tinnitus but felt it necessary, to give a little background information as some people might think: It’s alright for you but you haven’t lived my life or know what I have to go through daily with tinnitus. I hope the above information will have given you some insight into what I’ve been through, as I know how debilitating this condition can be when severe. I have counselled people with it and continue to do so. Tinnitus has been around for centuries and like many medical conditions, a cure hasn’t yet been found. However, in most cases it can be successfully treated and there are a variety of different options available, enabling people go on and lead a normal life doing everything that they want to.

Acquiring a positive mindset

A few people have contacted me and asked what do they need to do to be more positive, as they are finding it difficult even though they try not to think negatively when their tinnitus is intrusive. Others are wondering will they improve to the point where the tinnitus will remain low or go away completely and never be heard? Some are worried they might never habituate and this is causing some concern.

The habituation process can be complex and each person’s journey through it will be unique to them. Most people do habituate and are able to carry on and lead a fulfilling life doing everything that they want to. However, it seems some people find this hard to believe and I understand this having habituated to tinnitus twice. On both occasions it required patience, determination and the belief that I would improve even at those times when I felt that I was at my lowest ebb.

Tinnitus can affect our emotions significantly and one must try to remember that. Anything that we can do to bring calm and relaxation into our life will usually have a beneficial effect and make it less intrusive. The opposite is true the more stressed we become as the noise will appear to be louder and more noticeable. Those new to tinnitus sometimes find this particularly difficult and if hyperacusis is present it can add to the dilemma. The whole process can became overwhelming at times but my advice, is to take things slowly and not to push too hard as this will put additional pressure on yourself that you really don’t need it. Whenever difficult times arrive, try accentuating the positive things in your life and focusing on them as this will help maintain your resolve.

For a moment think of the brain as a computer and our thoughts are the software that helps to drive it to enable it to do certain tasks. If the software is not running smoothly and unfettered the computer will not operate correctly. Similarly, if our thoughts are constantly taken up with negative thinking this can eventually have a detrimental effect on our well-being. I am not suggesting never to feel negative about your tinnitus I am saying, try not to allow negativity to become all consuming. Again, this isn’t easy especially in the early stages of tinnitus and takes time to learn but don’t believe that it is unobtainable as this will instill negative thinking.

How many times have you come up against a problem that you have been unable to find a solution to? Given the chance to mull things over for a while or after a good night sleep can often be beneficial. By the next day as if by a miracle, you have discovered an answer or made the right decision about something of importance. I believe this happens because the mind is calm and less stressed. I have heard writers and people that work in the arts, say their best ideas and inspirations comes to them when they feel this way. It’s as if the mind energy is able to expand and reach outwards tapping into some unknown source in the universe. I prefer to be more realistic and see it as when we are calm and relaxed, we are able to think more clearly and positively. Life will usually become easier and less problematic which has to be a good thing.

Whatever type of tinnitus you have, by this I mean the level of intrusiveness. Being able to think positively will have a beneficial effect by making its perception lower and the habituation process easier. Bringing positivity into your life takes time and isn’t achieved overnight. To start this process of acquiring a more positive mindset, I suggest practicing deep relaxation and muscle exercises. When done regularly the benefits will soon be realized and you will surprise yourself at what you will be able to achieve. This form of therapy is often mentioned in tinnitus books to help people with the condition. Likewise Yoga and CBT Mindfulness classes can be helpful.

Deep relaxation and muscles exercises cost nothing to learn providing you can spare up to thirty minutes of your time: three, four or five days per week. Just go to Youtube where there are many relaxation videos to choose and download and some come with narration, so you’ll be guided through the exercises from beginning to end. Once you become proficient at it you will be able to relax at will any time of the day.

Michael

 

@lapidus -- I'm truly sorry to hear how severe your situation is. I'm also sorry to hear how you've felt belittled and mocked by some of Michael's comments. Even though my situation was very severe when I first developed tinnitus and hyperacusis, and much more, I never interpreted Michael's comments in the same way you have. I guess it's one of those mysteries of life where two people can hear or read the exact same thing, and come up with widely differing reactions and conclusions.

From my perspective(s), I've dealt with some very overwhelming health issues most of my adult life before ever developing tinnitus and coming across this forum, and had already come to realize just how important this thing sometimes called "mindset" is--for me. So many times I faced situations where I didn't know how I was going to place one step in front of the other (both figuratively and literally). What I learned during some of these very low times was that literally every single thought, attitude, and feeling I had could (and often did) greatly affect me.

I've since noticed the same thing about my experience with tinnitus. Most often it's just going to do its thing, but there have been times when it's especially bad, which prompts me to take note of my thoughts and emotions. If they're causing stress in my system, I take steps to change it. It's not uncommon to see a correlation between them and my tinnitus intensity. I'm not saying this is going to be the case with everyone. But since it's the case for me, I find myself mostly agreeing with Michael and his take on the importance of how we deal with things.

BTW, @Jazzer has, by all accounts, a very severe and distressing case of tinnitus. But he seems to have found some (creative) coping strategies that work pretty well for him, though I'm not sure he would consider this as working on his "mindset". His successful strategies appear to have more to do with his views regarding love and kindness, and how he's able to focus on those gifts in his life. Not that all his strategies are going to work for everyone, but I think those on this forum who are proactive in exploring many different ways to cope better usually succeed to some degree or another.

I will say however, that I'm a huge believer in the potential of nutritional support of the brain and nervous system to help cope with the extreme stresses of tinnitus and hyperacusis. And if the brain is lacking critical nutrient(s) when a crisis like tinnitus hits, it's less likely that that person is going to be able to improve, habituate, or cope. Even minimal supplementation with things like lithium, niacin, omega 3 foods, inositol, etc., can be miraculous for some people. I'm also a big believer in doing any number of things that can help calm the brain and nervous system, like stretching techniques, deep breathing, and much more.

I may have gone off and rambled a bit. Just wanted to take a moment however to wish you well. Regarding Michael's posts that don't work for you. Perhaps just don't read them. That's what I do with posts by some members on this forum, as it's just not worth it to me to start feeling agitation when I could be doing something else. -- Take Care, All the Best...

 

@Lane

Well said Lane and thank you for writing such a meaning and thought provoking post. It is impossible to please everyone, as there will always be someone that disagrees with what you say or do and I accept that. For this reason I try not to engage in debates in forums, as some people like to dissect argue and challenge everything one says in a post. Therefore, I focus on responding to people that ask for my help.

If a person doesn't like what I have to say that's fine simply don't read my posts or place me on ignore. Please be assured I will not be offended. Whatever I write about tinnitus and hyperacusis is straight from the heart, and is based on many years experience as previously mentioned. I do not claim to be always right but I will not allow anyone to dictate to me what I should and shouldn't say about these conditions or how they affect a person's mental and emotional wellbeing. Lipidus has been a thorn in my neck for quite some time. Waiting on the periphery keeping a low profile but ready to pass a snide comment and be judgemental when I am not corresponding with him. Please check my post history, and you won't find me commenting on any of this posts because we are two different kinds of people.

I am not here to argue but to try and help people if possible as I was once helped in a forum similar to this one. I am of an age where I can't be bothered to play one-upmanship and therefore, Lipidus has joined others who I have had to place on ignore.

Michael

 

That's great for debate.

 

I think mindset is not very important. When I have a cold, I just have a few pills prescribed by a family doctor and the cold goes away.

Neither tinnitus nor hyperacusis can be cured today, unfortunately, and it is sad that there are people trying to sell snake oil like TRT or useless tinnitus supplements for a profit, even more so taking into consideration that those people know that they don't work. Still, they want to make money on the suffering of others.

 

I think a lot of it is just people who are bad at science. I don't think many TRT people even know what they are doing is dubious. I think they really think the patients who really have tried TRT and gotten worse are just crazies.

 

@Michael Leigh
I have tried my pink noise wearable sound generators given to me by an audiologist, on several occasions. Each time, after several days, the hyperacusis became so uncomfortable that I just stopped. And I had it on the lowest noise setting the last time.

In your opinion, do you think it’s possible/probable that this is not for me. I’m open minded to your input.
Thanks.
Laura

 

@LauraK4

It is possible wearable sound generators are not suitable for some people. However, I believe in try, try and try again. Please follow my recommendations below on using sound generators and hope this helps.

Michael

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.

 

If you don't feel ok wearing the WNGs and they make your hyperacusis worse, just stop using them.

As of today, there is no treatment for hyperacusis, and WNGs are NOT a treatment really, since they cannot fix the underlying damage that caused hyperacusis in the first place.

Just as a comparison: it is like having a serious knee injury and being told to start walking again progressively, without previously fixing the knee. In the same way, hyperacusis is often caused by noise induced damage that cannot be fixed. If you cannot fix the cause, you cannot cure hyperacusis. Sad but true.

 

@LauraK4

Hyperacusis is treatable and often curable as in my case. Please read my post above where I have written about an Audiologist that specialises in hyperacusis treatment. All her patients that have suffered from the condition have been cured following her treatment plan.

On you Avatar it reads: cause of tinnitus unknown? Hyperacusis is usually associated with Noise induced tinnitus, therefore, if your tinnitus wasn't noise induced it's possible that you do not have hyperacusis.

Michael

 

White noise generators are controversial. But, if you do feel the need to try them, you need to know that it's supposed to be easy. Don't buy the BS that 90% of people who do TRT improve. People improve from hyperacusis with time.